EU Health Prize for Journalists 2010

Europe for Patients

 EU Health Prize for Journalists 2010 foreword By Paola Testori Coggi, Director General, DG Health & Consumers

The second edition of the EU Health Prize for Journalists gathers another outstanding collection of health articles from journalists in the 27 countries of the European Union.

This year, we have built on the success of last year’s Prize with 42% more journalists taking part – 438 in total. The National juries have had to work especially hard to evaluate 745 eligible articles. This is a rise of 60% since last year. I would like to thank sincerely both the National Jury and EU Jury members for their work and dedication. A special thanks also to colleagues from the Commission’s Representations and from the Directorate General for Translations who contributed to the success of this Prize.

The 27 national winning articles that appear in this booklet are on diverse subjects such as cancer, child birth, migration of doctors and the H1N1 flu pandemic. The issues raised cover the entire life span, with articles on pediatric cardiology and autism through to dementia and hospice care. Many are forward looking, covering for example eHealth and cross-border medicine.

Seven of the final articles are on the subject of organ transplants. This is an important and emotive issue and an area where the Commission can claim a concrete achievement this year. The Organs Directive, adopted in May, ensures that European citizens in need of an organ transplant can benefit from the best possible quality and safety conditions, and that all donations remain voluntary and unpaid.

Another ‘Europe for Patients’ initiative that has taken a big leap forward this year is the Directive on Patients’ Rights in Cross-border Health care which is progressing well in the decision making process. This initiative will make getting medical treatment in another Member State easier and more straightforward.

There is truth in the old saying, “the pen is mightier than the sword”. Journalism is an incredibly powerful profession. It can form public perceptions, attitudes and behaviours. It can even bring about changes in the health system. All the articles contained in this The information contained in this publication does not necessarily reflect the opinion or the position of the European Commission. booklet illustrate the qualities of the highest form of journalism: integrity, objectivity, passion and sensitivity. I am sure you will enjoy Neither the European Commission nor any person acting on its behalf is responsible for any use that might be made of the following infor- reading them. mation.

  index introduction Introduction 7 This is the second edition of the EU Health Prize for Journalists which aims to stimulate high-quality journalism that raises awareness of issues related to healthcare and patients’ rights. EU Jury 8 Winners The prize is part of the “Europe for Patients” campaign, highlighting a series of healthcare and patient related policy initiatives of the Commission bound by a common goal: Italy 12 better healthcare for all in Europe. The initiatives and actions address patient safety, rare diseases, organ donation and transplantation, cancer screening, health workforce, flu and childhood vaccination, mental health, Alzheimer’s disease and other dementias as well as prudent antibiotic use. Czech Republic 18 Denmark 24 The Europe for Patients Campaign and the Journalist Prize are funded under the second community health programme 2008-2013. Austria 30 Belgium 36 In this second edition, 348 journalists from all the 27 EU countries participated in the competition submitting 745 eligible articles published in printed or on-line media between Bulgaria 40 16 June 2009 and 18 July 2010 in all official EU languages. Cyprus 48 This number includes all members of team entries, where an article was written by more than one journalist. 399 journalists submitted articles through the online entry form Estonia 54 either as individual journalists or on behalf of their team. A vast majority of journalists was female, the ratio being 74% women compared to 26% men. Following this trend, Finland 58 the national finalists were also mainly women: out of the 34 finalists there were 27 women and 7 men. The average age of journalists in the competition was 37 years. France 66 Germany 70 The second edition was very successful in terms of participation: many more articles were submitted compared with last year: 60% more! Also, more 42% more journalists Greece 76 took part. Hungary 82 The selection of the winner was a two-step procedure: Ireland 86 1) National juries, one for each Member State, met under the chair of the Commission Permanent Representations during the summer and selected one national nominee. Latvia 90 2) The EU jury met on 28 October 2010 to appoint the winner and two runners-up of the EU-wide award. Lithuania 96 Luxembourg 100 First Prize: Gianluca Ferraris and Ilaria Molinari: Stealing Hope (Panorama, Italy) Malta 104 Second Prize: Lucie Hášová Truhelková: Love Dwells in the Kidney (MF Plus, Czech Republic) The Netherlands 108 Third Prize: Kasper Krogh, Morten Crone, Line Holm Nielsen and Jesper Woldenhof: The Great Failure (Berlingske Tidende, Denmark) Poland 112 This booklet features the 27 nominated articles in English , pictures and biographies of the finalists and the jury members from all over Europe. Enjoy the tour through European Portugal 118 health journalism! Romania 124 Slovakia 132 If you wish to read the nominated articles printed in this book in their original language, please consult our website under http://ec.europa.eu/health-eu/journalist_prize/2010/ Slovenia 136 index_en.htm . Spain 142 All the national finalists, together with several editors and jury members were invited in Brussels on 30 November 2010 to participate in a tailored media seminar on EU health Sweden 146 issues and the Award Ceremony. They met the Commissioner for Health and Consumer policy, John Dalli, and the Director General for Health and Consumers Paola Testori United Kingdom 156 Coggi, who awarded the prizes. National Juries  For more information about the Europe for Patients campaign and the Journalist Prize please visit the website: Rules 193 http://ec.europa.eu/health-eu/europe_for_patients/index_en.htm

  eu jury eu jury

Andrzej Ryś, Lieve Fransen, Despina Spanou, Harro Albrecht, Emilio de Benito, Anita Kazai, Chair European European Journalist Journalist Journalist Commission Commission

Andrzej Ryś joined the European Dr Lieve Fransen is the Director of Despina Spanou is since 1 April 2010 Principal Harro Albrecht is a Medical Doctor, Emilio de Benito studied Chemistry Ms. Anita Kazai is the medical editor Commission in June 2006 as the Directorate for Representations Adviser at the Directorate-General for Health and MD and is Medical Writer/Editor with (specialising in Biochemistry) at for the Hungarian Medical Tribune, Director in Directorate “Public Health and Risk and Networks in the European Commission’s Consumers. She works on policy and communication the German Weekly DIE ZEIT. Harro was Science the University Complutense in Madrid. From 1985 before which she worked as a freelancer and editor Assessment”, in DG “Health and Consumers”. He is Directorate General for Communication since and chairs a number of stakeholder fora, the Platform Editor with the German Newsmagazine DER SPIEGEL to 1999 he was employed as a Business System and for several hungarian dailies and magazines. She a medical doctor and graduated from Jagiellonian October 2007. Dr Fransen joined the Commission for action on Diet, Physical Activity and Health, the (1999) and with the Swiss Weekly SonntagsZeitung Product Supporter with IBM. In 1999, he received had also worked for the Drug Focal Point, setting up University in Krakow, Poland. He specialized in in 1993 and headed the social policy department High Level Group on Nutrition and Physical activity, (1997-1999). He was a Nieman Fellow on Global his Master degree in Journalism and started working an early warning system and making the Hungarian radiology and public health. In 1991 he established after founding and directing a global development the Alcohol and Health Forum and the Sherpa High Health Reporting 2007 at Harvard University and as a Health/Science Journalist for EL PAIS. From drug monitoring system compatible with the EU’s. the School of Public Health (SPH) at the Jagiellonian foundation the EC AIDS Task Force in 1987. A Level Forum on the Competitiveness of the food is publishing articles concerning Golbal Health and 2008 to 2009 de Benito was a member of the Board She holds a degree in General Medical Sciences University and he was the SPH’s director until 1997. medical doctor by training, she practiced in Europe chain. Public Health matters on a regular basis. He has of the Spanish Association of Health Journalists. In from Semmelweis University of Medicine and had From 1997-1999 he served as director of Krakow’s and the developing world from 1975 to 1983 she She was previously the Deputy Head of Cabinet been a Temporary Advisor to WHO on Media and 2007, 2008 and 2010 he worked as professor of trained at the school of the National Association city health department. In 1999-2002 he became was in charge of policy research at the tropical for the European Commissioners for Health Mr. Bioterrorism. Health Journalism at the Universities Carlos III and of Hungarian Journalists. Her main interest is the the Deputy Minister of Health in Poland. In 2003 he institute of medicine and defended a PhD in Public Kyprianou (2004-2008) and Mrs. Vassiliou (2008- Complutense. Since 2009 Benito has been in charge function of the brain/mind, and its connection with established and directed the Centre for Innovation Diplomacy in 1987. She has broad experience in 2010) and was closely involved with the Europe for of the Health section for EL PAIS. the body and environment. and Technology Transfer at Jagiellonian University. strategic planning, resource management, policy Patients campaign as well as the establishment of He was also a chief editor of the Journal “Health coordination, development issues and diplomacy the EU Health Prize for Journalists. and Management”. through health. She is a qualified lawyer and holds a Ph.D in European Law from the University of Cambridge

  eu jury winners

Geoff Meade, Lidia Georgieva, Ilona Kickbusch, Journalist Health expert Health expert

Geoff Meade is the Europe Editor of Lidia Georgieva obtained her Prof. Kickbusch is the Director of the Press Association, the UK and MD in Varna Medical University, the Global Health Programme at the Ireland’s national news agency. He Bulgaria, Master of Philosophy Graduate Institute of International has been based in Brussels since 1979 and is an from the University of Cambridge, UK, and Doctor and Development Studies in Geneva. She advises expert on European Union affairs. of Philosophy from Open University, London, UK. organisations, government agencies and the private As well as reporting on every aspect of the EU’s Lidia Georgieva holds the position of Director of sector on policies and strategies to promote health activities for the past 31 years for PA, he is also Department “Programs and Projects” in the Ministry at the national, European and international levels. a well-known columnist, with a regular column in of health. She is a lecturer in University of National Her key areas of interest are health in all policies, E!Sharp magazine, and has just published his first and World Economy, Bulgaria and New Bulgarian the health society and health literacy, global health book, ‘All in a Day’s Shirk’. University. She has worked as a Senior Advisor and governance and global health diplomacy. Geoff is also a European Correspondent for Deutsche Head of the Health Risk Management Department Welle World Television, and is a speaker and chair in Marsh Bulgaria from 2006 to 2010. at conferences and seminars on EU affairs. Before, she was Head of the Department of Preventive Medicine, Assoc. Professor, in the Medical University, Sofia.

10 11 Gianluca Ferraris was born in Genoa EXCLUSIVE – STEM CELLS 2009. The list has exposed 31 centres – in Brazil, Russia, Mexico, the Philippines and elsewhere – offering stem cell therapies without any scientific basis. and lives in Milan. He got a degree First Prize STEALING HOPE We ended up discovering promises of therapies that in many cases sounded at in Political Science in 2002 and spent best half-truths, if not a downright swindle or bordering on the incredible. For the three years working and studying in the All you have to do is believe in it, be desperate and ready to pay. And pay a investigation, we had real doctors tailor-make fake medical records for “Andrea”, small fortune: between 7 and 36 thousand euros. “Healing clinics” promise “Ilenia” and “Claudio”, to be submitted to four such centres. They all promised United Kingdom. He started working winners unproven therapies for Alzheimer’s, Parkinson’s, depression and multiple they would take care of our distressed “relatives”. All we had to do was pay. sclerosis using cells derived - in some cases - from animal foetuses. Panorama in a small local press agency and then continued as submitted a number of fake medical records to 4 such centres. The results LEMANA - SWITZERLAND a freelance correspondent for daily newspapers. In border on the incredible. Our first destination is Montreux, Switzerland. We’re on our way to the Lémana health 2001, covering the G8 summit in Genoa, he started centre, with a video camera hidden in our bag. The clinic’s website boasts of the hey have promised us a lot. They would take care of our cousin Andrea, who suffers Cellvital therapy – a series of stem cell injections which, apparently, can cure anything, his cooperation with “Panorama”. Tfrom muscular dystrophy and is confined to a wheel chair. Our sister Ilenia would from a general lack of energy to depression, from a weak immune system to sexual recover from depression. Uncle Claudio, a 72-year-old Alzheimer’s patient, would start impotence. If you are over 35, it’s also an excellent anti-ageing treatment: one which, remembering once again to turn off the gas and shut his front door. All we had to do for best results, should of course be repeated on a regular basis. Ilaria Molinari was born in Rome and lives in was take them to the Ukraine, Switzerland, Thailand or China and let them have a few stem cell injections. “From a scientific point of view, this is nonsense”, says Giuliano Grazzini, general Milan. She holds a degree in Political Science director of the National Blood Centre, with astonishment. “Injecting cells of another These cells are taken from umbilical cords, the bone marrow of adults, human foetuses species into a human being has no scientific basis and there is a risk of immunological (La Sapienza, University of Rome) followed by a or even rams and lambs. The treatments have a price tag ranging from 7,500 to 36,000 reactions and intolerance due to toxicity. This is sheer madness”. euros. This is a lot of money, of course, but not too much for those who, like myself, National would pay any sum of money if only their loved ones could once again walk, smile or Degree in Communications (Pontificia Gregoriana We e-mail the clinic asking for help for Ilenia, our imaginary 30-year-old sister. After University of Rome). She has worked for the Italian think clearly. ten years, her fiancé has deserted her and she has fallen prey to a bad depression with suicidal tendencies. She can only sleep if she takes massive doses of Lexotan. She’s newspapers “Avvenire, “Milano Finanza” and “MF”, Fortunately, Andrea, Ilenia and uncle Claudio are only figments of our imagination, been seeing a psychiatrist but with no sign of improvement. Lémana’s offer of help winners whereas these “last hope clinics” do exist. They promise to cure just about anything, arrives within two days. We’re invited to fill in a form where, even before giving Ilenia’s doing substantially investigations in the economic from epilepsy to baldness, Parkinson’s disease and stress, MS and even male impotence. clinical details, we’re supposed to choose the 3 or 5-day option for her “revitalisation arena. Their secret recipe? Stem cells. program”. The leaflet stresses that with both the therapy is the same, but the longer option would allow her to recover from jet lag (um … for someone arriving from Italy?) It hardly matters that the success stories involving these cell treatments have not while “discovering the magnificent Lake Geneva Riviera”. yet been clinically proven. “A whole flourishing market catering for hopeless patients Currently, both of them work for “Panorama has developed around these hypotheses”, warns George Daley, president of the As for the accommodation, we can have a single or a double room (with or without Economy”, a weekly economic newsmagazine International Stem Cell Society. A good example of this is Stamina Foundation in Turin, a lake view) or even a suite. We opt for a double room with a lake view, hopefully where Davide Vannoni, a professor of psychology, used to sell these kinds of therapies Ilenia will be feeling less depressed there. More questions: would we like a room for and “Panorama”, an Italian newsmagazine doing for 50 thousand euros to patients in Italy and abroad. Raffaele Guariniello, Turin’s smokers? (in a clinic!) Do we need a limousine? Thanks, but we are not interested. public prosecutor, has charged him and eight other suspects with criminal conspiracy There are three easy payment options: cash, bank draft or credit card. A 2,000 euro investigations on politics, health, economic and concerning violation of the clinical trial regulations (see box on page 48). deposit is required. financial scandals. Panorama conducted a 2-month dialogue with these “merchants of hope” in an attempt Turning the page, we find a questionnaire about Ilenia’s physical and psychological to understand who these people are and how they work. One of the starting points for symptoms, vaccinations, diseases and previous cell treatments. We fill it in and send Italy our inquiry was the guidelines published by the International Stem Cell Society in 2008 it back by e-mail. The following day they get back to us. The only doctor in the clinic to warn patients. Another was the blacklist drafted by Stanford University in October

12 13 phones us and, even though she does not speak Italian, what she tells us in French is pretend he suffers from Parkinson’s and fill in an online form to receive an answer by his life, such blows can obviously undermine sick people’s likely fragile state of mind. absolutely safe. The patients we’ve treated have been able to lead normal lives for enough to reassure us: “I cannot guarantee that Ilenia will recover completely, but, if e-mail in less than 24 hours. In her broken Italian, doctor Hossner explains that the weeks afterwards”. this therapy is combined with her other treatments, it can help reduce her medication German clinic implements “clinical and laboratory standards which are regulated by the BEIKE - SWITZERLAND This is hard to believe, bearing in mind what experts say: “The therapies proposed by and perhaps even make it redundant”. German legislation on medical interventions”. She goes on to stress that autologous Beike are based on injecting cells derived from the blood in umbilical cords”, explains adult stem cells “do not pose any threat of rejection or contamination with external We’re back in Switzerland, this time in Lugano. In a small office block a stone’s throw Giulio Cossu, professor of histology at the Università Statale of Milan and a member Excellent news – we make an appointment. “You will find us on the fourth floor at viruses”. Very reassuring. She then invites us to contact her and make an appointment from the casino we find the European seat of Beike, a medical research giant from of the International Society for Stem Cell Research, which has drafted the guidelines the Royal Plaza in Montreux”. No, there is no mistake, the clinic is in a hotel, with a for a free consultation, the rest will be decided afterwards. China which since 2006 has been offering stem cell therapies to European patients (as for stem cell trials in Europe. “However, these cells cannot reproduce neurons so they hall richly decorated with mirrors and stuccoes. The medical centre itself is in room well as in its clinics in Shenzen (China) and Bangkok, Thailand). cannot possibly have an impact on patients with Alzheimer’s or Parkinson’s”. 411. The floor is covered with light fitted carpet, it smells nice and there is a relaxing But this time we are not going to react: clearly, the whole thing reeks of superficiality atmosphere. As we go in, we see an examination couch and a facial cleanse lamp on and inaccuracy. A quick search on the internet shows that the same e-mail has been So far the Stanford researchers have labelled Beike’s work “unproven”. And yet, every Feigning complete ignorance about this, we put the same question to Mr Mazzoleni. the left-hand side. This looks more like a beauty salon than an oasis of hope for the sent to dozens of other potential patients over the past few years. But since Xcell is month the European branch receives 200 requests to treat conditions from amyotrophic He seems to prefer looking at it from a slightly different perspective: “We’ve treated chronically depressed. relatively close by and their treatments cost less than other clinics (between 7,500 lateral sclerosis (ALS), to muscular dystrophy, as well as neurodegenerative diseases over 6 thousand such cases – no-one’s ever got worse or had side effects”. Right, but and 26,500 euros), it has become one of the most popular destinations for European like Alzheimer’s and Parkinson’s. what about getting better? “Well, in the worst-case scenario, the patient will remain After asking about Ilenia’s condition, the doctor comes to the point: “We inject cells patients, including from Italy. stable, but with the benefit of being stronger, since the cells regenerate the organism”. derived from animal foetuses which have been treated in the laboratory”, she explains. So, as we want to shed light on this affair, we add Alzheimer’s (uncle Claudio) and And this is not all: “In some MS cases, the lesions have disappeared and within three “These proteins are rich in essential oils and vitamins”, she adds. Shivering at the After the Germany TV channel ZDF broadcast a report last August showing how these muscular dystrophy (cousin Andrea) to our fake medical records. We’re contacted by hours of their first injection our patients could actually move their arms. There may thought, we ask which animals they use. “Rams and lambs”, she replies. Apparently, journeys of hope mostly have a palliative effect, the German Society of Neurology Andrea Mazzoleni, vice-president of Beike Europe and company spokesperson, and not be a guarantee of a general improvement but a positive outcome can reasonably these animals offer the best compatibility. Once we’ve got over our initial repulsion, distanced itself from Xcell, forcing it to remove incorrect information from its website and Gianni Demarin, head of communication. be expected”. the rest is no big deal. Our sister will have to remain in the hotel (sorry, clinic) to be asking the Ministry of Health to monitor the case. “There is no evidence whatsoever of So then why are the results never quoted by international organisations or medical given four intramuscular injections and then have plenty of rest. The doctor says the the efficacy of such treatments. Unfortunately, no authorisation is required to perform They’ve been working together for three years. Mr Demarin has in the past been a DJ reviews? “Actually, we have tons of research but it’s all in Chinese”, he confesses. “The new cells reactivate the organism and stimulate both body and soul. “However, the them”, explains Reinhard Prior, professor of neurology at the University of Düsseldorf and a fashion sales rep, and Mazzoleni, 56, also has an “interesting” background – as legislation is rather lax over there, the authorities are not too rigorous about ethical treatment can only be successful if the patient is receptive and really wants to benefit and world expert on neurodegenerative pathologies. a businessman, in 2006 he was elected to the lower house (Camera) of the Italian issues or licensing agencies”. He seems to believe this should reassure us. from it”. In other words, if our sister doesn’t get better, she’ll be the one to blame parliament representing the “Italiani nel mondo” party (Italians abroad), and in 2007 because she wasn’t sufficiently committed. Indeed, the details given by doctor Hossner about the treatment for uncle Claudio he found himself in trouble with the Swiss courts. He even claims that “two or three MS patients could be considered to have been cured”. leave us with more than one doubt: “The stem cells are recovered from the patient’s “Mind you, he adds, these were young patients with strong motivation and ample We ask about the fee. Laurent is just a phone call away: he shows up in a blue suit bone marrow. After the graft, they will transform and regenerate the damaged tissue. At he end of 2007, the Gulliver clinic in Lugano, where he was administrative director, financial means”. That is, 32 thousand euros. This is what he’ll charge us for 28 days and, speaking in a shrill voice, to give us all the details. A 3-day treatment costs An innovative stem cell treatment draws on the body’s self-healing potential”. This may was charged with medical insurance fraud concerning inflated billing for day-treatments. in the B. Care medical centre in Bangkok (flight tickets not included). The fee includes 6,550 euros. For five days, the fee goes up to 7,550 euros. This doesn’t include sound like a miraculous cure, but in reality there is no such thing. “Conditions such Mazzoleni spent 25 days in jail and eventually the case against him was dismissed. a room with a bed for our uncle and a foldaway bed for a family member, all the meals accommodation: a double room with a lake view costs 310 euros a day. Full as Alzheimer’s and Parkinson’s affect the nervous system”, counters Angelo Vescovi, However, his nursing licence was revoked and the clinic had to shut down. for the patient (though the brochure says there’s a McDonald’s just around the corner board is an extra 95 euros. It all adds up to 7,765 euros for three days or 9,575 professor of cellular biology at the University of Milano-Bicocca. “Claiming that stem for family members), including three bottles of water and a fresh towel every day. euros for five days. Those few injections of ram or lamb cells don’t come cheap. cells grafted in the bone marrow can reach the damaged spot and repair it sounds like We make an appointment with him to discuss the treatment for our uncle. The place science-fiction”. He then adds: “In future, stem cell therapy might be able to stop the looks sterile: there are no traces of syringes or test tubes. Mr Mazzoleni immediately In any case, we should not consider it a traditional hospital treatment but rather a XCELL – GERMANY degeneration process. However, it’s unlikely that it will be able to restore nervous tissue sets the record straight: “We only put our clients in touch with the facility. The Chinese “therapeutic stay in a studio connected to a hospital”. The treatment will consist of six that’s already dead”. are in charge of testing, screening and operations and you can’t imagine just how intravenous spinal injections which will be administered in the patient’s room. Then, Next, we decide to have a look around the only clinic in the EU that’s been put on fussy they’ve become”. Indeed, Beike claims that over 60% of all potential patients are he will have to get plenty of rest. The brochure lists all the major tourist attractions - Stanford university’s blacklist: Xcell, in Germany. The Italian version of this private One of Panorama’s witnesses proves him right. Salvatore T. is affected by cerebellar rejected. Clearly, uncle Claudio is one of those who can benefit from their treatment: bazaars, theatres, museums – but it’s rather unlikely we’ll have time for them because clinic with centres in Cologne and Düsseldorf is all about scientific seriousness. Their ataxia, a disease attacking the cerebellum and impairing coordination of movement, though if this was the case, it would be an unprecedented breakthrough in medical “there are no nursing assistants in Thailand, patients have to rely on their family’s website announces that “since 2007 over 1,600 patients with the most varied medical walking and speech. To this day it is incurable. However, when Salvatore contacted history. help”. conditions have benefited from our proven treatment”. Trouble is, there are no traces Xcell last September, his case was accepted. “The German doctors claimed that 60% of of the results in any scientific review. the patients with my condition had got better”, he tells us. “At the end of the treatment The scientific community agrees that Alzheimer’s disease is irreversible, especially when Another thing: hopefully we speak English so we can talk to the “few staff members” I was told that the quality of my cells had improved. At that time my expectations it’s been ravaging a patient for four years. “Even stem cells can’t do miracles, otherwise who speak the language. If not, no need to worry: Ms Sripaisalmongkol is available to One type of condition the clinic claims to treat is neurodegenerative diseases. All we were sky high”. Four months later he feels nothing but frustration: Salvatore has had we would already have won 24 Nobel prizes”, he chuckles lighting up a cigarette, while translate, her rates can be negotiated on the spot. have to do is retrieve the fake records about our imaginary 72-year-old uncle Claudio, no benefit from the treatment. And even though he says he still wants to fight for his secretary pours whipped cream into his coffee. “Anyway, the cells we use here are

14 15 Of course, our expenses are unlikely to be reimbursed by the national health system. “For years, EmCell’s only response to repeated international requests for clarification How to avoid internet scams “You should put in a reimbursement claim, anyway”, suggests Mr Mazzoleni. “It’ll be has simply been to produce the same video testimonials with patients claiming to be turned down but if you lodge a formal complaint, we’ll provide you with the necessary feeling better”. Before turning to a medical facility on the internet, seek the advice of your patients’ supporting documents … Ideally, you should ask a lawyer to see to it. We have a very association or have a look at http://stemcells.nih.gov, which lists all stem cell therapies good one in Como”. We fill in two online forms: one for Andrea, a 22-year-old suffering from Becker muscular that have been scientifically proven. dystrophy, and another for uncle Claudio, a 72-year-old Alzheimer’s patient. Less than In this case, it’s best to “have a doctor in your circle of friends who can declare that two days later we receive a reaction from Ms Yuliya Panas, senior researcher at EmCell. If you want to check the authenticity of an institute or its medical staff, go to http:// your uncle could benefit from a stem cell treatment abroad, that’s the trick”. Actually, Both her replies are in English, both very similar and professional-sounding. She explains www.ncbi.nlm.nih.gov/pubmed, which lists all the main studies on stem cells. You only rarely do these treatments bring any benefit. To find the truth, you have to look that the centre needs a more precise clinical picture of the patients who wish to follow should be wary of any institutions that have never published any. beyond the moving testimonials given (often anonymously) by patients about their the treatment: personal details, medical records, prescriptions, x-rays. However, just a healing (shown regularly in Beike Europe adverts online and on TV), and listen to the few lines further down her email, the clinic’s pseudo-professional approach vanishes: All websites must give details about the type of stem cells used (whether they are people who have had no benefit, who’ve been let down. “If you don’t have all the details, just send us whatever you have”. adult, embryonic or taken from umbilical cord blood) and their origins. And they should indicate whether they keep a patient registry to provide case classification and post- You can find them networking on Facebook. Last April, some of them took part in the Uncle Claudio’s case is sorted out quicker than Andrea’s. After we have e-mailed some treatment monitoring. If not, any testimonials by patients claiming to feel better should investigative consumer affairs TV programme Mi manda Rai3 and six of them from extra details, the following morning our uncle is admitted to the treatment, even be treated with suspicion. Italy have sued Beike Europe. though nobody has ever seen him or done a medical check-up. “The cell therapy stops the degenerative processes associated with Alzheimer’s disease”, we are informed – Another option is to use the search engine on www.archive.org to check when a site According to Panorama’s sources, the cantonal police in Lugano are currently although “it’s impossible to restore the memory, which has already been damaged”. was first created, who runs it and how many times it’s been updated. Or use Google’s carrying out an accounting investigation into the clinic. “We have enemies because advanced search function to find pages linked to the clinic’s site: if the site is not linked we are inconvenient”, complains Mr Demarin on the telephone when replying to Eventually, we get more details: “The transplant involves injecting stem cells retrieved to by public hospitals, universities or other reputable medical bodies, it’s most probably our request for help for Andrea, our 22-year-old cousin with muscular dystrophy from foetuses which have been aborted legally and voluntarily”. The trouble is, just a scam. (Beike book a treatment for him even before we’ve given them the green light). comments Buccella, “there’s no evidence of pre-clinical studies, no patient registry “We’re jeopardising the interests of pharmaceutical companies that have been recording any incompatibility, no monitoring of treatment standards”. profiting from research funds for the past 30 years”, he continues. “They want to discredit us because we upset huge interests, none of them really care about the The only images of the premises, shot by BBC in 2005, show a place that can only be patients”. Beike does care about patients – just those with 32,000 euros to spend. described as ramshackle, with dirty corridors and old, dilapidated equipment. Anyway, we’re so worried about uncle Claudio that not the slightest doubt about the ethics or EMCELL - UKRAINE scientific soundness of the treatment has crossed our minds: we press on, asking Dr. Panas for more information. Our last stop is Eastern Europe: EmCell in Kiev (Ukraine), the clinic where they use stem cells derived from aborted foetuses to sell treatments for sclerosis, sexual “The day-hospital treatment costs 8,000 euros. Board and lodging are not included”. dysfunction and AIDS-related complications. The clinic was founded about ten years And then she reels off a whole list of tips which make her sound more like a tour ago by doctor Alexander Smikodub. The Italian version of their website says that “so operator than someone who’s taken the Hippocratic oath: “The airport transfer is far we have performed almost 3,000 transplants. For many conditions the quality of arranged free of charge. We can book you into a hotel or an apartment during your our treatment has proved to be statistically better than most other therapies using stay in Kiev. A minimum stay of three days is required”. In other words, it’s a package traditional methods”. deal, including a receipt of payment. Could it be that this time the treatment is covered by the national health system? Unfortunately not: “None of the treatment is covered And there’s more: “With many incurable diseases, when medicine has nothing left to by your health insurance”. Just as well we – unlike many of the clinic’s unfortunate and offer, these treatments give hope, improve quality of life and prolong our patients’ vulnerable patients – never had any intention of paying. lives”. The small problem with all this is that there’s no scientific evidence. “Always supposing that this therapy does exist”, says Filippo Buccella, the president of Parent Project, a non-profit organisation promoting research on Duchenne syndrome, a form of dystrophy which Smikodub has been claiming to be able to cure since 2005.

17 16 Lucie Hášová Truhelková lives in Prague. of it the doctor told me he could see no reason why not to do the transplant,” Radka Love dwells in the kidney remembers. At ICEM they immediately told her about the possibility of a transplant She graduated from the Czech College from a living donor. “We did already know about that possibility thanks to some articles Second prize in the newspapers, but until then we’d had no idea that Radka could actually go for the of Journalism in 2005 and received a “Organ donors” - that is the ironic nickname sometimes given to motorcyclists transplant,” says Radka’s mother Marie. Straight away she went for an examination to who perform daredevil manoeuvres on the roads. But the real heroes are determine whether her daughter could have one of her kidneys. The results of the tests BcA Degree from the Literary Academy those who decide to donate part of themselves while still alive, knowing were positive. “I wasn’t afraid of the operation at all because I was happy I could go in 2008. She co-authored a book of winner that for the rest of their lives, often for decades, they will have to live for it,” says Marie. “Only after it was over did I realise that maybe there was something without that organ. For them, though, saving the life of a loved one is far to be afraid of. But it’s such a beautiful thing! There’s no better gift.” interviews with Second World War witnesses called more important. Radka, on the other hand, was worried on the eve of the transplant operation - not for “The Book of Survivors”. In 2008, Truhelková here is a worldwide shortage of organs coming from deceased donors, and the herself, though, but for her mother, because removing the kidney from the donor is a published the book “Interviews about mothers and TCzech Republic is no exception to the rule. Many of those whose kidneys are now more difficult surgical procedure than subsequently transplanting it into the right lower failing will wait in vain for new ones. Every second day, they spend hours in dialysis. abdomen of the recipient. Nonetheless, despite the postoperative pain Marie came to motherhood”. This year, she received the Czech They can hardly drink, and may not have urinated normally for several years. And they her daughter’s room on the very day after the operation to help her into the shower. can only wonder, when they hear of a car crash on the evening news, whether the call Radka had met with some unforeseeable postoperative complications, water on the Psychiatric Societies Journalist Award for anarticle won’t finally come from the transplant centre. And meanwhile, that new kidney which lungs, which were hindering the functioning of her new kidney. Soon enough, though, they could receive might well be just a few feet away, because in the case of paired the full functioning of the kidney returned. Two weeks later Radka was able to go home on panic attacks. organs a living person can also donate, without suffering any ill effect to the quality and from the hospital (to her mother Marie, who had been released after five days) and length of their life. The donor could be a parent, a sibling, even a grandparent, spouse, her kidney is still functioning today. How long it will continue to do so, no one knows partner, or friend ... But a lack of awareness still frequently means that the potential for sure. If all goes well, it could easily work for another twenty years. But what then? National donor merely sadly looks on as their loved one languishes in front of them. Meanwhile, “I tell myself that science is always making progress,” says Radka optimistically. “So at the beginning of this year the Institute of Clinical and Experimental Medicine (ICEM) maybe when I eventually need another kidney, I’ll get a stainless steel robotic one!” celebrated its three hundredth kidney transplant from a living donor. The success rate of the operation is astounding: 98 percent. “One kidney can reliably suffice for Even though they are healthy and can live normal lives, both women are careful not winner a person’s life needs and adequate renal functioning,” says Iva Brůžková, coordinator to overdo it and risk anything. Radka jokingly chides her mother: “I have to watch her. of living donor kidney transplants at ICEM. “This single kidney may, however, also be She’s already forgotten about the operation two years ago, and she’s lugging around affected by disease, but the risk is very small. And because donors are then regularly heavy objects!” To which Marie and Radka’s boyfriend laugh: “And Radka goes around monitored for the rest of their lives, any potential diseases are most likely identified without her slippers on!” and treated in time.” All of them radiate happiness, even though Radka not long ago lost her baby. Pregnancy The best gift for my daughter is a bigger burden for a woman with one kidney, but it’s not impossible. Radka and her boyfriend wanted a child, and when ICEM gave them their support they decided to go Twenty-six year old Radka Trvajová from Napajedla in Moravia was born with renal ahead. Everything was going well until suddenly in the fifth month the foetus’s heart impairment, but this was only realised ten years ago. At twenty-two she had to start stopped beating. “It wasn’t confirmed that it was because of the kidney. It happens, going for dialysis in Zlín, and the indifference of the doctors there nearly had fatal we were just unlucky. But don’t worry, we’ll keep trying, and next time it will work out,” consequences for her. “I asked about the possibility of a transplant several times, but Radka says resolutely. She knows that it’s worth it to keep on fighting and not give up I was always told it wasn’t possible,” says the blue-eyed brunette. “I even arranged a hope - a few years ago it saved her life. consultation with a doctor in Brno, but he didn’t even examine me. He just read through my case history and said the same thing as the other doctors: lifelong dialysis.” By the Transplants and the full moon time Radka’s mother, on the advice of a friend, arranged a consultation with a kidney specialist in Prague, Radka had almost given up hope. But the doctor examined her Kidney transplants from living donors have several advantages compared with those and immediately telephoned ICEM to ask whether the young woman could be given from deceased donors. The results are better, and they also resolve the shortage of Czech Republic a more detailed examination. “I was hospitalised for about a week, and at the end 18 19 donor organs. “A healthy person does take a certain risk when giving someone their complement each other - one full of laughter, the other rather dour. When lifelong A friend in need is a friend indeed an eye on each other: “We hold hands when we’re going home from the pub, so we kidney,” says Dr. Eva Pokorná of ICEM. “But the chances of success are great, and so optimist Jiří gave his kidney to Jan, nine years his junior, he had just turned seventy don’t fall over and hurt ourselves!” Then he speaks more seriously again: “I’d definitely from an ethical perspective it’s clearly justifiable.” Donors also have no financial or years of age. But Jiří is not in the habit of worrying about his age - on his motorbike A person can be a suitable kidney donor even without being a blood relation of the do it all again. It helped him, he’s happy. We’re like brothers.” To which Alain butts in: other material benefit from their act. “Just” a good feeling and their loved one restored he shoots off from Prague to his cottage in Vysočina like a teenager. It’s now two and recipient. In such a case, though, the law on organ transplants requires that both “Of course he’d do it again! And when this kidney packs up on me, he’ll give me the to health. The law prohibits trafficking in organs. a half years since the brothers’ operations. parties must go before an ethics committee. This committee is established by the other one!” They both chuckle. So that’s what real friendship looks like, come what director of the hospital, and its task is to find out if a donor was pressured into donating may. Hollywood, eat your heart out. In addition to the fact that with a transplant from a living donor you don’t have to Man of action Jiří refused to accept that Jan was hardly eating, was pale and could an organ or is doing it for money. wait months or even years until the transplant centre has a suitable kidney available, barely walk. Thanks to his efforts, they learned about the possibility of kidney donation. And so, eight years ago, Martin Odvárka and Alain Kajan, two friends from Třebíč, Donors can change their minds while destroying your body in dialysis, another plus is that the operation is planned The only obstacle to his plan was their mother, who at that time was ninety-three years found themselves before just such an ethics committee. “They asked us if we “liked” down to the last detail. “The donor and recipient are given full examinations and old. “She was living with me at the time, she was mentally fit, and I knew that as long each other and stuff like that,” says thirty-nine year old Martin, shaking his head. “It Although at first glance it may not look that way, for the doctors, the donor and the the recipient starts taking immunosuppressants several days before the transplant as she was alive I couldn’t do it. If she’d known that the two of us were going for an wasn’t very nice. I said we were just friends and that if I could help I’d be glad to. Later donor’s health are always the top priority. “The fact that the operation will help the operation. By the time the recipient goes for surgery their body has an effective level operation like that, it would have killed her for sure,” says Jiří. When the old lady died, Alain and I laughed about it, how they tried to find out if we were gay!” The two friends recipient is excellent, but the priority issue is that no harm should come to the donor,” of these immunosuppressants and accepts the kidney better. The operation doesn’t though, he didn’t procrastinate very long, and dragged Jan to ICEM to ask what the have known each other since their teens - as it happens, roughly from the time that says Dr. Eva Pokorná. “And that means both from the short-term perspective - i.e. end up being performed at three o’clock in the morning and it is carried out by a well- options were. “The receptionist called up the coordinator Iva Brůžková and sent us to Alain started having problems with his kidneys. “It started with me getting the flu, I had as regards the operation itself - and from the long-term perspective of life with one coordinated team of the most highly experienced professionals,” says Dr. Pokorná, consulting room number three. A moment later the door opened, Iva took a look at us such a bad chill that it went into the kidneys and that started an inflammation, which kidney.” If a young woman comes to us to ask about the possibility of donating organs listing the advantages. “The period of ischemia, i.e. when the kidney is outside the body, and said: “It’s you two, right? Come on in then, I’ll take a blood sample straight away!” turned out to be permanent,” Alain explains. “It didn’t hurt, though, and I didn’t have to her partner, the doctors will look into whether the potential recipient doesn’t have is also very short. The two surgical procedures are performed almost simultaneously I couldn’t believe it, because I thought there’d be a lot of talking to do first, but they any problems. At that time I smoked, I also used to have a drink sometimes ... Who someone more appropriate among his grandparents, parents, aunts and uncles ... we in one operating theatre, the period of ischemia is usually less than an hour, and the acted immediately to see if my kidney was suitable,” Jiří recalls. It turned out that he would’ve listened to the doctors at that age?” After turning thirty, though, Alain then are especially cautious when young women are involved, because they have their whole kidney starts working immediately in the theatre.” The average period of ischemia had blood type O, so he was a universal donor. He then had to undergo several more had to go every other day for six hours of dialysis, and his health went rapidly downhill. life ahead of them, and even if they now say they don’t want children, the time may for kidneys from deceased donors is eighteen hours, and the general rule is that the tests, and he humorously recounts how he made a complete mess of one of them. He’d Fortunately, ICEM informed him that they had recently begun transplants from living come when they will,” explains Dr. Pokorná. “In general, we don’t really recommend shorter that period is the better. just celebrated his seventieth birthday, and he’d forgotten that the next day he had donors who are not blood relations - there was no suitable donor in Alain’s family. “Only pregnancy after donating an organ. Although it’s possible to carry a child for the full to go to ICEM. “The results were absolutely catastrophic, and they told me I couldn’t my father seemed a possibility, but my parents divorced when I was five years old. My term with one kidney, it’s a considerable burden for the body. A grandmother may have, “People are also psychologically better prepared,” says Iva Brůžková, coordinator of donate anything to anyone! So I had to admit I’d been drinking. We repeated the test mother called him, but he refused,” Alain says with a shrug. The period immediately for example, twenty years of life ahead of her with one kidney, whereas a young wife living donor kidney transplants. “We had a couple where the wife was donating a and this time it was all right,” he laughs. before the transplant operation was difficult for him. For one thing, he was by then in a may have as much as seventy. So it’s better to take a kidney from the grandmother, kidney to her husband and she believed in astrology. She didn’t like the operation date fairly poor physical condition, and on top of that there was the psychological pressure. then from the parents, and then maybe from the wife in thirty years’ time, when she because of the phase of the moon, so I told her: “No problem. Choose a date and time On the first day of March 2007 both the brothers went into the operating theatre. He started to have second thoughts about whether he should accept the kidney from already has healthy grown-up children.” that you like.” And why not? Everyone’s unique! So the wife picked the right phase of Understandably, Jiří’s wife was worried about him, but she didn’t stand in his way. Martin. He hadn’t asked for it, his friend had made the offer on his own initiative. “I Donors may also change their minds at any time before the transplant operation. They the moon and the time, and went to the theatre knowing it would turn out well. And “She’s used to me always doing what I want in the end anyway. She said she’d leave was talking about Alain with a girlfriend and she told me she’d definitely have given him don’t have to give any reason, refusal is enough, and nobody attempts to persuade it did.” the decision up to me,” he explains. “And I looked at it like this - I’m seventy, I don’t one of her kidneys, but her blood group was wrong,” says Martin Odvárka. “So I went them differently. The potential recipient is informed that they cannot get a kidney from have much to lose, and I don’t want my brother to be dying at sixty. In fact, I didn’t for a blood test and found out I’ve got blood group O, so I’m a universal donor. After the relevant donor, but they are not told that it is because the donor is afraid. “We Blood brothers even let anyone else in the family go for tests.” that I just told Alain I wouldn’t take no for an answer, and that we’d give it a shot.” The simply say it’s not possible,” explains Iva Brůžková. “We had a married couple here The transplant operation went well, and the kidney started to function in Jan’s body doctors pointed out all the risks to Martin: that in the beginning he would have to take where the husband was constantly urging his wife to give him her kidney. Except she The days when donors and recipients were limited by age are thankfully now long immediately. The only complication was that Jiří’s scar from the operation began to it easy on himself; that if someone in his family needed a kidney he wouldn’t have one; had two sons suffering from the same hereditary kidney disease and no one could say gone. “We have no age limit as regards kidneys,” confirms Dr. Pokorná, “Many people fester and he had a temperature, so for a while the roles were reversed. Whilst Jan and also that if there was a car crash, his lack of a second kidney could prove fatal for whether they wouldn’t need a donated kidney sometime in the future. She was crying think that a grandmother cannot be a kidney donor because she’s old, but that’s not was able to be at his brother’s bedside after a few days and could go home for the him. But Martin stuck to his guns. here in front of me, and so I said: ‘Don’t worry, we’ll do the tests and we’ll tell a white true. These organs are so scarce that we have also had to broaden the criteria for weekend, Jiří had to stay at ICEM for two weeks. But since he could see Jan brimming lie that for immunological reasons it’s not possible between the two of you at this time, deceased donors. This means that when you go on the waiting list you could get a with health, he didn’t make too much of his poorly healing scar. Photos from the And so one November day in 2001, Martin’s left kidney was transplanted into Alain’s but that future kidney donation is not ruled out.’ I’ve also seen a carefully examined kidney from a deceased donor who was seventy, had high blood pressure and was not hospital show him lying in white bedclothes but grinning from ear to ear. Like a proper right lower abdomen. It started functioning straight away, and Martin was released donor who was terribly afraid, and in the end the whole thing was called off.” examined as thoroughly as your grandmother, and you wouldn’t know it - in which older brother, he constantly keeps an eye on Jan, orders him to drink plenty of fluids from hospital a few days later. “I lay at home and I only had one problem: when The opposite situation also occurs - people who would need a kidney simply refuse to case, your grandmother’s kidney would have been a better option for you.” and not to smoke ... “He’s a young fool, so he should listen,” Jiří says of Jan, who will someone came to visit me I couldn’t laugh because it made my scar hurt,” Martin accept one from a loved one and decide to wait instead until an organ from a deceased be sixty-four in October. Suddenly Jan remembers something: “Hey, how come they recalls. Having one less kidney hasn’t affected his life in any way. “Except maybe donor becomes available. The clearest evidence that a living kidney donor can be a septuagenarian without them took out your left kidney and put it into me on the right side?! You can’t do that with a my belly’s bigger now,” Alain says with a nod. The two friends go walking their dogs suffering any harm comes from the brothers Jiří and Jan Fikar. The two men perfectly car!” “That’s so it gets evenly worn on both sides,” Jiří informs his brother. together, and often meet up for a beer. And, as Martin says mischievously, they keep

20 21 But at least they know about the option and can weigh it up. At seventy-two now, So far, the oldest living donor in the Czech Republic is Alena Vrbová. The kidney which the cells disintegrate, indicating that the transplant cannot be performed because the Jiří Fikar says: “I think this method should have far more publicity. Surely all those her daughter Gabriela received from her was over seventy years old. organ would be rejected. unfortunate people who are now on dialysis have someone out there who could and The first kidney transplant from a living non-relation was performed in the Czech would help them!” Republic at the beginning of 1999 by doctors at ICEM. In that case, a fifty-six year old - In Sweden a study was conducted on the quality and length of life of kidney donors, [email protected] woman from Čelákovice donated a kidney to her husband. which showed that donors live longer and better quality lives than the general population. One of the reasons for this is because they were thoroughly examined before donating The first cross-transplant operation in the Czech Republic was carried out in 2003. It the kidney and go to the doctor for regular check-ups. BOX: was performed between two married couples: the Pikals and the Mikolajskýs. Mrs. Criss-cross Pikalová gave her kidney to Mr. Mikolajský, and Mrs. Mikolajská to Mr. Pikal. - In the USA and Norway more than half of all kidney transplants are from living donors. In the Czech Republic, however, these types of transplants account for only 3-8 percent If a loved one is willing to donate a kidney but doesn’t have the right blood group, their in recent years, which represents 20 to 50 transplant operations per year. kidney can still be used - in so-called cross-transplantation. Since transplants began BOX: being performed between people who are not blood relations, the possibilities have greatly expanded. The transplant centre finds another donor-recipient pair to match up Did you know that ... ? with you and your chosen partner. You then receive a kidney from the second donor, - Acute renal failure occurs after trauma, surgery, or poisoning, whereas chronic renal while your relation or friend donates their kidney to the second recipient. Anonymity failure occurs gradually over time. The most common causes are nephritis, urethritis, is strictly maintained before the operation. “But then afterwards, most people start cystic degeneration of the kidneys, high blood pressure and kidney stones. looking for one another,” says coordinator Ivana Brůžková. “Only one set of the pairs whose transplants we’ve done don’t know about each other. All the others go on - The average functional lifetime of a kidney transplanted from a living donor is 20 holiday together. We had here, for example, one couple from Slovakia and one from the years, whereas from a deceased donor a kidney usually functions for 8-12 years. Czech Republic - the wives donated their kidneys to the husbands. After the operation both of the wives were in single rooms, and one of them asked me to ask the other - Last year in the Czech Republic 355 kidneys were transplanted, most of them (194) whether she could come for a visit. The second woman enthusiastically agreed, and at ICEM in Prague. Transplants from living donors accounted for approximately 8 then she told me she’d been wanting to ask the same thing. They met on the first day percent. after surgery, and to this day they still go to visit one another.” - In the whole of last year, only one kidney transplant from a living donor at ICEM was However, there are complications involved when making the decision to donate an unsuccessful. A sister was donating to her brother, but thrombosis occurred in his renal organ so that someone you care about can undergo a transplant operation. It can artery. happen that one of the donated organs will function and the other will not. You will then lose a kidney and it won’t help your loved one. At the transplant centre, though, - A survey by the World Health Organization last year indicated that a suitable organ is they do their utmost to ensure a successful result. “During cross-transplantation, we found only for every tenth patient in need of a new kidney. try to match up the pairs in terms of both age and organ quality,” says Dr. Eva Pokorná. “So no-one can say afterwards that the other pair got the better half of the bargain! “ - If you are on the waiting list and your relation dies, you cannot then automatically receive their organs. The law does not allow a person to grant consent for their organs to be donated after death only to a specific recipient. BOX: - Potential living kidney donors must be free of any malignant tumours with the potential Kidney transplantation in the Czech Republic to metastasise, kidney disease, HIV, and Australian antigen, which has an associated risk of the transmission of hepatitis B. The minimum age is 18 years old. The first successful kidney transplant from a blood relation in the Czech Republic was performed in 1966. Twenty-four year old Karel Pavlík was given the organ by his - In addition to a compatible blood group, it is essential that the results of so-called mother Blažena, who was forty-nine at the time. He lived with her kidney for three crossmatch testing are negative for the potential donor and recipient. This test examines years. Blažena Pavlíková then lived on to a very great age. the reaction which occurs after the recipient’s blood serum is mixed with the donor’s lymphocyte cells. The cells must remain unharmed. In the opposite, positive, reaction

23 22 Line Holm Nielsen, differences in the instructions the country’s A&E departments have for treating patients The great failure who present in a condition similar to that which cost Christian Dam Midtgaard his life in 2005. And this is despite the fact that, according to several experts, this case is a text Third Prize book example both of how the health service can make mistakes and of how it should Morten Crone, When 16 year old Christian Dam Midtgaard died it was one of the most learn from those mistakes. meaningless and well-documented failures by the Danish health service in recent times. Christian’s parents have appealed strongly to the Minister for THE CALL CAME SHORTLY after midnight on a Friday night during a rare break in Kasper Krogh and winners Health for all of the accident and emergency departments in the country to Dr Jens Winther Jensen’s shift. He was sitting in the duty office of Århus Hospital’s learn from the mistakes which cost their 16 year old son his life. But so far Department of Anaesthesiology when a nurse rang him. He was told that the A&E the system has failed in this task. Department urgently needed his assistance. Dr Winther Jensen ran over to the A&E Department and was shown into a room where there was frantic activity. Jesper Woldenhof HE LETTER WAS THE CULMINATION of two years of frustration and campaigning to Tcall the system to account. It was a father’s attempt to prevent other parents from ON A TROLLEY in this room lay Christian Dam Midtgaard. He was a 16 year old youth, having to go through the same pain and grief that he was suffering himself. who thanks to his passion for rowing was on top form physically and had never had anything wrong with him. Now his heart had stopped. His hands were streaked with ‘To put it bluntly, we are talking about our 16 year old son’s unnecessary blue, his face greyish blue and his pupils were fixed and dilated – signs of a severe lack death in the Accident and Emergency (A&E) Department of Århus Hospital. of oxygen. Dr Winther Jensen went over to the trolley. He was 35 years old, but in spite The team all work for “Berlingske Tidende” A major reason for his death is that on 23 September 2005 the country’s of his youth he was the newly elected President of the Danish Medical Association. Dr largest accident and emergency department was not functioning properly,’ Winther Jensen inserted a plastic tube into Christian Dam Midtgaard’s airway in order newspaper wrote Peter Dam in the opening of his letter, which he addressed to the to prevent him from choking on his own vomit. Electrodes, an oxygen monitor and a most senior figures in the Danish health service. blood pressure monitor were attached to the patient and a line was inserted into his veins. He received more heart massage and oxygen and he was given adrenaline and National Peter Dam was appealing to Minister for Health Jakob Axel Nielsen (Conservative), to atropine to try to restart his heart. the President of the Region of Central Jutland Bent Hansen (Social Democrat), who is also the Chairman of the Association of Danish Regions, and to the National Board of More doctors arrived. For over an hour Dr Winther Jensen and his colleagues attempted Health. The death of his son, Christian Dam Midtgaard, must not be in vain. Peter Dam resuscitation using heart massage, artificial respiration, electric shocks and large made reference to the fact that the Patient Complaints Board had just expressed strong quantities of cardiac stimulants. At around 3 a.m. the doctors concluded that Christian winners criticism of a Falck paramedic and a nurse in the A&E Department who failed to provide Dam Midtgaard’s condition was still critical, but stable enough for him to be transferred his son with the correct treatment. He also pointed out that, highly unusually, the to Skejby Hospital. There would be a better chance of resuscitating him there. Dr Patient Complaints Board was now also expressing strong criticism of Århus Hospital Winther Jensen sat at the side of the 16 year old as the ambulance dashed through for a lack of control over the procedures in place in its A&E Department. Århus with its sirens wailing. Upon their arrival at Skejby Hospital a larger medical team took over. They put Christian Dam Midtgaard onto a ventilator. ‘We are of the opinion that this case can and must be used by the health service to improve and raise standards in Danish accident and emergency Dr Winther Jensen returned to Århus Hospital to finish his shift. He had finished with departments. We find it hard to believe that Århus Hospital’s A&E Department his patient and handed him over into the care of other doctors. But his patient had not is the only one in Denmark to have problems,’ wrote Peter Dam. finished with him. The incident took place back in September 2005. Today, four years later, the case of Christian Dam Midtgaard still pursues Dr Winther Jensen. He called on the top brass of the health service to ensure that lessons are drawn from the experience of Århus Hospital and from the death of his son. The experience should be used to create common guidelines so that every A&E department in the country is Denmark able to ensure there is no repetition of the fatal mistakes made when Christian died. Today Peter Dam can see that the system did not listen when he tried to appeal to it. Over a year later what he had hoped for has not happened. Today there are big

24 25 ‘Never before or since have I been involved in anything which can compare with this In the A&E Department, the paramedic in charge of Christian handed him over to a Department, in the form of a consultant and a chief nurse, were criticised for the fact It will drag on even more when it comes to disseminating this experience at national case – thankfully. The case is exceedingly rare, but that makes it no less important to nurse and explained that the teenager had had too much to drink and was in a deep that staff in the A&E Department had no clear guidelines on how to treat patients with level. The National Board of Health was subsequently in close dialogue with Århus analyse further, because it is so serious. The greatest challenge in this case is to make sleep. Falck later established that the paramedic carried out an ‘extremely perfunctory reduced consciousness. Hospital to get them to improve the existing procedures. Once that was done, Århus a commitment to learn from what happened so that nothing like it can happen again. examination and observation of the patient, which is to be seriously and strongly had gone from having nothing to being at the forefront when it comes to instructions That is one of the things which motivates me and it should also be one of things that criticised’. The Patient Complaints Board also expressed strong criticism and warned Medical Director Anne Thomassen explained that, following a major review of the on how to manage patients with reduced consciousness. But, according to Anne Mette motivates the health service,’ said Medical Association President Dr Winther Jensen. the paramedic that in future he must show greater care in his work. failings in connection with Christian’s death, a number of changes have been made: the Dons, head of supervision at the National Board of Health, the Board did not consider nursing staff have been sent on a course in acute medicine, and they have been given that the practice should be rolled out to the rest of the country’s A&E departments: IN ORDER TO UNDERSTAND what lessons can be learnt from the death of Christian BUT THE MISTAKES DID NOT STOP at the Falck paramedic. The coordinating guidelines on how to assess and prioritise the patients who come into the department. Dam Midtgaard, it is first necessary to understand why he died. Only a few hours nurse that evening asked the Falck paramedic to put Christian on a trolley against At the same time there are now clear guidelines on how unconscious patients should ‘In this case it was our assessment that it concerned a specific and not a general before Dr Winther Jensen’s battle to resuscitate Christian Dam Midtgaard, the 16 year the wall of the A&E Department. Here, Christian was attended to briefly by the nurse be treated. An emergency team of specialist doctors and nurses is now on standby and problem,’ said Dr Dons. old teenager was at a party. It was Friday evening on the 23 September 2005 and one who left him in the recovery position, with his head turned towards the wall and with a new room has been set up in the A&E Department for monitoring patients. of Christian’s friends was having a birthday party in a village hall in Egå, a suburb of a blanket over him. Out in the hall the nurse said that somebody should take a look at According to Dr Dons, it is up to the regions which run the country’s hospitals, and not Århus. The parents of the friend whose birthday it was were at the party and were Christian when a room became available in the A&E Department. Over the course of BUT AT REGIONAL LEVEL – and, in particular, at national level – slower progress up to the National Board of Health, to ensure that useful information and best practice keeping an eye on who came in and how much alcohol was being consumed. Christian the next half an hour, the nurse and two of her colleagues took a quick look at Christian is being made in ensuring that the specific and important lessons learned from are shared and widely implemented. was drinking too, as he normally did when he was at a party. when they passed by him. None of them checked either his pulse or his pupils. The Christian’s death are implemented in the country’s other A&E departments. This serves coordinating nurse has since been strongly criticised by the Patient Complaints Board to illustrate just how difficult it is for the health service to ensure that vital information We are talking about the fact that some good has come of a tragic case. But that evening he experimented with something new as well. A friend took Christian for not having examined Christian properly. Christian could have been saved if he had is disseminated to all of the country’s hospitals. The case of Christian Dam Midtgaard As a citizen, I have to ask: should not such experience be shared and into one of the toilets and asked him if he wanted to try amphetamines. At first Christian been examined properly and had been given medicine to counteract the heroin. But underlined precisely the need for, among other things, shared medical records and implemented quickly? said no, but when his friend asked him again he said yes and Christian sniffed a line that did not happen. joint acute assessment units where a broadly specialised emergency team of specialist of the powder. But the powder was not amphetamines. It was brown heroin, and doctors and nurses is ready to receive patients like Christian when they reach A&E. ‘You are right. There are lessons to be drawn from many places in the regions. The suddenly things started happening very fast. Christian began to feel ill, went outside After Christian had been lying in the A&E Department alone for 40 minutes, a nurse Health Act obliges the individual regions to analyse unintended incidents and learn and after a few steps keeled over onto the road in front of the village hall. A large discovered that his hand was blue. His face was also blue, he was not breathing and Dr Winther Jensen has pursued the matter beyond Århus Hospital into his work at the from them. But we have no structure in Denmark to ensure that solutions to specific group quickly gathered around Christian and tried to bring him round. Soon after a when Christian’s pupils were finally checked, they did not react to light. All these Danish Medical Association. He raised the matter when the National Board of Health problems are implemented in a centralised way overall.’ male nurse who lived right next to the village hall also arrived and took over. The nurse were signs of a serious lack of oxygen as a result of cardiac arrest. Dr Winther Jensen prepared a comprehensive plan for the Danish acute care system, which was presented So, as things stand today, there have been no initiatives to ensure that the specific dialled 112 and asked for an ambulance. He said that it was serious and that the boy and several other doctors were called and a battle began which went on for several in 2007. lessons from the death of Christian Dam Midtgaard and from Århus Hospital’s work to was unconscious. hours. rectify its faults have been disseminated to other A&E departments in Denmark. A few minutes later an ambulance arrived at the scene with two Falck paramedics. He does not know to what extent the experience from the Christian Dam Midtgaard The more senior of the two paramedics reassured the male nurse that he would take But it was in vain. When Christian’s parents arrived at Skejby Hospital later that night, case has been disseminated to other hospitals across the country. But he does know As a random survey of 17 of the country’s hospitals conducted by Berlingske Research over and, according to his colleague, at the same time he turned away a 16 year old their son was on a ventilator. Towards morning the doctors established that Christian that it takes too long for the health service to pass on this kind of knowledge. shows, two out of the 17 A&E departments asked still have no specific guidelines on boy who wanted to go with them in the ambulance. This was the boy who had given had suffered severe brain damage due to the lack of oxygen. Peter Dam and Christian’s how to manage patients with reduced consciousness who may be under the influence the heroin to Christian, as was shown, among other things, in a later police interview mother, Anne Midtgaard, made the hardest decision of their lives. The ventilator was IN THE REGION OF CENTRAL JUTLAND the case has already been of major of alcohol or drugs. A lack of instructions was one of the things which went wrong in report in the case. switched off. Christian was pronounced dead at 14:35 hours on Saturday 24 September significance, according to Director of Health Leif Vestergaard. the case of Christian Dam Midtgaard’s death. And the Patient Complaints Board ruling 2005. in the case found that the country’s A&E departments should have such instructions. The paramedic made a number of mistakes which have since been strongly criticised by ‘We can most certainly learn from one another. This case has been a catalyst for work Otherwise, the Board found, patients could be put at risk. the Patient Complaints Board and by Falck: He did not carry out a proper assessment SINCE CHRISTIAN’S DEATH his parents have campaigned for it not to have been in to change acute assessment units everywhere,’ said Leif Vestergaard Petersen. of the unconscious Christian. The paramedic did not check his pupils, which, had he vain. They have pursued all conceivable avenues of complaint and have appealed to a BERLINGSKE TIDENDE has shown the results of its straw poll to Torben Mogensen, done so, could have told him that Christian had taken drugs. He left out a number number of authorities. They say that in spite of all the grief and frustration over their Both the Region and the National Board of Health regard the standard introduced who is the Vice President of Hvidovre Hospital and one of the country’s leading experts of other assessments as well, simply thinking that Christian had passed out because loss, they may find some comfort if some use can be made of Christian’s death in future at the hospital following Christian Dam Midtgaard’s death to be the best possible. in questions of patient safety. In his opinion, three of the hospitals questioned do not he was drunk. In the ambulance he lay Christian with his head facing the side of the in order to ensure that the system learns from its mistakes. There are plans that five of the region’s hospitals should have learned from the meet the minimum requirements laid down by the Patient Complaints Board in its ruling vehicle, did not examine the teenager further and took a ‘nap’ while the ambulance experience, implemented guidelines and set up acute assessment units in line with the on the case of Christian Dam Midtgaard. In addition, the quality of the instructions at was on its way to Århus Hospital, as his colleague, who was driving the ambulance, The 16 year old’s death has led to extensive changes – locally at Århus Hospital. Highly high standard of the Århus model. However, according to the region’s head of quality the other A&E departments in the country is very variable. This is in spite of the fact later explained during Falck’s inquiry into the matter. unusually, in Christian’s case the Patient Complaints Board directed its criticism not Charlotte Toftgaard Nielsen, for the time being this work is only under preparation and that, according to Torben Mogensen, the country’s A&E departments see around 100 only at individuals, but at the system itself. The management at Århus Hospital’s A&E has not been implemented, and it is not known when it will be finished. young people heavily under the influence of alcohol or drugs every weekend.

26 27 ‘According to the ruling of the Patient Complaints Board, the lack of instructions played a major role in the chain of events which cost one boy his life. The managements of hospitals without instructions are therefore running the risk of being subjected to charges as serious as those levelled against the management in the Århus case,’ said Torben Mogensen:

‘But worst of all: when there are no instructions, there is a risk of a tragedy like the one in Århus being repeated. This needs to be put right quickly.’

In the light of Berlingske Tidende’s inquiries, the National Board of Health now wants to write to all of the Danish regions in order to impress upon them the necessity of having instructions which, as a minimum, meet the standard laid down by the Patient Complaints Board in its ruling in the case of Christian Dam Midtgaard. At the same time, the National Board of Health will ask the Medical Public Health Officers to look at the situation in the two hospitals which do not have specific guidelines.

PETER DAM SENT his letter to the senior figures in the Danish health service in July 2008. He appealed for all of the A&E departments in the country to learn from the mistakes which cost his son his life. For the Region of Central Jutland, a lawyer replied on behalf of Bent Hansen. For the National Board of Health, a special adviser replied. Minister for Health Jakob Axel Nielsen (Conservative) never replied to the letter.

Published in Berlingske Tidende, Sunday 6 September 2009, 2nd section.

29 28 Doris Priesching was born in November exactly what was happening to me, and that is probably why it hurt less. I swilled down Thank you, Margaret 20 or so tablets a day, was given prophylactic antibiotics and antimycotics, and huge 1967 in Vienna. She holds a Master quantities of cortisone to make the cells more susceptible to the chemo.

Degree in Communication Sciences Without knowing who I am, she gave me her life-saving bone marrow. After each cycle my blood count, as expected, plummeted, giving rise to infections. I Eleven years later I meet my donor for the first time. A true life story, by needed blood and platelet transfusions to make good the loss. By January 1997 I was and Political Studies at the University of Doris Priesching free of leukaemia cells and no longer under the constant care of the hospital; I was Vienna. She is employed as Editor for given chemo in tablet form, with injections every two weeks. I went back to work and Friday, 3 April 1998: At 5.30 a.m., a heavy nose bleed, the treatment is thought it was over. the newspaper “Der Standard” in Austria. Priesching postponed, the next 4-stage cycle and the lumbar puncture are cancelled. The compression bandage is removed, my hand is already swollen but the But in February 1998 came the dreaded relapse. The doctors didn’t tell me immediately, has been doing a wide range of reports and analyses injections in my abdomen should be enough. I am seeking reassurance but when I sneaked a look at my medical notes I realised the cancer had returned on media, law, economics and politics. Additionally, from within, asking my instinctive, individual self for reassurance. I am an with a vengeance. Around 90% of my blood was made up of malignant cells. The insecure, mutilated wreck, only taken seriously when suffering. I cannot chemotherapy began again, but this time it was even more difficult. As well as the she is interested in scientific journalism with focus rely on my rational side alone. infections I suffered thrombosis, severe bronchitis, a temperature of 40˚ for days on end, and fissures. The injections in my abdomen caused massive haematomas. The on medicine topics, such as cancer, research of n 4 April 1998, the day after the doctors stopped the chemotherapy because I had search for a bone marrow donor began. haematology, Alzheimer etc. Currently, she is National Obecome too weak to take the treatment, Margaret Evans, of Chapel House, Pandy, in Wales, received a letter from Keryl Howells of the Welsh stem cell registry in Cardiff: Tuesday, 3 May 1998: I thought it was a “readily curable disease” but now writing her PhD Thesis on “Media and Anxiety” at “Dear Mrs. Evans, I would be very grateful if you could contact me urgently.” Margaret this is my only real chance. I fluctuate between wanting desperately to do remembers: “I was totally beside myself.” But she didn’t hesitate for a moment. something, a keen desire to get through the treatment, and total resignation the University of Klagenfurt, Austria. Margaret is my bone marrow donor. in the face of what seemed a huge, almost impossible task. On one hand, I winner see it as a challenge, on the other, it still seems totally unfair. She is 45, married to Dylan, a carpenter, has three children and works at the Co-op. On 30 June 1998 she gave me her bone marrow without knowing who I am, what my 2. Stem cell registry: In May, Waltraud Carvajal of the Austrian stem cell registry name is, what I look like, where I live, or what I do. Just as I did not know any of these reported that Margaret was “very enthusiastic” about my attempt to contact her. This things about Margaret. Female, resident in Wales – that was all I knew about Margaret was because, after eleven years, I felt an urgent need to meet my donor. I wanted to for eleven years. Without her bone marrow I would not be alive today. In August 2009 get to know her. To find out what she looks like, to give her the opportunity to get to I met Margaret for the first time in the Winter Garden of the Penally Abbey Hotel in know me, the person whose life she saved. And to say thank you. Of course, above Tenby, on the south-west coast of Wales. all, to thank her. But it was not that easy. Since 2002 the Cardiff stem cell registry has no longer permitted meetings between donors and recipients. Luckily, because 1. Leukaemia: On 16 April 1996 the doctors diagnosed me with acute lymphatic my transplant was a long time ago, the doctors turned a blind eye. Fears of potential leukaemia (ALL). This is a condition where cells enter the bloodstream in an immature dubious demands for payment in such cases have so far proved groundless, though state, incapable of fighting infection. The malignant leukaemia cells displace the sound they won’t go away. Agathe Rosenmayr, head of the Austrian stem cell registry, was blood cells so that the blood can no longer be formed normally. ALL mainly afflicts also less than keen on my idea: “Why do you want to do that?” she asked. She was children, but I became ill at the unusual age of 29. worried about the atmosphere of such a meeting: that I might imagine the donor as someone larger than life, that the reality would always be a disappointment. I assured For a year I underwent chemotherapy in the Hanusch Hospital in Vienna, receiving her that I did not intend to make my donor into some kind of saint, so she agreed. With about a hundred transfusions. I also had about 20 lumbar punctures, in which a the consent of the hospitals in Vienna and Cardiff I obtained Margaret’s name. I sent chemotherapy drug is injected into the spinal cord to prevent any leukaemia cells her an initial letter with my e-mail address, and after that everything was easier. We getting into the brain. I had just as many bone marrow samples taken: those dreaded, booked a flight to London, hired a car, drove to the south-west coast and took a room Austria painful aspiration procedures which the doctors have to do in order to monitor the in a lovely Welsh hotel, only half an hour’s drive from Margaret’s home town of Pandy. progress of the disease. If I was allowed to choose I preferred the samples to be taken She promised that she would gladly come to the hotel. from my breastbone rather than my hip bone, because I wanted to be able to see

30 31 Suddenly we are sitting side by side. Margaret, her husband, Dylan, my friend Edith registry contains the names of 60,000 people. 250 of them have already been asked 3. Seven days to go: On the morning of 22 June 1998, I took the underground to before. As soon as it started going in, I felt it; later, despite the Navoban, and me. When I begin to tell my story, and start by saying: “Thank you, Margaret, you to donate. The Welsh database has 50,000 names, and more than 200 have donated. the general hospital. I remember the night before, what we talked about, what we I felt worse and worse. The question is how I tolerate the bone marrow. I saved my life.” She replies, “Never mind” and smiles: “That’s understood.” You can withdraw consent at any time; no-one is forced to donate. In Austria, charities promised ourselves: “It will pass” - “Yes, you will survive. Quite certain. We can do it.” think what I have to do now is just go with the flow, stop trying to be in are constantly calling for campaigns to attract donors, and they have to cover the - “And if it goes wrong: Please, let me go. That’s what I want.” I still think that people control. I can be fatalistic and leave everything in God’s hands. I put myself Monday, 22 June 1998: Seven days to go. For me it was/is rather difficult. associated tissue typing costs. The stem cell registry cannot afford to pay because of its should have some say if they are dying. in God’s hands. I know I want to live. I feel lonely and am very afraid of what’s coming. The stress is terrible. So tight budget. The government grants are not enough. The number of donors remains In the weeks before the transplant I felt rather well, firmly resolved to master the many examinations, drugs. I’m homesick and find it very difficult to get used constant: people are constantly being removed from the register on age grounds. The challenge ahead. I knew it was my last and only chance. I went walking, did some They still administer the really tough high-dose therapy, the same as in my day, but it’s to this new world. What can I do except think about the overall outcome? charities – often run by tireless female volunteers - make huge efforts to secure donors painting, listened to music and did a lot of cooking. I loved cooking because it made reserved for patients whose general health is good. The conditioning therapy in the last and funding. me forget everything. We invited friends round and were invited out too. I meditated six days before the operation consisted of four total body irradiation treatments and two Although good tissue compatibility between donor and recipient is vital to the success in the way that I had learnt from my beloved psychotherapist, Franziska, and got closer lots of chemotherapy. My bone marrow was totally destroyed, and my immune system of a bone marrow or stem cell transplant, donors can be found for 85% of all transplant The search for a potential donor for me was slow. There was one, but with only nine to my spirituality. I lived in total awareness and was perfectly clear that what lay ahead put out of action. By ‘Day zero,’ as planned, there was no sign of any white blood cells. candidates. 13 million potential donors are registered in a database, and stem cell matching HLA characteristics. “A risky transplant,” remembers the head of the bone would be hell, but that it also offered a realistic chance of a cure. I no longer had any resistance to infection, and needed a sterile environment. That registries located throughout the world follow a multi-stage procedure to find suitable marrow transplant department, Hildegard Greinix, at the Vienna general hospital, where involved serious hygiene measures, mouth rinses, washing, because the chemo had matches. In Austria, the Austrian stem cell registry headed by Agathe Rosenmayr and I was transferred from Hanusch hospital. I did have one advantage – I was young and, Friday, 26 June 1998: Vomited twice today. It was a combination of attacked the mucous membranes. To protect them, you clean your teeth with cotton her team has been leading the search for donors for 20 years: “Tissue compatibility surprisingly enough, after the relapse and premature termination of the chemo, I was radiotherapy, over-exertion, tablets and hunger. The cortisone messed me buds. The nursing staff were constantly checking my temperature, blood pressure, between donor and recipient depends on certain antigens, called HLA (Human free of leukaemia – but otherwise it was all bad news. Acute lymphatic leukaemia has up, I only got 6 hours sleep - in my condition, that’s not enough. Today is the oxygen saturation, were always asking: “Have you had your shower, had a rinse, Leukocyte Antigen) characteristics. According to international recommendations, all a high risk of relapse. Following a relapse and renewed treatment, only 20 to 40% of first day of being fed intravenously. Today is the last time that I went out. I applied the cream...?” tissue characteristics should ideally be identical between patient and donor. If not, patients remain permanently free of leukaemia without a transplant. I would almost want to leave all this bad stuff behind. The first time I go for a walk outside the decision to transplant or not requires careful consideration – what’s the risk of certainly not have been one of them on account of my chromosome changes. Even my it will be an unbelievable experience – everything will be new and exciting. Visitors were only allowed into the sterile room after a complicated procedure involving relapse or rejection? It takes about two and a half months for the registry to find remission was not normal: “ALL patients do not respond well to chemotherapy after a a coat, gloves and shoes, plus a mask over the mouth, or else they stayed in the outer potential donors. When Rosenmayr started 20 years ago, it took about ten months. relapse,” explains Greinix. But being leukaemia-free is essential if the transplant is to Between 1991 and 2008 over 1,000 bone marrow transplants were carried out in room where all the medical appliances are connected. I was attached to the appliances Digitalisation and successful research help. “If a particular HLA combination tallies in succeed. I had a choice: a risky transplant, more chemotherapy, or do nothing. Austria. In 2008 the Vienna general hospital carried out 82 transplants, 35 using via a long tube leading to a surgically implanted central line in my upper chest. I could the first selection procedure, there is a good chance of a match,” explains Rosenmayr. unrelated donors and 12 with sibling donors. 35 were autologous transplants. In my see into the outer room through an acrylic glass window. The window filled the whole 90% of donors for Austrian patients come from other countries, mostly from Germany, In May 1998 the laboratory determined Margaret’s HLA characteristics from another case, my two sisters could donate bone marrow to each other, but were not a match for front of my room which was around 15 metres square; at bed height it had two holes the US and Britain. blood sample. Only then was it definite that she actually has tissue cells which are a me. In total in Austria, 158 unrelated transplants were carried out in 2008 (64 involving containing rubber sleeves which were big enough for visitors to slip their arms in and good match for me. And so at precisely the crucial moment the stem cell registers in siblings, and 94 involving unrelated donors). hold my hand. The room had an exercise machine, for use five minutes every day, a Margaret had been registered with the donor database for 2 years when she received Vienna and Cardiff achieved that improbable feat – should I call it a miracle? On the “Seven days to go” in the transplant calendar means admission and settling in. The TV and a portable toilet – which I had to use in public. There was no problem with any the letter asking her to give another blood sample. They both registered because they day on which I had to decide what I wanted to do, at the beginning of June 1998, hospital care felt like routine but with noticeable concern for the patient. In the smell – because I was totally germ free, the necessary bacteria were not there. Since had come across information leaflets at some time, when giving blood. “I am a mother,” to my complete surprise Greinix announced: “The bone marrow donation centre has afternoon the senior doctor in charge - Peter Kalhs - and his team took the time to the sores in my mouth became too painful, I gave up eating and was fed artificially. explains Margaret. “I always thought: ‘What if that happened to my children? I would found a matching donor for you.” From that moment on, I knew what I had to do. explain the details and answer my questions. I had brought some personal possessions All the same, I vomited several times a day, because my stomach had lost its mucous want someone to do it for them.’” Margaret was 34 when she was asked to donate. Her with me and I handed them over to the nurses: books, CD player, painting things, membranes. But at least this loss of membranes was not so painful for my public bowel youngest daughter was four at the time. “Weren’t you afraid that you might not come Wednesday, 24 June 1998: The first really difficult day. In the morning I feel clothes – mainly T-shirts and joggers – I would never have worn the hospital gowns. movements – being germ free meant constant diarrhoea. round from the anaesthetic?” - “It never crossed my mind.” sick; I ask for something to take and begin to feel unbearably tired. Everything had to be sterilised before I could have it back in my sterile room. For the first few days I was still “outside” on the ward; 3 days before the operation I was My resolve to patiently endure was not unaffected by this environment, and presumably Tuesday, 23 June 1998: 2/8 ray treatment, 3 x Zovirax, 2 x CMV prophylaxis, The beach is just a few hundred yards from the hotel; we decide to walk down and transferred to the sterile room and made myself at home, as far as I could. suffered as a result. I wanted no compromise, no talking around it, no forced jocularity. 1 x stomach, 4 x fungal prophylaxis, bone marrow puncture: complete along the beach to the next village. On this August day the weather is typically British: Anyone who had difficulty with this approach could just stay away. In the year I had remission. In short: from time to time I felt unwell today, but now I’m fine wet and windy. We talk about the weather and I am curious to know: where did she At the Vienna general hospital, transplant patients are now housed on the 21st floor leukaemia, I’d had plenty of experience of visitors. The worst were the ones who again. A bit more activity would be good. I was very homesick until the grow up, what time does she get up in the morning, what does she like to do best, with spacious single rooms and a view of the city. In those days we were put in a rather wanted to “take my mind off things”. Or the surprise visitors who came because they afternoon. what is her favourite food, what music does she listen to, does she often feel cold. It unattractive side ward. Much has changed, says Greinix: “Since 2000 we’ve been doing had time “to drop in.” Or the understanding ones who were sorry for me, as if they could be that there is such a thing as kindred spirits or a physical affinity. I can say that transplants for patients as old as 70.” The maximum age used to be 50, because of the were mourning at my funeral. There were many that I couldn’t see at that time – and To be a bone marrow or stem cell donor, you have to be aged between 18 and 50, the new genetic material did not change my character, nor was there any other subtle gruelling high-dose therapy. afterwards, too. I organised my visits very carefully. Those who came were there and totally healthy. Stem cell donation is voluntary and free of charge. The stem cells connection, but my health has certainly benefited: Margaret has given me her robust because they wanted to be with me, they read to me, listened to me, and stayed when are taken either from the bone marrow or from the blood. The Austrian stem cell Welsh constitution. Saturday, 27 June 1998: A transfusion, not like anything I’ve ever had I fell asleep, exhausted.

32 33 Sunday, 28. 6. 1998: Panic attacks in the morning. Because of the well; the extra Navoban works wonders. I hardly felt sick at all, I felt well all of me at home: my mother and father, Sabine, Barbara, thank you for being that good. Many of them have little energy, they soon get tired. They feel the adverse chemotherapy I really haven’t been well. I can’t sleep well during the day day. Tomorrow a new stage begins, the transfer to the sterile room. There there for me. I shall never forget that moment; it will save me if I ever have effects, but it seems that no-one believes them. Some find that very hard because they due to extreme anxiety. I wonder whether I should take something to calm are so many really unpredictable things to consider. cause to be annoyed with them in future. feel they can’t do as much as they used to.” Clearly, I belonged to the second type and me down when things are really bad – like now (when I’ve just been sick). fell into a deep hole from which it took me six months to emerge – when my strength 5. Day zero: On 28 June, Sylvia Knapp, university professor at the Clinic for Internal Up to the time the bone marrow was administered, the transplant went according to gradually returned. 4. The donor: “I would have done anything to be able to donate”, says Margaret. She Medicine, who was then a junior doctor, travels to Cardiff with the instructions to bring plan, though it was tough going. Afterwards, the complications set in, and they’re was very nearly unlucky – me even more so. “In December I had my ears pierced. Margaret’s bone marrow to Vienna. It is the first time she’s undertaken such a task. harder to predict. Two to three weeks after Day Zero, the first new cells grow in the 7. And today? I’m healthy, I’m not on any medication and I have my blood checked That was a problem,” she remembers. Because an infection could have entered the She remembers that day on 30 June 1998: “In the hotel lobby they thrust a white box new bone marrow and trigger the ‘donor-versus-recipient’ reaction, which – despite twice a year at the General Hospital. At one of these check-ups, after five years, body through the wound, a week before the operation the whole thing was very nearly with a red handle into my hand. The taxi was waiting for me, it took me to the airport HLA tissue typing – affects all transplant patients with varying severity, the symptoms a doctor said: “There won’t be anything more now.” Healthy people like to ask me cancelled: “I was really upset. We had come so far and suddenly everything was in and I returned to Vienna via Amsterdam. On the flight to Cardiff there were just three ranging from skin changes to organ failure. These new leukocytes carry the donor’s whether overcoming the disease feels like a kind of purification. It’s not that simple. doubt,” says Margaret. She contacted the hospital in Vienna and they gave her the all other passengers. The flight was late; there was a technical failure. I had to catch the genetic material. “The blood corpuscles recognise the tissue surface characteristics of There’s a big danger of trying to get everything perfect in this “second life,” out of clear; the piercing was sufficiently long ago. connecting flight, so I was on tenterhooks. I still remember how I guarded the box with their new environment as foreign,” explains Greinix. Even if the match is very good, gratitude. You’re inclined to think that a gift of such magnitude imposes an obligation my life. I had decided not to let go of it. During the flight I held the box between my there are still fine differences in the case of allogenic donations: “In some respects to make something of it, and get entangled in impossible demands that you make of Depending what the donor decides, the precursor cells needed for the transplant are legs. In Cardiff I had to convince the security staff that the box must not go through the that is an advantage. Patients with controlled ‘donor-versus-recipient’ reactions have a yourself. obtained either from the bone marrow or direct from the blood. Nowadays, donors X-ray machine. There was accompanying documentation, so in the end it was relatively lower risk of relapse. In the process of recognising foreign tissue, leukaemia cells are prefer the extraction of stem cells because it is not painful and is less risky. Blood is easy. It is an incredible feeling, to have that responsibility in your hands. It looks so also recognised and eliminated from the new immune system,” says Greinix. Before the transplant I had said to myself that, if I survive I mustn’t be afraid of anything taken during a session of several hours with a cell separator. The registers inform donors harmless – a half full bag of blood - but I was aware of just how tricky it was.” any more. But during the two years before that, fear had been my constant companion, of both methods. In Germany, hardly any donors are prepared to give bone marrow While I was happy about “Day Zero,” subsequent progress was far too slow for me. I day after day, night after night. Fear of the present, the future, the relentlessness and nowadays, reports Greinix: “Many of them are worried about the anaesthetic.” Like organs, bone marrow and stem cells have to be used within 24 hours. Extremely was fretful, despairing of my physical state, and wanted just one thing: to get out of mercilessness of life as I was experiencing it, fear of failing. Perversely, it’s hard to set precise logistics are essential. Immature precursor cells are needed for the transplant. hospital and back to a normal life. My bone marrow must have noticed I was in a hurry. aside something that has been such an intense part of your life for so long. And then In the case of stem cell extraction, donors are injected with a growth hormone for four As regards blood group, it doesn’t affect compatibility – before the transplant I was A After two weeks it began producing. “I have seen a speck in your blood count,” a nurse you forget from time to time what great gifts can come your way. or five days, which can make them feel as if they have flu. That increases the white positive, but now I am 0 negative, like Margaret. “The plasma and some of the fluid in reported with delight. Once I had saved up a thousand leukocytes, I’d be off. And that’s blood cells from the normal level of between 4000 and 8000/µl to between 50,000 the bone marrow cells are removed. Both the plasma and the fluid contain antibodies how it was. After just four weeks I walked out, with a mask and precise instructions on Margaret and Dylan devote their entire day to us. Not for one second does she or and 60,000/µl. In healthy people, 0.1% of all white blood cells are stem cells. After against the blood group. After that it’s not a problem to let the preliminary stages of what I was or was not allowed to do for the first hundred days: Only eat cooked foods, Dylan want me to feel under any obligation. What I feel from them that day is nothing treatment with growth hormones, that increases to between 7 and 10%. the red blood cells grow on in the bone marrow”, explains Greinix. nothing raw, avoid crowds, do not use public transport. I was allowed to remove the can only be described as love, of the purest type. In the evening we sit together, the mask when at home and in the open countryside. The donor-versus-recipient reaction children have arrived specially and the cautious process of feeling our way is repeated: Donating bone marrow, as Margaret did, is no small thing. During the operation, doctors By about 10.30 p.m. I was ready. As the doctor set up the bag on the infusion stand affected my skin. I had blisters on my ear lobes and sunburn, without ever having been don’t force anyone into something they don’t want to do. Over dinner, as I tell the extract a litre of bone marrow from the left and right hip bones. The operation, under and turned it on, a thunderstorm erupted outside in the first heat wave. I could see in the sun. children the whole story, they listen quietly and attentively without any big reaction. full anaesthetic, lasts an hour. The doctors slave away with their heavy work: setting the red fluid gradually coming towards me along the tube from the adjoining room. Margaret sits beside me, beaming, because she can see how proud the three are of up the puncture needle, drilling through the bone, five sucks, take the needle out again As the bone marrow entered my body, the tears flowed. “All the best for your second Two milligrams of cortisone per kilo of body weight and an exact dose of immuno- their mother. No-one cried this afternoon, but I cried this evening. There was no great and on to the next: up to 50 times. The patient has back pain for several days after birthday”, said the nurse. What did Margaret do that evening? “I had an early night”, suppressors are further measures to deal with the donor-versus-recipient reaction. I emotion: the Evans are too sure of what they’ve done. I know how important it was that and is anaemic and tired for a week. A friend of Margaret’s met her and Dylan on she says. Margaret’s husband Dylan remembers exactly. He was in a hotel room in was already familiar with the cortisone: it acted as a stimulant, gave me an appetite for me to let her see me and to thank her for her gift - even if, for Margaret, it was the their way to the hospital on the morning of 29 June, and said: “She’s going to hospital Cardiff, watching the England – Argentina world cup quarter final. England lost, of and put me in a really good mood as well. One month after the transplant I cycled natural thing to do. – and beaming all over her face!” course, on penalties. uphill and down dale, looking plump and strong. I was delighted to make such rapid progress, but in reality it was a false dawn. I’d become dependent on cortisone. After Doris Priesching studied journalism at Vienna University and has worked at the Standard “It was alright,” remembers Margaret and smiles slightly. “Ok, it was painful – like 6. Day one: Wednesday, 1.7.1998: One day after the transplant. It’s been two months the dose was reduced and I had withdrawal symptoms. I felt exhausted, since 1990. She is currently working on a doctorate in German philology at Klagenfurt someone had kicked me in the back.” But after two days it was all over. On 1 July the a great experience. Today I’m back on the emotional roller-coaster. It’s had no appetite and was depressed. Immunosuppressants added to the problems. I University. nurse told her that everything had gone well in Vienna. The next news she had of me difficult to motivate myself. I am damn well entitled to sleep. In any case, couldn’t hold a glass because I was shaking too much. As well as that I felt indescribably from the stem cell registry was in November 1998. After that she received news of me if I can do something then I will. Don’t always put yourself under pressure. tense, as if something in me was going crazy, not wanting to accept this new body. once a year. You need a lot of sleep now, that’s part of it. My situation here is restricting, I’m furious because I feel helpless. All the same I wouldn’t have liked to miss “Transplant patients come in two types”, says Greinix: “Those who experience the Thursday, 25 June 1998: It’s good to meditate during the ray treatment. yesterday, I was full of immense gratitude and love towards the donor, but donor-versus-recipient reaction suffer more. But those who have no complications Afterwards I feel calm and content. Now in the evening I can sum things up also towards everyone who could not be at my bedside but were thinking – well, their nearest and dearest may say: you look wonderful! But they don’t feel

35 34 Karin Rondia studied medicine at the CANCER TREATMENT “dormant” for the rest of the person’s life, whereas the treatment (whatever it may be) carries a high risk of causing unpleasant complications: 60% impotence and 5% University of Liège (ULB), Belgium. urinary incontinence, among others. Are we moving towards scaling In an article that we will be publishing next month, Prof. Louis Denis, of the University She began her career in 1984 at of Antwerp, one of the great European specialists on the prostate, repeats this with things down? conviction: with prostate cancer, in most cases it is enough, in all consciousness, to the newspaper “Libre Belgique” and monitor any changes in the levels of PSA in the patient for several years and only also worked for various Belgian TV intervene if these levels suddenly start to rise. As this cancer develops very slowly, Should all cancers be treated? The question seemed to be an improper one until recently. there is never any urgency (except for well-known exceptions). stations. In 2002 she produced the independent But in medicine ideas evolve and even the evidence is sometimes questioned. Breast cancer: over-diagnosis? documentary “Radio-Schizo”. Rondia created the he result generally aimed at by conventional cancer treatments is to eradicate the biotechnology area of the “Centre de Culture Tvery last cancer cell. This is a logical view given that even one cell can give rise to In the case of breast cancer, a fairly similar trend is becoming apparent. A number of a metastasis and it is generally the metastases which ultimately take the patient’s life. highly-respected publications have recently drawn attention to the steady increase in Scientifique” in ULB and organized several projects in the number of cases of breast cancer in recent years. This may appear logical, given However, in recent years a number of mavericks have been questioning this established that systematic mammography screening is increasingly widespread in many countries. collaboration with the foundation “Roi Baudoin”.Since fact. Is it really necessary to treat all cancers? And use the heavy artillery to obliterate However, the same logic would dictate that, once all the unrecognised cancers have the very last one of them? The price is sometimes a heavy one, even a very heavy one, been detected by this screening, the number of new cases found would fall. But this 2006 Rondia is chief editor of the health magazine National in terms of the patient’s quality of life. What is a life worth when it no longer has any is not the case. One explanation would be that systematic screening does indeed lead Depuis juin 2006, rédactrice en chef du magazine quality? The question is therefore not only a scientific one but an ethical and even a to a certain degree of “over-diagnosis”, revealing some tumours which would regress philosophical one too. spontaneously or which would develop so slowly that they would not have any clinical Equilibre, mensuel de santé indépendant (sans impact. The figures published are impressive: this could apply to up to one third of publicité) à destination du grand public. winner Last May the journal Nature published an article by a certain Robert Gatenby (1), a the tumours detected by mammography according to a meta-analysis by the Nordic researcher at the Moffit Cancer Centre in Tampa (Florida), stating that it was time to Cochrane Centre in Copenhagen (2). change the strategy against cancer, the current one being doomed to certain failure. According to Gatenby, we are using the same typical 20th century approach with Bet on the future tumours as was used against bacteria, with antibiotics. Now these blanket battle tactics have reached their limits, because of the resistances that have emerged. Gatenby These are, of course, only figures, which cancer specialists on the ground take with points out that cancer cells too can develop resistances and suggests that, rather a large pinch of salt. They fear that such thinking could discourage women from than seeking to annihilate them, they should be kept under active surveillance and undergoing systematic screening, which it has already been so difficult to accept as prevented from progressing and spreading. By doing so, patients could be spared routine. That would not of course be a solution: as everyone knows, the earlier a the most aggressive treatments, which are often also the most costly ones in terms cancer is detected, the greater the chances are of curing it, and this is more true now of quality of life. The statement is a bold one and startles many cancer specialists. than ever. The ideal scenario would be an ability to detect from the time of diagnosis However, in reality, this view has already made some headway in some people’s minds. whether a cancer risks becoming highly aggressive, slightly so, or not at all. Advances Here are a few examples. in recent years have already allowed (and will continue to allow) great leaps forwards in this direction, in particular with the genetic analyses of cancer cells. Prostate cancer: long-term surveillance These advances have, moreover, already made it possible to start this scaling-down Prostate cancer is a good starting point. We know that, in most cases, this cancer in some cases. Among the new chemotherapy regimens being tested today, some are affects men who are already elderly and progresses very slowly, to the point where the going in the direction of lower doses, treatments better combined with each other person with it often dies from something else – not from his cancer but with his cancer. and above all better targeted to each woman and each tumour. And radiotherapy Belgium For this reason systematic screening of the population is currently advised against: it is performed on ever more accurately targeted areas, thus sparing the surrounding detects the presence of many cancers at very early stages but a third of them remain tissue. Surgery too is becoming less and less invasive: instead of total mastectomy,

36 37 today lumpectomy is preferred in which only the tumour and its surrounding tissue be changing there too. A very recent study carried out in the Netherlands (4) looked and fulgurant, others are slow and indolent. Others lie between these two extremes. are removed. In other types of cancer too, the trend is to scale things down: in some into the way in which patients make choices when the choice is left to them. 150 men We need ways of more accurately identifying how aggressive each cancer is in order bronchial cancers and some lymphomas, for example. with early prostate cancer were given the choice between two doses of radiotherapy: to be able to adapt the treatment strategy on a case-by-case basis. A great deal of one mild, with fewer side-effects and the other strong, with more likelihood of a cure. research is being carried out on this, particularly in the area of molecular biology, Ecology and evolution They were asked whether they wanted to choose themselves or leave the choice to and the first results are coming. When faced with the most aggressive cancers, the the doctor. 73% of them wanted to choose for themselves (whereas the doctors had objective of the treatment is to eradicate the enemy. It is a matter of life or death. In However, the approach advocated by Gatenby goes far further than these careful thought that only 51% of them would want to do so) and 75% of those who wanted to other, less critical situations, there is already a trend towards more limited treatments, experiments in reducing the burden of the treatment. Do not forget, however, that these choose opted for the low dose of radiation (a choice that the doctors thought only 20% even ‘mere’ surveillance. Emphasising these ‘tailor-made’ types of management means are still only purely theoretical ideas. What this cancer researcher is highlighting is the of them would make). And when they were asked what worry had guided this choice, having to determine ever more exactly the actual characteristics of each tumour. The emergence of resistances induced by treatments, unfortunately a scenario already well survival time was not considered as important as quality of life and the side-effects extreme variety and complexity of the cancers means, in the meantime, adopting a known in modern medicine: “For 50 years, he writes, oncologists have tried to kill as connected with the treatment. very nuanced approach.” many cancer cells as possible using increasing doses of more and more powerful and toxic cancer drugs” And he points out that, exactly in the same way as invasive species We may therefore be entering a new era of cancer treatment, where the patient has adapt to pesticides and bacteria to antibiotics, cancer cells adapt to the new medicines more of a say and where quality of life is more centre stage. Because there are many targeted at them. And even, he adds, the more aggressive the treatment, the more we who say that they would prefer to live for a shorter time but with a certain well-being, are seeing resistant cells, exactly in the same way as with antibiotics. than longer with a greatly reduced quality of life. But this presupposes that everyone Hence the idea of seeing whether the strategies of the battle of ecology could not be receives the clearest information possible on his or her condition in order to be able to judiciously applied to the treatment of cancer: in the same way as farmers no longer choose in full knowledge of the facts… aim to eradicate the elements that invade their fields, but maintain them with respect and only intervene when the situation becomes threatening, cancer specialists could References : devise “soft” therapeutic regimens consisting of lower but more constant doses in their cancer treatments. In short, make the tumour go from the status of being a 1. Gatenby, Nature Vol 459 28 May 2009 foreign body to the status of being a chronic illness, the fundamental course of which 2. Jørgensen &Gøtzsche, BMJ 2009;339:b2587 (doi:10.1136/bmj.b2587) is monitored and in which only the acute episodes are treated vigorously. This would 3. New England Journal of Medicine 2009;360:1320-1328. reduce the progressive pressure which promotes the emergence of resistances, and 4. Ned Tijdschr Geneesk.2009;153(13):600-6 spare the patient the side-effects associated with high doses of drugs or radiation. He does not deny, however, that new problems could arise from this approach, in Box: What do the specialists think? particular the appearance of other forms of toxicity connected with the duration of the treatment. Prof. Yves Humblet, oncologist, Cliniques universitaires St Luc, UCL: “These are interesting ideas, but they do have their limits. I think that cancer treatment today, We have all dreamt about “the miracle cure” for cancer, but is this not an illusion? Is it which in particular considers the relationship between the tumour and its host, is perhaps time to come to terms with the enemy? As Gatenby writes, “instead of putting already far more targeted than it was in the past. But each cancer is a special case all our efforts into a glorious victory, is it not time to also consider the benefits of a and it is always dangerous to put out ideas which are too general. Preference should possible status quo in some situations – no matter how uncomfortable this solution always be given to open dialogue with your doctor. I of course agree unreservedly that may seem?” patients should be listened to more.” Dr Nicole Barthélemy, radiotherapist, CHU du Sart Tilman, ULg : “The law on patients’ Right to choose rights says that they are entitled to suitable, complete and sufficiently well-supported information, enabling them to choose the treatment they prefer. In this information, as The most difficult thing, in practice, is to bring the patients themselves to accept in our clinical practice, we are therefore obliged to distinguish between established data, the idea of living with their cancer. Therefore in the case of prostate cancer, where data based on sufficient proof and newer data which still have to be confirmed. Our the active surveillance or deferred treatment strategy has clearly proven the most thoughts are changing but we also have to base our decisions on proven treatments.” appropriate in some cases (3), those affected often jib at living with what they consider Dr Didier Vander Steichel, Fondation contre le Cancer “The progress made by research to be a sword of Damocles. At least that is what the doctors think. But things may gives us a better understanding of the extreme diversity of cancers. Some are aggressive

39 38 Iskra Tsenkova graduated from the an assortment of 20 medicines in different combinations. The miraculous medicines Dr. Hiller’s cocktail are administered intravenously to the fully anaesthetised patient for 6-8 hours. 24 Sofia University “St. Kliment Ohridski” hours later the addict is 100% clean and has forgotten all about his drug. He leaves a new man – with dulled down receptors, a bag of pills and the instruction to take them in the speciality of journalism in 1994. Nine years on, the Israeli physician is here again, promising to cure addicts regularly. Other addictions are treated innovatively – with an intravenous injection and with his revolutionary method. His misleading advert guarantees swift a medicinal attack. As the Israeli doctor says in one of his interviews, there are no Since 2004 she has been an editor deliverance from all vices. The method is expensive, not proven effective incurable dependencies, there are only incompetent physicians. in the weekly magazine of “Tema”. and even dangerous. Is there a place for Dr. Hiller on our health market? In fact Dr. Hiller needs no introduction. The “Miracle worker” is visiting the country for Her main interests are social and is face is familiar. It peeks from TV sets, giant billboards and printed media. He has a second time, but with a new name. This is the same Dr. Yakov Illeri who, surrounded Hcured over 150 000 patients all over the world. Even 250 000, if other adverts are by lavish media attention, loudly advertised his unique therapy throughout Bulgaria in health affairs. Tsenkova has received to be believed. Dr. Jacob Hiller treats people with all sorts of harmful addictions in a 2001. At the time he exercised his innovative approach on the premises of the Military journalist awards a few times. In 2008 she was flash and painlessly, changing their brain by means of a cocktail of drugs. In exactly 24 Medical Academy with the blessing of the health and defence ministries. That first visit hours, he helps heroin and gambling addicts, alcoholics, shopaholics, sex-maniacs, and lasted just six months. After leaving the country in a hurry, he was forgotten. But not by nominated for the cathegory of “report” for the people dependent on all sorts of psychoactive substances. His revolutionary method those he had treated. Nor by their relatives who paid through the nose. Today, Dr. Hiller guarantees an 80 to 100% chance of full and painless recovery even to the most explains that he left because our undertrained physicians brought about the failure of yearly national journalist awards “Chernorizets irredeemable drug addict. his method and robbed him. And yet he comes again. Yet again, inundating the media Hrabar”, organised by the Union of publishers in National with promises of curing all addicted in the country with his “magical” injection. Dr. Hiller’s clinic in Sofia opened its doors at the end of November last year. In less than Bulgaria. a month, two heroin addicts, seven alcoholics, five nicotine addicts and one dependent According to his website, he has a wealth of experience from around the world. It says gambler were admitted for treatment. The latter, Vesko Zerliev, lead singer in music there that “Dr. Hiller has applied his methods of treating addictions worldwide. For band Atlas, even showed up at Dr. Hiller’s second press conference as living proof that example, he collaborated with San Raffaelle University Hospital in Milan (Italy), Charité winner the method, which national experts in the treatment of dependencies have doubts Hospital of Berlin University (Germany), Clinica San Rocco in Switzerland, El Senado about (or, according to Hiller, fear, because it will lure their clientele away), really works. Hospital in California (USA), Military Medical Academy in Sofia (Bulgaria), CMC Hospital Vladimir Svetlozarov Mitev was born “I’ve undergone all sorts of therapies, but to no avail. Dr. Hiller cured me with a single in Lausanne (Switzerland), clinics and hospitals in Austria and other countries of the injection. I don’t know what was in it. When I stood up, I felt a little dizzy. I paid 2,300 world.” in August 1983 in Rousse, Bulgaria. lev, but I would otherwise have blown at least 30 000 on gambling so far. I wouldn’t have painted a single painting, or written a single song.” When asked whether it was Is he lying or just padding his CV? He has a B.A. degree in Iranology, not his faith in the miracle that did it, the front man answered shyly: “It’s possible, it and is currently doing a second might have been suggestion… All I know is it happened after Dr. Hiller’s injection.” TEMA sent an inquiry to the Charité University Hospital in Berlin and received the following reply: “We are unfamiliar with Dr. Jacob Hiller and his unique method. We B.A. in International Relations. He Who is Doctor Jacob Hiller? have checked in our database and have not found his name. We believe a 100% recovery in the treatment of addictions is impossible.” The letter is signed by Ralph has been working for the magazine of “Tema” “Dr. Hiller is a renowned world-class expert in treating physical addictions and other Berger. Is it possible that despite their rigour, the Germans are wrong? since November 2008. Mitev’s main interests are unhealthy habits.” This is what his website says. He is an anaesthesiologist and lung specialist, a graduate of the High Polytechnic University in Haifa, and has a PhD in Dr. Lazar Uzunov, a psychiatrist at the Military Medical Academy, finds thе�������������� Charité������������� reply international political and economic affairs. This neuropharmacology from the University of Tel Aviv. inexplicable. Dr. Uzunov is convinced the «ultrarapid opiate detox» method, or UROD as it is known, has been used in the Charité hospital, and has also been used to treat is his first nomination for an European Journalist Dr. Hiller claims he invented his method over two decades ago while looking for a Bulgarians. One of them really kicked his heroin habit in exchange for 5,000 euros and Award. way to help a friend’s son. The method is a result of his combined knowledge and a six-day stay in the Berlin hospital. Then the German specialists asked Dr. Uzunov experience in the fields of resuscitation, anaesthesiology and neuropharmacology. It is to guarantee that he would take over our countryman’s treatment after the detox. Bulgaria also a result of long years of practice and of his discovery that the key to addictions is «The man came to my office with all his documents issued by the Charité,» claims Dr. the altered brain chemistry. To counter harmful addictions, he cleanses the brain with Uzunov.

40 41 It is also certain that Dr. Hiller used his method in the CMC Hospital in Lausanne, manager. Hiller is here only to train his Bulgarian colleagues to use his method. The Hiller manipulates his patients’ trust by saying one more thing. According to him, the “For us, Hiller is not legitimate. He has not presented his treatment programme at the Switzerland. This fact is confirmed by a Bulgarian woman who managed to contact anaesthesia itself is done in Tokuda Hospital, in compliance with a signed contract. method can cure anyone, if that person is sufficiently motivated. In practice, however, National Centre for Drug Addiction, nor to the Certificate Commission. The procedure Hiller after one of his tours in Bulgaria and to undergo detox in that hospital in 1998. strong motivation can produce good results even without UROD. And things can work for using a therapy in Bulgaria is the following: a commission examines the programme An administrative inquiry carried out by the Regional Health Centre in late December out fine even without motivation. Being motivated for a therapy is a dynamic state, and advises the health ministry to authorise the therapy,” explains Sonya Toteva, The UROD method has also been applied in the San Raffaelle Hospital in Milan. That is 2009 shows that the medical centre has not broken any rules under the Bulgarian changing not only by the day but also by the hour, and maintaining motivation depends director of the State psychiatric hospital for alcohol and drug addiction. what Dr. Eli Alon, a pain conditions therapy consultant in the Zurich University Hospital, Healthcare Establishments Act. But this is just an administrative check. on the clinical skills of the therapist, professionals say. For any therapy to be effective, testifies about in his reference letter. When asked about Dr. Hiller’s professional the patient must be physically stabilised and accept the long-term requirements of his Shortly after Dr. Hiller’s clinic opened its doors and his advertising campaign caused reputation and the effectiveness of his method, Dr. Alon replies: «I’ve known Dr. Hiller Hiller has found one more loophole in our legislation – his method is neither authorised treatment. In fact, UROD can be used for a very small number of patients with opiate a scandal (after a publication by journalist Veselina Bozhilova from “Mothers against since he worked in Israel and I believe he is a good anaesthesiologist. I’ve rarely been nor unauthorised in Bulgaria. dependency, as described in the DSM-IV (Diagnostic and Statistical Manual of Mental Drugs” on the “BG Factor” website), the National Centre for Drug Addiction issued an in contact with him for the last three years. I don’t use his method and haven’t studied Disorders) in the USA or the ICD-10 (International Classification of Diseases) in other official statement disagreeing with the use of the method in Bulgaria, because it had it. The UROD method countries, including ours. It is used only for addicts with serious physical conditions, not been proven effective and carried health risks for patients. whose life is at risk during the 7 to 10-day period of an ordinary withdrawal. This The Ethics Commission in Zurich rejected his applications three times Which method are we really talking about? The UROD method? If yes, this method means the method is suitable only for 0.5 to 1% of opiate addicts (1 in every 100-150 The statement, signed by Dr. Tsveta Raycheva, director of the Centre, also reads: “In is not Hiller’s. If not, which method is it then? In any case, the clinic’s website clearly of them). Of course, it can be used for the other 99% too, but why? Serious research 2005, a team from the US National Institute on Drug Abuse (NIDA 2) conducted a for different reasons. I know that Dr. Hiller has a licence to practice only in Israel.” states that it cures dependencies – with a shock dose of a cocktail of medicines. shows that UROD is no more beneficial than traditional detox, while there are much randomised study, comparing the method for ultrarapid opiate detoxication to two other greater risks for the patient’s life and it is many times more expensive. The method traditional detox methods. Results for the three groups are similar and the ultrarapid We asked Dr. Yigal Leikin, a professor at the University of Trieste and Udine (Italy), It was me and my three colleagues from the CITA Research Institute who invented the cannot be used for people addicted to amphetamines, cocaine, hallucinogenics, alcohol opiate detoxication method does not demonstrate advantages over the others.” a similar question and he was angry at our investigation. Still, he confirmed that he method,” Dr. Hiller told TEMA. “Andre Weissman from Israel, Dr. Yigal Leikin from Italy and other non-opiates. It is not recommended anywhere in the world, except in the and Dr. Hiller have successfully applied the ultrarapid opiate detox method in several and Dr. Juan Legarda from Spain – though I was the leader. Weissman is a good physician, rare cases mentioned above. Dr. Hiller is not at all a bad man. He is just a seller of miracles. His procedure costs hospitals, including the Charité. we have worked and served in the army together. He is a psychologist, however, and heroin addicts 5,600 lev, alcoholics 2,400 lev and shopaholics 1,700 lev. Hiller advertises cannot prescribe medical treatment. That is why we cannot say it is his method. We It is known as a “business method”, as it generates a lot of revenue without being very a success rate of 80% for his method, compared to 4% for all others. The results “Hiller has not worked at Mount Sinai in New York, not since 1992 anyway. Mount Sinai worked together, all of us, but then big material interests got involved. They fought efficient. from research around the world show that, following a properly performed short-term is a chain of hospitals. I have personally spoken to the HR director there. The inquiry over money and we went our separate ways.” In fact, treating a withdrawal syndrome detoxication and long-term therapy, on average 35-40% of patients do not relapse for I made showed that Dr. Hiller has never held a post there, despite the top duties his by general anaesthesia has been known for a long time and was not introduced by In his advert, Hiller claims that – unlike other therapies – only his unique method of five years and lead fulfilling lives. The level of effectiveness is the same as in treating websites ascribes to him. There is a Bulgarian who has worked in Mount Sinai for 20 Hiller, Weissman or Legarda (according to Google). CITA’s massive and misleading cleansing the brain treats the disease rather than the symptoms. But in reality successful other chronic medical conditions that are prone to relapse, such as diabetes. years and who has not heard anything about him either,” claims Dr. Igor Kutsenok, advertising campaign is not a new practice either. detox is not correlated to successful treatment. Hiller speculates with addicts’ despair director of the Center for Dependencies and Dependent Behaviour at the Psychiatry and hope. The method helps the patient go through the withdrawal period quickly and Misled by his promises, many parents are ready to sell their house to help their children. Department of the University of California in San Diego. “Over the last few months, the Australian electronic and print media have been praising relatively easily. But the same can be achieved with ordinary detox lasting just a few Dr. Daniela Aleksieva, psychiatrist and Horizons Medical Centre manager, remembers the UROD method for its 60 to 100% success rate in curing heroin addicts. The more days. The State psychiatric hospital for alcohol and drug addiction in Sofia offers a few such cases from nine years ago. In 2001, she was invited to assist Hiller in his It is possible that some of the facts in Dr. Hiller’s CV can’t be confirmed because he statements are initially made as part of a professionally organised media campaign by its patients detox treatment for free. In the Military Medical Academy, detoxication procedures. His method was used to treat 16 people at the time. changed his name. But Hiller is also difficult to track for another reason. As Dr. Eli Alon CITA/ATT, an Israeli-Spanish organisation, but are then repeated by opponents of the for civilians costs 19 lev a day, including everything – room, board and the treatment says, he is a licensed practitioner only in Israel. In fact, Hiller does not practice as a treatment. Despite having no convincing evidence of UROD’s effectiveness, CITA/ATT itself. You can also try the most drastic, though not recommended route – “cold turkey” What happened 9 years ago? physician outside Israel; he only introduces his method. has tried to obtain a patent for it and turn the treatment into a franchise. CITA claims – complete isolation for about 10 days, involving much pain and discomfort. UROD is the UROD method was discovered by the Spanish psychologist Dr. Juan Legarda. But chosen mostly by rich addicts around the world, but the problem is … “Two well-known generals supported me; I am a colonel myself. I got permission from Is he legitimate in Bulgaria? the method is first described by researchers from the Vienna University in a series of two ministries – health and defence – and everything was fine”, recounts Dr. Hiller. articles, published in international journals from 1988 to 1991. In his first and only the method doesn’t work. Dr. Hiller does not have permission from the Bulgarian health ministry to practice in publication in 1994, Dr. Juan Legarda refers to the findings of the Vienna group and “In 2001, Dr. Hiller came to Bulgaria for the second time. Before he opened his clinic Bulgaria, nor is he registered with the Regional college of the Bulgarian Physician other scholars. CITA/ATT’s marketing campaign is distorting the scientific process and Withdrawal symptoms are just one of the tens of manifestations of dependent behaviour. under the auspices of the Military Medical Academy, General Rumen Zlatev, then Union – but he doesn’t need to be. Hiller finds a way around the regime of licences is unethical. The professional community should denounce this and similar attempts to The struggle with addiction and the path to true recovery is very long and cleansing the director of the hospital, asked health of defence ministries for formal approval of the in this country. This time he is here under the patronage of Venza Group Corporation use mass media to bypass the scientific journals.” This is an article by John Caplehorn, body from the drugs is only the first step. According to the World Health Organisation, method. I was head of the National Centre for Drug Addiction at the time and had to – an offshore company, registered on the British Virgin Islands. He is one of the three Master of Medicine from Sidney University, published in 1997 in the Medical journal of successfully treating an addict takes at least seven years. If the method is so efficient, give my opinion”, says Dr. Georgi Vasilev, psychiatrist, who today is manager of the owners of the company’s medical centre. There are five Bulgarian physicians working Australia. why not use it in Bulgaria? In many EU countries, it is even forbidden. Perspectives Medical Centre, which specialises in treating dependencies. “The method at the centre. Dr. Tatyana Valova-Ilieva, an internal medicine specialist, is the centre’s is used to overcome withdrawal under full anaesthesia with the help of naltrexone, a

42 43 well-known drug in Bulgaria that triggers drastic withdrawal in dependent opiate users. method. They started using it without even mentioning my name,” protests Dr. Hiller while in the meantime our dependency specialists are hard pressed to find an effective her every step. At first, she started drinking, but she couldn’t take it. She still doesn’t During the approval tests the second time around, we noticed the method carried all when asked what his injections consist of and whether he has patented his method. therapy. drink, she says. She spent a lot of time and money repairing the damage the drug the risks of full anaesthesia. At the time full anaesthesia was performed in the Military had wreaked. Now she has a child and runs her own business. She is convinced our Medical Academy. The results showed that 80% of the patients experienced practically According to his website, he has a patent for dependency therapy covering 120 This is not the first time Bulgarians have lavished money on an untested treatment. doctors united against Hiller, because he is the only one to cure addicts, while they pain-free withdrawal. The other 20% wake up in a state of continuing withdrawal, countries. Even if the medicines he uses are legal in Bulgaria, that does not mean they Toxicologist Dr. Nikola Aleksandrov, today head of Evrozdrave Clinic, who Dr Hiller make money on their back. During our conversation, she constantly repeats, “To make quite agitated. In isolated cases, a lethal outcome is possible. The body experiences treat addictions effectively. accuses of stealing his method when they worked together in the Military Medical it happen, you have to want it yourself, not just your family.” the state of withdrawal as a great disturbance. The brain might not be able to follow Academy, for a long time used to treat addicts with intravenous morphine injections. this task through. Detoxication is only the first step; it is the preparation for the real “If Dr. Hiller really treats dependencies by biological means, he should present molecular, Until he was uncovered by an investigation for the TV programme “Clean Slate”, he treatment. The dependent person must take naltrexone for six months. The drug is an magnetic resonance and other neurophysiological evidence,” reflects Dr. Kutsenok. simply signed morphine prescriptions, the patient bought the drug at the chemist’s and ZHORO, treated 9 years ago at the Military Medical Academy antidote. It acts as a false key which unlocks the opiate receptor but blocks the entry “Hiller claims therapy is unique for every patient, that there is no standardised therapy. injected it at home. For years, no state institution had attempted to check whether of real opiates. Many stop taking it, because they don’t like that it stops them from The former is true, but not the latter. If he trains physicians, he should be relying on this was legal, effective, safe or ethical. Dr. Hiller’s case is similar. This is not so much When I woke up from the anaesthetic, I felt like I’d been run over by an express train. getting high. For addicts, the treatment requires a lot of effort, motivation, struggle standard criteria. If Hiller’s therapy succeeds in Sofia, the same therapy for the same or about science as about ethics. But the Ethical Committee of the Bulgarian Medical I didn’t need heroin, my medicine, for just the first 10 minutes. I felt awfully bad, when with themselves and support from relatives, as well as ongoing therapy with a qualified similar patients should have the same results even in Papua New Guinea when applied Association is waiting for the case to be formally referred to it, before it examines it. I think about it now I get the chills. There were some who couldn’t stand on their feet professional. The battle with dependency is not as short and easy as Hiller paints it. The by Dr. Johnson, for example. If that doesn’t happen, then we have a Kashpirovsky- Actually, Hiller is just a consequence of what goes on in our healthcare system. after they had woken up. I couldn’t believe I managed to get up and go home the method has its good and bad sides. It works, but the problem is how it’s presented to like phenomenon. In other words, we’re dealing with a messiah, an unacknowledged same day. A girl fainted right after she woke up. But at the press conference, they only patients. Some of our colleagues tried to use it afterwards too, but they quickly gave genius, a preacher.” The patients’ story showed those who’d regained their feet and felt relatively well. up. They saw how far it goes.” We are sure Hiller owns at least one patent – for medicinal therapy for mitigating withdrawal symptoms in smokers. The patent is registered with the World Intellectual RENI, treated in the CMC hospital in Switzerland I ached all over, although I took the prescribed drugs. When I came home, for two Dr. Daniela Aleksieva, a psychiatrist, examined all of Dr. Hiller’s patients both before Property Organization. It is not authorised for use in the USA but is valid in a number weeks, I had to take huge doses of sleeping pills just to be able to nap for an hour or and after the procedure. She remembers cases of patients who were very anxious after of other countries. She worships him and is convinced that thanks to him she’s now living a new life. two. Besides that, I was ill and felt terrible. I got by like that for maybe three weeks. the end of the anaesthesia and wanted to jump out of the window. A girl found a way Eleven years ago, her treatment in Dr. Hiller’s clinic in Switzerland cost her $10,000. Then, I started lying to my folks that I was taking the pills; I hid them under my tongue to get high right after waking up. At present, three of Dr. Hiller’s patients at the Military The effectiveness of a treatment is proven by comparative, randomised and, if possible, Her parents sold an apartment to get the funds together. and then threw them away - so I could keep doing heroin. I was told doing drugs while Medical Academy are members of the methadone programme at the Horizons Centre placebo-controlled (to exclude the Kashpirovsky effect) studies. To minimise the “I was his first patient from Bulgaria. Afterwards, many people asked us for his phone taking the pills would be a catastrophe. And when you skip once, their effect stops 24 she is running. After the detoxication, some of Hiller’s patients immediately dropped subjectivity of results, they are also double-blind studies. The conclusions are published number. Some also went to Switzerland, others to Tel Aviv,” Reni tells us while chain- hours later. So I went back to my old ways, as if nothing had ever happened. out the treatment. Some went to communes abroad; others went back to drugs. Dr. in scientific journals. The good thing is, some of Dr. Hiller’s patients managed to get rid smoking. She smokes three packs a day, but stays away from heroin. She says she Aleksieva took up and followed the rest for six months. Some of them relapsed too. of their problem with his help. Unfortunately, anecdotal evidence has not yet replaced turns her head away when she meets a drug addict. She has put her past behind her, Some Italian psychologist advised my parents they should stop taking care of me and “Even if some did ditch their heroin habit, it was not due to Hiller’s miracle method. I its scientific counterpart and is not sufficient justification for mass application of the although the needle marks on her arms still show. just throw me out of the family home. So they did. In 2004 I went to a commune thought even then that this is an experimental method that has not been proven. It method. Dependencies are a bio-psychosocial phenomenon requiring a systematic in Italy, financed by charities and the church. I was monstrously addicted to heroin. can be compared to the naltrexone treatment programme, combined with urine tests approach and medical intervention of all types – this is just a small part of modern “I started when I was 17, straight on heroin. At first I smoked it, then I injected it. At There, I started with methadone in decreasing doses. I liked it; I didn’t live in isolation, and psychotherapy once a week – a comparison that is not favourable to ultrarapid integrated therapy. 22, I was a wreck. They brought me back from the dead several times. I still remember there were no walls or keys. I could work. I was together with Italians, a Russian, detox. I insisted that patients also be followed up by specialists after the period of how a neighbour would say to my father “Why don’t you let her die in peace, why do Moroccans. At 25, I was the youngest of them all. I saw people at 55, who were intensive treatment,” stresses Dr. Aleksieva, “because dependency is a disease of the Today, Dr. Hiller has enhanced his working procedures. He employs two psychiatrists you torment her? I had Hepatitis C, all my organs were gone. I tried everything to stop. making yet another attempt to stop the drugs. Maybe that’s what stopped me from brain and shows in people’s emotions and behaviour, things that can’t be influenced by in his clinic to follow up the patients. “Using psychiatrists like this is unlikely to change I went to private psychiatrists, through complete isolation, unorthodox treatments, going back – the pitiful sight of a grown man begging for a fix. I didn’t want to spend medication alone. Their psyche is not changed, nor is the craving for heroin. They lack anything,” says Dr. Vasilev. “Hiller doesn’t say directly “I work wonders”, he just methadone. It hardly helped at all.” She stayed in the hospital in Lausanne for just 24 my whole life in such a complete state of dependence, never having found a way and the physiological need, but the psychological dependency remains.” promises impossible things, bordering on miracles. You go to sleep an addict and you hours. Around noon, they plugged her in and when she woke up the next morning, the strength to cope. I spent a year at the commune, the last 3 months without any wake up a new man. You have paid a ton of cash to have your brain changed with a feeling renewed, she had no idea how long she’d been asleep. She was cleansed, medication. I managed to fool the psychologists and my parents that I’d recovered and Dr. Hiller’s cocktail single injection. The method is expected to be a magic bullet, a cure that requires no without even going through withdrawal. The next day, she was home, with a bag of could go back to Bulgaria. I missed my friends and my girlfriend, who had dumped me effort from you.” pills to last her 6 months. “Getting clean can be done “cold turkey” – but the mind?” in the meantime. I came back. And… went back to drugs. I’ve got three addict friends Dr. Hiller does not reveal its ingredients. He claims all the medicines he uses are Reni asks. “You pick up the phone and you get in touch with your old buddies.” So she in my building alone; all it took was to see them and we immediately got high. registered in Bulgaria. We concede this point – otherwise we’d be talking about clinical “Everyone is against me, because I’m the only one here curing people,” protests Hiller. managed it with the help of a psychiatrist? “No psychiatrist,” Reni shakes her head. “You medicine trials and not about treatment. “Your country is corrupt. Many people in Bulgaria make profits from the methadone are clean and your brain has been changed. You don’t need drugs or psychiatrists.” I’ve been back on methadone for a year and a half now and really want to kick the programmes without curing the drug addicts”. He might be right, but the private habit this time. I work in an auto repair shop and go downtown every other day to get “Here, I trained Dr. Nikola Aleksandrov and Dr. Dimova, who ended up stealing my methadone programmes he’s referring to first appeared three years after his arrival, After the ultrarapid opiate detox, she changed her lifestyle. Her parents watched over treatment. I came to the conclusion that a drug addict needs to be isolated, literally

44 45 chained to his bed, rather than talked to and told he’ll be clean in 24 hours. Things Have you published scientific papers on your dependency treatment method happen to this “clean” man, that would push him in the direction of the strongest pain- as an author, and where? killer – heroin. An addict can’t forget he has been one. The treatment for withdrawal is not a treatment for dependency. It’s not a headache you can get rid of with a handful “To publish a scientific paper as an author, a full description of the quantities and of pills. composition of all medical substances used must be made, but considering that no two drug addicts are alike, it’s impossible to put together a control group of addicts Poorly trained staff make the treatment fail and give them a placebo, and consequently it’s impossible to conduct a “double-blind study.” Moreover, giving a placebo to a patient in a critical condition betrays a profound Dr. Hiller, what type of patients does your method fail to work for, and ignorance of the pathophysiology of withdrawal. Every drug addict is different and there why? is no standard treatment for everyone, i.e. treatment is individual. There are addicts “The method doesn’t work – and we don’t use it – for patients with severe psychotic doing three, four different types of drugs or psychotropic substances and it’s impossible disorders. They can’t follow the instructions we give them and this upsets the course to describe all possible variations of the treatment. To avoid causing damage to the of the treatment. Also, where patients come at the insistence of their relatives, against patient, medical staff must be trained for 2-3 months and scientific articles should not their will, the treatment is not effective and in fact has negative results. You have to be published because the approach is strictly individual. In all hospitals where I and realise you have a problem and decide you want to be cured.” my colleagues have finished training the medical staff, the treatments are conducted successfully, while untrained or partially trained staff conducting treatments have bad We made an inquiry at the Charité University Hospital in Berlin, where you results with further complications. Unfortunately, bearing in mind the great financial claim to have cured many addicts. According to them, your name is not in potential many colleagues start treating patients without the necessary knowledge in the hospital’s database. Can you explain that? this field.

Prof. Wolfgang Koks, head of the resuscitation and anaesthesia ward at Charité has come 8 times to watch the treatment of heroin dependency in the San Raffaele hospital in Italy, and at his request we started a German company together, Med Hilrod. This company began actively treating patients in 1997 in the resuscitation ward at the Charité. I trained the team of doctors together with Prof. Yigal Leikin from Italy. After a 7-month collaboration, the company stopped working at the Charité due to financial issues. Nevertheless, Prof. Koks and doctors led by him continued treating patients despite the fact that our contract had ended.”

On your website, it says you’ve worked in the Mount Sinai Hospital in New York. You reportedly also introduced the method to El Senado in California, but our check failed to find this hospital in the full list of inpatient and outpatient establishments in California. And in Mount Sinai, they’ve never heard of you. “There is a medical centre in Beverley Hills called Dr. Weissman El Senado.” Dr. Weissman, Dr. Leikin, Dr. Juan Jose Legarda and Dr. Hiller – that’s me – were partners in the CITA company which introduced the treatment method in Italy, Spain, Israel, Switzerland, etc.. I’ve been treating dependencies for 20 years, but have been a doctor for 35, and not all of my knowledge and years of practice are related exclusively to the treatment of addictions. I have never treated dependencies in Mount Sinai; I have specialised in anaesthesia and resuscitation, lung disorders and clinical pharmacology. Many of the places mentioned in relation to my practice in many countries are not at all related to the treatment of addictions.”

47 46 Sofia Theodosius was born in The legislation on the quality and safety of blood has been adopted but The legislation exists, but... never applied! Limassol, Cyprus in 1982. In 2000 The shortage of blood due to mismanagement is the greatest problem faced by she graduated from the Apostles thalassaemia patients. This also results in problems with the quality and safety of Thalassaemia patients lodge a the blood. Luckily there have been no cases in recent years of thalassaemia patients Peter and Paul high school. In 2004, being transfused with blood infected with, for example, hepatitis. However, there have she obtained the University degree complaint against Cyprus with been cases of patients transfused with different blood types! The issue of safety and in Greek Literature from the Aristotle quality is covered by European Directives (Directives 2002/98/EC and 2005/62/EC), Europe which have been transposed into our national legislation (see europa.eu/legislation_ University of Thessaloniki. She continued her studies summaries/). The Directive sets high quality and safety standards for human blood and in France until 2007 attending graduate programs blood components throughout the EU and aims to establish a complete set of binding Despite the State’s promises, Cypriot thalassaemia patients see no solutions rules to be applied throughout the “blood transfusion chain”. in Contemporary Literature and publishing issues. on the horizon to their perennial problems - primarily enough blood for the transfusions they so need, as well as the quality and safety of the transfused Returning to Cyprus she worked for the newspaper blood. This is why they are so determined to complain to the EU Commission Nevertheless, this Directive has not been applied by the Ministry of Health, even though “Politis” as a free-lanced reporter. Currently, she National that the Ministry of Health has delay implementing EU Directives on the it has been more than five years since our accession to the EU. The failure to do so safety and quality of blood. Only the article on haemovigilance is expected affects the availability of enough blood, as well as its testing for suitability. works in the Department of Research and Studies to be implemented, which would not have been the case if it were not for the Office of the House of Representatives of Cyprus winner efforts of the thalassaemia patients... Lodging a complaint and she continues to study History at the University In their statements to “P”, Stelios Kreouzos and Kostas Kostas, publishers of the of Cyprus. t is not uncommon in Cyprus to hear calls for blood donations over the radio and Thalassoporos magazine – which is published for thalassaemia patients – revealed Itelevision due to the shortage of blood. Blood shortages can arise as a result of traffic that the Ministry of Health established a committee a few months ago to investigate accidents or complications during surgery, both of which increase the need for blood the failure to implement the European Directive. This committee has only met once, and result in shortages. The 350 Cypriot thalassaemia patients are often... left in the and to no avail! The two publishers have also criticised the Ministry for failing to set lurch, since their own transfusions are postponed on account of emergencies. However, a timetable for solving the problem, despite their persistent efforts. “We requested postponing a thalassaemia patient’s blood transfusion means depriving him of his right a meeting with the minister in September 2008, and the meeting was scheduled for to “live”, work, take care of his family and meet his daily needs and obligations. Things October 2009!” get even worse when these postponements are constant. A thalassaemia patient told “P” that he has often had repeated transfusion postponements, up to three in a row, In an article in Thalassoporos, Kreouzos wrote: “This is the last straw; the group particularly at times when the demand for blood was high. Imagine what it must be of thalassaemia patients is running out of patience with the Health Ministry’s delay in like for your child to see you looking pale and almost bedridden, just because the conforming to the EU Directives on the safety and quality of blood”. authorities have not made an effort to remedy the shortage of blood. And to think In fact, the magazine has revealed that a group of thalassaemia patients is seriously that blood donors form a large part of the population! It is truly tragic that 40% of the blood ends up in discarded due to poor management. Based on the information we considering the possibility of carrying its complaint to the EU Commission to insist that have gathered, this waste of blood, which as we have mentioned deprives some of our the Ministry of Health fulfil its obligations. Under the heading “No more lies, Europe has fellow humans of their life, is mainly due to the private clinics, which do not return units the say...”, thalassaemia patients show that they have no other choice. of blood unused after surgery to the Blood Bank. Cyprus The magazine has also disclosed that representatives of the task force have consulted with the Under-Secretary to the Cypriot President, Titos Christofides, the European

48 49 Commissioner Androulla Vassiliou, MEPs and MPs, and have informed them of the wait... The data presented six months ago by the Thalassaemia Association shows that management of blood and has been developed at the initiative of thalassaemia set up in collaboration with the Health Ministry. We will undertake to train the doctors unacceptable – as they emphasise – delay of the Health Ministry to align itself with 528 of 6,649 blood transfusions were postponed in 2006, 706 of 7,048 in 2007 and 811 patients with the participation of the Thalassaemia International Federation, the in order to create the proper infrastructure for its subsequent operation. In a second the Brussels Directive. They have also sent a clear message via the Thalassoporos of 7,319 in 2008! University and the Ministry of Health – via the Blood Bank – and with funding from phase, the Ministry itself will put the system into operation”. magazine to their interlocutors, stating that if the problem persists, they will have no other option but to lodge a formal complaint with Brussels in November. the Research Promotion Foundation and other organisations (but not the competent Haemovigilance is “an extensive system for monitoring and recording unwanted 40% of the blood ends up in the bin Ministry). However, following its completion, the programme got caught up in the occurrences or events connected to the collection of blood, which ensures the safety A. Vassiliou displays a critical attitude Minister’s failure to take a political decision. The reasons for shelving the programme of transfusions and prevents the transmission of infectious diseases”. For example, if a Though it may not seem so, Cyprus does not lack blood donors! According to Zoe are unknown. Whatever the case, Mr Kostas has assured us that the implementation virus occurs, the Haemovigilance system will detect it and prevent it from spreading. In an interview with Thalassoporos, the EU Health Commissioner Androulla Vassiliou Sidera, deputy director of the Cyprus Blood Centre, over 7% of all Cypriots are currently cost is in no way prohibitive. However, this is not possible in Cyprus at the moment, as no such system exists. In stressed that five years since Cyprus’ accession to the EU is enough time forany volunteer blood donors and this number is soon expected to reach 8%. The tragic part Member State to implement the Directive. In her answer to a question on this matter, ELPIS has two objectives: Europe, on the other hand, apart from the national systems there is also a European is that according to studies, if 5% of a population donates blood, then the quantities Ms Vassiliou made it clear that Cyprus should have already implemented the Directive Haemovigilance Network in which various countries participate and from which they on the safety and quality of blood. collected are enough to cover any blood needs! So where does all this blood go? 1. The development of an information system to automate the process receive immediate updates on the events taking place in the blood sectors in the other of blood donation. The blood will be monitored from the moment donation participating countries. The magazine has also published an interview with the MEP and former president of the Investigations conducted by a technical committee of Dutch scientists appointed by the until the moment that someone else receives it, as required by the European Parliamentary Committee on Health, Eleni Theocharous, who revealed that the Ministry Health Ministry itself have shown that 40% of the blood ends up in the waste disposal! Directives. How to relieve thalassaemia patients of Health had undertaken – before Parliament – the responsibility of solving all the This wastage is attributed to the mismanagement of blood and poor coordination of perennial problems concerning blood donation by aligning itself with the Community services. How can this problem be solved? Well, by applying the European Directives. Mr Perikleous, President of the Pancyprian Thalassaemia Association, pointed out to “P” 2. The automatic notification of donors. Up to now, appeals for blood Directive. However, the Ministry of Health is unable to fulfil its commitments. However, the Ministry of Health does not seem prepared to do so... that the Health Ministry could immediately resolve the problems faced by thalassaemia donations have been made through posters and radio or television spots. patients in terms of blood donation by aligning itself with the European Directive. The Transfusion: from one postponement to the next Through the ELPIS programme, calls will be sent to blood donors automatically. Some will hasten to point out that there have been very few postponements of Association’s recommendations for directly improving the operation of the national An officer of the Blood Bank will search the database to find out which donors transfusions in thalassaemia patients over the last four months. This is true, and the Blood Centre, based on the European directives and relevant Cypriot legislation, can There are currently about 350 thalassaemia patients in Cyprus who need one unit of of a specific blood type, who have not donated blood in the last six months Thalassaemia Association has expressed its satisfaction and gratitude for this. Both be summarised as follows: blood on average every two weeks, depending on the medical history and lifestyle of and who live in the vicinity, are able to donate blood on a specific day. The the large public response to calls for blood donations in August (a crucial month since each patient. The reason why thalassaemia patients need such frequent transfusions system will automatically send the call via SMS, email or fax to the suitable many blood donors go on holiday) and the collaboration of various organisations have 1. Immediate staffing of the Blood Centre and, above all, appointing is because their bodies cannot produce haemoglobin on their own and must get the blood donors. The donors, in turn, will respond accordingly. Thus, with one contributed to this. However, Ms Sidera stresses that “the problem of lack of blood a director (editor’s note: the Centre is currently operating under the deputy necessary red blood cells from donor blood. A thalassaemia patient cannot function simple command, the officer will know how many units of blood he can have cannot be solved definitively unless the Cyprus Blood Centre and rest of the clinical director, Zoe Sidera). The European Directive requires a sufficient number of normally if he does not get a transfusion when he needs it, because his haemoglobin in a day, eliminating the need for emergency blood donations and television sector are properly coordinated”. Coordination can only be achieved if committees are suitably trained personnel with clearly-defined tasks. Based on the opinions of levels drop to the point where he constantly feels tired and weak, inevitably affecting messages. established within the hospitals (as required by the European Directives) to coordinate the technical committee of Dutch scientists appointed by the Health Ministry his quality of life. the collection of blood by the various medical specialties available at the hospitals. itself, in order to be fully staffed the Centre needs a staff of 85. Instead, the “It is inconceivable that we cannot maintain a steady blood reserve for at least three Ministry proposed a staff of 47, which was eventually rejected by the Council Still, the people in charge appear to be indifferent to the quality of life of this group days; that we build it only to have it slip through our fingers due to the lack of proper of Ministers, thus leaving all positions vacant. of fellow citizens, as evidenced by their delay in applying the EU Directives and failure At least the Haemovigilance System is advancing planning!” to implement programmes that would improve the standard of blood donations. And Loizos Perikleous, President of the Pancyprian Thalassaemia Association, has informed 2. Appointment of a medical officer (a haematologist with education and so the problem of blood shortages has intensified over the last few years, inevitably ELPIS programme shelved “P” that the Association has already received verbal approval and will be signing with experience in blood transfusions) to train and instruct doctors in public and resulting in frequent postponements of transfusions for thalassaemia patients. EEA Grants before the end of the week. EEA Grants is to finance the creation of a private medical centres on how to achieve the best management of blood. Emergency patients and accident victims in need of blood transfusion are always given We have also spoken to Kostas Kostas, the coordinator of an innovative research Haemovigilance system in Cyprus, with a budget of 30,000 Euros. “The system will be priority, while thalassaemia patients who are “not in urgent need” are called on to programme named ELPIS. This programme provides for the organisation and

50 51 3. Appointment of a laboratory officer with experience in qualitative management to the Centre’s Blood Testing Section.

4. Relocation of the Blood Centre to properly designed and suitably equipped premises, compatible with the European Directive.

5. Immediate start of accreditation procedures, i.e. certification from independent centres abroad that the blood donation procedures followed in Cyprus are correct.

6. Immediate creation of a haemovigilance system, starting with the establishment of committees in each hospital.

7. Immediate application of new and safer laboratory techniques for testing blood, such as the NAT technique.

Captions:

If 5% of the population donates blood, then Cyprus can cover its blood needs. Cypriot blood donors represent approximately 8% of the population. The problem then is not the lack of blood, but its mismanagement.

According to data presented by the Thalassaemia Association, 528 of 6,649 blood transfusions were postponed in 2006, 706 of 7,048 in 2007 and 811 of 7,319 in 2008!

53 52 Silja Paavle holds a degree of social An Estonian woman is suffering from a disease that has been puzzling Natalja admits that she has not talked much about her illness to anyone. This is a doctors all over the world very painful topic for the young woman, who is currently a third year student of gene pedagogue and has two children. She technology at the University of Tartu.

has been working as a social worker In her daily life Natalja depends to a great extent on her sister Irina, who is also her A rare disease has made Natalja’s appointed caregiver, and on her father Boris, who drives her where she needs to go. and case manager for handicapped Natalja cannot walk long distances, and actually she does not really need to since she people. Since 1991 her articles have life hell. “It’s very painful. has lost many of her friends due to the illness, and she does not feel strong enough to go to parties. Natalja’s life is limited to medical visits and lectures at the university. been published in various Estonian Sometimes I can only move by She cannot imagine her life without the university. It is the only thing – besides the newspapers and journals. Scottish Fold kitten that a special someone gave her – that keeps keep her mind off her crawling on my knees” illness. Natalja’s professors support her studies and recommended that she not remain on academic leave for two years in a row.

“I’m not happy. But I have a feeling that it will get better. I cannot imagine living Legs that turned into bleeding stumps in just 9 months with these ulcers all my life,” sighs Natalja, who suffers from a rare disease called National scleroderma. It all started in 2000, when Natalja was discovered to suffer from a systemic connective tissue disorder with an unknown origin. Back then she went to see a doctor because of persistent bruises on her legs. cleroderma is a condition that affects the connective tissue, articular surfaces, Sinternal organs and small blood vessels. 70 to 95% of people suffering from She was prescribed pills that kept the disease under control for five years. “Then the winner scleroderma develop hard-to-heal skin ulcers caused by poor circulation. blotch of skin that was still blue turned pale and dry and I developed a horrible pain Skin ulcers on her feet have been the biggest cause of distress for Natalja Shebunova and skin ulcers” remembers the young woman. (21) during the last couple of years. On really bad days, there is no space between the ulcers – the entire surface of her feet is bleeding. Because of constant skin ulcers she had to start taking antibiotics daily. From then on, two-week long treatments in hospital would alternate with two weeks at home. No way to wear closed shoes Then one day proteins were detected in a urine sample and doctors suspected that the disease had reached Natalja’s kidneys. Fortunately this was not the case. However, Over the last couple of years, Natalja’s skin has become markedly atrophied, i.e. dry the resulting nine months without antibiotics had made the disease so aggressive that and blue-tinted, as have her hands and breasts – so much so that she would never Natalja’s feet turned into bleeding stumps. dream of wearing revealing clothes even on the hottest summer day. As if this were not enough, in autumn Natalja has to face another concern: she cannot wear closed Constant treatments with antibiotics had made the bacteria residing on her ulcers shoes. Her joints have also been damaged; she cannot put weight on her heels and resistant to lots of medications, and therefore her rheumatologist Reet Kuuse contacted there is no skin on her ankles. a hospital in Florence, Italy where some of the best scleroderma specialists in the world are found. One of them, Dr Marco Matucci-Cerinici found Natalja’s case very interesting Agonizing pain is Natalja’s daily reality. “Sometimes it hurts so much that I can only and agreed to examine her. move on my knees at home. In the morning I have to crawl on my knees to get to the bathroom. I take painkillers three times a day” says the pretty woman about her “They had so many patients with the same diagnosis who looked good and could illness. Her dark eyes are full of deep sorrow. manage their own life. I had spent the last couple of years mostly in hospitals!” was Estonia Natalja’s first reaction.

54 55 In Italy, Natalja met a Japanese dermatologist who told her that her particular case However, since the treatment has already yielded some results, Natalja would not want quality of life” says Dr Kukk. was such a difficult one that even Japanese doctors would find it difficult to treat. to give up on it. “I cannot imagine that my future would mean living with such ulcers. I simply need to wait.” she says with a dash of hope in her otherwise sad voice. “I really hope that the stem cells that have been transplanted during Natalja’s four On the initiative of Professor Marco Matucci-Cerinici, they tried to treat Natalja with visits will finally do their duty” she adds. pills at first. After a while, however, it was decided to experiment with hematopoietic People wishing to contribute to this young woman’s treatment in Italy can make stem cell transplantation (HSCT). “Getting all the papers in order took a bit of time but donations to Natalja Shebunova’s bank account in Swedbank: 221018580731. Dr Kukk says that Natalja’s treatment in Italy can be considered experimental and in the end the ethics committee gave its approval. They considered my case to be an therefore can only take place with the patient’s consent. Such treatment is in her exceptional one – I am so young and already have such big skin ulcers” says Natalja. Estonian doctors lack experience opinion necessitated by the fact that traditional methods have not had the expected She has had four stem cell transplants and is going to fly to Italy next Sunday to have result in this very rare case. her fifth. “The first few times were difficult because there were no visible results. I was Scleroderma is an autoimmune disease that is usually treated with immunosuppressive really miserable” Natalja sighs. She is more positive now as the ulcers have got slightly agents, explains Dr Ain Kaare, head of the department of haematology and bone better and she has been able to go almost a month without antibiotics. marrow transplantation at the Haematology and Oncology Clinic of Tartu University Hospital. “The professor also said that I am getting better. Albeit slowly,” says Natalja and adds that the doctors and nurses at the Italian hospital have become almost a second family An autoimmune disease means that under certain conditions the immune system, for her. “Professor Matucci-Cernici is like a second father to me. He treats me as if I normally responsible for protecting the body from infections and tumours, starts was his daughter” says the woman, deeply moved. attacking healthy tissue. Immunosuppressive treatment aims to stop the body from attacking itself. Natalja has visited laboratories in Italy in order to find out if she could work there in the future. She would be particularly interested in stem cells and scleroderma, of course. Such treatments may harm the blood-forming tissues and thus HSCT can restore inhibited blood formation, says Dr Kaare. In Estonia, hematopoietic stem cell transplants “I just have to wait...” are performed in Tartu University Hospital and in the North Estonia Medical Centre.

Before starting to work, however, she needs to get her health back in order. To do that, “Indications for HSCT include various tumorous conditions of the lymphatic and Natalja has to travel to Italy once a month. Although her treatment costs are covered circulatory systems. In the case of autoimmune diseases, it is rather more experimental by the Estonian Health Insurance Fund, Natalja’s plane tickets and accommodation than standard treatment.” says Dr Kaare and adds that in technical terms the procedure costs amount to approximately 1600 euros every month. is the same no matter what the disease.

Natalja’s parents are ready to give up everything for their daughter and have also According to Dr Kaare, in Estonia no HSCT have been performed for autoimmune borrowed money from their friends. Her own monthly income – state support of diseases, but should there be an interest from rheumatologists and patients who need 290 euros – is spent entirely on medicine. Natalja has also received some support from it, it could be done. the Tartu city government. Scleroderma treatments require patient consent Being a good student, Natalja hopes that as of October she will start to receive a monthly scholarship of approximately 38 euros from the University. “Maybe then I On average, 25 scleroderma patients have turned to the Dermatology Clinic of Tartu could afford to have something nice!” she says, her eyes lighting up. But the spark University Hospital each year during the past five years, and seven or eight of them goes out as fast as it appeared: “Actually I have to spend all the money on my visits were younger than 18. to Italy” she says. Dr Terje Kukk, a teaching doctor of dermatovenerology from the Dermatology Clinic, Some people think that being in a different climate may also have contributed to the has been keeping an eye on Natalja’s case and especially on her secondary skin improvement of Natalja’s health. “This may be true because my wounds do not hurt so infections. She says that Natalja is a very brave young woman who has managed to much in Italy. The bad thing is that I do not feel so well in the 43ºC heat,” she adds. accommodate this chronic disease in her life. “I think that this is what gives her the strength to cope daily, although the disease has had a very strong influence on her 57 56 Katarina Malmberg holds a master Thoughts were bouncing around her head. She asked the doctor whether she had a Hope conquers fear fortnight or a month to live. degree of social sciences in journalism. Knowledge subdues fear After graduating she worked as an Fear of death is a crushing, debilitating feeling. But it can be overcome once associate editor and editor in chief for you accept the fact that every life is cut short. For Virpi Romppainen, cancer Fear of death is rarely a rational emotion. Dr Irja Idman, specialist in psychiatry, struck at the height of her happiness. describes it as a flash of emotion that feels both extremely threatening and final, like a the magazine of the Student Union sudden realisation that overrides all other previous experiences. irpi Romppainen gave birth to her third child in 2004. The labour went by the book. of the Helsinki University. Malmberg VShe’d had a good night’s sleep, and Artturi was born around 8.30 in the morning. Shock and the fear of death are common feelings for almost all cancer patients at first. Dr Idman treats cancer patients at the Meilahti Hospital Department of Oncology in continued working as associate editor “My husband had gone home to see our older boys, and I stayed in the hospital with Helsinki. In her experience, the parents of small children are often the ones who need, and journalist in different Finnish the little one”, Virpi reminisces. and get, the most therapy. magazines and newspapers. For the last ten years While the baby slept, she sent text messages to her loved ones telling them about the “The first thing to check is that the necessary cancer treatment can be administered. happy occasion. A nurse came in to check on how the mother was doing. She was That the patient is able to endure the treatment”, Dr Idman explains. she has been working as a journalist for the Hyvä doing great. Terveys (Good Health) magazine, writing articles National Some patients are completely incapacitated by the diagnosis. They have to be helped “I was so happy”, Virpi, 42, says. beyond the initial shock. on health and medical science. Then she remembered something that she had pushed to the back of her mind. Half- To do this, patients must be given both information and reassurance. In the case of way through her pregnancy she had noticed a lump in her breast, which doctors had cancer, patients have to learn to live with uncertainty. Dr Idman believes that feeling winner told her was probably just a swollen mammary gland. But she had been advised to ask anxious is a perfectly normal reaction. Examinations, results, treatments, and operations about it again once she’d given birth. are all frightening.

Virpi decided to see to it there and then. So she told the nurse about the lump. “Going through something like that is quite a learning process”, Dr Idman says. The nurse called in a doctor. The doctor said that the lump, which by then was the size of an egg, had to be examined straightaway. Virpi was scheduled for ultrasound, For Virpi and Vesa Romppainen, having three young boys meant that life had to go on mammography and a fine-needle aspiration biopsy the next day. regardless. “I was a little nervous, but I still slept relatively well.” “Vesa was definitely the one who kept me going in the beginning. He just kept reminding A fortnight or a month me that we had a beautiful new baby boy”, Virpi recalls.

The doctor’s first words were: “I’m so sorry.” After Virpi’s diagnosis, her husband took six months off work on paternity leave.

Virpi was lying down on the examination table after the biopsy. The doctor took her The older boys – Aku, aged 7, and Roope, 8 – have known about their mother’s illness hand. The room was deadly silent. since the beginning.

“You have breast cancer.” “Whenever they asked me about death, I just told them that mommy wasn’t going to die now. Mum’s got a serious illness, but it’s going to get treated.” “Help! Wake me up from this nightmare”, Virpi remembers thinking. “How will I tell my Finland husband, and my boys? My family and friends? I don’t want to die. Is this what I got for having been so happy? My life must have been too perfect.”

58 59 The healing begins “And I was seeing a psychologist. Plenty of tears there.” In the autumn of 2005, Virpi finally had the mastectomy she had been pushing for. Virpi now works in an old people’s home looking after patients with dementia. She thinks it’s important to have another environment outside the home where she can feel The first glimmer of hope for Virpi was when she first went to the hospital after her Virpi also got involved with online support groups which she had initially found during “I didn’t like the thought that there were still living cancer cells in my breast. I wanted appreciated. Her three boys keep things lively at home, while the dementia patients diagnosis to hear – as she thought – her “sentence”. her pregnancy. them out”, Virpi says. provide a calming, soothing environment.

“I was basically expecting to be told that I would die – or not.” “Peer-to-peer support was extremely important to me. Some of the people on the The surgery revealed another tumour of 19 millimetres. Virpi felt cleaner after the In March this year, Virpi underwent breast reconstruction surgery. Her other breast was cancer forums had had the illness come back several times. And still they were talking operation, even though she knew that the cancer could still be hiding somewhere in reduced at the same time to make both breasts the same size. Instead, she was greeted by a wonderful nurse who told her that this was “where the about going back to work.” her body. healing begins”. The doctor then explained that there was something in her tumour “I haven’t had breasts this small since I was a young girl”, she says. that made her oncogene generate several times the number of cancerous cells that Virpi’s husband came with her to all her cancer treatments. The family was always Secretly proud normal tumours do. This amplification of the HER2 gene is found in approximately one given a free baby-sitter for the days when Virpi had to go to hospital, and Virpi and From fear to growth fifth of all cancer patients, but a targeted drug has been developed for treating it. Virpi Vesa often took the opportunity to go out for a meal without the children. Virpi visited Even when cancer treatments are not too rough on the body, they produce certain was to be put on a drug called Herceptin in addition to chemotherapy. the hospital every three weeks for chemotherapy and Herceptin treatment. changes. There’s dryness of the mouth, irritation of mucous membranes, and potentially Cancer patients are sometimes tormented by irrational fears, unrealistic expectations, hair-loss. There’s also nausea. Just knowing what is normal and what can be alleviated or paranoia. It’s important to be able to trust and rely on other people when recovering “Fingers crossed”, said the nurse. The treatments were tiring, but they made Virpi find joy in even the smallest of is a big help. from a serious illness. achievements. She managed to put up new curtains for Christmas, and that was the Before the treatment could begin, Virpi had to undergo staging tests to determine extent of the Christmas decorations. “Cancer treatments are progressing all the time, and people have a lot of preconceived “There are people who for some reason perceive the treatments prescribed by doctors the spread of the cancer: chest X-rays and an ultrasound of her upper abdomen. A ideas about them. For example, many think that they will instantly start to look like as a threat to their independence”, Dr Idman explains. metastasis was found in her liver. “I cut out everything unnecessary. I enjoyed being able to spend time with the kids. I cancer patients and will have to make excuses to strangers”, Dr Idman explains. didn’t care whether the house was tidy or not.” Patients can always say no to treatments. From a psychiatrist’s point of view, the cases Virpi was told many times that she wouldn’t recover. Virpi’s treatment gave her relatively few side effects. She felt tired after each procedure, where there is no cure are the most difficult of all. Once treated, a cancer can come By mid-January, the tumour in her breast had shrunk considerably. but she did not feel nauseous. back and become chronic. The symptoms are nevertheless always treated, and that “By that time I had generated enough hope and faith to think that the treatment would can give hope and make daily live more manageable. see me through. I didn’t have time to think about death.” “I could no longer feel it with my fingers.” “At one stage my pony-tail was about the thickness of my little finger, but I didn’t have to resort to a wig at any point.” “It’s very important for patients to feel that there are ways to make things better and Still, self-pity and grief were ever-present. Sitting in playgrounds, Virpi compared Mastectomy was not considered helpful in Virpi’s case, as the cancer had spread that they are not alone”, Dr Idman explains. herself to the other mothers and wondered whether she would have to give all this up elsewhere. Instead, Virpi underwent a hysterectomy and ovary removal in order to Virpi went to the pool with her children on a regular basis and actually felt secretly soon. She didn’t think that she would ever work again. prevent her own oestrogen production from accelerating the spread of the cancer. proud of only having one breast in the showers and the sauna. Recognising the limits of your own power is always a big challenge. Once patients are able to accept their own vulnerability and deal with their fears, they can grow “When one of the mothers in the playground asked when I would start taking kids for Surgery wipes the slate clean “I wanted people to look at me and think: ‘three boys and only one breast but she’s and become stronger. People who are at peace with their mortality are unlikely to get day-care again, I was shocked. Could I?” still going strong!’” stressed out over insignificant details. They know how to value their time here and When Virpi’s own hormone production stopped, she was worried that she would start appreciate the little things. Plenty of tears getting menopausal symptoms. She wasn’t getting hot flushes, but she was having A new breast and a new job mood swings that affected her concentration. She was prescribed antidepressants, “Happiness can be when you overcome your fears or when you don’t have any pain Dr Idman believes that structure is important for fending off depression. which made things a little better. Virpi has talked about her breast cancer openly throughout the illness. and can listen to the sounds of household chores coming from the next room.”

Virpi spent her sick leave working on her garden, jogging, and playing outside with her “I was also sad that the decision about whether to have more children or not was no “You sometimes read about people on the Internet in particular who’ve had their cancer Dr Idman believes that the most important thing to remember is that we are all unique children. longer ours to take”, Virpi says. treated but who constantly worry about it coming back. It’s like they can’t move past and that not everyone has to have the same goals in life – that we can come to accept the illness.” our own mortality without feeling despair. “I had to stay active. There was no way I was going to let myself get lazy.” “We joked about it, saying we could always adopt if we decided that we wanted While Virpi was taking the boys to the park, her husband was busy doing housework more.” Despite her chronic cancer, Virpi is living life to the full. Returning to work was an and cooking for the family. important step. In the end, Virpi and Vesa decided that three was enough.

60 61 Virpi has realised her life-long dream and applied to study nursing. In practice, this will Lung cancer 658 (8%) “I was close to tears then. And then I had my large glass of brandy. After ten minutes Dr Antti Rannikko, who works as a urologist in Meilahti Hospital in Helsinki, the number mean studying a couple of days a week every fortnight alongside work. Bladder cancer 520 (73%) I realised it wasn’t doing any good at all.” of prostate cancer diagnoses has gone up mostly because of the increased use of PSA testing. Other factors contributing to the increase in the number of cases include the Virpi is happy with her life, and there are days when she doesn’t even think about her Women (cases per year, 2007)/survival rate after five years (approximately) Heikki was scheduled to attend a meeting that evening to plan an event promoting ageing of the population and probably also fatty diets with little fish or vegetables. illness. Breast cancer 4 031 (89%) peace. He went to the meeting and participated fully. After the meeting, he told his wife. Epithelial cells produce PSA in semen, which helps to keep semen in its liquid form. Bowel and colon cancer 1 044 (59%) The letter with the results told Heikki that he’d already been booked an appointment When cancerous cells multiply uncontrollably, that disturbs the physical structure of “I go out to dinner with my friends, and I’ve also learned to let myself be lazy. If I get Skin cancer 948 (90%) with a urologist. the prostate gland, and PSA is released into the bloodstream. This causes the above- tired, I just take a break.” Endometrial (uterine) cancer 737 (85%) normal PSA levels in prostate cancer patients. The prostate grows with age, which also Lung cancer 372 (12%) The letter arrived on a Thursday, and Heikki went to work as normal on the Friday, even makes the level of PSA in the bloodstream higher as men get older. This means that though he felt a little weepy at breakfast. On Friday evening, Heikki and his wife drove older men often have a higher PSA level than young men, and so what is considered 3 BOXES: to their summer cottage in Kemiö, where he went jogging, picked wild mushrooms, a normal PSA level depends on the patient’s age. For example, a PSA level of 4 can be Sidebar: and continued working on a new garden shed. He felt at peace again. perfectly normal in a 70-year-old patient but not in a 40-year-old. Psychiatrist’s advice/Virpi’s solution (Heading) In good hands The appointment with the urologist revealed that Heikki’s cancer was not of a particularly Monitoring is sometimes enough • Keep doing everyday things. /“I worked on the garden, went jogging, and played aggressive kind. The doctor suggested active monitoring, which meant that Heikki Finland participated in a major European prostate cancer screening trial, the results of outside with my kids.” (Caption) Active monitoring gave Heikki Männikkö time to think about his would have to come in for PSA screening every three months, a biopsy once a year, which were published in the spring of this year. The study concluded that PSA-based • Don’t hide from the world. /“I looked for peer-to-peer support online and saw a cancer. and a urologist’s examination every six months. screening reduces the death rate from prostate cancer by approximately 20% (in men psychologist.” aged between 55 and 69). • Explore your fears. /“I felt it was important that my breast was removed.” “My only symptom was that I couldn’t squeeze out the last few drops when I went to “That all sounded very good to me. I thought that I might never have to go through According to Dr Rannikko, PSA screening could potentially also help men aged between • Accept the fact that your illness has changed you. /“I’ve taken time for myself and the toilet”, Heikki explains. radical treatments and that maybe new, better treatments would be discovered as my 40 and 55, as elevated PSA levels in this age group have been shown to be indicative rested when I’ve felt that I need to.” illness progressed”, Heikki explains. of prostate cancer in later age. The problem with screening is that the tests often find • Live in the moment, but don’t give up your dreams. /“I applied to do a course in He mentioned the fact to his doctor at his 60th birthday check-up in 2005. The doctor cancers that do not require treatment. nursing.” sent him for a PSA screening test for prostate cancer. Heikki’s PSA level was slightly He had complete faith in the monitoring approach, as the doctors seemed to know Dr Rannikko is participating in an international study that looks into the possibility • Recognise the fact that your life is unique. /“I live life to the full despite my chronic elevated. However, a fine-needle aspiration biopsy showed no cancer. what they were talking about. Heikki’s progress was monitored actively for a total of of treating non-aggressive prostate cancers by means of active monitoring. Active cancer.” two years, during which he continued to work and live as normal. Heikki sees that monitoring means that PSA screening is repeated every three months for the first two In addition to potentially having cancer, Heikki was worried about the biopsy. What period of his life as a learning experience, as it gave him an opportunity to think about years, a biopsy is taken after one year and again after four years, and a urologist’s Seven stages of dealing with a crisis would it feel like? How is it done? his illness and his approach to it. examination initially takes place every six months. “50-70% percent of patients can be treated by means of active monitoring, as many 1. Shock: “I feel crushed.” “It turned out that the procedure is simple and relatively painless”, Heikki says several When he eventually took a turn for the worse and had to have prostate surgery, Heikki prostate cancers never progress or only progress very slowly”, Dr Rannikko explains. 2. Denial: “There’s been a mistake.” biopsies later. was relatively calm. 3. Withdrawal: “I don’t want to see anyone.” Robots or radiation 4. Anger: “Why me?” About six months later Heikki went back for another screening, and his PSA level was “I was prepared for it, and I’d already decided that I would have the operation if it If the situation changes during the active monitoring period – or if the patient wants it 5. Passive acceptance: “I meet with other people who have suffered the same fate.” higher still. It was now 7, when a normal level for a man of his age is under 4. Heikki came to that.” – prostate cancer can be treated with surgery or radiotherapy. Surgical and radiotherapy 6. New life: “Is there life after this?” was referred to a urologist who sent him for more biopsies and ultrasounds. The results treatments for prostate cancer have also advanced. In Meilahti Hospital, most prostate 7. Return of hope: “I live in the moment.” were to be mailed to him at home. Heikki waited anxiously for the results, although he Heikki, now 63, had his prostate removed in January this year. Examination of his removal operations are carried out by a robot. The benefits include a fast recovery (Source: Riitta Laine, “Why me? And what is my prognosis”, Edita 2007) was already relatively certain there would be a cancer diagnosis. lymph nodes confirmed that the cancer had not spread to other parts of his. time, and patients can be discharged from hospital the very next day. “With this kind of surgery, we can save more of the nerves that control erection. Common cancers “I decided that if I tested positive for cancer, I’d have a large glass of brandy, and that Urinary continence can also be preserved this way”, Dr Rannikko explains. if the tests were clear, I’d still have a large glass of brandy.” BOX: Radiotherapy can be given both externally and internally these days. In internal Men (cases per year, 2007)/survival rate after five years (approximately) (Heading) Do all cancers have to be treated? radiotherapy, tumours are treated by placing seeds of radioactive iodine inside the Prostate cancer: 4 005 (89%) The letter, when it came, was quite difficult to understand and had lots of different tissue. No healthy tissue is destroyed. The treatment is tailored to each individual Bowel and colon cancer: 1 062 (60%) numbers, but one thing was clear: Heikki had prostate cancer. Prostate cancers are in most cases diagnosed on the basis of a high PSA level. PSA patient’s needs. Skin cancer 978 (82%) screening tests first began in Finland in the late 1980s and early 1990s. According to

62 63 Therapist on standby Dr Pirjo Lehtolainen, a therapist specialising in urology in Meilahti Hospital in Helsinki, sees all of the hospital’s prostate cancer patients. She is also always on call to help patients to deal with the emotions that cancer can bring to the surface. “Some of our patients are worried about the pain and want to talk to me about that”, Dr Lehtolainen explains. Patients are comforted by giving them information about the treatments and medication. Some patients want to know whether famous cancer survivors have received some special kind of treatment. According to Dr Lehtolainen, the answer is “no”. Patients with prostate cancer approach their mortality either with fear or with humour. Talking to a therapist can be a big help. “Some patients are extremely worried about erectile dysfunction”, Dr Lehtolainen explains. Most men suffer from some degree of erectile dysfunction after the operation. Surgery itself is scary enough, but the long wait before the operation can be stressful as well.

65 64 Célia Laherre studied at the “Institut MEDICINE WITHOUT BORDERS My doctor speaks Romanian. Supérieur Européen de Gestion” in France and Romania are a perfect case of this “medical highway” phenomenon. Mobility within the European Union also applies to the medical sphere, In France, approximately 12% of foreign doctors are Romanian. Since 1 January 2007, Bordeaux and has a Bachelor Degree resulting in a freedom which leads to problems as well as advantages. The when Romania joined the European Union, the number of Romanian doctors who are in Communication and Marketing. failings of medicine without borders are described below. members of the French Medical Association has risen from 174 to almost 1,000. She then got her post Masters 17 May 2011 will see the start of the European summit on medical tourism - the Central Directly, through fairs or agencies, French rural municipalities have no difficulty at all and Eastern Europe Medical Tourism and Healthcare Summit in Zagreb, Croatia. This recruiting specialists and general practitioners seduced by the promise of salaries 10 degree in International Purchasing is the opportunity for countries such as Romania, Serbia, Bulgaria, Hungary, the Czech or 15 times higher than Romanian salaries, not to mention the attendant advantages Republic and even Poland to attract the attention of medical tourism agencies, medical (accommodation, a place in a crèche, a consulting room and help with setting-up, from the Bordeaux Business School. associations, hospitals and consultants from all over the world. etc.). In 2009 she worked as a trainee here is no denying the role played by European enlargement in the change in What happens to the doctors once they have set up? The picture is mixed: some for the French TV channel TF1, which confirmed Tbehaviour and medical practices within the European Union. The question have problems adjusting; communication with patients is difficult, isolation, etc. Many underlying the existence of a summit of this kind is as follows: to what extent can the attempts ultimately end in failure. But more worrying still is the fact that the Romanian her taste for Communication and Media and her EU be blamed for the failings in our medical systems? Migration flows inside the EU public health system is suffering from the full force of this massive exodus. Romanian desire to work in this sector. Currently, Laherre is National have been increasing substantially for the past ten years and have accelerated since hospitals have a shortage of doctors. The government chooses to invest in private 1 January 2007, the date of Romania and Bulgaria’s accession to the European Union. clinics intended for foreigners, thus exacerbating an already alarming situation. Without participating in the “Volontariat International en Freedom of movement, the creation of low-cost airlines and then unification and the financing, there are insufficient technical resources and drugs in state institutions. Last recognition of medical studies between the Member States has led to a “European October the main hospital in Brasov temporarily closed its accident and emergency Entreprise” programme in Luxemburg. Medical highway” linking Western Europe to Eastern Europe. Hence professionals leave department because of a lack of drugs and supplies. At the same time, the hospital of winner their countries to practice, students continue their training abroad while patients take the Mehedinti region, in Drobeta Turnu Severin, announced total arrears of 1.35 million up medical tourism. lei, as well as its inability to cover the salaries of its hospital staff.

Matching up the carers and the cared-for The greatest irony is that while Romanian doctors are moving to France, French students are leaving the medical faculties in France in order to continue their medical training The United Kingdom, Ireland, Denmark, Norway, Sweden, the Netherlands, Austria in Romanian universities. Finding themselves the victims of the unrelenting demands and even France and Germany recruit doctors from Eastern Europe to fill the vacancies of the selection process (85% of students fail at the end of their first year), they leave for general practitioners in less attractive rural areas. These countries guarantee these France in order to join establishments such as the University of Cluj, in the middle of adopted practitioners a high salary and the prospect of better working conditions. Transylvania, which has set up a French department. Unlike the French faculties, the University of Cluj charges fees (5000 euros per year) and recruits from file. Today it has While doctors leave to go west, an increasing number of students go in the opposite more than 260 French students. direction to study in Eastern Europe. They are not the only ones to cross borders. Western patients are following the trend. Tired of waiting for weeks for an appointment Assessing the story so far … and unable to pay the high prices for medical procedures (in particular dental and opticians’ fees), nowadays they turn to private practices based in Romania, Hungary, In general, emphasis is placed on the advantages of increased exchanges between Poland and the Czech Republic, no longer hesitating at taking a plane in order to have countries - citing their economic, social, cultural and, in this case, medical benefits. dental implants inserted or to have an eye operation. Nevertheless, simply mentioning the positive aspects is not enough. There is no denying the absurd and paradoxical nature of a situation which highlights the imperfections of France the national health systems.

66 67 Simply studying the initial motivations of the individual players shows clearly the nature of these failings: an English person seeks treatment in Hungary mainly because of the high costs of medical procedures in England. A Romanian general practitioner moves to France in order to escape poor working conditions and a ridiculously low salary. Finally, if French students decide to leave Paris for Budapest, it is not because the medical programme there is more complete, but because finishing their medical studies in France involves a so many hurdles.

This “medical highway” is not only a two-way street but also a double-edged sword. It provides immediate solutions to emergency situations without really eradicating the problem. Just like a bandage, it is ineffective for deep wounds which, without in-depth treatment, will continue to worsen.

…and future prospects

Before turning towards the European institutions, it is the responsibility of each Member State to reform its own health system. In Western Europe, countries such as Germany, England or France are putting in place measures to encourage students and doctors to remain in their own countries. In France, the reform of medical studies, which was voted in last year, aims in particular to increase the ‘numerus clausus’ in regions where there is a shortage of doctors. Furthermore, initiatives are being introduced at local level which are designed to attract young doctors, such as the setting up of “Maisons de Santé” (multi-disciplinary healthcare centres). However, most of the proposals put forward are for the moment finding few listeners in a medical world which is overwhelmed. As far as Eastern Europe is concerned, its governments are also trying to improve their public health systems. At the end of 2009, the Romanian government approved the allocation of an additional 3.2 billion lei to the national healthcare insurance budget. The government is also promising a “radical reform of the health and contribution system”. This is an ambitious project, the exact form of which is difficult to define at the moment.

The changes will therefore be a long time in coming. In the meantime, the “medical highway” will continue to flourish.

69 68 Martina Keller works as a freelance electronic data storage devices. From that moment on, Christoph Broelsch became the The cashier subject of a criminal investigation. science writer for print media In October 2007 he was suspended from his duties at the clinic and his leading senior like “ZEIT”, “Geo” or “Stern” in Christoph Broelsch, the famous surgeon from Essen, will appear in court consultant was given a leave of absence. In November 2008 the Essen public prosecutor next week, accused of demanding money from terminally ill patients submitted a 99-page indictment, followed in March 2009 by a second indictment, 80 Hamburg. before agreeing to operate. The case lifts the veil on criminal activity in our pages long. On Monday next week the surgeon will appear in court in Essen. Additionally, she produces radio hospitals. He stands accused of 36 counts of corruption and 3 of serious fraud against patients. In broadcast features for the German even years ago last May, pensioner Wilhelm Kaufhold was diagnosed as having a the case put by the public prosecutor, Broelsch repeatedly promised patients suffering Sliver tumour the size of a tennis ball. Any hope of a cure? Not a chance, said the from cancer that he would operate on them personally – if they made a donation to public radio. doctors at the local hospital who examined him. If anyone could help him, then it would the clinic’s account. Her main interest is in bio medicine - be Professor Christoph Broelsch, head surgeon at Essen University Hospital, the holder of honorary doctorates from seven European universities and a star player in the world That account, to which Broelsch had personal access, was normally used to hold money transplantation, reproductive technologies or stem of liver surgery. deposited for research and teaching. Sometimes it would be a donation of €1,000, other times €15,000. All in all, it amounted to €185 000. In eight cases, terminally cell research. Another focus is evidence based So Mr Kaufhold and his wife Johanna (not their real names) made an appointment with ill people such as Wilhelm Kaufhold were allegedly invited to make a donation. The medicine and pharma industry. National Broelsch and the doctor confirmed the findings: advanced-stage cancer. No, explained patients desperately hoped that rapid treatment might give them a reprieve, to live a Broelsch, even he could not cure the pensioner. He might be able to prolong his life little longer or possibly even be cured. As a member of “Netzwerk Recherche” Keller is – by a year – but only if the patient allowed Broelsch himself to operate. Later, Johanna remembered that no mention was made of an alternative, surgery by another doctor. Broelsch, who was not available for an interview with Die Zeit, is also facing charges advocating investigative journalism in Germany. of serious fraud against private patients and against Essen University Hospital, and winner And then there was the cost: “€14,000 with an invoice, €7,000 without”. For the tax evasion. He will be represented in court by Rainer Hamm, one of Germany’s most Kaufholds that was a considerable sum – they needed a few days to think about it. famous criminal defence lawyers, who says the accusations against his client are In the end, says Johanna, they decided to pay cash, without an invoice. Although ‘entirely unfounded’. surprised at this strange method of payment, the couple, who had been married for 41 years, were primarily concerned about Wilhelm’s life. He claims the donation money obtained has funded research and thus, by extension, patients. Professor Broelsch has not personally enriched himself, and in no case was On the day her husband had to go into hospital for his operation, recalls Johanna any medically necessary treatment made conditional on payment. The prosecution, (72), he handed the professor’s secretary an envelope containing the €7,000. The having taken almost two years to build their case, see things differently. money disappeared into a desk drawer. Broelsch later warned her husband that in no circumstances should he mention to doctors, nurses or other patients that he was a How could this happen to Christoph Broelsch, of all people? He is, after all, a clergyman’s private patient of the professor’s. son and practising Christian, who always kept a Bible handy on his desk at the clinic. He is the surgeon who operated on the late German president, Johannes Rau, with whom Immediately after the operation, Wilhelm fell into a coma, and two weeks later he died he used to play cards, and a longstanding friend of finance minister Peer Steinbrück, in the hospital’s intensive care unit, with his wife by his bedside. who, after Broelsch was suspended, personally intervened on his behalf with the North Rhine-Westphalia research minister. No outsider would ever have found out about this if a similar case had not occurred in spring 2007, a case which the son of the female patient involved made public via WDR, In 2004 Broelsch was awarded the Bundesverdienstkreuz (Federal Order of Merit) the West German public broadcasting organisation. After that, dozens of patients and for having “enhanced the reputation of the German medical profession abroad”. Aged their families, including the Kaufholds’ son, came forward with similar cases involving just 40, Broelsch was already department head at the world-famous University of Germany Broelsch. The police set up a committee to investigate the clinic and searched Broelsch’s Chicago medical school. Such rapid advancement is achieved by very few German private house, offices and other premises. They seized 50 large boxes full of files and doctors.

70 71 He was a visiting professor at the University of San Diego, Riyadh Military Hospital What happened under Christoph Broelsch in Essen lifts the veil on conditions in German who could pay into his account the full amount required for treatment by the head she says, ‘I would do exactly the same again, even though I know it is wrong’. in Saudi Arabia, University Hospital in Milan and the Surgical Studies Institute at the hospitals: the rigid system of ‘two-tier’ treatment, the absolute authority enjoyed by doctor’. According to this argument, the worst solution would be legal, whereas the University of Pisa. He has operated at the Beilinson Medical Center near Tel Aviv in doctors in charge of departments, the failure of supervisory bodies, and the protection second worst solution might possibly be criminal, which is a bizarre situation. Christoph Broelsch was the doctor for hopeless cases. Where other doctors saw no point Israel and the Egyptian Ain Shams University in Cairo. And he helped set up transplant provided by men’s organisations, based on hierarchies which originated in the Prussian in further treatment, Broelsch had no inhibitions about trying again on the operating centres in Eastern Europe and actively supported the setting-up of an exchange scheme military academies. Experts estimate that a professor of radiology can nowadays earn €5 million a year table. Call it courageous, or call it unscrupulous. A hospital doctor who knew Broelsch for doctoral students with Wuhan University in eastern China, which has an excellent if he is allowed to charge his private patients directly. Christoph Broelsch, who is not in his Hamburg clinic days tells the story of a patient with highly advanced stomach reputation. Admittedly, in Germany, asking patients for a donation before an operation is frowned sensitive to criticism or doubt, feels that in behaving this way he is also morally in the cancer. He describes a desperate man, fighting for his life. Broelsch operated on the upon. ‘It takes my breath away’, says Wolf-Dieter Ludwig, doctor-in-charge at the right. ‘For me’, he says, ‘it was a humanitarian gesture to do more than I needed in critically ill man for almost 24 hours without a break. Several organs in the abdominal Patients waiting in the corridor outside Broelsch’s room at the clinic were treated to Berlin-Buch Hospital. But Broelsch’s behaviour is more than just the high-handed order to help even people like Joe Bloggs’. cavity were exposed, in order to rid them of cancer cells. The patient died in agony a a wall full of diplomas and awards. In one photo he is shown in Chicago in 1989, actions of one rotten apple. few months later. dressed in his surgical scrubs, beside a woman holding her little daughter on her lap. The fact that this statement contains a lie on Broelsch’s part is shown by the case Broelsch had transplanted into Alyssa Smith a piece of her mother’s liver. It was the Famous doctors who are heads of department can demand money quite legally when of Stojan Markovic (not his real name), who set in motion the investigations by the ‘Some surgeons tend to overestimate their capabilities’, says Wolf-Dieter Ludwig, of first successful living-donor liver transplant in the western world – and it caused a they treat a patient with standard health insurance. They are often the only doctors in Public Prosecutor’s Office. A memorandum from the Bocholt health insurance fund the Berlin-Buch clinic, who is also chairman of the German Medical Association’s drug sensation. At the time it was an experiment, but now it is standard procedure, thanks their departments entitled to private payment, which brings in more than double the BKK Gesundheit notes that at the end of 2006 Stojan Markovic was looking for help commission. From time to time he sees the disastrous results of such overestimation in to Broelsch. fee that insurers pay. for his mother, who had liver cancer. The 67-year-old pensioner urgently needed an his own department, Internal Oncology, where patients who’ve already been operated operation, and her doctor referred her to Broelsch in Essen. on are given further treatment. ‘It’s a bad mistake for a doctor to believe that he can The doctor has many admirers. When, in May 2007, the North Rhine-Westphalia research You can hardly blame head doctors for exploiting this privilege to the full. They are always do something in every case,’ he says. ‘In my opinion, a good doctor is one who, minister Andreas Pinkwart called the doctor’s methods ‘outrageous’, 29 former patients reluctant to give up income from private patients, since this allows them to earn the There, she too was given a date for her operation that was later postponed without when faced with an intensively treated advanced cancer, manages to persuade the and colleagues protested in a letter, calling the minister’s comments ‘indecent’. salary many regard as appropriate to their station. Moreover, hospitals are heavily any explanation. When this happened again, several times, Markovic called Broelsch’s patient not to undergo any further aggressive and toxic procedures’. At least then the dependent on the money passed on to them by their heads of department. Some head secretary to ask what he could do to ensure the operating date was not postponed yet patient will still have the chance, for example, to put his affairs in order. A doctor who The signatories included financial tribunal judge Michael Balke. Dr Broelsch had saved doctors pass on over half their income in this way. again. His mother, meanwhile, was becoming very distressed. can’t admit defeat is behaving unethically, says Ludwig. ‘One should not be famous for his life by transplanting a piece of his brother’s liver into him. When Balke told him operating even on highly advanced cases.’ about another problem in his intestine, apparently Broelsch just said, ‘If in doubt we’ll And many top doctors treat mainly private patients anyway, although these account for Broelsch’s secretary explained that all the beds were filled, and the only option still take that out too’. only 12% of all patients and just a fraction of the complicated illnesses that require the available was a private ward. Markovic replied that his mother did not have any private Christoph Broelsch, however, is apparently a miracle-working saviour, the last hope experience of a senior doctor. ‘It’s not right’, says Peter Sawicki, head of the Institute top-up insurance, but that he might be able to pay the higher costs himself. How of those in despair. At least that’s how he sees himself, and this aura seems to still His staff at the clinic in Essen, however, were afraid of Broelsch. One doctor, who for Quality and Efficiency in Health Care, ‘that the patients operated on by the most much would he have to pay? He was told that if he was prepared to hand over €5 000 pervade even now he stands accused. If you call his former colleagues, who know knows him well, says none of his colleagues dared contradict him. Even back in the experienced surgeons are those who can pay the most, yet our system encourages his mother would be given a firm date. However, he would not get a receipt for this him well, and ask them about him, you’ll likely meet a tight-lipped response. You want early 1990s, during his time at the Hamburg University Clinic in Eppendorf, there were this’. money. information about Broelsch, the famous Broelsch? What if he’s acquitted?’ Speaking already indications that Broelsch only stuck to the rules when he had made them openly about Broelsch could mean risking your career. Asking other doctors about him himself. Christoph Broelsch evidently knew how to beat the rigid two-tier system. In a newspaper Markovic consulted his financial adviser. Where, he asked, could he get hold of inadvertently shines a light on the ‘closed shop’ nature of the medical profession (see interview, he once described the situation as follows: ‘Joe Bloggs comes to see me with €5 000? The adviser told him to ask his mother’s health insurance fund whether such ‘Cartel of Silence’, p. 21). In 1991 the public prosecutor’s office investigated him on suspicion of actively assisting his mother and says he wants her to have the best treatment, but he doesn’t have a procedure was allowed. BKK Gesundheit in Bocholt advised him not to go ahead a patient’s death. A 17-year-old girl was admitted to hospital with a life-threatening any private insurance, so I would only have to perform the operation if an additional with the payment. One of the fund’s staff rang Professor Broelsch’s secretary to ask Outside his room at the clinic in Essen there used to hang a photograph with the liver inflammation. On the operating table he cut through her portal vein, so the young services agreement is signed, which in the case of a major operation could rapidly add whether it was normal practice to hand out operating dates in exchange for payment. following dedication: ‘Before I met you, I used to think there were no longer any giants woman bled to death. Investigations were halted because it couldn’t be proved that the up to €50 000 in total costs. Joe Bloggs, however, doesn’t have that kind of money. ‘Ms M. – the secretary – was very unsure of herself, and blurted that she couldn’t do in surgery’. It was written to him by a young American female doctor. Even today, top 17-year-old had died more quickly as a result of the cut. In 2002 Broelsch broke the What do I do then? Send him and his sick mother home?’ When that sort of thing anything about it, she just did as she was told’. doctors like Broelsch are the rulers of their personal fiefdoms. next taboo, calling for financial incentives for organ donation. In an interview he said, happened, Broelsch apparently took the liberty of ‘offering private assistance in cases ‘You can forget about mere altruism and the thanks of a grateful nation’. where I was not obliged to do so’. In the end, Markovic never paid Broelsch any money. BKK Gesundheit helped him Few people have the nerve to pick a quarrel with a man who has a worldwide reputation. arrange an operation at a different clinic. Later he described how desperate he had felt. Hans-Peter Mandl from Bochum is one of them. His wife, who has since died, was A prominent doctor at a German university clinic, who knows Broelsch and who wishes Everything he had done, he said, was to help his mother. Now, looking back, he takes treated by Broelsch for a chronic liver complaint. to remain anonymous, puts it like this: ‘Morally speaking, what Christoph Broelsch is the view that, ‘it’s outrageous to take money from the pockets of desperate patients or alleged to have done would not be the worst solution: it would only be the second their families’. Johanna Kaufhold too, the widow of liver patient Wilhelm Kaufhold, feels worst. The worst solution would have been to say that he would only treat patients ‘very angry inside’ when she thinks about the money donated and about Broelsch, but

72 73 For a long time the couple had been aware that sooner or later the time would come those words that he decided to write his letter to the public prosecutor. What happened under Broelsch can’t have remained hidden from those around him. Although Broelsch has been suspended, he has not fallen from grace in the eyes when the only thing that could help would be a transplant. Yet obviously his authority was so great that even now his colleagues don’t have the of his peers specialising in the same area of medicine. He attends congresses on In autumn 2001 an Israeli patient and his alleged nephew from Moldova reported to nerve to criticise their former boss publicly. liver surgery, he is a Visiting Professor in Bahrain, he recently published an article In July 2001 they were informed that part of a liver was available for Mrs Mandl. the clinic in Essen for an operation to transplant a kidney from a living donor. As is in ‘Unikate’, a journal published by the University of Essen, and he made another She had already been prepared for the operation when one of Professor Broelsch’s normal practice, a hospital ethics committee examined the relationship between the Hans-Peter Mandl reported that after their distressing interview with Broelsch, he and appearance at a workshop on experimental and clinical liver surgery at Wilsede, in the colleagues came into her room. She handed Mandl a contract stating he would agree two men, because under the law governing transplants, a person may only donate a his wife were spoken to in the corridor by one of Broelsch’s female colleagues. ‘She told Lüneburger Heide. to an invoice for double the amount his insurers were prepared to pay. He refused to body part to a patient if the two are personally related. This is intended to prevent us, in a low voice’, he said, ‘that she had overheard the conversation about living-donor sign. organ trading. transplants and our son. She told us that we should not, on any account, go ahead with A few days ago, on 14 September, it was Broelsch’s 65th birthday. That means he is the plan. She said that living-donor transplants were absolutely not without risk to the now retired, but nobody has said whether his career is at an end or not. ‘He will go At this point, Broelsch came angrily into the room. ‘Well, Mrs Mandl’, he is alleged to In the case of the Israeli and Moldovan pair, the experts at the Essen clinic had serious donor. There had recently been a case in which a son had donated part of his liver to down in history as an eminent authority and will continue to work abroad’, says a have said to the patient, ‘your husband won’t sign, so I won’t be operating on you – but doubts, so the case was not even referred to the higher authority, the Living Donor his mother and had died afterwards, and the mother too had died after receiving the hospital doctor in Hamburg. ‘You don’t catch people like Broelsch’. It’s hardly worth my senior doctors are very good too’. According to the operation report dated 2 July Commission in Düsseldorf. Broelsch, however, evidently did not care about the verdict liver donation from her own son. The family had been destroyed. However, she warned mentioning that this doctor, too, was anxious for his name not to appear here. 2001, Broelsch did operate on her, together with his senior doctors. She died a month of his own clinic’s assessors, and sent the patients to Jena, to a colleague who was a us not to say anything about it or she would lose her job’. Apparently the woman then later following numerous complications and another transplant. friend of his. There a temporary living donor commission rubber-stamped the operation. disappeared behind a door. In the end, Broelsch operated personally on the patients in Jena, together with one of The dispute about the final invoice was later settled by the Hamm regional court. In his colleagues. For a decade or so the managers at the Essen University Clinic basked in the reputation May 2003, it was agreed that the costs estimated by Broelsch should be reduced by of their star doctor and allowed him to do as he pleased. Only since Broelsch’s several thousand euros. Yet it was not the dispute about the fee that prompted Hans- The Public Prosecutor’s Office also investigated Broelsch in connection with organ suspension has the new medical director, Gerald Holtmann, tried to distance himself Peter Mandl, several years later, to write a 7-page letter to the Public Prosecutor’s trading. For a long time there had been rumours going round in Essen that organs from Broelsch’s practices. He has given Die Zeit some alarming information. Office. For Mandl it was all about the moral issues involved. were being transplanted without reference to the waiting list of Eurotransplant, the intermediary agency for organ donations in Europe. Of the eleven patients who received a living-donor liver transplant in 2007 – the last At one of the appointments with Broelsch, talk had turned to the subject of organ year for which Broelsch was responsible – six died within a year. Six out of eleven transplants from by living donors. Such operations had already been performed many Many foreign patients also had confidence in Broelsch – after all, he was head of patients – more than half – were dead. The acceptable international death rate is times at the clinic, explained Broelsch. The liver regenerates itself: the donor quickly department at the University Clinic. If the patients’ health permitted, they would often 10%. Deputy medical director Wolfgang Niebel suspects Broelsch’s high death rate is recovers and the recipient gets the help they need. Did the couple have any children stay at the elegant Sheraton Hotel in Essen. The only problem was that, owing to the because his team operated even on patients whose condition was very critical. or siblings? They had a son, and Broelsch suggested he attend the clinic and undergo acute shortage of organs, the number that could be given to patients from a country an examination, provided that he had the right blood group. outside Eurotransplant was very limited. What, then, is Broelsch – a destroyer or a saver of lives? Is it not conceivable that he gave despairing patients the grain of hope that they longed for so much? The conversation that followed is reproduced, from memory, in Mandl’s letter to the An insider who wishes to remain anonymous describes the procedure as follows: several Public Prosecutor’s Office. ‘And if the blood group doesn’t match?’ asked Mandl. ‘Then times in Essen, patients on the Eurotransplant waiting list who had been allocated a In the summer of 2005, a 59-year-old woman was given two thirds of the liver of her bring me another living donor’, said Broelsch. ‘Where am I supposed to find this liver had their operations cancelled. The reasons given were that the surgeon thought 31-year-old son. The patient was suffering from liver cancer as a result of a long-term donor?’, asked Mandl. ‘It’s all the same to me’, said Broelsch, ‘The main thing is that the organ appeared unsuitable, and didn’t match the intended patient. In such cases hepatitis C infection. Her daughter, Angela V., had arranged for her to go to Essen. The the data match’. When Mandl then asked what the hospital’s ethics committee would Eurotransplant is supposed to be informed, so the organ can be offered to the next doctors there could not agree whether they could still give her a transplant, but in the say, Broelsch is alleged to have said, ‘Let me worry about that. Just bring me a donor patient on the waiting list, and so on. end they went ahead with the operation. The mother lived for a further two years after and I’ll do the rest.’ Mandl replied that the ethics committee had very strict rules on this the transplant, but Angela V. says that her mother had done nothing but suffer. subject, to which Broelsch replied, ‘Do you want a new liver for your wife? Then find In Essen, however, it is alleged that such organs were given to the clinic’s own patients, a living donor – no donor, no transplant! And check out your son’s blood group. And including some from abroad, without consulting Eurotransplant. The medical director She had, it seems, taken four months to recover from the operation, and then painful another thing – I am the ethics committee’. of Eurotransplant, Axel Rahmel, said that any anomalies should have been explained bone metastases had occurred. But surely both mother and son had consented to the by the intermediary authorities his organisation worked with. Owing to the ongoing transplant? Angela V. is no longer quite so sure. At the time Broelsch had said that if On the website of another former patient who is publicly supporting Broelsch, the criminal proceedings against Broelsch, he was unable to comment on what may or may they wanted their mother to be alive at Christmas, then she needed a liver transplant. surgeon writes as follows: ‘Preferential treatment of any kind whatsoever and the not have been known at the time. The management of the Essen clinic, when asked ‘In my opinion’, she says, ‘it was not a free decision: they had a gun to their heads’. practice of organ trading are profoundly contrary to my conception of myself, and I about any possible infringements of the Eurotransplant rules, say that they can’t make reject them on legal, humanitarian and Christian grounds’. It was when Mandl read a statement because they don’t have access to the relevant files.

75 74 Filimon Karamitsos was born in 1969. We have decided to hear what the people with first-hand experience have to say: the Fighters set the example woman receiving the transplant, the donor and the doctor. Their words reveal an entire He lives and works in Ioannina, universe that is worth exploring, as is our duty. Greece. He is married and has a An inside look at bone marrow transplants son. He has been working as a It was like bringing a new life into the world professional journalist for the last 15 ast Saturday, just before 9, I set off to go to the University of Ioannina to attend the Lmeeting on bone marrow donation organised by the Student Blood Donation Service Nikoletta Evripidou is the first person to have donated bone marrow to a non-family years. Karamitsos covers political and of the University of Ioannina (FOEA). member. With a certain self-assurance, she told us of her donation experience and of social issues for the local newspaper her personal background with leukaemia, giving us a solid example of volunteerism On the road to the university, cars were already making their way downtown and every and giving. “Eleftheria” and also works for the now and then I would see groups of well-dressed youngsters headed in their own local television station “Ioannina TV”. Additionally, direction. “Because it is Saturday night” I thought, as the Stereo Nova song goes. How did you become a donor? Tell us about the process you followed. he has a daily radio programme and writes for the Reaching my destination, the meeting, a whole new world opened up before me as How did I get involved in this process... Well, when my husband was 29 years old we web portal “epirusonline”. Karamitsos is a member National soon as I walked into the large ceremony hall. There were dozens of youths and a few were informed by the doctors that he suffered from acute myeloid leukaemia. That of the Journalists’ Union of Peloponnese, Epirus older people; there was talking, smiles, picture-taking and festivity in the air. There was was when I first discovered what bone marrow is and what a transplant involves. We are talking about 1991, when transplants in Greece were still at a very early stage. It and Islands (ESIEPIN) and participates in the so much vitality and youthfulness. In the background, information on transplants, donations and leukaemia was being was all very new to everybody. So, once we had been informed of the procedure for International Federation of Journalists (IFJ). winner screened. finding a compatible donor, we gave some blood, which was very much like going for a blood test. When I was tested for my husband, they asked me if I wanted to become a Why were the volunteers, doctors and transplant patients so lively? Why do they insist volunteer donor, and naturally I agreed, not knowing exactly what this involves. I just on raising awareness, recruiting new volunteers, fighting? couldn’t say no to something like that. Unfortunately, no histocompatible donors were found for Giorgos in the family, or later in the international registries. We resorted to An entire world is fighting the personal pain – which is surely intense at times struggling other treatments that were both time-consuming and painful, while waiting for a new with “public opinion’s” pity, objecting to charity and asking for one simple thing: our donor to be found in the international registries. participation and solidarity. Three years after being listed in the international volunteer registry, I received a phone A lot of useful information on bone marrow transplants is available on the website of call from the histocompatibility unit telling me that I was found to be histocompatible the Floga Association (www.floga.org), a very important volunteer organisation that with a Greek patient. I immediately accepted. fortunately exists to help families and suffering children. It is through this website that I learned of the importance of volunteer donors and discovered what a difference it I went to the hospital and gave some blood for new tests. They then told me they would make if the number of donors went up, even by a little bit. would notify me when the time was right me because the patient had to be prepared to receive the transplant and there was nothing more I could do. It was now up to the Greece The student members of FOEA are all over the city. The information is there, all we doctors to speed up the process. I say this because these patients do not have the have to do is take the first step: learn and participate. luxury of waiting; this disease is very tough and painful.

76 77 I felt an overwhelming sense of responsibility when I agreed to donate bone marrow. From then on I have had no problems. I later gave birth to a daughter, Stamatina, and I am sure that if they were called 10 years later for the same purpose but without an Do you believe your words are getting through to the public? Five months passed from the day I was notified till the day I entered the hospital. I still donate platelets and blood whenever necessary. image to move them, they would all refuse. mention this sense of responsibility because the closer you get to that day, the more I believe so. I hope they understand. Some people will leave this conference and you start to worry that something might happen to you. I knew, and the doctors Things did not turn out well for Giorgos. A histocompatible donor, but not to a large Dramatisation does not always help to inform. remember that they heard a girl who cried at some point and spoke of her experiences, had also informed me, that the patient would in the meantime undergo aggressive degree, was found four years after he fell ill. His body was worn out and we knew that and I hope that they will not forget it, but will tell their friends and family of the chemotherapy in order to kill the “bad” cells in his body along with the “good”, which is the chances of success were very small. There was no other way though, we were Television is both a good and bad tool. Although it can help, all it is interested in most experiences we have shared so that they can be aware. why they needed the bone marrow. I worried about being in a car accident or catching headed down a one-way street. There was hope that things could go well, but he of the time is selling, capturing the dramatic moments, moving the audience and, once a cold, so I started to protect myself in order to be prepared. passed away just 20 days after the transplant. He always hoped there would be more this is done, the matter is forgotten. This is very unfair. The media should stand by Why do you believe that Greeks do not volunteer? Have you thought about information, that people would become more aware and that years later there would volunteer associations and help to raise public awareness. this? A month before the final date I had to go to the hospital to give blood for myself. My be no need for anybody to wait because people would understand and there would be brother and I each gave a unit of blood. The doctors basically did this to protect me enough donors to cover the needs of patients in our country. I try to see only the important things in life Yes I have thought about it, because I too am Greek and up to the age of 17, when I so I wouldn’t get foreign blood in case I needed a blood transfusion. I also received an fell ill, I had no idea what it was like to have a haematological disease. In the village I iron supplementation. Do you believe that we all have this sense of responsibility within us, or do Spyridoula Markou is 20 years old and a second-year student in the Department of come from in Arta they never call cancer by its name. They won’t say that someone has we discover it in time? Primary Education. She is a witty, smart and beautiful young woman who had me cancer; they say he has the “dreadful disease”. They have given it that name so that On the day I was admitted to the hospital, I underwent the routine tests for the surgery from the very start when she said that often all journalists want to do is impress they won’t get the disease. They somehow believe that if they don’t say the name they (X-ray, etc.). The procedure was to be carried out in the operating room under general The more aware bone marrow donors come from among the blood donors. I have been with diseases. What can I say? It seems that journalism has to rediscover its role. won’t get it. We are not very aware in Greece. My first donor was 20 years old, three anaesthesia, which scares most people, but as I said at the conference, many undergo a volunteer blood donor since the age of 18. I already had a sense of giving, which has Nevertheless, she would like to go into journalism and we have invited her to give it years older than I was, which means that if I hadn’t gotten sick, by the time I was his implant surgeries which have a higher rate of risk than bone marrow donation does. matured with time. I did not know what platelets and bone marrow were, but at the a try. age I would be socialising, going out and I wouldn’t care. time there was no public information available. Now that there is such a widespread I was admitted on a Monday and went into theatre on the following morning. The dissemination of information, I often tell people that we blame the state – for the lack What are your reasons for participating in the event? I can honestly say that I am very happy because I am a member of FOEA and every procedure lasted for an hour and a half; I felt nothing. They use a needle to draw bone of information, etc. – but the state and doctors often talk to us; however, we choose to Friday I see people coming to our blood donations to donate blood, people my age, marrow from the hip bones, which have the largest surface, and as I said before, I felt put up barriers, barriers of fear and time. We ask ourselves, where will I be when they I spoke about being a bone marrow recipient and about my experiences from the two students. absolutely nothing. In that hour and a half I felt like I had saved a life and I think that call me? What will I do with my job? Will I be able to take time off? These are just small bone marrow transplants I had in Athens at Evangelismos Hospital. I had the first Having experienced the healthcare system, what would you ask of the the time spent is very little compared to what is being offered. and unimportant excuses compared to what we have to offer. That is the message I transplant at the age of 18 and the second at 19. am trying to get across. state? Many ask me if I was in pain when I woke up. The answer is no, and that is the Many may think that in this way, by speaking in public, I want to externalise my pain The problem at Evangelismos Hospital, which I can speak of, is that there is a shortage honest truth. I just felt stiff, like going to gym after a very long time and feeling stiff To me it is a matter of education. Education - on the donation of blood and platelets, and make people pity me. I think that I have been through a lot and I certainly do of nurses, at least in the wards. Another problem faced by transplant patients is that afterwards; nothing more. I got straight out of bed, walked, ate, had a bath and the for which there is great need, as well as on bone marrow donation, which to me is not want any pity. What I want is to make people aware, make them understand that no rooms are available for follow-up treatment. This is very important because if a next day I got into my car and drove home. the greatest gift of life from one person to another - should begin in school. Belgium thanks to two people who voluntarily donated some of their bone marrow to me, I am transplant patient gets an infection after the transplant, one cannot possibly put him in has a huge number of volunteers in relation to its population. This does not mean now alive and here, able to talk, study, go out and live life. a room with another seven patients who may have germs or other problems. It is hard To me, that is the least of all, but many are afraid of that part. What I always emphasise that all these people have suffered the same loss as I, but that the state has offered to find a room with one or two patients, and it is a true struggle for our doctors too. is the feeling I had when I woke up. I was already a mother at the time and I knew them an education and has taught them the meaning of giving. As a nation we are what it is like to wake up after the delivery and be told that you have brought a child compassionate, but we are also enthusiasts, like in the case of little Andreas from into the world. That is exactly how I felt when I opened my eyes after donating bone Cyprus, when there was a turnout of 30,000-40,000 volunteers. marrow. I felt like I had brought new life into the world.

78 79 How is your everyday life now? that make them vulnerable to infections in the first few years of their lives), who run What do you think stops us from becoming volunteer donors? Many transplants are performed today in Greece with good results, like those in the the risk of dying if they do not have a transplant; children suffering from aplastic rest of Europe. I am still trying. In fact, I am still at the beginning. I cannot do the things I used to do. anaemia, a serious disease where the body cannot naturally produce blood cells; and Poor and wrong information, improper organisation of state services, and I dare say I do not have the mental or physical strength to do it all. many children suffering from thalassaemia, a hereditary condition that is very common the indifference we often show as a nation, even though we consider ourselves to be What would you ask of the healthcare system? in our country and even here in your area. compassionate. Would you ask for certain facilities, so to speak, from the state? I would ask it to open its eyes and ears to see the problems that exist. We are aware What do you do when these children come to you? I gather from what we have discussed that when parents discover their child is ill, the of the huge financial problems there are, but I believe that human life does not have a I do have benefits. The university has offered me a room in the hostel. The state has news first strikes them as a tragedy, but they then gradually go through a process that price. One can be certain that if the system appoints a few doctors in the departments passed a law for young people who have similar problems as mine, to allow them to get What we try to do is cure them. This can be done with a transplant, which means presents many chances of a cure. that are in need, as well as a greater number of nurses, it will save the lives of many, into university with their high school graduation marks, without having to go through that we use the bone marrow or blood of a healthy person, after properly preparing many Greeks. the stress of the examinations. The state provides financial aid, such as the sustenance the patients by administering strong medication in order for their bodies to accept the For the family it is like a bolt from the blue. It is impossible to search for a donor at allowance for transplant patients. It can certainly offer more, but I am not sure what bone marrow. If all goes well, these children often recover, without any real problems the last minute. So, if more people decide to become bone marrow donors or if young goes on in other countries to compare. in their childhood. couples donate cord blood for public use, they will certainly help many fellow humans, not only in Greece but throughout the world, and possibly even themselves. Is this one of the messages you are trying to get across? How do you see your life from this point on? Are you considering becoming Can you please explain what you mean by cord blood for public use? a teacher? The message I am trying to get across first of all about childhood cancer, which although rare still exists in Greece, is that it can be treated and 70% of all children get well; that Cord blood can be used as an alternative to bone marrow. If we cannot find bone Yes. I now look for things that I enjoy doing and I try not to stress over things that do childhood leukaemia can be cured to an even larger degree; and that today, serious marrow, we can look for cord blood. Of course, as you may know, there are only a few not matter. I try to see only the important things in life. diseases that could not be treated 15-20 years ago, can be cured with bone marrow public banks and many private banks because parents – being ill-informed – believe I have made a start and am taking things one step at a time. transplants. that they are helping their children by storing their cord blood for their own personal use. In actual fact, cord blood intended for autotransplantation is hardly ever useful. The healthcare system must open its eyes and ears What has brought about these positive results? There are very few cases in which it can be used for personal use. On the contrary, if one donates it to public banks for public use it will certainly not go to waste as it is Stelios Grafakos is an Associate Professor of Paediatric Haematology, Director of the There have of course been important developments in medicine, but what is most bound to save the life of a suffering patient. transplant unit at the Aghia Sophia Children’s Hospital and President of the Hellenic important is that the number of volunteer donors throughout the world has increased Society of Haematology. We talked about the cases he deals with. His words are and we can now find donors for children too, which was rather difficult in the past. What do you think of the healthcare system? plain, clear and firm, and reflect both his many years of experience and his scientific background. Considering that only 30% of all patients – children and adults – are likely to find a As you know, the healthcare system is generally lacking. Fortunately, spectacular compatible donor in the family, one realises how important it is to have volunteer results have been achieved in the area of bone marrow transplants in Greece. There Which children visit your clinic? donors. Unfortunately, the number of donors in our country is entirely inadequate. are currently four large units, one at Papanikolaou Hospital, one at Evangelismos, There are fewer than 15,000 actual donors, in contrast to other countries like Cyprus, one in Patras and a children’s unit at Aghia Sophia Children’s Hospital. Progress has The children who come to our clinic suffer from serious diseases that can only be treated which has 110,000 bone marrow donors in a population of 700,000. This means that definitely been made. Apart from the increase in the number of volunteer donors, with bone marrow transplants. Most patients are children with high-risk leukaemias that there is one donor for every family. there are also new methods that allow us to perform transplants on a larger number of cannot be cured with chemotherapy; children with immunodeficiencies (i.e. diseases patients, even on the critically ill. 81 80 Erzsébet Fazekas studied at the Waiting for a chance, healthy in By touching him, I am now learning, literally first hand, what it means to be dialysed. Postgraduate School of Journalism The smiling, spiky-haired young man then rolls down his sleeves, and we can no longer the soul see that he is seriously ill. On entering the room, I took him for a medical lecturer, since MÚOSZ (Association of Hungarian he sat arranging his notes at one of the key places at the U-shaped table. He greeted Journalists). He has worked for each person who entered with a smile and, as we waited for the the event to begin, he Undergoing renal replacement therapy, waiting for an organ transplant offered us water from a bottle on the table. I tried to come up with an answer relevant the daily Hungarian newspapers (An interview with Darren, the fastest patient in Europe) to the subject matter of the event: sure, why not take some water - it will do my kidneys good by washing them through. Looking back, it seems as if he reacted with “Népszabadság” and “Hírlap” and He often had headaches, and his vision blurred more and more frequently. a gesture of doubt, but I only realized this later, since at the time he had also helped was editor of the health magazine He went to see an ophthalmologist, who sent him straight to hospital. There, himself and sipped some water. this young man, who does various sports and leads a healthy life, was told “Gyógyász” as well as of the health supplement that he is seriously ill: his kidney barely functions. Two weeks later 20 year Darren tells us what it’s like to live with the condition, how dialysis sets a strict old Darren J. Cawley, a student in sports and fitness about to graduate from framework for his life. Treatments put stress on the organism, and he mentions that “Heti Patika”. Bedfordshire University in England – was sent to dialysis. he loses the equivalent of 2 bottles of liquid each time. This much – he says, and lifts the water bottle. He adds that kidney patients must not drink much, for their organisms After finishing his studies, he went back to Ireland, and 7 or 8 weeks later he are unable to eliminate excess water. He tells us that his erythro-count goes up and National got a kidney from a donor. He soon resumed sport and travelled to Japan to down periodically and that sometimes he is so tired after the treatment that he lies take part in the World Transplant Games. He returned from there, and from down in bed for a while– before going to his sports training. For Darren continues to later competitions, covered with medals. Then in 2002, after the Games in do sports intensively – even now. Hungary, his joy was tarnished by the discovery that his kidney had been attacked by a viral infection and had to be removed. Since then, Darren has He beams with energy, cheerfulness and optimism. He lives a full life, he adds, though winner been back on dialysis again. Yet sports are still at the centre of his interests. he cannot have a stable job since he has to spend half a day at a dialysis station 3 In his spare time, he does more and more charity work: he gives awareness- to 4 times a week. When he feels fit enough, he helps in his parents’ company – in raising lectures to children on the functioning of the kidneys and the essence exchange for the material and moral support he receives from his family. His girlfriend of dialysis and transplantation. When he speaks to adults, he highlights the wants to get married as soon as possible, but Darren would like to put it off for now importance of organ donation. He wants to show that even someone with and does not know when it could happen, but he hopes they can get married in the an illness can live a harmonious, high-quality life and set important goals near future. For now, it is not possible, since he is waiting for a kidney. If he gets a for himself. In the meantime, he is waiting for a new kidney, he is optimistic phone call informing him that there is one available for transplantation, he has to and hopeful, and he sincerely believes that he’ll be lucky this time and that show up in the hospital within a couple of hours. He does not want to interrupt his transplantation will really be a success. honeymoon. He wants to get married once he has a new kidney, he wants to have a memorable honeymoon and then a stable job, so that he can earn enough to nourish arren is giving a presentation on his health problem to a small group of Members of his future family. And until then, he keeps waiting patiently. His days are filled with Dthe European Parliament and journalists in a meeting organised in Strasbourg on hope and charity work… World Kidney Day. As he stands speaking to his audience, he rolls up both his sleeves and shows us his forearms. They are covered with hugely dilated veins, bulging out This the gist of what Darren told about himself before the medical specialists started like slim skin-coloured snakes winding around his arm. He explains that these are their presentations. The doctors then referred to his case when they said that although surgically-linked ‘arteriovenous fistulas’ needed for renal replacement treatment, and 10 % of the European population is affected by a chronic kidney disease, there is that more and more of them need to be created in his body. He invites those present to no appropriate strategy for prevention at European or national level. However, only go ahead and touch him and feel his heart throbbing in his arm. Most of the audience prevention can help reduce the number of patients on dialysis, who sometimes spend is reluctant to really “get” what Darren is telling them, so hands do not reach out many years waiting in vain for a transplant. Specialists highlighted that we need as Hungary towards him – although it is hard not to accept his offer. It is of course peculiar to feel many living donors and “good quality” organs for transplantation as possible, and they think it important that the World Kidney Day campaign should not be the only initiative the lukewarm pulse beneath one’s fingertips.

82 83 calling attention to the importance of prevention and the risks of this chronic condition. Before my illness, I was into a lot of sports - boxing, rugby, Gaelic football, soccer, people on dialysis in other counties to do the same. I am invited to travel too, but I do TEXT IN BOX Nephrologists insisted on meeting members of the European Parliament’s taskforce handball and racquetball. After the operation, the list got much shorter. Since hearing not always manage to go. Because of the dialysis, I could not undertake to travel to on kidney health to seek EU help to promote the cause. According to doctors, it is about the Transplant Games, I have taken up athletics. I compete, or have competed, Chile. That came out of the blue for me! My sister nominated me on-line for a ”Local Diseased kidneys are unable to eliminate waste products from the organism (end- and important, for example, to create forums for the public so that they can understand in the 100m, 200m, 400m, ball throw, long jump, cycling, and bowling. At my first Hero Award” in Chile. I won the award, which came with a prize of €10,000. I should by-products of metabolism, toxic substances in the blood) and excess water. Therefore how an established illness is treated and what the available treatment options are. games, in Kobe, Japan in 2001, I won two bronze medals in the 200m and 400m. have travelled to Chile to collect it. I did not go, but the money has arrived indeed, cleansing has to be done through artificial filtering – that is, blood is passed through According to nephrologists, member states’ decision makers in the health field should These are still the most special as I had never even run on a proper track before and and I donated it towards helping dialysis patients at the Transplant Games in Dublin a device called a dialyser. The structure of the membrane that performs the filtration also be told to keep the organ transplantation issue on the agenda, discuss and clarify it was all very new. Since then I’ve been to 3 European Transplant and Dialysis Games. this year. keeps blood cells and big proteins from diffusing into the dialysis solution. In order to ethical, religious, medical and personal aspects (often interpreted differently) of Hungary 2002 was a brilliant trip. It was bitter-sweet, though, because I was told after enable the blood to be removed from and returned to the body, a connection point - transplantation and organ donation. Besides, members of the public should realize that the Games that my transplanted kidney was affected by a polyoma virus infection I wrote to Darren in my letter that I was very pleased to have met him. To me, he is the so called arteriovenous (AV) fistula - must be created surgically between an artery organs that would otherwise be buried could also be donated to save other people’s and would have to be removed: nephrectomy. The next Games were in Slovenia in a role model, the living example of positive thinking – for it is so rare to find young and a vein. Blood flows in and out through a tube linked to the fistula. lives or improve their quality of life. The organs of one dead person can improve the 2004. My first games on dialysis. I did well, winning 3 silver medals and one gold. men who are brave enough to come forward with their personal “handicaps” and lives of up to 7-8 people. General awareness should be raised – to the benefit of Darren Finally Germany 2008. My first games with my girlfriend Aoife, so we had a wonderful, problems and who show at the same time that there is still hope and confidence, as and others like him. special time. Also my most successful games, with 4 medals. To be honest, there was they sincerely believe that a good outcome and a happy future is possible. Especially less competition, as not too many dialysis patients compete compared to transplanted when you take into consideration that there are so many – seemingly healthy – people Darren is ready to take further questions – our discussion at the Strasbourg event was patients. But as I sometimes say in speeches, I am now Europe’s fastest sick person. who lose their inspiration or for some reason do not know how to find satisfaction in inevitably cut short, but it still continues in a written form. Details of his case history It gets a good laugh! life. I shared with him the following reaction of the organiser of the Strasbourg event: and his life unfold one after the other during our correspondence. First, of course, we “The inspiring presentation by the incredibly brave young Irish patient Darren was got back to the starting point – that is, how it all began… With my qualifications, I guess I could teach sports. I can only work part time though deeply moving for me. It is one thing to deal with data and facts about kidney disease. because of the dialysis. I have worked with Special Olympics for a year, coaching But to hear a story such as Darren’s was an experience to be thankful for – to appreciate The headaches and vision problems came on gradually over a few months as I special needs athletes (e.g. people with missing limbs, impaired vision, disability). I’ve being healthy. A state which is taken for granted so easily, we forget that it is fragile remember. The reason why I finally went for a check up was because the eye problem also worked as a substitute teacher in my home town Westport. This often entailed and we should do something to preserve it. I think it is simply human nature. Meetings was affecting my playing football and studying (reading). I went to the university teaching Physical Education. like the one with Darren are like a wake-up call. They teach us that we must be aware doctor (she was free, and I was a poor student). She listened to me and told me to of the fact that we are healthy and that our health is something precious we have to see an optician, if I wanted. I guess she thought I was seeking to get out of exams or I have been on dialysis for 8 years by now. I did not return to waiting list until the virus preserve. All the more so since Darren, keeps on hoping, even though he is ill. The way something. (Some people told me I should have taken legal action against the college totally left my body. As a result, I’ve been on the waiting list around 5 years in total. It he appreciates life and what it offers, set us an example and makes meetings like the doctor who dismissed me so easily without doing any checks and failed to consider the is longer than usual in Ireland. I’ve no real reason why, I guess I’ve a large percentage one at World Kidney Day so unforgettable”. risks I ran.) Since my vision problems and headaches persisted, I sought specialised of antibodies, which does not help. But results are checked regularly and it seems now help. It took me 4-5 days to get an appointment with an ophthalmologist. When he that everything is going to be all right this time. I feel that the operation is close now. Darren was very pleased to read the organiser’s reaction and agreed that it was a great checked my eyes he gave me a letter and told me to go to the hospital straight away. I am certain I will get called soon! experience to participate in the event and realize how much he can do for others, even I told him that was impossible, because I had a football match to go to that evening, when he is ill, and how important the messages are that he can transmit to the public. otherwise I would be missing from the team, but he insisted. He explained that my I have chosen not to go down the road of live related kidney transplant. I’ve been Besides, he told me that if I write about him, then my text – and any other article bad vision was due to pathologically high blood pressure and if I had went to the Gaelic offered kidneys by friends, family, even strangers I meet! My four sisters are all quite I write about transplantation - should be very positive. Only optimistic and hopeful football match, that would be very tiring for my body, I might have a stroke! Luckily, young and have families, so I would not do that - they cannot afford to be that generous accounts can serve the cause of those people who are waiting for a new and healthy I obeyed him. I went in as a fit healthy sports student (as I thought) and I came out to me. I’ve said in the past however that if my next transplant is unsuccessful I would organ for transplantation. He added that now I was in the possession of the longest with renal failure and on dialysis. The biopsy they did showed that less than 20% of consider live related transplantation. At the moment I’m pretty healthy and active on e-mail he had ever written in his life – on dialysis, typing with one finger of one hand. the kidney was functioning, the original cause was unknown, but the doctors thought dialysis therefore I don’t mind waiting. I have things to do. “Slainte”, writes Darren finally as he takes his leave, explaining that this is the word it might have come from a “strep throat”. Irish people often use in the pub when starting a drink and toasting the good health of Since joining the Westport Lions Club, I do a lot of local charity work. I do fundraising those around them. “Slainte mo chara”, he adds: “Good health my friend”. I saw out my final year in college on dialysis. I did not want to move back home yet for the Irish Kidney Association (IKA) and the Punchestown Kidney research Fund, and since the hospital I attended in England (the Lister Hospital, Stevenage) was very I also talk in schools, to promote understanding of kidney failure and donor awareness. good. It actually specialized in renal medicine, I so was very happy with them. I was I am very well qualified to talk about the subject as I have been living with it for over back in Ireland when I got transplant though. It was great to be home, with all my 12 years. That is really how it started, with the goal of visiting every school in my local family support. county of Mayo. Since then, the initiative has evolved, I am now trying to get young

85 84 Gary Finnegan has a degree in Both sides had a point: not all online information is useful, but wishing the net didn’t Medicine’s new dot-com exist comes across as either naïve or arrogant. physiology from Trinity College Dublin revolution and an MSc in science communication But things are improving on all fronts. Google says around six per cent of medical from Dublin City University. He works information found online is inaccurate and there is growing evidence that net-savvy rom clinical trial recruitment and virtual medical schools to online diagnosis and the consumers are getting better at choosing reliable sources of data. Better still, such as a freelance Irish journalist with a Fuse of cloud computing to store medical records, Gary Finnegan finds Web 2.0 is is the critical mass of the population now routinely surfing the web, it’s easy to find throwing up some exciting and frightening possibilities. discussion groups with thousands of users who can exchange their experience. There special interest in health policy. He are now just enough ordinary patients to dilute the cranks and the charlatans. I have a headache and have been feeling a little rundown. And I had a crick in my neck is a former Editor of “Irish Medical News” and has More than that, the evolution of the net has enabled doctors and patients to harness when I woke up this morning. I could visit my GP, or wait for it to pass. Or I could start its power for good rather than ill. The second generation of the internet – commonly contributed to the “Evening Herald” as a columnist lobbing search terms into Google. What if it’s meningitis? Am I experiencing confusion dubbed “Web 2.0” – is characterised by more interactivity and collaboration. Significantly, or nausea, asks the first website returned by the search engine. Well, come to think leading thinkers in the medical establishment have caught up with the trend and are on health policy. Finnegan currently contributes to of it, I endured a brief dizzy spell when I leapt out of bed this morning upon realising now embracing the web’s potential to make a positive contribution to medicine. a range of Irish and European publications and has I was late for work. In that case it might be bleeding or inflammation of the brain, I’m told by another helpful site. written a critically-acclaimed book on China. National Virtual modalities Have I had recurrent headaches? If so, there’s a slight chance it’s a migraine. But it For starters, the phenomenally popular alternative universe of Second Life is now could be cervical osteoarthritis. And let’s not rule out a brain tumour. The truth is I have being used for medical training. Second Life is a virtual world in which some 16 million nothing more than “cyberchondria”. registered users can simulate just about any real-world experience from the comfort of their own home. winner My GP, or my own common sense, might have suggested the combination of red wine overdose and a bad night’s sleep were responsible for the muzzy head and stiff neck, In the early years of its short existence, Second Life residents used the program to but internet searches are fast and free – even if it can be a blunt diagnostic tool. conduct anonymous online affairs, doing things vicariously through their 3-D personas that they might not dream of in the real world. In England, a virtual infidelity resulted The problem of unbridled access to medical information of dubious quality has been in a real-life divorce after a woman found her husband had married another woman in vexing the medical fraternity for the bones of a decade. Time magazine’s medical Second Life. The lines between reality and make-believe are blurring. columnist Dr Scott Haig brought a world of trouble upon himself recently when he described the agony of dealing with “medical Googlers” – patients who turn up at his You can now buy goods, services and land with Linden dollars (L$) – the local currency surgery armed with a handful of possible diagnoses and second-guesses. which can be bought using real-world cash – a development which meant it wasn’t long before some bright spark saw the potential for pyramid schemes and bogus investment He’d had enough of the selective online research and of stalkeresque patients trawling products. through his educational background and critiquing the papers he’d published. But, having initially been corrupted by scam artists, the potential of Second Life is “These patients are often suspicious and distrustful, their pressured sentences burst now being tapped by medical schools. Researchers at the University of Toronto have with misused, mispronounced words and half-baked ideas,” Haig wrote. completed a comprehensive study showing how the virtual world is being employed to train doctors using simulations, to educate people about their illness, to enable Patient advocacy groups were up in arms. Haig was an old-fashioned paternalist with diseasespecific support groups, and to fundraise for real-life research funding. It a God complex, they said. He was just afraid of the modern informed patient and too can even be used as a venue for conducting behavioural experiments and disease slow to embrace change. Ireland surveillance.

86 87 Dr Jennifer Keelan, who led the Canadian project, suggests user anonymity can be There has been some concern that the rush to bring education to the virtual world Google Nor is it clear precisely how the system will seek to turn the free service into profits for liberating, particularly when it comes to learning about embarrassing conditions. has been done without adequate assessment of its efficacy. A similar criticism could its shareholders. be made of Imperial College London’s Virtual Hospital in Second Life, where approved Acurian – and just about everybody else – is a mere minnow compared to the big boys “The relative anonymity where patients can seek out information and share health users can treat patients or seek treatment themselves, but colleges believe that at and girls at Google. It is Google which has most influence over the future of how the “Doctors and hospitals have a duty to keep this information confidential, but others don’t. experiences in a safe environment is key. There is also a great potential for patients the very least it helps attract prospective students by making the institution seem internet is used and, as it happens, the mega-company has now turned the full glare In the hands of the wrong workplace colleague, friend or vendor, this information could to ‘practise being patients’ by virtually experiencing a mammogram or navigating a technologically literate. of its spotlight on health. be used against patients,” warns Jamie Court of the Consumer Watchdog group. hospital’s virtual ward – they can gain insight into medical procedures and processes to become more informed.” At Imperial’s Virtual Hospital, students can even receive course credits for working in Addressing an audience of medical information geeks in Orlando, Eric Schmidt, Google insists it has no interest in anything other than advancing public health and it the Virtual Respiratory Ward. Patient interviews, interpreting test results, reaching a Chairman and CEO of Google, offered a farreaching vision of what the web can do for also plans to improve access to quality health information which could make medical In a paper published in the open access publication, Journal of Medical Internet diagnosis and providing treatment are all part of the experience. To raise extra funds, doctors and patients, but scolded the medical profession for being latecomers to the education accessible to developing countries. Online text books could be updated in Research, Keelan and colleagues say Second Life offers huge scope for developing the college charges guests who are not students at the real-world college for every internet revolution (you can watch all 50 minutes of his lecture on YouTube – which is real time to incorporate the latest research and, perhaps controversially, medical tomes health communication and research but that issues of ethics, informed consent, user diagnostic test they run on patients. Health policy has a presence in the virtual world also owned by Google). could be accessed free of charge. privacy and intellectual property must be addressed. too. A UK firm called Second Health is showcasing recent efforts to implement the polyclinic model with a simulation of a London clinic in Second Life. The region is set “The medical establishment has taken way too much time to learn that the internet This must be read as good news for aspiring medics but probably inspires less excitement Progress marches on at an alarming rate, with hitherto low-profile health librarians up like a town with a clinic, a training hospital and an auditorium – which served as the is a disruptive innovation that has overturned the status quo and has levelled the amongst professors who make a mint by republishing standard medical texts. in the US leading the way. Healthinfo Island – a virtual islet in Second Life – has venue of the first meeting of the Virtual Association of Surgeons last year. Surgeons playing field between expert and novice; in this case between doctor and patient. And been funded to the tune of $40,000 by America’s National Library of Medicine and from five countries showed up (to be clear, we are talking this time about a virtual while some doctors might find that threatening to their status as an expert, the web Health impact provides access to health information, including PubMed. As well as running outreach meeting of real surgeons). And for those not yet initiated into the virtual realm, Second is now providing the kind of information doctors need to be good at their job and the programmes, it provides free “land” for six months to non-profit health groups. Health has a YouTube video explaining how its simulation works. information that makes patients healthier and smarter,” says Dr Schmidt, who is often The interactive nature of the web can itself have an impact on health status. The New at pains to stress that he has a PhD in computer science and is not a medical doctor. York Times warns that blogging and posting endless inane updates on Twitter can be A 3-D version of the US Centres for Disease Control and Prevention has also been The bottom line is that the medical establishment has taken heed of the advice given stressful. It even goes as far as to suggest that blogging – which is essentially writing established next to Healthinfo Island. It hosts seminars, focus groups, and allows users by the McKinsey Group consultancy, which warned: “Ignore Second Life at your peril.” He jokes that two-thirds of internet users say they trust the net, which is more than regular diary-style messages for free – is akin to a modern sweatshop where bloggers to play around with microscopes in its microbiology lab. the proportion of people who say they trust doctors. Schmidt is adamant that the provide daily content for little or no financial reward. Social life web is now home to a better-educated patient capable of seeking out information on Recognising the potential for community outreach, the University of Plymouth in the UK interactions between prescription drugs and competent in assessing which sources of But just when you are about to resolve never to post another rant on your blog, along has established a sexual health simulation to educate users about safe sex – they even Not to be outdone, the online social networking site, Facebook, is hosting support information are reputable and which are not. comes Scientific American with a story saying blogging encourages critical thinking. give out virtual condoms. The logic behind the programme is simply to go wherever groups and forums for all manner of medical ailments and has recently been used to It’s a stress coping mechanism which boosts memory and the immune system, say high-risk groups can be found, even if it’s not in this world. A women’s health centre help find participants for clinical trials. A patient recruitment service named Acurian has But Google has bigger ideas than just retrieving pages about diseases and cures. researchers. They are not suggesting prescribing regular blogging as a therapeutic has also been “built” to teach women how to perform their own breast exam. established a network called Click It Forward which allows Facebookers to invite their Schmidt wants patients’ medical records to be accessible from anywhere in the world. intervention but it is further evidence of how the net is influencing health from all friends to join the group in return for points. The company promises that it will donate “A huge amount of information was lost after hurricane Katrina. That simply wouldn’t directions. Training cash to medical research every time a new person joins the group. have happened if the information was stored on several servers at separate locations,” observes the Google chief. Back in the real world, all of this web 2.0 lark might seem a little remote in a country Multinational companies like IBM and Dell are already using the Second Life platform You’d be forgiven for thinking that this sounds a bit like the old viral email scam that with patchy broadband coverage. Nonetheless, technology is dramatically transforming to train staff across the globe, and universities are now playing catch-up. Typically, said: “Bill Gates will donate $1 to charity every time you forward this message”. Acurian This is essentially the idea that spawned the internet in the first place: the US military healthcare, and doctors are working hard to keep up. And, now that mainstream virtual training simulations provide users with an interactive and safe way to engage in says it is just moving with the times to improve science but has capped its maximum wanted a network of computers where sensitive information could be securely shared medical schools and multinational companies are embracing the changes, there may new tasks. A range of delivery methods have been tried to date, including interactive contribution at $50,000 – just in case it becomes so wildly popular that it bankrupts between several centres. What Google now wants, through its Google Health feature, be less fear that patients will replace their GP with “Dr Google”. simulations, lectures, videos, and quizzes. its creators. is to have password-protected access to individuals’ health information. This would eliminate the need to transfer physical files when changing doctor, and allow health Gary Finnegan is a regular Scope contributor, “Second Life provides an opportunity to use simulation in a safe environment to Click It Forward can also make use of a Google Earth plugin that allows users to see records to be read if a patient is hospitalised while abroad. freelance writer and the Irish Winner of the enhance experiential learning, allowing individuals to practise skills, try new ideas, and a dynamic, visual map of their own Click it Forward network. “Social networking is 2009 EU Health Prize for Journalists learn from their mistakes,” says Diane Skiba, University of Colorado. an ideal environment for promoting clinical trial awareness and increasing Acurian’s It throws up all kinds of privacy issues which Schmidt assures us are nothing to worry direct-to-patient recruitment capabilities,” says Scott Connor, Acurian’s vice-president about, even though the company’s terms of service suggest it is not covered by the of marketing. kind of privacy laws that would apply to traditional healthcare firms.

89 88 Ieva Alberte has worked six years for Since 2007, the Latvian government has covered the cost of liver transplant operations You have a beautiful liver! as well as medication and post-operation examinations for children – but not travelling the daily newspaper „Diena”. In April costs, accommodation and fees payable by the patient. Toms Noviks, the representative 2010, shejoined the newly established from the Health Payment Centre, explained that the price of an operation depended o save their daughter’s life, Mara’s parents had been searching for a liver donor analytical weekly magazine „Ir”. Tfor half a year, but without success. Anita Liepina, a colleague of the baby’s father, on the country where it was carried out — the payment procedure varies from country wanted to help. The Belgian doctors were surprised that a stranger wanted to donate to country. In one country, 100% of the operation costs may be covered by the Alberte is interested in social issues and almost refused to operate. government, whereas in another only 90% would be covered, with the remaining 10% and writes feature stories about payable by the parents. The operation was performed in spring and the healthcare people having extraordinary and Ziedonis Mikis had never arrived home from work so early. It was in January of this year institution in Brussels had not yet issued an invoice, so Toms Noviks could not say what when his wife Edite called to tell him they had found that Ziedonis’s second brother was percentage of the operation costs would be covered, or what the amount would be. incredible lives. She has received several prizes for not a suitable donor. A liver transplant was the only chance of survival for one-year- “We will pay whatever we will have to; it’s the law,” Toms explained. raising tolerance in society. old daughter Mara. She was suffering from a rare disease – biliary atresia. Bile was accumulating in her liver and causing cirrhosis, impaired liver function. In other words, Edite says that the operation costs had originally been put at around €87,000. A bile was eating away at her liver. The only people eligible to be donors were relatives month before leaving for Brussels, Mara’s parents had received a letter from the clinic National of Mara aged 21-50, in good health and with a compatible blood group. explaining that the parents had to cover 20% of the operation costs themselves, i.e. €17,400. Since they did not have that kind of money, all they could do was to ask for Ziedonis’s middle brother Ivars was the first to go for tests; he had no doubts about donations. Ziedonis’s colleagues from the National Armed Forces (NAF) already knew his health since he had been a blood donor for two years. Tests done in Latvia showed that the little one needed help, so they offered money. There were also other people winner that he could be a donor. Ivars went for examinations at the clinic in Brussels where who wanted to help — complete strangers who had received an email sent by Edite’s the little Mara’s transplant was to be carried out. The tests revealed he had hepatitis B. sister via the Draugiem.lv social network site, and had passed it on. “It should already have been spotted in Latvia, shouldn’t it? It means that his donated blood had gone into transfusions – along with the hepatitis!” Edite, Mara’s mother, was ANITA SETS OUT ON THE JOURNEY critical of the health professionals even though no liver transplant had yet been done in Latvia and so there were no appropriate specialists there. That day when colleagues told Anita Liepina that the second brother was not a suitable donor and that all the Mikises’ other relatives had already been asked, she thought she Then Imants, Ziedonis’s youngest brother, went for examinations. The doctors in Latvia might be able to help. She had known Ziedonis since his military service days in 2008. gave the green light, though the situation in Brussels was different – the bile ducts in For a while they had even shared the same office. Ziedonis does not work for the NAF his liver were found to be enlarged. In total it had taken nearly two months to examine anymore; he is responsible for the planning work of the 22nd Infantry Battalion. Anita both brothers. The next donor would have to be suitable because Mara could not wait still works in the NAF as warehouse manager in the Procurement and Services Centre much longer. “You are standing beside the child and you realise there’s nothing you of the NAF Logistics Command. can do. That is awful. Everybody is in tears. Helplessness.” Mara’s father, Ziedonis, recalls that he wanted to donate himself, but his weak point was his cardiogram. Edite’s “If I can help, why shouldn’t I, right, little Mara?” Anita says smiling at Mara and tickling relatives wanted to help too, but they were refused because they were too young and her on one side now, after the operation. “I have two grown-up daughters of my own. Latvia had not yet started families of their own. Liver donors put their own lives at risk. I’ve told them – and my husband – about little Mara. My daughter asked if my blood group would be compatible.

90 91 I told her it would be and that I wanted to help. All my family supported me. I appreciate They had contacted Anita’s family doctor in Valmiera to check whether her husband TEN MONTHS Mara’s mother Edite says the least during the interview. These 10 months spent at it very much and am very thankful to them.” had given consent for the surgery. Mara’s side defy description. We can get some idea of what it was like when Ziedonis, “Little Mara immediately got better after the operation,” Edite says showing photos that speaking about the hospital, mentions the neighbouring airport and the frequent planes Anita did not tell her mother she was going to Brussels for tests. She did not want to A day later the committee announced that Anita could be a donor. It was only after the clearly prove it. Before the transplant Mara’s skin and eyes were as yellow as a daffodil, taking off. “Ziedonis, it wasn’t frequent – it was every four minutes,” Edite corrects him. worry her. operation that the doctors disclosed that, if Mara’s condition had not been so serious, the next day Mara was breathing unaided and her skin was getting lighter. While she was in hospital, Ziedonis had been working in Valmiera – someone had had Anita would not have been allowed to donate. to earn the daily bread. When he needed to fight back negative thoughts, Ziedonis Anita set out on the journey on 10 February. She did her best to fight back uncertainty “Look, Anita with her third daughter!” Ziedonis laughs, pointing at the picture taken would work on a fence. and fear with positive thinking. They – Mara and Edite – were waiting for her at the It was seven o’clock in the morning on March 12. Anita was the first to go down to when Anita had met Mara for the first time after the operation. One in a wheelchair, the hospital. They had been “living” there since November. the operating theatre.Mara followed her two hours later. “You have a beautiful liver!” other in bed, entangled in a jungle of tubes. “Many children were accompanied by the whole family — so they could take turns and “The staff were wonderful, with just one drawback — they only spoke French. We were Anita laughs remembering how the surgeon has admired her healthy liver after the not to have to stay in hospital all the time. My relatives could only make occasional sent to a lung-volume test with hand gestures,” Anita laughs. The hospital worked operation. She does not really have a special recipe for healthy living. “I don’t drink, I point out to Anita that she already seems tired in the pictures taken before surgery. visits. I didn’t leave the hospital for months. I couldn’t sleep for the equipment beeping slowly; several days went by between tests. After two weeks the doctors had concluded don’t smoke. But it’s not like I just eat salad. I like, cakes, for example. “Not tired – ill. I had a cold, I wasn’t feeling well.” For the Belgians, a temperature a bit in the ward, doctors walking around day and night, temperatures measured every four that the test results were good; with Anita as donor, there was a 98% chance that Mara above 37 ºC does not count as a fever. They do not call the doctor until it goes above hours. Mara did not sleep well. The doctors kept calming us down: everything’s going would recover. But it was too early for optimism. The doctors knew that Anita was not By the time a third of Anita’s left liver lobe had been removed, it was 1.00 in the 38 ºC. to be OK, look at that big girl who came for an annual visit, Mara will be just like her.” the girl’s relative and referred her to a psychologist. The session lasted for an hour and afternoon. At around 3.00, Anita came round and her daughter Sindija took care of the specialist explained to her all the possible consequences including the risk of dying. her. “I am very happy to have such an understanding family. Without their support, I “Their healthcare system is something special,” Ziedonis admits, surprised that they My remark that such a long sickness can affect relationships and that anybody can just “At that moment I thought: well, when is my flight back? (Anita jokes at first and then would never have taken such an important step.” Yes, it is a bit difficult to understand had been allowed to enter the intensive care unit with their outdoor clothes on, and break down, meets with a joke from Ziedonis: “Well, we are soldiers after all, aren’t continues more seriously.) At that point a thought struck me – it’s my life. Little Mara – a healthy person lets herself be cut open and have a part of her liver removed! had only had to disinfect their hands first. The nurses were always in a good mood we, Emils?” was doing very badly. I had no way back.” The Belgian doctors appreciated it too, admitting that people like Anita were a rarity. and kept asking: “Ça va?”* To which they got the reply: “Ça va, ça va!” In reply to A couple of days after the operation, Anita learnt that, in the case of her death, her her husband, Edite asks why the nurses wouldn’t be cheerful with four children to one “Yes, we are. I’m going to be a general,” Mara’s brother Emils agrees, with a salute. The decision on whether or not she would be a donor was to be taken at a meeting of relatives would receive money from an insurance policy. nurse. Since Mara had been premature, Edite had had to stay in hospital and do many the Ethics Committee of the Brussels clinic, during which Anita was asked questions by things herself. The Belgian nurses had wondered where she had learnt it all and they Edite had noticed the opposite effect – that families grow stronger in hard times. several doctors. The patient’s family was responsible for arranging interpreting, so the Mara’s surgery lasted from 9 in the morning 6 in the evening. “Time passes so slowly! joked saying that she could certainly come to work in the clinic. There was a Romanian girl who was in a critical situation. Her father could not donate Mikises were grateful that Gundega Goldsmite, an interpreter working for the European You look at the watch – and the hands won’t have moved! It takes ages! Words of because he was infected with hepatitis B and they detected it in Brussels. This hit him Commission, had agreed to help. comfort don’t come either,” Ziedonis recalls the 12 hours of waiting. Although the Both Anita and Mara recovered quickly. One day, Mara carefully and accurately shredded very hard since he had been considered suitable in Romania. The doctors found that operation ended at 6 p.m., the parents didn’t see their daughter until around 9. The a napkin into thin strips. Anita weighed 10 kg less; before the surgery she had had the mother could donate; she just had to lose 10 kg. She lived on water – fainting and “The ethics meeting was gruelling. Like a cross-examination.” Anita had to spend 90 last three hours were the most difficult. Inara, Edite’s mother, recalls being agitated to lose 4 kg for a better recovery. Anita was discharged from hospital quickly, after fighting. The parents counted days until the operation. minutes convincing them that she was not donating her liver because she had been by the fact that the relatives were not allowed inside for such a long time after the just a week, but she still had to stay indoors and watch Latvian television in Brussels influenced in any way or because she had been threatened or paid. “Finally Isaid operation. Some unpleasant thoughts had gone through her head. Close by, some for a while. From November to June, Guntis Smilgzdrivs’s apartment was turned into According to the Children’s Clinical University Hospital, one Latvian child travels abroad that I was there because I wanted to help; I hadn’t just come for the fun of it. I had child’s relatives had begun to cry. headquarters. He worked for the military representation in NATO and kindly provided each year for a liver transplant. Some never come back. A six-month-old baby died of my family and children and I had come there to be a donor and if I was suitable, I’d “That day, the lunar phase was favourable for surgery,” Mara’s granny observed. Edite accommodation for all the people involved in Mara’s recovery. “If I were to say how hepatic cell deficit this May in Hamburg. be one.” Anita believed that if the doctors had decided not to let her be a donor, they mentioned another thing that had helped: Mara had her chakras cleaned by a reiki grateful I was, several pages wouldn’t be enough,” Ziedonis says, thanking several would have put Mara’s life in danger. Clearly, at that point the doctors were assuming practitioner before going to Brussels. “We tried everything,” Edite says. They had hung people in Brussels as well as friends and relatives who have been supportive and have “God has been kind to all of us,” Edite’s mother says. On 11 June, Mara came back the same kind of responsibility for Anita’s welfare as for Mara’s. the Latvian mythological symbol of life on the baby cot. “Remember, the healer said kept their fingers crossed for little Mara. home to Valmiera, on her own feet but holding on to her mother’s hands. that the donor would be a woman and remote, not a relative,” granny comments.

92 93 “Emils and me, we were eager to see mum and sister back home,” says granny, smiling.

Over the last year, there has been a lot of thinking about what is important and what’s not so important. “The most important things are health, mutual understanding and work. They’re interdependent and they all can be easily lost,” Ziedonis says adding: “I wish there were more people like Anita!”

Mara is quite agile. Once every two weeks she still has to go for tests and every six months she has to go to Brussels for a check-up. She’ll never be a great athlete but it’s really only professional-level sport that will be beyond her. Anita, on the other hand, cannot lift any weights. She was not allowed any alcohol for one month, and could drink fizzy drinks or champagne for three months. The restrictions were lifted in May when Anita celebrated her 40th birthday. That day she sipped some fine French champagne given to her by Gundega, the interpreter from Brussels. To her third daughter’s health!

French for “Everything OK?” “Fine, fine!”

95 94 Dalia Vencevičienė was born in talking openly with each other. Men also suffer when a loved one falls ill. My husband Oncological illness – does it give understood me perfectly”, says Erika. April 1981 in Vilnius. She studied “When we saw that death could separate us, we realised how strongly we love each more than it takes? other and how dear we are to each other. Minor irritations and squabbles seem Journalism and has a Masters Degree ridiculous now.” in International Communication. oday’s woman is in a permanent hurry, she worries about small things, and when Erika says the disease gave her more than it took. She spends more time with her she gains a few kilos in winter, she feels like the ugliest person in the world. “If Vencevičienė has worked as the T family, she works less, she does not attend unnecessary meetings and parties, but she only she knew what it feels like for women diagnosed with cancer…” So think many Editor of a National TV Show and was women who have to face up to the disease. Three well-known Lithuanian women who eagerly takes on social and charitable projects and heads the Pink Ribbon group she employed as Project Manager for the overcame cancer say the disease made them think again about their values. It made set up. them stop, reject imposed standards and seize the day. Doctors and psychologists Public Institution “Klasikos projektai”. confirm that people who recover from cancer are able to see the real value of life. How Artist Ieva Babilaitė: “The biggest gift that life has given us is the ability to is life now viewed by Erika Umbrasaitė, Dalia Bielskytė and Ieva Babilaitė? And what do accept it with all its difficulties” From 2004 to 2008 she was Adviser to the Minister the experts have to say to people affected by cancer? of Culture of the Republic of Lithuania. Currently, “You have to learn to accept every challenge life throws your way as a gift. The Journalist and public relations officer Erika Umbrasaitė: “When my cancer knowledge that you may die at any time brings incredible energy.” That is Ieva Vencevičienė is Author and Chief Editor of the National died, a woman woke up inside of me.” Babilaitė-Ibelhauptienė’s conclusion, based on what she has gone through. Ieva is now the happy mother of little Matas, as well as being the wife of the well-known pianist website for the prevention of cancer and Director “We cancer survivors are more advanced towards perfection; we are better; we don’t Zbignevas Ibelhauptas, and a prolific and astonishing artist in her own right. of the public institution Virtus LT. pay attention to superficial things. We all know that women are constantly under pressure to conform to certain norms. Before I got ill, I was quite self-critical and very “I prayed and saw how my prayers changed: I started out demanding, then begging, winner afraid of ageing. My cancer was diagnosed four years ago and, when my husband and then I started to trust.” Several years ago doctors had warned Ieva that her lymph shaved my head, I saw for the first time how beautiful my eyes are. Why did it take so node cancer and the treatment would take a heavy toll, and that she would probably long for me to how beautiful I am? I remember talking with Jurga Ivanauskaitė and never experience the joy of motherhood. she told me: “What a paradox: when you become ugly, you become very beautiful to yourself.” “Doctors say that particularly after intensive chemotherapy or bone marrow transplants, cancer survivors cannot have children – and this is confirmed by research. I was also Erika was diagnosed with breast cancer four years ago and her breast was surgically warned before the treatment. I knew I would never have children, because that’s removed. But she insists that there are higher prices you can pay for life. She says that what the doctors told me. And I told my future husband before we got married. So we during the treatment much of her old energy was lost, and one breast was sacrificed: accepted this reality and tried to live with it. But my intuition has always been different. now all she has to look at is the artist’s metal cast. I used to ask doctors – I visited a good half of the doctors based in Vilnius – what are “Now for me it is a battle scar, not a sign of a broken body. Before the surgery the my chances of having a baby. They looked at me like I was mad. My friend who already doctors used to say that I’d lose a part of my femininity. How much do my breasts has 4 children and has had a bone marrow transplant tried to comfort me: “You’ll be weigh, I asked. If they are 200 to 300 grams of my femininity, then what about the able to adopt one.” I think that’s the kind of thing you can only say if you’ve been remaining 60 kilos?” she smiles. through the same experience, because everyone wants to have their own baby.”

“The most difficult thing was showing the scar to my husband. I realised that I began Together with her husband, Ieva went on a trip to Italy which turned into a pilgrimage. In Rome they met a priest who showed them holy shrines and visited the churches with to distance myself from my husband. It could have ended in a weird divorce story: them. “Travelling back home with my husband, I felt sick the whole time but just put ‘She got cancer and left her husband,’” Erika laughs. “I felt like an unhappy victim. I it down to the Italian spaghetti,” Ieva jokes. But when the nausea went on for weeks, Lithuania could show my scar to the doctors, but not to my husband. What really helped was Ieva made an appointment with the doctor, who examined her very carefully, because anti-cancer drugs can have nasty side-effects.  Well-known Lithuanian female writer who died from cancer recently.

96 97 “I am used to life’s surprises, so I wasn’t afraid. I accepted it as just one more gift from disciple, if I can be allowed to stay here a while longer. I appreciate this gift and try to “It would be wonderful if, despite all the physical inconveniences, you could find the heaven. Of course, we were thrilled when they told us I was pregnant. I realised the share as much as I can”. strength to be with your soul. Your true essence is not your body which never stops intuition I’d always had was spot on – heaven had listened to my secret inner wishes. changing but the soul which is divine,” says Aistė. My prayers were filled with peace and confidence. After all, we often turn toGod, “The disease is a test, the disease is a deep river, and if you find a shallow crossing prompted by strange reasons, selfishness and whims; then we wonder why our prayers place, you should mark the spot for others. When sick people look at ones who’ve Onco-psychologist Laura Bratikaitė: “Enjoying life is normal” go unanswered. All the time I felt my prayers would get a positive response. Today I recovered with eyes full of hope, it already feels like a victory. Hope and the desire to Onco-psychologist Laura Bratikaitė says that those who recover have another think it is very important to give thanks for all good things that are right there beside recover are paramount in this journey,” Dalia says. characteristic in common – a desire to get back to the activities that they used to do us. We need to recognise the beauty of life and to live our own life, regardless of the as soon as possible. It’s like a challenge and a test at the same time. Can I start doing prevailing social values”, says Ieva. Prof. Aistė Diržytė who works with women with cancer: “Only angels don’t that again? Am I healthy enough? react.” Dalia Bielskytė, president of the onco-hematological patients’ association “Take account of the state of health – you may need to take things easy in spite of that Kraujas (Blood): “The disease is the teacher.” “Being positive means different things to different people: some think it means ignoring burning desire to live life to the full, but you can still express your love for life and enjoy the problems, no moaning, no complaining about their fate. Others think it’s about facing each day. The experience your disease has given you will probably have changed your Eleven years ago the artist Dalia Bielskytė had cancer but managed to come out the difficulties with courage, accepting life’s challenges, solving problems constructively. approach to many things. Be united and strong! Enjoy life!” says Laura. other side. She says that the cancer changed her life for the better. She was diagnosed Psychology defines positivity as the ability to explain events and phenomena as with blood cancer – leukaemia. She was 24, with two small daughters, when the illness having sense and benefit without reservation; as the belief that life is a gift without URL: http://www.iveikliga.lt/index.php?option=com_content&task=view&id=206 hit. “Still, the disease enriched me – in terms of relationships and experience. I became reservation, and that difficulties are challenges, but that even the most complicated more beautiful to myself. This is how people grow. You look at minor things with more stories end happily (Seligman, 1990). So being positive means tackling complicated life simplicity and you start valuing things that are really worth it,” Dalia explains. situations constructively. It does not mean suppressing your feelings or not crying, but being constantly geared towards victory, peace, health – remembering all the time that article published on www.iveikliga.lt After her recovery, Dalia did not forget the disease and those who need help: recently you’ve got to keep moving to reach the destination,” Aistė explains. she became the president of the oncohematological patients’ association Kraujas She says that even the most positive cancer patients who are already in remission (i.e. (Blood). “Whenever I speak with the sick and with the recovered ones, I invite them to have no symptoms) admit that they have gone through periods when they felt sad and work together to support the people on the front line – doctors and patients. Anyone demoralised. Some of them have suffered genuine depression. with good will and good ideas is welcome. You may already have information about “It’s impossible to stay in good spirits all the time: a single day can bring emotional your illness, you may have overcome the initial fear, you may – and I wish this for pain, anxiety and sadness many times over. If we were to remain positive, meaning everyone – already have gone into remission and happily rejoined the world of the fully emotion-proof, we would be angels, not humans. In this life it is normal to feel healthy, but… don’t forget how you felt in the early stages of your illness. Offer others a emotional ups and downs. But it’s crucial not to get stuck in the depths of suffering. helping hand, talk, listen. Make it your mission, because there is nothing more beautiful A diver who stays beneath the water too long can’t return to the surface. The same happens when you focus too much on the negative for too long, without any break. than fellowship and compassion.” Emotional life becomes fragile,” Aistė says. Dalia says the most important thing is to remember that your lust for life can go on For Aistė, as a psychologist, being positive does not mean not thinking, seeing, hearing, despite the illness. Patients and healthy people all have the same right to celebrate life: feeling and experiencing “bad things”. It is important to understand (if you do not know it is just that patients have a heavier burden to carry. “Let’s meet up, let’s spend time already) that – no matter how threatening – the black clouds are moving and will pass together, let’s be happy and help in any way we can. When we’re healthy, we don’t by. When serious illness strikes, it means life has given you a special challenge. Find notice how thin the dividing line is between happiness and disaster, between life and people you can talk to about it and who can be there (when you want to them to be). death. And the disease makes no distinctions: it hits young and old alike – just like the You may find people who can give valuable advice on treatment and minimising side- rain that falls from the sky. Some would say you’re lucky if you manage to avoid it, but effects. I’d be inclined to say you’re also lucky if it hits you but you manage to learn something from it. Because the disease is a wise and fair teacher. I had my encounter eleven years ago. We became close acquaintances – the disease and I – and I think I was a good 99 98 Andrea Glos studied literature at Opinions on planned caesareans on the other hand are sharply divided. It’s difficult to War of words in the delivery say exactly who holds sway, those in favour or those against. What is certain, however, the Julius-Maximilian- Universität in is that the number of babies being delivered by caesarean section has increased. room One reason for this could be demographic change: nowadays women often choose to Würzburg. The native-born German have their babies much later, which automatically increases the number of high-risk started her career as Editor for the pregnancies. It also leads to more IVF pregnancies, which in turn boosts the incidence Natural birth or planned caesarean? The debate on the best way to bring a of multiple births. All these factors are reasons for performing a caesarean on medical grounds. German TV programme “Pro7” in child into the world is highly emotive. Revue examines the controversy. Munich. Afterwards, she worked Also, the fact that nowadays women are far more likely than in the past to have a job t’s clear from internet forums for new and expectant mothers that the burning issue plays a role in their decision to opt for a caesarean. After all, this allows them to plan of the day is planned caesareans. A war of words is under way, with arguments such for ZDF in Mainz until moving to I in advance exactly where and when they will have their baby. ‘With my second child as: ‘You just can’t be bothered to push’ and ‘I want to decide when and how I bring my I deliberately opted for a caesarean. For organisational reasons, because some of my Luxembourg in 1999. Since 2003 Glos child into the world’. War also seems to have broken out in surgery waiting rooms and family live abroad’, says Rebecca S, a 35-year-old who had all three of her children by pre-natal classes, and among obstetricians, midwives and even doctors. It’s ‘natural caesarean. has been writing for the Luxembourg Newspaper birth’ on one side versus ‘planned caesarean’ on the other. “Revue”, specializing in health since 2006. In 2004 Clearly, fear of the labour process and the pain associated with natural birth is another The trend for planned procedures has been highlighted by celebrities such as Liz reason women are increasingly taking the caesarean route. Opponents of planned she won the national final decision meeting of the National Hurley, Britney Spears and Victoria Beckham, who apparently scheduled her caesarean caesareans counter that with a natural birth you have the pain beforehand, with a between two of her husband’s football matches. The UK tabloid press reacted to their caesarean you have it later. But the pro–caesarean reject this argument too. They fear European Journalist Prize “For Diversity – Against news with the infamous headline ‘Too posh to push’. Advocates of planned caesareans the damage inflicted by a natural birth can be greater than the pain of a wound sustained countered with the slogan ‘Preserve your love channel – Choose a caesarean’. Discrimination”. Last year Glos was decorated as through surgery. The baby’s head stretches muscles, nerves and connective tissues as it travels down through the birth canal, sometimes with serious consequences. Indeed, winner What’s going on? How has this discussion come about? The fact is that in the last 20 the finalist for Luxembourg in the “EU Health Prize 20% of women who have a natural birth complain of urinary incontinence. In other years there’s been a significant increase in the number of caesarean sections full stop. words, they can no longer control their bladders properly. In rare cases a deep tear also for Journalists”. In Germany, for example, in the early 1980s an average of one in ten deliveries were leads to bowel incontinence. This was the case for 41-year-old Nina H.: ‘Complications caesarean, whereas the current figure is one in four. The situation in Luxembourg is arose while I was giving birth to my daughter five years ago. Her shoulder was wedged similar: caesareans accounted for 25% of deliveries in 2009, twice as many as 20 years in the birth canal and she had to be delivered by force using a ventouse. I tore, which ago. resulted in bowel incontinence. I’ve had a number of different operations since then but I still have to wear pads.’ Consequences such as this have a serious impact on a However, by no means are all caesarean sections planned. Most are performed on woman’s daily life and not least on her sex life, and put many women off having a medical grounds, generally if mother and child are at risk (where the baby is breech, vaginal birth. for multiple births, infections, etc.). In other words, the operation is planned, but for medical reasons. Generally speaking a planned caesarean is performed 10-14 days One of the disadvantages of a planned caesarean is the lack of a birth experience. For before the due date. Most patients no longer have a general anaesthetic but rather many women, despite the pain, giving birth is one of the most beautiful moments in an epidural or a spinal block. Nowadays, if carefully planned, an operation of this type their lives, something they are proud of and would not want to miss. ‘I don’t believe in carries virtually no risk for mother and child. planned caesareans’, says Vera F., who had three children by natural means. ‘There’s something missing. It’s like having a honeymoon without getting married.’ They also Emergency caesareans are another matter entirely. If complications arise during a feel that immediate physical contact with the baby straight after the birth is important. natural birth, midwives and doctors may decide to perform a section. In this case It helps the mother connect with her baby, something experts refer to as bonding. time is of the essence, and a general anaesthetic is usually unavoidable. Clearly this ‘The relationship between mother and child is strengthened by the hormones that are poses a significantly greater risk for mother and child. Doctors, midwives and mothers released during labour,’ explains a midwife from Luxembourg. ‘Also, mothers who’ve Luxembourg therefore generally agree that an emergency caesarean is always a last resort. had a caesarean more often have problems bonding with their baby because, for

100 101 surgical reasons, they can’t cuddle their baby immediately.’

Clearer still however is the fact that babies born by caesarean are two to three times more likely to have respiratory problems than babies born naturally. This is because, unlike in natural births, with surgical intervention the amniotic fluid is not expelled from the baby’s lungs. Advocates believe that the natural birthing process massages the baby, which in turn strengthens its immune system. And a natural birth is also said to make breastfeeding easier because the milk arrives more quickly.

It’s not easy for expectant mothers: the many pros and cons in the discussion make the decision a difficult one. Mother Nature gives women nine months to make up their minds. They should use that time to seek out as much information as they can to help them make their decision, which everyone around them should then respect.

Margins In 2009, some 25% of all babies in Luxembourg were delivered by caesarean section, twice as many as 20 years ago.

One of the disadvantages of a planned caesarean is the lack of a birth experience.

20% of women who had a natural birth complain of urinary incontinence.

Interview with Jean-Marie Feider, president of the national health insurance fund, Caisse Nationale de Santé (CNS) (coming soon)

103 102 Moira Mizzi is not a journalist by “I first got to know that Craig was on the autistic spectrum when he was two-and-a- THREE LITTLE ANGELS half years old” Valerie reminisces as she gives up on her ironing and joins me at the profession, but has been working as table with her own mug of hot brew, “Initially I was in denial, I couldn’t accept that my child could be affected with such a condition especially since there did not seem to a medical doctor for the past 17 years anhattan, 24th February 2010 - Gigi Jordan kills her 8 year old son by giving him be anything wrong with him except that he looked lost most of the time”. “Then I got Man overdose of crushed prescription pills. Two months later, on the other side of pregnant with the girls and I felt reassured that it was not going to happen again since . She also gathered experience in the the world in Gela, Sicily, Vanessa Lo Porto, takes her two boys, one 9 and the other it is much more common in boys”. Unfortunately, this was not the case. Yvonne was field of cosmetic medicine for almost 2, for a swim and deserts them in the sea, alone, to combat the waves, turning a deaf diagnosed with the condition just before the age of two; Hope was diagnosed with a ear to their pleas for help. The bodies of the two boys were recovered some days later. milder form a few years later. eight years. Currently, Mizzi works Only two weeks ago, Yvonne Freaney, took her 11 year old son’s life in a hotel room near Cardiff International airport. The motive behind the death of these four boys was Valerie explains that initially, one of the biggest hurdles was finding a way to with the multinational pharmaceutical company one – they were all on the autism spectrum. communicate with the children to be able to understand their needs and be there for GlaxoSmithKline, where she has been holding the them. “Craig is the most severly affected and so I devised a way to communicate with Autistic spectrum disorders (ASD) are a range of related developmental conditions whose him using a pictorial dictionary” she explains as we leaf through a velco-lined folder post of a medical affairs officer for the past four signs are usually manifested during the first three years of life and persist throughout holding a multitude of small stick-on pictures groups each explaining a specific task like adulthood. ASD can cause a wide range of symptoms but the most broad categories having a bath or eating lunch. “Each task has to be explained in steps beforehand to and a half years She is in her final year as a trainee include difficulties with social interaction, impaired language and communication skills the children”, Valerie says as Craig comes over to give her an affectionate hug, “autistic Gestalt psychotherapist. National and unusual patterns of thought and physical behaviour. In the latter case, the child children cannot tolerate surprises and any new thing that comes their way like a loud performs repetitive behaviours which he or she develops into an unbreakable routine voice, a bright colour, a strong smell, the texture of a particular paint or even a new or pattern ; any attempt to break this pattern can upset the child greatly resulting in seam in an item of clothing can come across as a threat to them and disbalance them tantrums and occasionally uncontrollable behaviour. The symptoms of ASD can vary completely resulting in tantrums” she finishes off as she kisses her son softly on the from child to child and can range from mild to severe. Looked at from a perspective cheek. winner of severity, there are three main types of ASD - autistic disorder, Asperger syndrome and Pervasive Developmental Disorder with autistic disorder being at the most severe These tantrums and repetitive behaviour patterns of children on the autism spectrum end of the spectrum can become very challenging for the parents when they take place in public. “Since children with autism have no particular distinctive physical feature that makes them Associate Professor of Classics and mother of a 13 year old autistic boy Kristina different from any other child, people very often do not understand this behaviour Chew wonders what it is that drove such seemingly loving and dedicated mothers to and most of the time put it down as lack of discipline on our part or even bad manners something so antithetical to a mother’s very existence, the killing of her own child, as on the part of the child”, Valerie explains her voice laced with exasperation. Her eyes she asks “What aren’t we doing to support individuals on the autism spectrum and mist over as she continues in a softer voice, “if only people could stop and think again their families? Can we ever do enough?” before passing judgement it would be so much less painful for us to cope with”.

This question runs through my head as I run up a flight of steps to meet Valerie Brincat, In fact, the things that worry Valerie the most centre around the way her children are mother of three children on the autism spectrum, and uncannily the only answer I could viewed by society and their future. “I keep worrying that they get bullied at school, they come up with was another searching question as to how much our lack of knowlegde are such easy targets” she says softly. Her eyes mist over as she continues “especially and awareness on this condition could contribute to this state of affairs. since they would not be able to tell me about it due to their speech limitations”. She also expresses her extra concern about Hope who contrary to her siblings has no I hear a patter of small feet as I ring the doorbell and a little girl with a bundle of curls problem with social communication; on the other hand she gets too friendly even with opens the door, smiles at me and shakes hands. Valerie introduces me to Hope, one strangers she meets in the street. “I have to keep an open eye on her all the time as I of the 6 year old fraternal twins and the least affected by the condition. As I sit at the wouldn’t put it past her to walk off with a complete stranger” she says as she strokes kitchen table drinking a cup of coffee, Hope tells me about her favourite game with her the little girl’s soft curls. Malta limited speech while her twin, Yvonne, plays on the computer reacting very little to my presence. 8 year old Craig is playing a computer game in another room.

104 105 The future, literally, is a dark cloud for her. “I keep wondering what it will be like for them in a decade, how their puberty will be, if they will ever find a job, who will take care of them when my husband and I are not around, so many doubts and fears keep flooding my brain” she exclaims breathlessly, “and this lack of awareness and education about the condition in society doesn’t help to put my mind at rest” she adds.

In fact the things that Valerie would so much like to see changing is society’s perception and knowledge about the autistic spectrum including that of parents of autistic children themselves. “There are still parents who hide their children from society to avoid the disapproval, the negative interactions mostly stemming from ignorance” she explains softly. Her voice becomes stronger as she adds, “this is a state of affairs I very much hope to see changing in the coming years”.

One couldn’t say she is not trying to do her bit. Valerie reads incessantly about the condition, the latest treatment rationales and the controversies which very often surround the correct management of such children. She is also one of 94 members who form part of the Autism Parents Association (APA), a non-governmental association, set up by parents of children diagnosed with autism spectrum disorders, designed to help and facilitate the process of integration of families with these children. The association’s president Ms.Sandra Borg believes that this process very much parallels the bereavment stages, so clearly outlined by Elizabeth Kübler Ross, that one goes through with the loss of a beloved with acceptance hopefully being the final stage after the initial denial and anger phases. Her major hope is that one day all the families having children with autism could be reached in their homes on account of the hardships they pass through primarily to obtain a diagnosis and secondly to identify the needs of their children and that all parents could be educated to develop opportunities both locally and hopefully also internationally.

In fact in 2005, the European Commission decided to support the creation of a European Autism Information System (EAIS) with the aim of improving the flow of information about ASD in European countries. Likewise earlier and more consistent diagnoses could hopefully be reached resulting in earlier intensive education of children affected by this condition which was found to greatly improve the prognosis.

After having inhabited the world of these three little angels for a mere couple of hours, my wish is that th���������������������������������������������������������������eir hope becomes a national beacon for other families. The only way to achieve this in my opinion is to simply stop looking at these children as “less fortunate than us” especially since most of us do not really know what we’re comparing ourselves to in the first place.

107 106 Freelance journalist Matthijs because we were seriously disrupting the polyclinic’s schedule. But after a while, the NEVER AGAIN cardiologist found some time to drop in and help us evaluate the patient. Buikema (37) writes for various Now I had to call the same cardiologist for help once more. I was really hesitating. Dutch magazines and journals. He Gerda Zeeman, gynaecologist/perinatologist I feared this would inevitably lead to a clash. Especially if it turned out that nothing was wrong and I had called for no reason. So I decided to ask a fellow gynaecologist, is specialized in medical and mental ‘The paediatric cardiologist was so busy I didn’t dare call’ who left the OR for me. We examined the ultrasound for 45 minutes and concluded health(care), with a special interest nothing was wrong. But it didn’t quite reassure the parents-to-be. They had seen the ‘I have a sharp eye for safety. I got that in the United States, where I was doubt on my face. To ease their worries, I told them to come back in a week’s time for in patient safety. He publishes a trained. You really have to be on the defensive there, the litigation culture another check-up. I now know that I wanted that extra check-up mainly to convince leaves you no choice. The advantage is that you become very aware of the parents, and myself, that everything was OK. In a situation like that, you risk magazine for hospital employees on anything that could go wrong. I will always keep that sharp eye, and I looking out primarily for those elements that support your presumptions. I spent 30 this subject and has published several books about often warn others about the risks – great or small – inherent in any course more minutes scanning the ultrasound, still found nothing, and again told the parents of treatment. So when all of a sudden you’re the one who makes a mistake, that everything was fine. There was no need for them to come back.’ dealing with adverse events. Buikema also works you simply can’t believe it.’ Fatal bleeding as a camera journalist (camjo). He graduated in erda Zeeman studied medicine from 1985 to 1993 at the Vrije Universiteit 1997 from the School of Journalism in Utrecht (the National GAmsterdam and then spent a year in Houston as a research fellow at the Department ‘A few months later this couple wrote me a letter, four pages long, telling me that their of Obstetrics, Gynaecology and Reproductive Sciences of the University of Texas at baby had died. It had been born a month earlier in another hospital in town, without Netherlands). Prior to 2004 when he started his Houston. From 1994 she trained as a gynaecologist in the same city, at the renowned any complications, and the mother and child had been able to go home the same day. Baylor College of Medicine. At Parkland Memorial Hospital, Dallas, she specialised in But then the parents started to worry. The baby’s hands were blue, and it wasn’t feeding own media agency “Zin Tekst & Beeld”, he worked perinatology. In 2002 she returned to the Netherlands and started working for Isala well. The obstetrician was called in, then the GP. They both declared everything was for a major international magazine publisher for 8 winner hospitals in Zwolle. Since 2004 she has been working as a perinatologist for Universitair fine. Then a week later they found the baby in bed, all grey. When the GP arrived, he Medisch Centrum Groningen. In 2008 she became an expert panellist on “Missers”, a immediately sent the baby off to our medical centre by ambulance. It was discovered years. Dutch TV programme about healthcare errors. the baby had a transposition of the arteries, meaning that the pulmonary artery was where the aorta should have been and vice versa. The child was operated the same ‘A woman came to see me, seven months pregnant. The sonographer had referred night, but under far from ideal circumstances for such a serious operation. To begin her to me because the foetus was positioned awkwardly, and she couldn’t get a good with, the child wasn’t stable. And because it all happened during the weekend, the job view of the heart. Probably everything was alright, but she wanted me to check, was done by an emergency team that wasn’t used to operating together on children just to be sure. Seeing the ultrasound, I immediately felt something was wrong, but like this. The operation itself went fine, but at the end things went wrong when they couldn’t put my finger on what. Cardiac ultrasounds are very hard to interpret. The put in a drip just above the collarbone. By accident the IV needle hit the pulmonary literature shows that some conditions are hard to spot, certainly if the baby moves a artery, and the baby bled to death.’ lot. And mothers also keep getting bigger. Fat and muscle around the abdomen make sonograms less clear. So there are all kinds of complicating factors that can cause you A death that could have been prevented to miss a possible condition. Which by no means justifies what happened, because that day something else determined the course of events.’ ‘The parents had written the letter to go through the whole story once more. Because they had seen my doubt during the check-ups. Why hadn’t I done more? It broke Friction my heart when I read that. I knew immediately that perhaps things could have gone differently. If I called the paediatric cardiologist, the transposition might have been ‘If we have doubts or if we see an abnormality, we’ll call a paediatric cardiologist to discovered earlier. Or the cardiologist might have ordered extra tests, just to be on examine the heart and if necessary draft a plan for treatment. That particular morning the safe side. Then the baby would have been born in our medical centre, with all Netherlands we had already done so with another patient. When I called the cardiologist for this necessary expertise close at hand. Immediately after birth, the child would have been first patient, I got a slightly irritated reaction: we needed to get our act together, given a drip with medication to keep the valve open, so the oxygenated blood could

108 109 mix with the deoxygenated blood. After a few days, the child would have been stable enough to undergo surgery in ideal circumstances by a trained team. The prognosis for such an operation is fairly positive. More than likely, this child could have had a normal life. If only I had called in the paediatric cardiologist.’

Medical errors

‘I needed a few days to let everything sink in and find the courage to write back to the parents. I told them how much I regretted what had happened and how much I wanted to talk to them. The reality was that I dreaded this meeting. I wasn’t sure whether I should tell the parents every detail. Afraid of how they might react of course. On top of it all, the day before we were to meet, I appeared on a TV programme called “Missers”, about medical errors. We were discussing a case where the doctors told a patient they had been unable to see a pancreatic tumour, whereas it was clearly visible. During the programme, I made a statement on how you should handle a missed diagnosis, knowing full well that the next day I was going to have to talk about my own missed diagnosis. If the doctors had admitted that they had simply missed the tumour, it would have been less painful, the victim’s family said. So in my own case, I had to be open and honest.’

No blame

‘Strangely enough nobody blamed me. The parents understood that things had happened as they did. They just wanted to know exactly what had happened. And what I was going to do to reduce the likelihood of it ever happening again. I said that the different teams would meet to change our scheduling and organisation. And that meeting with the paediatric cardiologists went great. No friction, no finger-pointing, nothing of what I had feared. Just a willingness to cooperate and reorganise. In a second meeting with the parents, I was able to tell them that we had set aside a special time slot for consultations with paediatric cardiologists, so if we referred patients to them, they could take their time for the examination. A simple solution that even today everybody is satisfied with.’

Moving on

‘When I met the parents for the third and last time, they said that they still really wanted to have another baby. To my surprise, they asked me if I would help them should the woman get pregnant again. What a great feeling to win back their trust. It felt like a second chance, a chance to make up for what had happened. I did help them, and they are now parents of a healthy boy.’

111 110 Olga Woźniak is a science journalist Polish doctors carry out successful surgeries on complicated heart defects in children Fixing hearts more and more often. Krakow, Łódź, Poznan, Warsaw – in those cities the heart based in Warsaw, Poland. She studied magicians heal hearts no larger than a golf ball – by stitching, patching, reconstructing and performing miracles of dexterity. at the Warsaw University and holds a Each year in Poland, 2000 young hearts need extensive repairs before degree in linguistics and psychology. they even start beating. Most repairs are successful. Is there anything that Cold means life paediatric cardiac surgeons cannot do? From 2002 to 2010 she has worked The surgery has been underway for 40 minutes already, but the clock is starting to run he quilt covering this 1 ½-year old girl also covers a heart. Made from transparent faster now. for the weekly news magazine Tplastic, it’s pumping and filling with blood. Tubes connect it to the chest of the sleeping child. It doesn’t resemble Valentine hearts. Rather, it looks like a jar... “Stop the pump,” the surgeon orders. The machine which looks like… – well, the heart- “Przekrój”, covering topics on health, lung machine does not look like anything recognisable – sustains the life of a child psychology and science. Currently, Woźniak works “This is not the whole heart,” explains Dr. Tomasz Mroczek, who is guiding me through covered with green towels. Whoosh… the mechanical heart and lung machine comes the intensive care ward of the University Hospital for Children in Krakow. “This is just to life as blood rushes through it. But there is surprisingly little blood; a teacup’s worth on a freelance basis for a number of magazines. the left ventricle.” maybe? That is how much blood is contained in the body of the nineteen-day old boy Over the past few years, she has been awarded lying on the operating table. When the left ventricle is inefficient and too weak, the child may suffer from insufficient several grants and prizes. National oxygen supply to the brain or kidneys. Why? Because the left ventricle collects oxygen- The operating theatre is cold, it has to be. Without oxygen, the human brain can rich blood from the lungs and has to pump it to all the other organs. survive for only two minutes, and then it starts to die. But what do you do when you need to stop the heart in order to operate on it? How do you protect the brain from “Without our intervention, the heart that the girl was born with would not have been oxygen deficiency? able to function any longer,” says Dr. Mroczek. “With the artificial heart, she is able to winner wait for a transplant. Or perhaps her own heart – less burdened now – will regenerate You stop time, or at least slow it down considerably – by using cold. In low temperatures, a bit in the meantime.” everything slows down; the body needs less energy and less oxygen. This is why the boy’s head is covered with ice. The heart-lung machine is working like a cooler now. The story of Zuzia, which is the name of the girl with a jar-shaped heart, is known to Whoosh... – and the temperature of blood decreases by one or two degrees. A quarter almost everyone in Poland. The Krakow cardiac surgeons were the first in the country of an hour later, the child’s body temperature drops to 13 degrees. He’s ice-cold. to perform this kind of surgery on such a small child. Circulation stops and all of the boy’s blood is collected in a plastic sack. Technically, he is dead. A heart outside the body “We have 50 minutes,” declares Professor Janusz Skalski, head of the paediatric cardiac Taking the heart out from the body requires great skill. It is equally difficult to do the surgery ward in Krakow. There is no more talk. The surgeons’ fingers move rapidly. opposite – put a heart beating outside the body (heart ectopia) back into the chest. They cut, stitch, and accomplish something that would seem impossible to the average This is the kind of surgery that only the best attempt. Fortunately, heart ectopia is person – they are operating on a child who was born with only half a heart. extremely rare: statistically, it occurs in seven newborns out of a million. Polish cardiac surgeons see a baby with ectopia maybe once a year. When the left half is missing

Two years ago, Professor Jacek Moll of the Polish Mother’s Memorial Hospital in Łódź HLHS is short for Hypoplastic Left Heart Syndrome, a condition in which the left ventricle performed ectopia surgery on a newborn immediately after birth – it was one of very of the heart fails to form. When the parents of sick children hear this diagnosis, they few such procedures performed worldwide. The first phase was a success, but the child usually have no idea what it means. died one year later. It turned out that the structure of the heart was beyond repair. But Poland such situations are increasingly rare.

112 113 The mother of Mateusz, four years old, went through her intensive course in cardiac its first breath, the duct starts to close. Because the sick heart is not able to pump In the heart-lung machine, heparin is added to the blood to stop it from clotting. Now, is an indication for an echocardiography of the foetus in a specialised prenatal cardiology surgery when she was 23 weeks pregnant. The doctor who performed the ultrasound oxygenated blood to the other organs, the doctors must do everything in their power however, the blood must be able to clot again. The anaesthesiologist administers other centre. Routine ultrasounds detect heart defects between the 18th and the 22nd week said, “I’m not sure. You need to consult a specialist.” She booked an appointment to keep the duct open. If they don’t do it on time, the child dies. If they manage it, medicines, without success. The heart still leaks. It takes an hour to get the situation of pregnancy. The defect changes as the child develops. If I diagnose aortic valve with one of the best prenatal cardiac surgeons (not covered by her insurance), who several days later the baby undergoes life-saving surgery. under control. The tension subsides slowly. The surgeon closes the chest and dresses stenosis in the 18th week, in the 40th week it may turn out to be hypoplastic left heart confirmed that the child had no left ventricle. the wound. The nurses count the gauze swabs, instruments and towels. Everything is syndrome.” Exactly the kind of surgery I saw in the cardiac surgery ward in Prokocim. What can as it should be. “I was in despair,” she recalls. “The doctor who performed the echocardiography told you do if the heart has no left ventricle? You need to try, one way or another, to make “Why not fix this valve stenosis early on?” me that this defect was operable and that the prognosis was good, but I just sat there the right ventricle take over its functions. Connect the blood vessels in such a way that The surgery took three and a half hours, and now the little patient is taken to intensive completely numb. What do you mean - operable?, I thought. In my belly? It was only the right ventricle pumps blood to the lungs and to the periphery at the same time. care. He will remain under anaesthesia for some time. Unlike the operating room, the “Some try: doctors in the US have done the largest number of such surgeries, our after my husband and I returned home that we started to calmly analyse the options The surgery also involves cutting an opening between the atriums. The modified heart intensive care ward is warm, very warm. And colourful, with pastel-coloured walls, colleagues in Western Europe are a little less experienced. The procedure consists of available to us. The surgery would have to be performed within the first few days after has one ventricle and one atrium. along which babies lie in incubators. Tubes in various colours stick out of their bodies. dilating the valve in the foetus.” birth, and there were a limited number of hospitals where it could be performed. Drains, feeding tubes, catheters. All around – screens on which red, green and white Such a structure works fine in frogs. But in humans? The advantage is that the child zigzags chart the patients’ condition. The average age of the children here is one year. I recall the question asked by professor Janusz Skalski: “If around one hundred We began searching on the internet. I was amazed to see pages of parents whose stays alive. The disadvantage is that the heart mixes oxygenated and deoxygenated In the middle – an island of adults with anaesthesiologists, radiologists, nurses. For the children are born with HLHS in Poland, how many, in your opinion, are born in Western children had the same defect. On the screen, I saw smiling kids who did not look sick at blood. The blood contains much less oxygen than normally, the child tires more quickly next two or three weeks, this room will be the little boy’s home. Two beds away lies Europe?” all. I read their stories, talked to their moms and started to believe that my child could and has bluish skin and lips. Thromboses and embolisms are also possible, that’s why little Zuzia with her jar-shaped heart underneath the quilt. live, run, go to kindergarten, to school, and could have a normal life.” the child needs to be on antithrombotic medication all the time. There is also the “A thousand,” is my guess. risk of endocarditis – an inflammation of the membrane that lines the interior of the “How many surgeries of this kind do you perform in Prokocim?” “HLHS is one of the Mateusz’s parents decided that the boy would undergo his surgery at the Polish heart, which makes it necessary to treat even minor infections, cuts or injuries with most frequent congenital heart defects,” replies Dr. Mroczek. “Around one hundred “Sixty on average,” replies the Professor. “That’s the reason why we have such excellent Mother’s Memorial Hospital in Łódź. They went to Łódź a couple of weeks before the antibiotics. children are born with it in Poland every year. Of them, twenty will die for various cardiac surgeons in Poland.” delivery date – Mateusz had to be born in a maternity ward, with the help of cardiac reasons, including lack of diagnosis. Around forty will undergo surgery in our hospital. surgeons. Six months later, the child should undergo a second surgery in which the superior The others will be treated in other paediatric cardiac surgery wards in Poland.” I ask Doctor Dangel about it. “In many European countries, when a child is diagnosed vena cava, which carries deoxygenated blood from the upper part of the body, is with a heart defect, women opt for abortion. It is believed that around 90 percent “The objective is to put the child on medication as soon as possible,” explains Dr. Mroczek. connected directly to the pulmonary artery. Oxygenated blood from the lungs will run Many patients – excellent doctors of children with complex heart defects are never born. But no exact statistics are “Plus it’s safer to transport a pregnant woman than to move a sick newborn. Children straight to the heart, and from there – to the rest of the body. During a third surgery available,” she explains. “In Poland, only five percent of women decide to terminate whose heart defects are detected in utero win a lucky draw – they can be prepared for (usually performed when the child is two or three years old) the inferior vena cava Several days later I speak to Assistant Professor Joanna Dangel, a prenatal the pregnancy if the foetus is diagnosed with a severe heart defect. And usually this surgery before birth.” is also connected to the lungs. In this way, deoxygenated blood bypasses the heart cardiologist. happens in those cases where the child also has other genetic defects or serious brain completely. damage.” “What about others?” “Critical heart defects that require surgery occur in around one percent of births,” she The heat is back quotes the statistics. “Now, when 450 thousand children are born every year, around “But why terminate the pregnancy if so many defects can be treated?” “They die,” says Professor Janusz Skalski. “A child with a congenital heart defect does three thousand are born with serious heart defects. Another six to eight thousand die not look sick at all after birth. It’s usually carried to term, is born pink and gets 10 “Start the pump!” commands Doctor Mroczek. 41 minutes have passed. The pumps before birth.” “This is about the patient’s quality of life. But I recall the following conversation with points on the Apgar score. The problems start two or three days later.” First comes start working. Still cold, the blood fills the tubes attached to the child’s body. The one of my patients: The woman’s baby was diagnosed with heart hypoplasia when she breathlessness, which may suggest pneumonia. Then fever and weakness step in, surgeons wait a while for circulation to start and to reach the heart. Now the heart- “What causes those defects?” was 23 weeks pregnant. The obstetrician advised her and her husband to terminate combined with faster breath and heartbeat, paleness or cyanosis, and vomiting. lung machine is heating up the red liquid. The child’s body slowly warms up again. The the pregnancy in France, where abortion is possible until birth. They told me, «What if doctors make sure that the heart and the vessels don’t leak, that everything has been “We don’t know. Many things may play a role, including environmental factors such in twenty years we meet a man living with this kind of defect? We would never forgive “This looks exactly like sepsis,” explains Dr Mroczek. “Doctors administer antibiotics, patched up. as noxious substances, such as medicines, as well as genetic factors or disease in the ourselves for not giving our son a chance».” but the child dies nevertheless. Later it turns out that it was a heart defect.” mother. The heart forms early on – before the eighth week of pregnancy.” “Launch!” Doctor Mroczek decides finally. He holds the heart in two spoon-like electrodes “He survived?” Why doesn’t the child’s condition worsen immediately? Because in utero, the child and sends electrical current through it. It looks like starting up a car when it’s freezing “When is it possible to detect a heart defect?” uses its heart slightly differently than we do. Its blood stream functions without the – you put the clamps to the battery and try to start the engine. There it goes! “Today he’s eight and is growing fine. Abortion isn’t good, but... there are cases where lungs and oxygenated blood is supplied from the mother’s body via the umbilical cord. “An experienced doctor may notice that the heart is incorrectly formed as early as the you really cannot help the child. Conjoined twins with one heart, inoperable defects.” This mechanism works thanks to a structure called Botall’s duct. When the child takes As small as a chicken’s heart, patched and stitched, the child’s heart beats. But it leaks. 11th or 12th week of pregnancy, i.e. during a nuchal scan. Increased nuchal translucency

114 115 “Do you advise your patients to terminate the pregnancy in such cases?” well operating on even very complicated defects, and once operated on, a patient can We have world-class specialists – says Professor Bohdan Maruszewski, chairman of the live very comfortably with his or her own heart. The oldest patient who has undergone Polish Club of Cardiac Surgeons. “A doctor has no right to advise the patient in any particular direction. Our task is to a HLHS surgery as a baby is over thirty today.” honestly inform the patient about the diagnosis and the treatment options.” “So it’s worth operating?” In 2008, we performed 2215 paediatric heart surgeries per million inhabitants, more “Did you consider abortion?” I ask this question to every mother of a child with HLHS than in Germany. And I know that the number in 2009 was even greater. According with whom I get a chance to talk. “Yes, although the paediatric cardiac surgery wards are experiencing efficiency problems. to Polish and European statistics, nearly one fourth of the patients were babies under We keep admitting new patients, but we have too few beds in the postoperative and one year. “No. But I was afraid that the baby would die in my belly. Or that even if it was born intensive care wards. There financing of surgical procedures is also insufficient. In alive, it would have no chance of surviving,” is the most frequent reply. Poland, around 800 children are waiting for surgery. Priority is given to those in the The so-called early mortality rate, i.e. the number of deaths within 30 days of treatment, worst condition. The others have to wait …” is 5.69% for all heart surgeries in children. The European average is 4.28%, but you “It took me a long time to get pregnant. I wanted to give birth to this child; I thought have to remember about the stratification of risk. We are the only country in Europe that maybe someone could live thanks to its organs.” ”...until they get so bad that they have to be moved ahead of those in slightly better where all heart defects in children are treated, whereas in the West, the most difficult shape? It’s difficult to communicate this to parents who see that their child is getting cases end with a therapeutic abortion. “I was determined to fight for my child.” worse and worse.” HLHS surgery, which is one of the most difficult operations, was performed on 77 “I was aware that it could die, but I wanted to see it and hold it in my arms.” “The problem is not that more children are born with heart defects,” says Assistant patients in 2008. This is more than the Munich clinic – well-known to parents – has Professor Dangel. “The incidence of congenital heart defects is stable. Paradoxically, done. In this category of surgeries, we reported a lower early mortality rate - 18.18% in Mateusz’s mother hesitates, “We talked about it with my husband. Some friends advised the problem is that we are able to correctly diagnose and treat more and more of those 2008. We could perform more surgeries, but we are limited by the number of intensive it, they would say ‘You will have other, healthy children’. But we were finally convinced defects. We have excellent, world-class specialists, but we don’t have enough hospital postoperative care beds available. One bed costs around 63 000 euros. In December by the parents of those kids who made it. I looked at the face of a boy from a blog beds. This is why in some cases the parents opt for treatment abroad, where they have 2009, the minister for health promised to finance 22 such beds by early 2010 and to about life with HLHS and I thought: this could be my child.” to pay for it, but where there are no queues. allocate 3.5 million euros to the construction of a postoperative ward in Łódź. This would enable us to treat 500 more patients every year. We are still waiting for this No donors “The solution is very simple: provide more financing for the existing, highly specialised promise to be met. paediatric cardiac surgery wards and neonatology wards where newborns with Today Mateusz is a cheerful four-year-old who started kindergarten this year. congenital heart defects await admission to cardiology clinics. Then the parents won’t have to raise funds themselves to finance the treatment for their children abroad.” “He tires sooner than the other children and is constantly on medication,” explains his mother. “I’m still worried about him. On the one hand, I don’t want to keep him Paying for the heart in a bubble, away from other children, but on the other, I am overprotective and I don’t think this will ever change. The ladies at the preschool had to learn everything The cost of surgery – depending on the complexity – can reach several tens of thousands about my child’s limitations, what to pay attention to – together with my husband we of euros. Those in need may refer to foundations for children with heart defects – this organised a proper training session for them,” she laughs and admits that her son has way their children may benefit from a one percent tax donation. Foundations also help been lucky. “I know from doctors and internet forums for parents of children with heart the parents to find doctors and psychologists for the little patients. And they support defects that sometimes serious complications occur. And that some children with this the parents themselves. defect may need a heart transplant later on.” The Radio Zet Foundation paid for Zuzia’s artificial left ventricle. The jar-shaped heart “Why not go for a heart transplant right away?” I ask Professor Jacek Moll, head of the lying on the little girl’s body fills with red liquid again. A healthy heart needs only paediatric cardiac surgery ward in the Polish Mother’s Memorial Hospital in Łódź. seventy beats and one minute to pump all the blood contained in our body. It goes ta-dam-ta-dam-ta-dam. Whoosh… The blood rushes through the vessels, atriums, “There are no donors,” he replies. “We are not able to perform more than one or two ventricles and valves. transplants a year in Poland, at best. Besides, those patients need to be on medication to prevent the body from rejecting the transplant. The medicine suppresses their immunity, making even minor infections dangerous. On the other hand, we do very

117 116 Christiana Martins was born in Rio de supermarket, officially passed off as mere forgetfulness. And her son, the psychiatrist, Fading minds would obediently concentrate on Dad… Until one day, I looked at her hair and realised Janeiro, but has been living in Lisbon for that my mother had changed. Up till then, the word ‘unkempt’ had never been part of her vocabulary. 19 years. She holds a Master Degree in hen dementia strikes, family relationships provide an irreplaceable source of Economic Journalism studied journalism Wsupport. The memory goes, but feelings remain. We invited Júlio Machado Vaz, I offered to take her to the hairdresser’s. ‘But he’ll be left alone …’. ‘I’m here, one of Margarida Pinto Correia, Manuel João Ramos and Fernando Correia to share their the boys could take you …’. ‘No, leave me alone …’. Confronted by her cries of rage, her at the University of Boston. Since 1990 families’ experiences. face hidden in her hands, her convulsive sobbing, how could I have been so stupid ? she has been a journalist in the weekly The third attack was the final one. Her husband was taken from her. Torn by suffering My mother’s tough tenderness that put medicine to shame, she straightened his sheets. ‘Your Dad still catches cold’. “Expresso”. Martins started her career When I told her the news, a strange calm filled the room and drove out the delirium in Júlio Machado Vaz* which she had been living. She disguised the order as a request: ‘will you take me with in the daily “Público”. In 2000 she was you?’ Before my astonished eyes, she kissed his forehead and, cradling my head in her awarded the “Prémio do Clube de Jornalistas” in the MY MOTHER’S TOUGH TENDERNESS won the gratitude of the entire Machado Vaz hands, sat and watched over him, assuring me that we would both try to do everything family. Husband, son and grandchildren became accustomed to her firm but not cutting ‘to protect the children’. field of economics. In 2008 Martins won the national opinions, her unfailing but never unconditional support and her welcoming, albeit category of the European Union Award against always temporary, bosom. She never allowed her strength to hold anyone back from We were all being forgotten, maybe because of the huge effort she was making to National making their own future. keep him somewhere close to her. But one day she straightened her back and her eyes Discrimination. Additionally, she occupied the third flashed once more with that green spark that both terrified and moved me. ‘Please help When her first great-grandson was born, she cradled him with the delight that she felt me to beat this.’ She was asking for help and approval. She was incapable of deception, position in the competition among countries of the for all children, but she was no longer able to recognise him as the latest heir to the ‘I’m only staying for you and the children ….’. I couldn’t help and she receded into European Union in 2009. family name and future guardian of its traditions. the caverns of her brain. Her body held out for 12 years but her spirit had long since winners joined my father. Now, she is waiting for me in Cantelães, where I will once again find When my father suffered his first heart attack, my mother said, with bashful her welcoming bosom, and balm for the irrational guilt which I still feel. Only she can determination, ‘if he dies, I will only stay for you and the children. Life without him provide this. ‘Come here, child’, she will say, smiling and opening her arms, in the place is meaningless. Forgive me.’ I gave her a hug but said nothing. There was nothing to where she is at rest, there amongst the (other) flowers. Isabel Lopes was born in 1961 and forgive. I had been the witness, the result and the envious observer of their enduring, gained her degree in Communication at tough love for 50 years. *Psychiatrist the Universidade Nova de Lisboa. Since When the old laughing lady from the Neil Young song once again tried to lure my father This was to be an article about fading minds. away, my mother’s life became dominated by the constant fear of losing him. She 1992 she has been a journalist working watched over his every step, his every complaint, his every grimace and, even when About the past and lives falling apart as memory fails. for the “Expresso”, the portuguese he was taking a nap, she invented pretexts to wake him up because he seemed too still or his head had fallen forward onto his chest. A man of fine intellect, after his second About the faces of loved ones that are becoming blurred, sons who are mistaken for weekly leading newspaper, and mainly attack, he alternated between impressive lucidity and a dazed state of confusion in husbands, sons who become grandchildren. About time that is increasingly out of which he sat like a zombie in front of the television, mindlessly channel-hopping. step with the real world. For the most part, it involved listening to those who look publishes articles for Única, the magazine after these patients and so it also came to be about their informal carers. The people of the paper. Lopes coordinates “O While his favourite newspaper remained unopened by his side, as if he had suddenly who witness the disintegration of their relative’s personality and their withdrawal from become illiterate … society, hidden inside their homes, protected from curious eyes and unkind comment. Cantinho do Smith”, a successful project for animal Gradually deteriorating, until they die. rights on the Expresso website. I would come through the door and ask her how she was, but she would immediately Portugal bring me back to (her) reality by asking ‘how do you think your Dad is?’, to which there Four public figures agreed to talk about their experiences and, in first-person accounts, was no reply. Meanwhile, without my knowing, she had begun to get lost in the street tell us how to cope and live with the effects of dementia. The psychiatrist Júlio Machado and to cope with everyday life by making little notes and worrying return trips to the

118 119 Vaz, the President of the Associação dos Cidadãos Auto-Mobilizados [Portuguese The average survival time is eight years but it can be as long as 20. ‘And they are Margarida Pinto Correia* what we’ve done today, she just has feelings. And then the following day she might Citizens’ Road Safety Association], Manuel João Ramos, the President of the Fundação deteriorating all the time’, he adds. say that she hasn’t seen us for years. There’s nothing you can do about it. We train do Gil [the Gil Foundation], Margarida Pinto Correia and the sports journalist Fernando PEOPLE FROM ALL OVER THE PLACE come up and ask me about her, in the most ourselves daily to cast aside the kind of reaction, such as ‘that’s unfair’ or ‘you can’t Correia, explain how their relatives’ illnesses permeated their whole lives. Since these patients’ memories regress in time in terms of points of reference, the unexpected places. You see, my mother travelled the length and breadth of the country. say that’, which might be prompted by the things that she says. You can’t reason with neurologist warns of the importance of keeping them in their familiar surroundings, Her banner of independence went hand in hand with her car, which always had a name her. We can’t say ‘that’s not what you’ve always said before’ or ‘you’re behaving just They agreed to share their pain specifically in order to break with the secrecy emphasising that ‘a change of routine can have dramatic effects.’ and which she treated like a pet. In the very early stages, she would leave herself notes like you always told us not to’ or … anything else. There can be no comparisons; no surrounding people in this situation in Portugal. Others preferred to remain silent. Spain written in huge letters, such as ‘remember to fill up’. demands. There is just the silent place of pain where all these feelings are kept. And had already provided us with the fine example set by the son of Adolfo Suárez, the For example, ‘it is very important for family members to maintain a united front but then there is the Carpe Diem of being able to enjoy a woman with a good sense of former Prime Minister, one of those responsible for facilitating that country’s transition they need guidance, because there is always the enormous problem of the emotional She was a school doctor and one of the first people to campaign against educational humour, a touch of sarcasm and a vast chest of life experience which is lost somewhere to democracy. impact of the disease. The father in the family photograph is no longer the same failure in Portugal and she didn’t stop until her brain stopped for her: teaching, deep inside her but from which she occasionally brings out some unexpected and person.’ And one of the first obvious signs is neglect of personal hygiene. campaigning, insisting on respect for others and social inclusion. marvellous treasures. Over seven million people in Europe suffer from various forms of dementia. The European Alzheimer’s Disease Consortium estimates that 153 000 people are affected The number of sufferers is growing because people are living longer. Some specialists She was a practising and progressive Catholic and an avid analyst of Christian – and If we walk along the street doing silly things and laughing, she is in a good mood for by these diseases. are already talking about an epidemic. other – texts. She was an indefatigable translator and a compulsive passer-on of texts the rest of the day. and articles which she found all over the place. She was a constant source of intellectual Almost 90 000 of them have Alzheimer’s disease, the best known of the neurodegenerative It can affect anyone. Men, women, all social classes and all cultural levels. ‘It’s a nourishment for everyone around her. I always had a slight sense – more an occasional If I tell her off because this is not how well-behaved people walk along the street, diseases, which is progressive and incurable. democratic disease’, Antonio Oliveira Costa, a member of the Board of the Portuguese irritation than a source of real distress – that ‘I will never know a tenth of what she she feels oppressed and becomes irascible, childish and sullen. Or just trapped, as Alzheimer’s Association, tells us. knows or read a tenth of what she has already read … and continues to read’. Except I’ve found her on so many occasions: furious because ‘nobody told her’ that we were Differential diagnosis of these pathologies is not always easy and families face a long that now she can’t remember any of it. coming to fetch her or which one of us was coming. Furious because ‘no one talks to wait before they get one. For this reason, Alzheimer’s has come to serve as an umbrella Despite the research efforts, the causes of the various types of dementia have yet to her’. Furious with those she shamelessly calls ‘the Salazar generation’, a generation of term for a whole range of symptoms associated with memory loss in the elderly. be identified. What we do know is that almost one in every 20 people aged over 65 and This same woman, my mother, now has Alzheimer’s. women who were taught not to think and to accept whatever happened to them and one in every five people aged over 80 suffer from dementia, with Alzheimer’s disease who therefore spend the whole day watching television, gossiping about other people According to the Associação Alzheimer Portugal [Portuguese Alzheimer’s Association], responsible for over half those cases. Her neurologist says that it is atypical but, as far as I can see, almost all cases are and waiting for their relatives to visit them … with nothing to talk about. She talks there is no single test capable of providing a definitive diagnosis of Alzheimer’s atypical. Today there are so many forms of dementia which can be identified and very systematically and clearly about these ‘women’, with an intellectual snobbery that disease. However, the Portuguese Alzheimer’s Association tells us that cases have already been patients that people have to care for. leaves us speechless. found in people as young as 50. In other words, although the probability of contracting Identification of the disease requires a careful approach because its symptoms ‘are Alzheimer’s disease or one of the other forms of dementia increases with age, age That’s the problem – all you can do is give care, nothing else. It’s the inability to do How do you fill the days for a person like that? How do you live with the pain of never frequently taken as normal signs of ageing’. To avoid confusion, the Association takes alone does not cause it. There are other potential risk factors: high blood pressure, high anything about what she herself calls an enormous black hole in her head, which has being able to spend time with her on a regular basis, every day, quality time that’s not the view that training should start with general practitioners, so as to end the torment cholesterol, obesity and low levels of intellectual stimulation and physical exercise. engulfed virtually everything. Luckily, we haven’t been sucked into it ourselves yet. just ‘having her there next to me’ while I push aside the rest of my life? There is no of having to wait years for the disease to be confirmed. One of the most common obvious answer to this, nor any absolute truth. And that’s a good thing. errors is the diagnosis of atherosclerosis, especially when the symptoms occur over a Once the disease is diagnosed, preparation is key. She knows who we are, her four daughters, although she sometimes confuses us when number of years. we are with her. *Executive Director of the Gil Foundation Alexandre Castro Caldas is in no doubt: ‘carers have to be taught to act out a role.’ Alexandre Castro Caldas, Head of the Neurology Department at Santa Maria Hospital, Every day, whenever necessary. The neurologist recalls a patient who would plunge But when she talks about us, there is no confusion at all. A short tribute to an angry man also explains that, ‘generally speaking, these patients are brought to a specialist by back into mourning the death of her husband every time, in the course of the day, she their families when the disease is already well advanced. Maybe because the first asked her sons where their father was. ‘Dad died’, they would reply. The woman would She knows that her friends are friends but she doesn’t know who most of them are. Manuel João Ramos* reaction of those affected is denial.’ burst into incontrollable sobbing. ‘You have to stop this,’ the doctor told them, ‘tell her She trusts the ones she instinctively knows were close to her and she liked, but she has he’s gone to buy some cigarettes!’ This is how life has to be lived when someone has no idea who they are. And then, from time to time, with no apparent logic or reason, AS I RECALL, it all started when Carlos Avilez was the Director of the Teatro Nacional Early diagnosis would enable these patients and their families to prepare for the future, dementia. As the neurologist said, ‘it’s paediatric medicine that these patients need.’ she can tell a whole story involving various people, all them clearly identified. She can D. Maria II [Dona Maria II National Theatre – TNDM]. My father wanted to direct and to choose who will be responsible for caring for the patient and even how the patient [email protected] be unable to do this one day and then be capable of doing it again the next. Or she act in a play by Thomas Bernhard (‘Histrionics’ or ‘The Maker of Theatre’). is to be supported financially. According to Castro Caldas, ‘these situations involve can’t do it before her nap but she can after it. The then Director of the TNDM, probably suspecting that my father’s memory lapses complex legal problems’, especially because this is a long-term illness. were signs of atherosclerosis, concealed from him the fact that he had no intention Carpe Diem Carpe Diem. We learned very quickly to live in the moment. She has no recollection of of putting on the play, leaving him to work in isolation, preparing a piece which was

120 121 never going to be staged. For years my father worked diligently on his production of *President of the Portuguese Citizens’ Road Safety Association hoped it wasn’t. We went from doctor to doctor trying to find the truth or better news. the play and on learning a demanding monologue, waiting in vain for it to be included But we were unsuccessful. in the theatre’s programme. When he finally realised that he had been tricked, he lost This terrible disease all respect for humanity. And today, all we can do, with a great deal of effort but with much understanding and Fernando Correia* love, is to disguise our concerns and nurture the hope that a cure is still possible. My father was a maker of theatre and, in the end, it was the theatre which made my father what he was. Excluded against his will from daily contact with the public and his I DON’T KNOW WHETHER IT IS, in fact, just love. They tell us this is not possible. At least not a total cure, because there are areas of the world, prevented from treading the boards, he became progressively more bitter, more brain that have been irretrievably lost. distant and, paradoxically, more lucid. And, when the disease was finally diagnosed, It could also be tenderness, affection, understanding, solidarity …. the Carlos Avilezes of this world had already denied him the best means of securing, Nevertheless, despite the fact that she is no longer able to speak, join ideas together or if not a cure, at least a kind of palliative: the possibility of recognition from society for Certainly a bit of all these, in a mixture of feelings, suffering, the desire to help which form sentences, or read and write, my everyday companion can still do some exercises the major contribution his work had made towards the Portuguese theatre. must always be there, in your heart, in your eyes, in the touch of your hands and in involving single words, joining the letters together so that they make sense, and she your thoughts. gains pleasure and stimulation from playing with her grandchildren. In other words, Atherosclerosis is a horrible condition both for the sufferer and the carer. The neural one way of treating Alzheimer’s (in cases like hers) is to keep the brain constantly losses it causes obliterate the personality and lead to the gradual destruction of the They say that the disease has no cure but that it can be treated, in small steps, with active. To do this, the patient must not be made aware of his or her condition (my intellectual, emotional and behavioural faculties. The nervous system creates defensive love! … wife would not understand the full extent of it anyway), the faculties which still remain strategies – like a system of concentric fortifications – to protect the remaining nucleus active must be stimulated and the difficulties which arise must be treated with the of intellectual functions, frequently at the expense of the demands of sociability. I believe this is true because the patients, as they are progressively attacked by this greatest possible understanding. terrible disease, without wishing to (and without even knowing), drag all those close to In my father’s case and until the curtain finally came down, the art of acting and the them down with them, whilst their friends and relatives themselves feel powerless to This is not easy for the person who is the patient’s constant carer. interaction between the actor and his masks, which he had practised professionally for prevent their loved one’s mental deterioration. over half a century, were his means of defence against the disease and, to a certain For me, it has been a constant challenge to my ability to suffer without letting my wife extent, against the outside world, which angered and ignored him. My everyday companion know that something is wrong.

The maker of theatre took care of my father. And the characters he had played over the I met her when she was 19, in the splendour of her youth and beauty, with her This means that she knows that she is ill, but doesn’t understand what illness she years – Poprishchin in ‘Diary of a Madman’, George in ‘Who’s Afraid of Virginia Wolf ?’, undisguisable desire to be noticed, to be seen and to be appreciated as a woman. has. Bernard Shaw in ‘Dear Liar’ and Weller in ‘The Gin Game’ – returned to defend his mind in its rebellion against the pettiness and ingratitude of a country which, in his opinion, She came from Brazil, ten years later, leaving behind her well-ordered life and her But what do my suffering and anguish matter compared with what is happening to her? was in a much more advanced state of sclerosis and amnesia than he was. entire family, to embark on the adventure of a marriage full of the unknown and an I try to make her laugh. I tell her the same story ten times over. I play with her. We uncertain future. go out for walks and drives in the car. I answer the same question as many times as I His death was his final act of rebellion and irreverence. The pathetic expression of have to and try not to show my irritation or annoyance. his revolt against the way he had been ostracised by almost everyone, especially the She made that choice at the age of 29 but, at that age, she was more aware of the mean professional class caught up in the vanity fair of politics and the public which had significance of the move, of the adventure and of the unknown quantity that was our Our daughters do the same. Our grandchildren don’t know. abandoned the theatre for the sofa and soap opera. future. But she came to stay, to get married to me and, together with me, to be the parent of three daughters … If her illness could be treated with love alone, she would be well on the way to recovery. He died without bowing to anyone, protected by his irascible and judgmental spirit. Unfortunately, I know that this is not true. But I keep hoping. And I will not give up We were not always happy because there was a lot of history and emotional baggage that hope. Without necessarily being aware of it, he never lost control of the bastion of integrity which gave rise to other longings and even to other men who pursued her with which many of his colleagues – today certainly more remembered than he is – sold out insensitive and morally dubious intentions. *Sports journalist cheaply to the powers that be and to the ‘dumb and submissive masses’ described by Guerra Junqueiro in 1896. What can I say? Life Portuguese style. But she resisted all those temptations and I too remained steadfast at her side. When the first signs of the disease appeared, five years Jacinto Ramos died on 4 November 2004, aged 87. ago now (she was 60), neither I nor anyone in the family thought it would be what we

123 122 Oana-Simina Mistreanu was born is medical staff. In spite of this, their parents did not support their choice to study The French lesson medicine and have even tried to convince them to give up. Cosmin wanted to be a in February 1988 in Romania. She doctor since childhood, curious and fascinated by they way in which his father seemed to be absorbed in this profession. In her turn, Andreea trained up to the end of her last studied at the University of Bucharest Headline: Andreea and Cosmin are two intern doctors who would like to school year to study economics in ASE. A couple of months before finishing high school emigrate. If they achieve their goal, there will be two empty spots: in the she realised that she could not solve certain mathematics exercises and therefore and helds a Bachelor Degree in hospitals where they are working, in their parents’ houses where they live refocused on medical studies. She passed the entry exam. Nine years later, both of Journalism. In 2009, Mistreanu was and in a country that never knew what to do with them. them claim without hesitation that they would make the same choice again if they had to. employed as contributing writer for t’s a Sunday in March, one of those deceptive days that seem to say spring has Iarrived, when the next day there could be heavy snow. A perfect day to go see Academic years were consuming, with days they had to stay in class between 8 o’clock the “Tabu” magazine. Currently, she a theatre play. A man calls to make a booking. A feminine voice replies: „Bonjour” in the morning and 8 o’clock in the evening. They had heavy course subjects they did works as editor for the daily business (Hello). „Bonjour, madame” (Good day, dear lady). He asks in French if there are still not really understand and professors that read the teaching material from books without seats available for the play État Critique. Only in 2 weeks time. The man hesitates. „Oh, explaining it. They were lucky to have well-meaning colleagues to study with, as well as domain “Wallstreet.ro” as well as associated editor j’ai de chance” (oh, I am lucky). The woman freezes for a couple of seconds and then playing a game of cards from time to time in the hospital. During their studies, both of starts laughing. „Ha, ha. Tu as pas de chance!” (Ha, ha, you are not lucky). The man them had the opportunity to travel to the US, to visit family friends. First Cosmin, who for the “Decat o Revista” magazine. Mistreanu also also laughs and, together with him, another 5-6 people who are in the same room. then convinced Andreea. They also went there together one summer, in the framework writes for the Romanian magazine “Esquire” and is National We are all taking French language classes, a small and mixed group, which includes of the work&trave, programme aimed at students. When they talk about America, an 11th grade pupil, a student who likes partying in Regie, a journalist and a former their eyes widen and their faces brighten. It was „sen-sa-tional”. Although they had employed as project manager for a fundraising health German language teacher. We are here to learn another foreign language or because low-qualified jobs in a hotel, America gave them a taste of freedom and confidence, we want to leave our country: to study at university or for a masters degree, or to the feeling they could reach as high as they want if they set their minds to it. With the campaign of the “Salveaza Vieti” association. work. money they earned at the hotel they had travelled and bought a suitcase of brand- winner name clothes in the sales. And (one has to mention) a family doctor in the States has Andreea and Cosmin, protagonists of the dialogue about theatre tickets, who have an income of around $10 000 a year. chosen to use only their first names in this text, are intern doctors. They learn French in order to be able to go and work in French-speaking countries, mainly France and When they came back, they had already decided: they would emigrate across the Belgium. Learning the language is the first obstacle they would like to cross off the list ocean. Because the US doesn’t recognise medical studies carried out in Romania, they and also the first step in a process that could include looking for scholarships, sending would have to pass three exams, so-called “steps”, that would cover the courses taken CVs to hospitals and professors abroad, and discussing options with recruitment in their 6 years of studies. Immediately after getting their degree, they started to agencies. They would thus join the 11,600 Romanian doctors who have asked for study for the first step – the part covering the pre-hospital first 3 years of studies. conformity certificates in order to be able to work in the EU, since Romania became a They photocopied American books and, as they studied them, they realised that they Member State in 2007. As well as the many other young people who are seeking the progressively found answers to lots of things that had remained unclear during their best option to leave the country. studies. In the American books, everything was simple, explained step by step. If, for example, from Romanian biochemistry books one had to learn several pages of formulae Away from the endless buzz of the TV that shapes each day, and the healthcare system that were not associated in a logical way with illnesses, in the American version there with operating tables that break down, rooms that become focal points for infections, was a single major formula from which everything derived. “We understood the use of doctors who accept bribes, patients who complain, other doctors who kill themselves all the formulae and of all the types of substances involved”, says Andreea. “While from and salaries that are going down, Andreea and Cosmin are focusing on their French our books we simply did not understand what were they used for. I needed to finish my lessons. They are part of a migration that started some time ago: Romanian doctors studies and start doing the steps in order to finally understand”. who leave a difficult and poor system aiming for safer and calmer places. Romania Andreea and Cosmin met in their first year at university and became a couple in their third. Both from Bucharest, they come from families where at least one of the parents

124 125 In the exam they were presented with clinical cases and they had to choose the best between several hundred and several thousands euro. Cosmin gives the example of should do surgery - some of them should also give prescriptions for glasses. This says doctor Florin Chirculescu, Head of the Thoracic Surgery Dept. with the University treatment for them – as compared with the Romanian exam for intern status – a an orthopaedics training in Hungary that he would have liked to attend and that would statement shocked her. She is afraid that, after 11 years of studying, she will end up Hospital Bucharest and President of Doctors Trade Union “Dr. Ion Cantacuzino”. The “wearing down” exam according to Cosmin, where one has to learn by heart whole have cost him €1 500, accommodation and travel included. Meaning his whole salary prescribing glasses. And she knows that this is a real possibility. she has colleagues that whole healthcare system is close to service interruption level. It is lacking bandages, books in order to know that breast cancer occurrence is 43.3 and not 43.6 per 100 for 6 months. have finished their studies and they do exactly this. It is just the fact that prescriptions dressings, gauze and, more important, antibiotics. As long as the hospital has debts, 000. for glasses can also be handled by opticians who, in contrast to a doctor, can also fix managers cannot buy things, it is illegal. As it is to buy as an individual and to use Doctors’ migration is a normal phenomenon explained by young people’s desire to the lenses into their frames. products from outside sources, from companies that the hospital has no contract with. After the first step, Andreea and Cosmin gave up. For the next exams, they would travel, explore and excel, says Academician Professor Doctor Constantin Popa, General Doctors have to choose between abiding by the law and leaving their patients to wait have had to go to the United States, probably several times. This would have entailed Director of the Institute for Cerebral-Vascular Diseases “Prof. Dr.Vlad Voiculescu” in Abroad, the intern programme foresees a number of surgical operations that each till funds enter the hospital’s accounts.. costs of around €10-15 000, without a sure result. They started as interns in Romania Bucharest. At 72, the professor is one of the heavyweights in the field of neurology doctor has to do so that, when he/she passes the relevant exam, he/she is able to – Andreea in the ophthalmology department and Cosmin in orthopaedics. They both in Romania, but for Andreea and Cosmin, who had courses with him, he is absolutely carry out all operations involved in the relevant field. Abroad you get explanations and At the end of May, TV stations reported the “unbelievable incident” involving an work in major hospitals in Bucharest. But they have not given up their idea of leaving. “fascinating”, a model professor teaching medical sciences. He brought to class rare you can see, you get to participate in operations, argue Andreea and Cosmin’s friends, operating table that had broken down with the patient on it, at the County Hospital “In the pre-intern period we said to ourselves if we try to do a good job, why should we cases of patients and they discussed them together. They could have stayed for hours acting as resident doctors somewhere in Europe. Why not here? Because, in their in Botosani. This is just one of the frequent “incidents” that are reported each night struggle to do it in a wretched system, where everyone defies you, does not show or to listen to his speeches, mixed with bits of culture. He tells that, during his studies and time, most of the doctors received no guidance and therefore do not want to teach the during TV news. There was another one, at CFR 2 Hospital, where two woman patients teach you, so that you cannot reach the level you would like, to become a good doctor, after, when he became a university professor in the ’80s, Romania was the destination young. Because they are afraid that intern doctors will take their place, patients and got infected while hospitalised. and everything is for a couple of bucks”, says Cosmin. “When you can leave and have for thousands of medicine students, coming from Bulgaria, Greece, Serbia, Albania, money - all directly proportional to the number of cases they are treating. “Each patient everything abroad. Education, salary, status, everything”. Germany or Israel. Young doctors should have the opportunity to travel and learn from for that matter is a potential client. He gives you something, a little or more, it does Thus we get to the third reason why Romanian doctors want to emigrate, according to the experience of different healthcare systems in order to come back to their country not matter. You gain something from him. And therefore they are afraid that you will the study by the Physicians College: social status. “This campaign continues to blame Andreea and Cosmin have a monthly income of a little over 1,000 lei, after 6 years of and be good specialists. But the situation has become “acute” in the last couple of take their earnings, that you might be the competition. And people refuse to give up doctors as a group, to discuss malpractice issues no matter what had happened”, says studies and 2 years spent as interns. Although they are almost 30, they still live with years: they leave forced by the economic situation, without any interest in coming the secrets of the trade”, says Cosmin. “As my boss was saying: hey, you should focus Vasile Astărăstoae. “Nobody takes the responsibility to say yes, we did not give enough and are helped by their parents. They have reached the age when, as do their friends, back. “For a doctor, the economic part is not the most important”, says Popa. “But how and learn and leave for other countries, where you know the salary will be the same, funds to CFR 2 Hospital, because we could not. No, you saw: conclusions were that they think about starting a family. Those who take this decision are in the bizarre can one reach that higher level, of intellectual, medical and cultural height, in a country this month and the next, and you are not depending on anyone, and you don’t hope doctors had not paid enough attention”. The Sword of Damocles hangs by a thread situation of having a wedding although still being supported by their parents, while the where one has to live with only 9 million per month (n.n. 900 new lei)?” someone will give you some money if they don’t want to”. over doctors’ heads, meaning malpractice accusations, the fact that public opinion people invited, former university colleagues, don’t have enough money to buy them starts from the premise that they were guilty before the cases are investigated, makes wedding presents. The second reason why doctors want to leave is the lack of career prospects. They Compared to Andreea, Cosmin considers himself lucky. He has a good boss and doctors emigrate to countries where they are respected. cannot plan for the long-term as regards schools or programmes to follow in order colleagues that he’s on friendly terms with. He is allowed to participate in surgery “We are 28-years olds who should have had a family, or kids. With 20 millions per to specialise, or even as regards their job. A resident of Falticeni who has finished - orthopaedics is one of the major departments and operations are done by teams 92% of doctors interviewed for the study on migration argued that physicians, in month (n.n. 2 000 new lei) you can’t cover household expenses and raise a kid. Well, medical studies cannot aim to become, in 10 years time, head of section in a hospital and they need him. A surgeon has in his blood the need to cut, open, see, cure, sew general, can only lose given the mass-media approach. Cosmin talks about the case of you can manage, but you will have living standards that do not correspond to your in his town because he/she does not know if the hospital will still exist at that time, together. However, an intern doctor is the “last link” in a hospital, surely less important a fellow doctor from Foisor Hospital, filmed by Realitatea TV in spring 2009. They asked education and cultural level. You are aware that you don’t belong there”, says Cosmin. says the President of the Physicians College, professor doctor Vasile Astărăstoae. The than the chief medical assistant, who is the master puppeteer and with who you need him what surgery cost and the doctor, although he had initially refused to say (arguing According to participants in a study carried out by the College of Physicians, poor healthcare system is extremely politicised, promotions are not done on the basis of to be on good terms in order to obtain some bandages from her personal reserve he was working in a public hospital) started to list them: €100 for the anaesthetist, salaries is the main reason for emigrating; the study also shows that 60% of Romanian one’s merits, while managers are nominated by politicians. If you do not get along with when the hospital’s runs out. “I am the lowest in the chain of command: they respect between €500 and 1 000 for his boss. The doctor was a good professional, specialised doctors wish to leave the country. your hierarchical superior, you do not have the freedom to do your job. “For example the professor, all the other doctors but the interns, my colleagues. And if they want to in spinal surgery in Israel. The event had left him traumatised, as the director of the a well-known doctor who would like to do 5 surgical operations. Then, the manager annoy and angry you, even the medical assistant who’s in charge of one ward can do hospital had started to ask him questions, live, on TV. He chose to leave the country. In the European Union, salaries for doctors are, on average, 10 times higher than comes in and says no, you will do only 2 because this is what I want”, says Astărăstoae. it”. “Why? Because you cannot live otherwise and everybody does the same thing. Because in Romania. At the International Medical Careers Fair, which took place in March in Having had their fill of instability and psychological abuse, doctors choose to leave for this is the system and this is how we live”. The doctor in question is now in the UK, Bucharest, recruitment agencies and hospitals in Europe advertised job opportunities foreign countries, where they know that during their contract they have stability and The part about hospital reserves has become increasingly serious in recent times. Cosmin earning over £7 000 per month. from €2 000-3 000 /month, for junior doctors and fresh graduates, in Germany, to no restriction in doing their job. says that for the last couple of months he has been asking the patients themselves to €10,000-12,000 /month, for senior doctors, in the UK and Scandinavian countries. buy bandages, gloves, medicinal alcohol. Besides the very poor technical infrastructure On May 6th, President Traian Băsescu announced that salaries in the budgetary sector In her two years as an intern in the ophthalmology department, Andreea has never in hospitals, doctors also start lacking the basic instruments necessary to do their job. will go down 25%, in order to reach the target figure for the budgetary deficit that The salary is directly linked to the level of professional training a doctor has. In order carried out any surgery. In the first six months, she never even entered an operating Hospital accounts, even those of major hospitals in Bucharest, are emptying quickly. was fixed by the International Monetary Fund. The measure will include doctors. For to continue their education and stay in touch with developments in their field, doctors theatre. She spent her whole day filling in patients’ medical records. Now, she assists In May, the University Hospital of Bucharest had only 12 RON left in its accounts and Andreea and Cosmin, this will mean incomes of a little over 800 lei per month, meaning should frequently participate in specialised training courses, conferences and expert in operations, but only in order to hand the doctor the necessary instruments and debts worth tens of millions. Because they were lacking sutures, they used a €500 less than they were making in their first year as interns. exchanges. A specialised training course abroad or participation in a congress costs moisten the cornea. Once she heard a doctor saying that not all ophthalmologists donation from a patient. Romanian hospitals have a cumulated debt worth €160 m,

126 127 They feel this money is being taken from them without a convincing reason, and what as last year”, says Cosmin. “I have moments when I am so sick of people, patients and NGOs from UK, Germany, France and Ireland. Before them are crowds of young Another leaving ticket can come from professors with collaborators abroad. Professor is more, it is money they can ill afford to lose . and everything. In those moments, empathy goes out the window. And you need it. people awaiting their turn to ask questions or listening to the representatives talking Constantin Popa is amongst those who young doctors ask for recommendations. He Before, I did not cry over a patient, but if I was told that we do not have bandages, in Romanian or in English with a British accent. The ones that have managed to get sends them to France or Germany if they don’t already have work contracts with The Physicians College issued a statement asking the government not to cut salaries I always thought “come on, the poor guy hasn’t come here for pleasure, we need to a form are filling it in, either on their knees or by holding the paper against the wall. hospitals in Romania. What concerns the professor is that intern doctors are in general of doctors in the public system, as most of them were paid from funds obtained help him somehow”. Now, if they tell me we don’t have bandages, it’s a fact, I can’t Without the white jackets, they look just like students at the usual jobs fair. After confused. They don’t get informed, they don’t know what they would want to do. following performance of medical services and not transferred from the budget. It help anyone”. getting an overview, Cosmin stops at the stand where Irish representatives are offering “They want to get a pill from you and with it to go abroad and get hired. This is not how asked physicians that were MPs to respect their profession before the party they are intern doctors salaries of up to €60 000 per year. He fills in the form to be included in it works”. To all the reasons that interns have for leaving add the call of the Western part of. But we get here to a wider discussion. In 2010, the allocation for the healthcare “It is difficult to start and I don’t know where to start. I am afraid that time is running the database and moves on. world, of America, with all its promises. The professor himself has been abroad tens system was 3.6% of GDP, putting Romania last amongst EU Member States in terms out so quickly, I cannot believe it”, says Andreea and takes a sip of water, as if gathering of times, for different lengths of time. He taught medicine in Paris, in the ‘70s. Several of healthcare financing. Moreover, because in the last quarter of 2009, the system had courage. It’s evening and we are at a restaurant in downtown Bucharest. Cosmin has There are a lot of companies from Germany, but he doesn’t speak German and has no times he was asked to stay on. He chose not to, because he felt at that time that no functioned using a forward credit from the 2010 budget, actual financing totalled only left to make a phone call. A little earlier, they had argued, because Cosmin had told us patience to start learning another foreign language. At another stand he fills in a form matter how good he was, he would never end up managing major research facilities. 2.3-2.6% of GDP, only enough to cover minimum expenditures up to 1 July 2010. that a colleague, who already works in Belgium, had promised to bring him over too, for the UK, Ireland and the Middle East. Then he joins a group of doctors gathered starting next year. He had said that, once he was in Belgium, he could recommend around a Romanian woman, who fills in a table with their contact data, with a view “They will hit a wall when they reach 40-45 years old, as they realise they are ranked Why didn’t Romania grant more funds to the healthcare system – at least during the Andreea to another doctor and thus she could join him. Andreea got angry: “In which to getting jobs in the UK and France. One step behind the group, dressed in a suit, second or even third. Let’s say there are 2 000-2 500 who are leaving, only 200-250 years of economic growth? In a discussion we had with a political representative, we quality could you, an orthopaedics doctor, recommend me to an ophthalmologist?” with his hands behind his back, leaning forward to hear what it is said, stands a white- will have a career”, says Popa. “I have a colleague who left, an exceptional person, as received quite a cynical explanation. Firstly, no major reform of the healthcare system haired man. He is 57, an economist, who has come to look for a job for his wife, a good as me, or even better. He went to France. Now he has just retired. He was never can be carried out until 2012, when elections are scheduled, because people have a The problem is that, compared to orthopaedics – a more demanding field less popular doctor specialised in emergency medicine in Bucharest. At 55, his wife works one and promoted because he came from another country”. short memory. Secondly, raising doctors’ salaries would not increase decision-makers with students in Western Europe – ophthalmology is very popular, so there are fewer a half shifts and earns €600 per month. They want to go to the UK “because they can popularity as, for example, building a highway would. Doctors have quite a negative jobs available for foreigners. Which means that, as compared to Cosmin who already no longer live here” and because they want to offer a better future to their 5-year-old “We will just be some emigrants willing to work for lower salaries or in sectors less image and improving their situation would not attract many votes. Finally, even with has a prospect for leaving, Andreea would have to start from zero and she does not son. interesting for French people”, writes a young doctor who prefers to remain anonymous, an increase in salaries, the issue of corruption in the healthcare system would not know where to begin. While until now Cosmin was the one insisting on leaving, now in an e-mail to me. She left for France in 2008 because she wanted a change, to see be solved given that, although the judges have comfortable incomes, 90% of trials she is the one feeling that she has no future in her country. But she delays writing her The older and more specialised they are, the lower are the chances Romanian doctors and learn new things. She was motivated by another friend, also a doctor, who had left in Romania are “biased”. The healthcare system will take 20-25 years to change by CV and motivation letter because she does not know what she could to do with them. have to find a job abroad, explains Nick Sljivic, owner of the recruiting firmIMS 6 months earlier. She had started a lungs-related diseases / respiratory insufficiency itself. If she at least had a list of hospitals in France that might be a starting point. Usually, Recruitment, from the UK, that has been placing Romanian doctors abroad since 2002. internship and was lucky to have kind bosses who taught her a lot. However, the first Romanian doctors leave the country based on the recommendation of a professor who For flexible young people, who look for entry-level positions, chances are “huge”. All 2 months in France were awful, with nervous breakdowns and insomnia. She gradually The fact that President Traian Băsescu stated in public that 40% of diagnoses given collaborates with a professor from another country, or through recruitment agencies or they have to do is to obtain the conformity certificate from the Health Ministry and, got used to the language, hospital customs and the people. In the hospital, they by Romanian doctors are wrong, is not exactly a vote of confidence. And the recent simply by sending CVs to hospitals and doctors. for the UK, join the British College of Physicians. Once they have joined, recruitment helped her the first month, but then left her to her own devices. Because she was left salaries cuts send the following message, according to Vasile Astărăstoae: “Pack your companies can start looking for jobs. To date, unofficial data suggest 6 000 pre- to take decisions, she had started to gain more confidence and take responsibility for things and leave, as we don’t need you”. In the long term the Romanian healthcare They are well received, most of the time, because they are needed. The EU has contracts have been signed by Romanian doctors. But most of the participants at the her work. The plan was to come back this May, but seeing what was happening in the system will end up like Africa: there will be some university centres with hospitals that approved a directive on working time for doctors – it foresees that they are supposed fair only come to get information, they have not taken a step towards leaving the country, that her former colleagues are now unemployed and struggling to make ends have enough doctors and as the for the rest – barren ground. to be on call once a week, followed by a 24-hr rest period. The directive has created country. Everything can be easily solved if they know the language of the country meet, she decided to postpone her return. “I still hope that I will come back, I miss my problems for the Member States, which have figured out that they would need around where they want to work. According to the Brit’s experience, the younger Romanian family and the friends back home”, she says at the end of the message. Of the interns in the section where Cosmin works, 4-5 left at the beginning of the year, 150 000 doctors in the next 4-5 years (Romania was granted a derogation period of 2 doctors are, the better they master foreign languages. to be followed by 2 more in the autumn. The only remaining Romanian interns will be years). Only around 70-80 000 doctors will graduate from medical studies during that There will certainly be a phenomenon of doctors coming back, argues Constantin Popa. Cosmin and a colleague, joined by young doctors from Republic of Moldova and Syria. time and EU Member States need double that number. Romanians are favoured as they But people aged 40, 50 or even 60 years who visit the stands don’t seen to have heard The need to return will be felt at the latest when they reach that threshold of 40-45 A potential scenario for the future of medicine in Romania would involve an eclectic are good and adapt quickly. Currently, in France, around 60% of foreign doctors are Sljivic’s theory. At his stand, a little before of our discussion, a man was asking the years. It would be good if by that time the Romanian healthcare system offers them staff, with doctors coming from China or Arab countries, if they decide not to go further Romanian. Romanian representative what “UK” stands for. The woman had put on a sympathetic better opportunities. West. Or, simply, insufficient doctors. A permanent strike through absence. smile. “If you don’t know English you cannot go there”. The man had looked at her, It’s the first Saturday in June. A little after 11 o’clock, Cosmin leaves the hospital confused. “Maybe you know French, or German. You decide which language you know Dentist Vlad Nicolau came back to Romania in 1998, after the elections were won by Until then, Andreea and Cosmin argue that the government decision strengthens their to go to Sala Palatului, where there is an international medical careers fair. Andreea and then you choose”. He left without getting his answer about what “UK” meant. At Emil Constantinescu and the Romanian Democrat Convention. He believed the new resolve to leave the country. “Because here it will never be good”. What saddens them could not come as, from April, she has taken a second job, part time, in an optics 55, from Focşani, he was looking for a position as an ophthalmologist in Europe. I government would be able to change things. He had lived in Germany during the ’70s is that recent troubles, together with the situation in hospitals, cuts down the pleasure cabinet where she also works on Saturdays. On the first floor of the grey building, in asked him if he spoke a foreign language. “A little. But if I know I will be leaving, I will and ’80s, and again for another 3 years from 1995. He argues that you can get used of doing their job. “I notice that we no longer have the same impetus and enthusiasm the narrow space between the wall and the railing, are the stands of recruiting firms start intensive courses”. to living in a foreign country only if you have little or no cultural interest. Because Hans

128 129 will never laugh at your jokes and you will never have a discussion with him closer than that between two strangers. He was irritated by the strict requirements imposed by insurance companies and by the impersonal relations between doctors and patients.

Andreea and Cosmin are aware of all the unpleasant things they will have to face if they emigrate. But they believe that material wellbeing tones them down. “You are not leaving a satisfactory situation for a better one. You are leaving from the bottom, from a hunger situation”, says Cosmin. However, he would like to stay another “training” year here, in a system that has its advantages, among them a more direct contact with patients. But, no matter how things go, he does not want to leave without Andreea. “If one of us has to go and the other to stay, I don’t know, we will probably decide to stay so that we stay together”, he says when Andreea is not around. “When you leave and say that the other one will follow later, something breaks. We have always thought about leaving together”. In September, they want to go to Paris, to an international congress in the field of ophthalmology, where Andreea will try to contact professors and doctors who could hire her. Until then, they continue to attend French classes, a language that starts being more and more familiar. And they trust that everything will be ok. Parce qu’ils ont de chance (Because they are lucky).

Published in: Esquire România, July-August 2010 issue

131 130 Alžbeta Linhardová started her career Emília Juhásová has had dialysis more than a thousand times – that’s more was very difficult to learn to live with this illness. Turning away a plateful of than 2 000 injections mum’s beef soup or giving up my favourite watermelon was torture. But if I as an accountant in Slovak television wanted to live, and I did – when they found the illness I was only 42 – I had after graduating from the College of Eight years wait for a full life to fight. With the illness and with myself...” Economics in Košice. In 1981 she Anyone who has ever had dialysis knows that one session takes about 5 hours. Milka obody was seriously ill in the family, and so Emília Juhásová from Košice never had to undergo it three times a week. Sometimes a patient is better afterwards, at started working as a secretary for the Nworried that she would suddenly become a patient of the Louis Pasteur Teaching other times not so good. During dialysis, attention must be paid to the fistula, the place Hospital. Every morning she got up for work normally and went home in the afternoon where two needles are inserted at once. It needs to be kept clean and is frequently newspaper Košický Večer and later on without incident, except for occasional clashes with the boss. She considered spring wiped. So that the constant travelling to the hospital and back didn’t drive her mad, as a journalist covering current affairs. and autumn attacks of flu or tonsillitis, when every third person gets sick, as normal Milka decided not to shut herself away, but rather to be among people. She spent some enough. But to be sure she was taking no risks with her health, she consulted doctors. time doing yoga. Later, to keep her brain active, she began attending the University of Since 2007she has been working as However, expert examination revealed that, like it or not, she had to go immediately to the Third Age, earning three diplomas in three different fields. It started to look as if, the nephrology clinic, because she had kidney problems. Seemingly unnaturally, they despite the serious illness, she would manage to look at everything in a positive light. a full-time secretary for the Slovak Syndicate of had shrivelled and were functioning less and less. But luck was not on her side. In 2002, the year she was going to celebrate her fiftieth Journalists and as a freelance journalist. birthday, her mother died suddenly. She had been a kindred spirit and support during She had no idea what was in store for her. her suffering and died in a room just a few doors away from the one Milka was in for National dialysis. “It is difficult to describe a similar situation and I cannot reconcile “If I lost just one kidney, it wouldn’t be so bad; you can survive with one myself with it. I literally fell on my knees and worries began to dog me without too much trouble. But both of mine failed...” Milka recalls a time more – How would I keep living? I went for dialysis for eight years, yet I just felt than 15 years ago. She knew what kidneys are for, but simply could not imagine what I was getting weaker and weaker. Does anyone know how long I’ll still be was in store for her in the coming weeks and months. She was dimly aware that it here? Will I see any changes which will improve my health in any way? I’ve winner would be no picnic, but didn’t lose her optimism. Since she felt relatively well, talk of had dialysis more than a thousand times – that’s more than 2 000 injections giving up work and getting a disability pension seemed overblown. She fully believed without significant improvement! Will I manage to get a transplant?”A friend that she would go to the nephrology clinic a few times only, have a few examinations, tried to stem the flow of these negative thoughts. As a birthday wish for Milka, she which she would survive, and if she took her medicine, everything would return to wished the doctors would finally find a kidney which her body would accept. normal. She quickly realised how wrong she was. She started to become weak and her physical condition went downhill. Then came a day when she had to take to a Then hope arrived hospital bed, because her body gave up functioning properly. This was July 1994 and the situation became more serious – dialysis. “If there were no doctors or nurses Milka smiled at these words. After eight years of waiting for a suitable kidney without handling patients professionally and with great humanity, I don’t know how success, why should anything suddenly change? About a month after the birthday I would have coped with this new sad reality. Probably with great difficulty, celebration she went to the High Tatras region for treatment. She hadn’t even because learning to live like a sick person overnight is very difficult.” managed to unpack her suitcase when her mobile phone rang and she heard the voice of Dr. Jaroslava Rosenbergera, PhD.: “Mrs Juhásová, we have a kidney for you. She had to follow a dietary regime to watch her weight, since each increase has a Do you want to have a transplant? “She didn’t hesitate for a second, packed her negative impact. She had to limit her intake of salt, protein, sugar, fish, fruit and suitcase and hurried to Košice. One of her friends from dialysis picked her up from the cheese. She was only allowed to have a little of everything. If she failed to follow this, station and took her to the hospital where she was finally in the hands of the doctors. problems would start immediately – loss of coordination, numb fingertips and lethargy. Before they began the operation, she had a further dialysis followed by a conversation Equally important was her drinking regime, which was complicated since she could not with the senior consultant Róbert Roland, who explained to her that everything could urinate unassisted. Therefore she could drink no more than 8 decilitres of fluid daily go well... but also badly. “It probably sounds mad, but when I was signing the and everything was calculated – soup, apples, yoghurt... “While learning to follow consent to the operation I told the senior consultant not to worry about the Slovakia the instructions of doctors and nurses, who knew why some things were result because I was convinced that everything would turn out well”. allowed and others forbidden, I was in hospital more often than at home. It

132 133 Hope of recovery and resoluteness about the transplant accompanied her into the does not deny that she has not always done what she should. Since for years as a operation theatre, where Dr. Blažejová and a group of surgeons were waiting... sick person she could eat very little and sometimes things she didn’t like, since the transplant she has began cooking and baking with fervour – as if she wants to catch up When she came round she could not really feel anything, she just perceived that there with what she had missed before. As a result she has quickly put on weight. She had were tubes and stands all around her. “Maybe there was some pain, but I was hoped to gradually reduce her weight, but it’s easier to gain than to lose. Any woman overwhelmed by the joy from the transplant. Finally I’d lived to see it. What who tries to improve the curves of her body knows that. She tries to maintain her would happen now? Would my body accept the new organ? The doctors said weight rather than terrorise herself with diets. She hasn’t forgotten about her drinking that the first days after the kidneys start to function are the worst both for regime, so that during checkups Dr. Ľuboslav Beňa, PhD., who has been treating her patients and for them. I wished for it to turn out well and for a little luck, since the transplant, does not have to scold her. “Since the operation I’m under since I had waited so long for a life change. I know some patients are much constant medical supervision, I take medicine to reduce my immunity so worse off, but a sick person is an egoist. I met people going for dialysis like that the body does not react to the transplant and destroy it. I have to me and one later got a transplant in less than three months. They found a watch my health so I don’t repeat the situation before 1994. That would be donor with kidneys with parameters matching her body and that was that. a catastrophe.” Others did wait longer – half a year, a year, two years, five years, but I waited eight!” The Christmas holiday season is coming. It’s a time when families try to be together. Milka Juhásová will spend Christmas at home. Though alone, since her parents have Milka still recalls the first days after the operation well, when improvements occurred already passed away and she didn’t manage to have her own family, it will only be from hour to hour. After three days she felt that with the new kidneys her body had apparent solitude. She keeps in contact with the nurses and doctors who helped her new energy, she was stronger and her appetite for food had increased. It was only fulfil her dream – they returned her health and sense of life. worse with drinking. Until then, she could only drink 8 decilitres of fluid daily as She divulges that people who go for dialysis dream of what they would like to experience already mentioned and she couldn’t stand watching people drinking with zest and even after transplantation. Her dream was to visit Sweden. She has fulfilled it. Since her advertisements for drinks annoyed her. Now the order of the day was drink, drink and life change, she has significantly helped others, working as a volunteer in the local drink. “It’s easy to say, but try forcing yourself to drink 4 to 5 litres of fluid Košice and national Society of Dialysis and Transplantation Patients, their Family and every day...! The desire to be fit was a powerful drive for Mrs Juhásová and so she Friends. followed the instructions of doctors and nurses to the letter. It made sense – she was so well after the operation that she left the hospital after two weeks. She did have to “We have 150 members in Košice alone. What is unbelievable is that kidneys wear a mask over her nose and mouth, but that was the least of her problems at that of all age-groups can be affected. This sickness affects the middle-aged, time. Similarly, she couldn’t have visitors at the start, so that she was not inadvertently seniors and three year-old children.” That is the insidious nature of the sickness, infected with anything. according to Milka. The illness can be inherited or break out unexpectedly and can literally knock a person off their feet. “Thanks to an unknown donor I was able It’s great to be healthy to get up and live again after 8 years – a good, happy and content life. Life is beautiful as the poets and lovers and I myself say, because I can compare Milka will never meet the kidney donor. Patients are not told the names by doctors. how it was before and how I feel now. That is really the best present under But her kidney does have a name. No birth certificate, but so much the better. “It my Christmas tree since 2002...” Košice’s Emília Juhásová finishes her tale with an is customary at the dialysis centre, which is today officially called the uncommon glint in her eyes. Nefrologické a dialyzačné centrum Fresenius Košice, for the patient to give his or her transplanted organ a name. I named “my” kidney Bohuslava. And since 4 July 2002 we’ve celebrated every year because my new life started then and since then, figuratively speaking, I can jump over hurdles... Now I recall that I used to be able to eat half a tomato at most. Today I can eat two or three and I am perfectly okay – I’m not worried anymore. I can consume everything, my kidney works like clockwork. Although I don’t have to, I try to limit my meat intake and rather concentrate on vegetables, but...” She

135 134 Petra Mlakar was born in June 1978 Hospices – Dying with dignity one’s nearest and dearest has an important role to play in this transformation and the search for inner harmony. This is, along with providing relief for physical suffering and in Jesenice, Slovenia. She studied a comfortable environment, our main objective.’

journalism in Ljubljana. Since 2004, Leading up to death Although the association has been in existence for 15 years, it is only now that the Mlakar has been working for the first hospice in Slovenia has come about, and Žargi points out that they have had to ow do you want to die? The question shocks us, even though the same end awaits overcome a great many obstacles. ‘We are delighted that the City of Ljubljana has built national newspaper “Dnevnik”. Being mother of Hus all – death. All of us want it to be ‘beautiful’; that said, we would rather say it and leased it to us for this vital activity. We are expecting the full cooperation from nothing than something about death, about the period leading up to death, and we the authorities in future as well.’ two children she decided to write a funny novel on chase it from our thoughts. This is rooted in our culture, say the experts. Those that motherhood called “Glitter” that was published in work with the dying, however, say that the period before death can be an extremely Death is not spoken of aloud rich one, perhaps even the most beautiful time of one’s life – a conduit for what we’ve spring 2010. found out about the meaning of life, existence, relationships and all the other important A number of sociologists such as Giddens, Glasser and Strauss have noted the gradual things. What accompanies us then is something we’ve prepared for all our lives. disappearance of death from public life and its concealment within the realm of the private. ‘Death is not spoken of aloud. Discussions about natural death have moved Where your final moments are comfortable into the private sphere,’ write Professor Karmen Erjavec and Petra Thaler from the Faculty of Social Sciences in their study of the representation of death in the media. National Having a high quality of life as we near our end is becoming an ever more important They go on to say that as death has become a concealed and private experience, the value in Slovenia; but without the conditions in place, this need cannot be satisfied. need to represent it in the public sphere, in the media, has been renewed. Slovenia’s first hospice institution will offer all-round care to nine dying and terminally ill patients. The Slovenian Hospice Association says it will be a ‘home from home, with American anthropologist Joan Halifax, who gave a lecture in Slovenia on the wisdom close attention and a sympathetic approach to the terminally ill whose life is coming to of existence, has noted in her work it is people who die in hospital who, above all, are winner an end.’ The hospice was built in Ljubljana, with construction financed by the City of being pushed to one side. ‘In the United States, dying in hospital constitutes a defeat,’ Ljubljana’s housing fund. The association is gradually furnishing and equipping it. she says. According to health sociologist Dr Majda Pahor from the Ljubljana Faculty of Medicine, Slovenes also display this ‘modern’ attitude to death, denying it and pushing Why will this institution be so special? The association explains that the single-bedded it out of everyday life. ‘This is probably connected with the low level of reflection on life rooms will be equipped with electric beds and anti-bedsore mattresses, while the living in general. If one thinks about life, one also thinks about death and the meaning of life area will house a dining room where those who are able and wish to do so can meet in relation to death, however we understand it. Resistance to thinking and those that and chat, although there will also be a ‘quiet room’ where patients can gather their think, to curiosity and to asking questions is fairly widespread in Slovenia.’ thoughts – something which the dying do occasionally require. The big transitions in life, like birth and death, are ritualised, says Pahor, and those According to association president Tatjana Žargi, the institution will continue the hospice directly involved in them often have the decision taken away from them on just how tradition, which aims to put a human face on one’s farewell to life. ‘Coming to terms this transition should proceed. ‘In some way, we have accepted that we cannot change with mortality is an indelible part of the circle of life; in our society, we have loaded it anything. We just wait for it to pass.’ Žargi points out that birth and death are the only with so many prejudices. We want patients to be treated as people and for them to constants in human life. ‘Experience teaches us that we can prepare for both, where have the opportunity, despite the restrictions that illness places on them, to live fully to each of us are responsible for ourselves – and here we always come up against the the very end, surrounded by their relatives and by professionals and volunteers.’ They burden of prejudice.’ want to provide the terminally ill with space and conditions in which their physical, emotional, social and spiritual needs are met. Are we Slovenes prepared for death when we realise it is close? For Pahor, it is thinking and talking about dying, and knowledge of and information on it, that can remove Žargi points out that a supportive environment, with compassionate staff close at the fear. ‘Just as the process of birth is taught in schools, the same could be done Slovenia hand and the involvement of a patient’s loved ones, can create the conditions for for dying,’ she believes. Happily, people are not now dying until much older; this is, a personal transformation in the process of dying. ‘Orderly and settled contact with according to Pahor, easier for us to accept than premature and unnecessary death.

136 137 ‘There would also be considerably less fear if there were greater confidence that engage in a complex way with the position in which they find themselves. event of physical or mental incapacity. At the same time, they can also indicate other ‘Those that have built an inner strength will go as close as possible to their end with healthcare and social institutions would relieve suffering and enable people to have a The need for spirituality is considerable and to a person in a physically debilitated wishes or instructions regarding their death, the attendant rituals and their funeral.’ their eyes open.’ more dignified end. Alongside the current erosion of care, people are becoming more state, these insights constitute a guide, says Lunder. The person loses the various In Lunder’s opinion, the main advantage of a death plan is that people are able to and more concerned about how they will live out their final months and years of life.’ roles they had in life – family, social and even simply functional. For the dying, the work with their loved ones and healthcare staff, and therefore have control over what Euthanasia is still illegal in Slovenia Most people these days die after a relatively long period of decline, during which they whole meaning of existence and of consciousness narrows down into an existential or follows. Those that work in palliative care invite the individual and their loved ones to require the assistance of relatives and friends, as well as trained professionals from a spiritual experience of oneself. present their values and expectations, on the basis of which they draw up the plan When thinking about dying, many have cause to reflect on euthanasia. ‘Euthanasia variety of fields,’ says Pahor. together. and assisted suicide are criminal offences in Slovenia,’ says Pahor. ‘I personally believe We build up to death all our lives that euthanasia would be unnecessary if it were possible to provide every individual But, she points out, changes are already in evidence. ‘I’m responsible for overseeing The right choices lead to inner strength with excellent palliative care. Due consideration also needs to be paid to the culture, the education of healthcare staff; until recently, this education barely addressed the It is characteristic of our society that it emphasises that part of an active life involves which in Slovenia is largely imbued with the conviction that life is a gift that can only issue of palliative care. But palliative care modules – although unfortunately still looking at the world around you; however, this can mean that reflection and self- She notes that patients are prepared to different degrees and in different ways to plan be taken away by the one who gave it.’ As Pahor adds, in Holland, for example, they optional – are included in healthcare and medical study programmes, and the number awareness are given less importance. Lunder believes that this does not help us in for the time when their illness progresses. Some favour short-term steps, not wanting think differently – each person has the right to decide on their own life. She goes on of supplementary training courses for healthcare employees is increasing.’ death. ‘At the end we encounter ourselves. Those people who have done this in their to see the whole picture; but there are also many that have an inner strength to face to say: ‘I will never be in favour of introducing euthanasia as a form of “saving” on lives more frequently, and who see a certain value in this, experience this time of their all the particulars of this period of their lives. ‘This life strength increases if the right palliative care.’ Three wishes of the dying life in a more peaceful and reconciled, in touch with events, with fewer negatives and choices are made. In life we are perpetually at a crossroads. Usually a shortcut leads, problems.’ for example, to a short-term feeling, but takes a little portion of pride and dignity with Describing the work of the hospice, Žargi says ‘for us it’s important that we are always According to Pahor, no research exists into how people die in Slovenia. ‘Sample studies it, because we’re not using all our potential. The other path is usually harder in the on the side of the person, as a patients’ champion, and that we try to find the solutions probably exist, but we are unaware of them,’ she says. Around 18,000 people die in Pain is far from being the biggest problem when one is dying, says Lunder, although short term but in the long term yields greater investment and realised potential. This most suitable for them – solutions that they themselves and their loved one are perhaps Slovenia every year, 60 to 80 per cent of them in hospital. Despite the fact that we are physical problems must be properly relieved as a matter of priority. In today’s society, second path is a richer one and gives people additional strength,’ she explains. unaware of.’ ‘One of the basic principles of our association is that we don’t try to have unable to rely on proper figures, those that work with the dying can provide important we are unprepared for and do not devote enough attention to what can, among other an effect on extending or shortening life. It does happen, in practice, that a patient insights. ‘Dying can be a noble and sacred event, but we have to try hard to make it things, lead to strongly pronounced psychological agitation at the end of one’s life. ‘We The path that a person has chosen in their life and what they chose to take with asks us to help him die immediately,’ she says. But closer inspection of the reasons happen that way. A beautiful death is probably the wish of all of us,’ says Žargi. In her have to realise that people build towards dying every moment of their lives.’ them is, according to Lunder, very clear as they reach the end. Those that devote less behind such requests usually finds that the patient is facing physical suffering, or experience, they want to depart surrounded by their nearest and dearest at home. strength to facing up to their situation try to help themselves with short-term goals feels a burden to loved ones and society, abandoned by everyone. ‘This presents an ‘Sadly, estrangement and a lack of communication implants in many the feeling that Being with people at this time is, according to Lunder, a great gift and one society – for example, how they see the time before the arrival of a loved one from abroad. opportunity for assistance and solutions that negate the desire for euthanasia.’ Žargi they’re a burden to those closest to them. These people end up opting to die in hospital places too little value on. People understand what everything in life meant, what it was Then they plan ahead with the help of their nearest and dearest. believes that these issues need to be tackled by society, as well as by professional or old people’s home.’ worth, where its meaning lay – the individual and the family, and what and how much circles, more frequently and extensively, since it is not clear to many people what they meant to each other. ‘No value can be placed on these moments. Those of us who Palliative care – support and help in planning euthanasia really means. ‘As medicine has developed, we have been able to give people great assurances that witness them find them deeply fulfilling. When I walk around town and look at people we know how to overcome many situations and cure many illnesses. At some point, – everything has a different value for me, I see everything through different eyes. Lunder emphasises that one important component of palliative care is the communication Euthanasia – a matter for the law? however, even medicine is unable to help,’ says Dr Urška Lunder, head of palliative care This gives me a wider space for acceptance and understanding, for a compassionate that directs the extremely difficult process of dying. ‘This is a time of change for which at the University Clinic for Pulmonary and Allergic Diseases at Golnik. Dying is a natural approach to what goes on. And this strengthens my inner peace.’ This is how Lunder we are not prepared, and a person does not have control over anything. Sometimes ‘Euthanasia and suicide with medical assistance are, in the opinion of the National Medical phenomenon that awaits all of us; we therefore understand that people do not want describes living with the dying. someone will think that every step they take will be the wrong one. Self-confidence Ethics Committee, unacceptable. The committee bases its position on experiences in aggressive procedures in these circumstances. In most cases, the wishes of the dying can be very low at this juncture; the person therefore needs support, they need all the Holland, where medical errors as well as abuse are frequent and unavoidable,’ notes the are similar: to be at home, to be free of pain so that they are able to have the best Make a death plan possibilities highlighted and they need help in planning their goals.’ committee president Professor Jože Trontelj. He adds that there are cases of mistaken possible quality of life in the time remaining to them, and to be surrounded by their diagnoses as well as the killing of patients without their consent. loved ones. ‘These three things are common to the majority, regardless of their way of Those that work with the dying recommend that people give some consideration to The disruptive symptoms also need to be very precisely relieved, since the patient is life or level of education,’ says Lunder. how they wish to live as they come to the end. ‘We run a programme called “Saying in very fragile at this time, notes Lunder. They might have difficulties taking the medicine ‘In particular, the committee believes that the legalisation of euthanasia would change Advance How I Don’t Want to Die”, which encourages individuals to express their will steadily. ‘They might, for example, have pain in the thorax or with every mouthful they our view of human life as a value. The old, chronically ill and disabled could feel under Before the end, it’s always about the meaning of life beforehand, regardless of their current state of health. It is a sort of ‘health will’ that take, or may be unable to move their bowels, hear very well, walk properly or even just pressure, real or imagined, to demand their own death. In addition, medical advances has been given statutory weight by the Patients’ Rights Act. In the hospice, however, we be aware of what’s going on in the room. There are at once so many unknowns that have put paid to the main argument of euthanasia supporters – that of intolerable As a person reaches the end, a whole mass of fears can build up about modern society, have drawn it up on a more human scale,’ says Žargi. ‘A person can write it themselves it’s difficult to know what to do.’ pain.’ Trontelj does note, however, that ‘a lot more remains to be done to make high- says Lunder. Regardless of how an individual’s life has unfolded, most of the dying or complete a form for the introduction, suspension or refusal of treatment procedures, She says that people in these situations, with severe physical difficulties, who fail to quality assistance available to everyone.’ ask themselves questions about how they’ve lived, reflect on the meaning of life and as well as appointing a person who agrees to represent them and their interests in the “find themselves” fall into a state of withdrawn consciousness or unconsciousness.

138 139 The anthropologist Joan Halifax is convinced that euthanasia should not become part of the legal system – that is, whether it is or is not permitted cannot be decided upon by means of legislation. She believes it should be an exclusively personal decision. ‘When I was thinking about euthanasia, I asked myself the question. I do not want external principles to guide me. One needs to know deep inside what to do when the time comes. I see the role of the environment around me to help and support me in my decision.’

We write poems about the things of which we do not speak

In Slovenia, patients have quite a few rights they don’t know about, says Albina Bobnar from the Facility of Medicine in Ljubljana. For example, they alone can decide whether they wish to undergo or put a stop to treatment. All these are steps that must be known before thinking about euthanasia, which in her opinion is a last resort.

The philosopher and bioethics expert Dr Igor Pribac is a proponent of voluntary euthanasia. In his opinion, it’s a question of whether we’re prepared to take our life in our hands and take responsibility for the most intimate questions. It is not about mere privacy, but rather intimacy. ‘This is something we write poems about – rather than engaging in public debates and passing legislation.’ In Pribac’s opinion, the relationship between patients and doctors in Slovenia is an major reason for the negative attitude towards euthanasia here. This strained relationship is traditional to Slovenia, he believes. Patients are frequently dependent on the opinion of the doctor and are therefore much more passive than elsewhere in the world, he says.

141 140 Ainhoa Iriberri was born in 1975 This woman’s efforts have resulted in her collecting more than a million euros for the Extraordinary disorders, laboratory of her own Harrison Ford, Albee Messing. in Madrid, Spain. After studying extreme measures A Spanish film? journalism at the University of Navarra, she started working in the However, the disease from which Juanma suffers is even rarer than Pompe disease. A film tells the story of a father who set up a biotechnology company so that In Spain, there are five children diagnosed with it, a tenth of those with Pompe Health supplement of the Spanish a researcher could develop a drug for his children’s illness // Many parents disease. This is what is making it difficult for Messing to test on patients any of the ten drugs already approved for other diseases which are being studied in his in the same situation take similar action newspaper “El Mundo”. She was also employed by laboratory. ‘We are very grateful to the Juanma Fund but there isn’t a simple answer to how much more money we’re going to need,’ the specialist said to Público. t the end of the 1990s, a top executive at a pharmaceutical laboratory had two Reuters Health Spain and has worked as a freelancer If Messing finally succeeds in having his theories confirmed by a clinical trial – for the children with a terminal diagnosis: the infantile form of Pompe disease, a genetic A time-being, he is still at the stage of compiling samples from patients in order to identify for many journals and magazines. Currently, Iriberri condition classified as rare because of its low incidence – it affects one in every 40 000 biomarkers of the disease – Toñi’s feats will undoubtedly attract a screenwriter. She does births. John Crowley, the executive, trawled through scientific journals until he found not know if she will get to see it and explains her situation: Juanma walks with difficulty is writing for the Science section of “Público”, a new a researcher who offered at least a theoretical hope for treatment of the disease. and has had a number of falls in the last year, each of which has made his condition worse. On 14 February 2006, Toñi Fenoy, a housewife from Almería, was speechless to newspaper in Spain. However, she stresses that the first time she talked to Messing her desperation ‘turned hear that her son Juanma, aged 22 months, whose leg had been trembling the into hope’. She hopes that a Spanish hospital – just yesterday she called Jaume Campistol, National previous day, would end his days blind and immobile in a short space of time. Toñi, head of the Paediatric Neurology Department at the Hospital San Juan de Dios – will take who did not have a computer at home and did not speak English, immediately part in the first clinical trial which the American neurologist devises for testing his drugs. began to search for information about Alexander Syndrome, her son’s illness, Indeed, it was a film which created public awareness of the horror of incurable genetic diseases which is also classified as rare. Language was not a barrier to Toñi who, like for the first time.Lorenzo’s Oil (George Miller, 1992) told the story of the fight by Augusto Crowley, located the only researcher in the world who offered at least a theoretical and Michaela Odone, the parents of Lorenzo, a three-year-old boy who was diagnosed winner hope for the disease, the University of Wisconsin (USA) scientist Albee Messing. with a condition similar to the one from which Juanma suffers, adrenoleukodystrophy. John Crowley’s story has just been brought to the big screen. The film Extraordinary María Josep Coll, a consultant at the Clinical Biochemistry Institute of the Hospital Clínic Measures (Tom Vaughan, 2010) – which came to fruition through the personal efforts de Barcelona, who belongs to the hereditary metabolic diseases group of the Centro de of its executive producer, the actor Harrison Ford, who plays the alter ego of the Investigación en Red de Enfermedades Raras [Centre for Network Research on Rare researcher contacted by Crowley – tells how the efforts of this father from the United Diseases] (CIBERER), says that the oil from which the film takes its title is used today for States resulted in the emergence of a treatment for Pompe disease. mild forms of the disease. In her opinion, people must not turn their backs on doctors,

something which tends to be usual in the cinema portrayals of these experiences. Entrepreneurial spirit Cases like those of the Odones, Toñi and Canfield himself reveal that the film title

Extraordinary Measures is not appropriate at all. Many parents who receive a devastating After he had contacted the University of Oklahoma (USA) scientist William Canfield, diagnosis embark on similar ventures. Javier Fernández knows this. His son, Lucas, the two men came to the conclusion that, in order to prove their theory – the appeared on the back cover of a national newspaper at the age of barely eight months, administration of a synthetic version of the enzyme acid alpha-glucosidase (GAA), and this was not by chance. Although Javier – an economist – knows the names of the which is deficient in those suffering from the disease – they needed money, a lot of main medical reference journals, he decided to call a journalist when he found out that money. Crowley’s entrepreneurial spirit led him to decide to create a small biotechnology his son, who has Pompe disease, was running out of time for inclusion in the clinical company, for which purpose he risked his capital. The company went ahead and, trial which would test the first treatment for the condition; the development of that as a result of the progress made in Canfield’s research, it was bought by a leading treatment forms the plot for Tom Vaughan’s film. Javier concluded that focusing on biotechnology company, Genzyme. That was the company which finally developed both his case and the disease could be key to obtaining the treatment which his son Myozyme, the only drug currently approved for the treatment of Pompe disease. needed so much. Eight years later, in defiance of every prognosis, he is still alive and Toñi Fenoy’s story is even more incredible than Canfield’s. However, receives the treatment regularly. Spain at the moment it lacks a vital ingredient for the type of Hollywood

melodrama that defines Extraordinary Measures: a happy ending.

142 143 Access to treatment True Provided people work as a team, I think this danger is reduced. However, in order to prevent this from happening, it is very important to have scientific advisors. Javier Fernández is the secretary of the Asociación Española de Enfermos de Pompe disease can manifest itself at different ages. The extent to which the organs are In the more than 180 associations belonging to the Federación Española de Glucogenosis [Spanish Association for Glucogenosis Sufferers] and he works actively affected depends on the residual activity of the enzyme GAA, and the infantile form of Enfermedades Raras [Spanish Federation for Rare Diseases], there are scientific to ensure that other patients are able to access treatment at the earliest age the disease is the most serious. Children can die at the age of two. advisors who have to have an open mind to ensure the flow of useful information. possible. He is clear that the key lies in neonatal diagnosis, which does not happen in Spanish hospitals, although it could be carried out using the heel prick test which The roles of John Crowley and William Canfield 4 is performed on all newborns to check for certain genetic disorders: congenital What are your association’s main demands at the moment? hypothyroidism, suprarenal hyperplasia and hyperphenylalaninaemia. Coll points out False Our main request is that referral centres are set up for the treatment of Pompe disease. that there is a technique – tandem mass spectrometry – which makes it possible This would avoid the need for many parents to move house in order to find a good to carry out what is known as ‘broad screening’ using a single test. However, she In the film, the father of two children with Pompe disease (Crowley) sets up a company doctor for their child. We are also calling for neonatal screening using the heel prick makes the comment that the decision ‘is not scientific but rather political and financial’. so that a researcher (Canfield) can develop a treatment. However, his role is key to test. Current attempts at early detection of diseases in newborns cover the most common ensuring that different research teams combine their work. of the rare diseases, but there are more than 600 conditions like Pompe disease and ‘it would be impossible’ to check for all of them. ‘There would have to be a study to see True what to include in the broad screening’, explains Coll. According to the laboratory and patients’ organisations, the team of researchers from Sidebar 1. the Erasmus Medical Center in Holland was the most important in the development of Myozime, although the work of the scientist in the film was highly valued. A sweetened story with inaccuracies and omissions Sidebar 2. The effects of the ‘special medicine’ Interview with Antonio Bañón, chairman of the Association for Glucogenosis Sufferers False ‘We need referral centres’ In the film, John Crowley’s children notice the effect of the so-called ‘special medicine’ (the drug Myozime) hours after it is given to them. In addition, it is said that the little 1 girl manages to ‘get in a car for the first time in her life’ after the treatment. You founded the Association for Glucogenosis Sufferers and you are its chairman. How True was the association formed? I think my case resembles that of other, similar associations. I have a son aged 15 who has Unfortunately, the existing medicine for Pompe disease is not effective in all cases. It the disease and in 1999 I set up the association. In the beginning, it was to speed up the is particularly effective in newborns, but in older children and adults it slows down the search for a treatment. Since then, it has brought me much more in terms of human support. progress of the disease and does not reverse it. 2 Age of sufferers and how seriously they are affected In many films about rare diseases, you see how some parents become real scientific experts. Do you think that picture is true? False Although it isn’t a widespread feature, I think it is a pattern that you see frequently. There are even cases of parents who, without much formal training, In Extraordinary Measures, all those affected by Pompe disease are children. Although end up with a good knowledge of everything relating to metabolic processes. they cannot walk or breathe by themselves, they are able to speak and are portrayed as happy children with nearly normal lives. 3 Don’t you think that the parents’ desperation can be a breeding ground for crooks who want to take advantage of them?

145 144 Jeanette Bergenstav has been a summer break, he was in his hospital bed looking out at the blue sky. WHEN LIFE GETS A SECOND – Then I felt quite sorry for myself. I was angry because it was unfair, nothing helped freelance journalist for 22 years. and I got worse. In the end, I couldn’t even brush my teeth without resting. I wasn‘t CHANCE very nice then, I‘m afraid. It was probably good for my mum that my sister took her Throughout the years she has place her sometimes. They spent a lot of time with me at the hospital, Linus says. written about everything from crime Today he has the Chinese signs for “love of family” tattooed on his left arm. When o one knows in advance who among us is going to be an organ donor or an organ the doctors started to talk about a heart transplant, Linus’ only thought was “Finally!” and social issues to children, dogs Nreceiver. But in order for transplantation to save a sick person’s life, another human – I was never afraid of the heart transplant. I got no guarantees, but it was my only being must have been generous enough to want to donate his or her organs after chance to get totally well again. That would never have happened with my old heart. If and travelling, for both daily- weekly death. the medication had worked, my life would nevertheless be like that of a pensioner and I would only have been able to go for walks. That‘s no life for a seventeen year old. and specialist press. Bergenstav is Today, demand is greater than supply. For that reason, people die in the transplantation a typical feature journalist who wants to take the queue before a suitable organ is found. In July, Linus suddenly got worse. An urgent call went out, putting him at the top of the waiting list and a request for a suitable heart was sent to all partner countries in Europe. time required for thorough research. When she But there are those who have luck on their side. – I didn’t understand how bad it was, not until afterwards. I never thought about dying, only about what I could do when I got better. writes about health and medicine it is the people Here you will meet four people who very nearly died but, thanks to new organs being found in time, they’ve been lucky enough not only to survive, but live life to the full affected, rather than the purely medical aspects National with renewed strength. Noticed the difference directly that she likes to focus on. Hopefully, you will also find information that can help you decide whether to become A heart came and the operation went well. Extremely well. a donor. – As soon as I woke up, I felt a super difference! I was so high-powered that the staff told me to calm down. winner ”I never thought that I could die” Two and a half weeks later, Linus went to see his floorball friends. He Linus Sagré, 25 years old, floorball instructor, got a new heart in July 2001 kept his promise to the doctor to give his chest bone eight weeks to heal. – But not one day more, Linus laughs. Today, he is one hundred percent Linus, just as he – The weirdest thing about being sick was that my legs didn’t feel like running. had wished that summer in the hospital bed. Floorball, workout, snowboard and friends… Being pushed around in a wheelchair to get some fresh air was no hit, Linus Sagré – The person who decided to donate his heart saved my live. In the beginning, I was concludes. He started playing football very young. At ten, he got hooked on floorball. very curious about who he or she was. Now I mostly feel incredibly thankful. For me it He and some of his mates in IBK Alingsås have been playing ever since. Three training was natural to accept such a nice gift. sessions a week. Matches at weekends. And a couple of visits to the gym. That’s the right dose, according to Linus. FACTS ABOUT HEART TRANSPLANTS – I like the speed of floorball. Something is happening all the time and that suits me.

Diagnosis – heart failure The first Swedish heart transplant was performed at the Sahlgrenska hospital (Gothenburg) in 1984. Today around 40 heart transplants are preformed Around Christmas 2000, Linus felt like he had a cold. But the fatigue and shortness of each year, making Sahlgrenska Sweden’s most important centre for such breath didn’t go away. The doctor prescribed asthma medication that didn’t help. During a floorball tournament in March, Linus had to leave the floor. It had never happened before. procedures. Most patients work or study again one year after the operation. – When they diagnosed me with heart failure, I became scared. It hadn’t even crossed The survival rate is 90% after one year and 75% after five years. my mind that it could be my heart. Sweden Linus was hospitalised, but no treatment helped and his condition deteriorated rapidly. When his friends went swimming during the

146 147 ’When I saw that the white of my eyes were yellow, I knew – I was aware of the risks, but this was my last chance! which gave her enough strength to do what she wanted – work, play golf and bridge placed on the waiting list, this time for a kidney transplant. Today, her new immediately what it meant’ Lena recovered in record time. Ten days after the transplant she could go home. and write a cookbook. She couldn’t even taste the meals she cooked, but continued to kidney has been in place for three years. In August, she went to the World invite her friends over for dinner. Transplant Games, the Olympic Games for transplant athletes, in Australia. Lena Essedahl, 52 years old, physiotherapist – got a new liver in February – A liver transplant is a big, life-changing operation. But I actually felt worse after She came home with a lovely tan and a gold medal in her hand luggage. 1996 my intestine operations than after the transplant. I noticed the difference directly – I used to dish up some food and pretend to eat. If I had a dinner partner and was walking around with a feeling of intense happiness. And finally I had who knew about my condition, we would switch plates when he was ready. – I had practised like mad, so it was fantastic to win. But the greatest thing was that all One Friday in August 1995, Lena Essedahl was sitting in her car on her way to a the strength to train my dogs again, it was such great fun and it went so well! I didn’t want to show how ill I was. I just wanted everything to be normal. the athletes - over a thousand of us - were actually there. We would never have been tracking competition with her two golden retrievers Gibson and Abbe. Something got Today the whites of Lena’s eyes really are white, but she checks the from time With three children, a house, a garden and a full-time job as language teacher, there if it hadn’t been for those individuals who had decided to give us their organs. stuck in her eye and she lowered the sun shield to check in the mirror what it was. to time in the mirror. Zidane, her fifth golden retriever, is ready for the elite Eva had always had her hands full. She organized language courses abroad, – When I saw that the white of my eyes were yellow, I knew immediately what obedience training and his son Larry has also begun to show promise. Lena runs wrote dictionaries in four different languages and exercised as much as she could. FACTS ABOUT INTESTINE AND MULTIVISCERAL TRANSPLANTS it meant – my liver wasn’t working anymore, Lena says. At the time she was 38. her own company, gives dog training courses, goes bird-watching and enjoys nature. As a teenager, she had discovered that the episodes of fatigue, diarrhoea – I liked being so busy. But maybe it was a bit too much after all, she says with and blood in her faeces were due to ulcerative colitis, an inflammatory – I try to do the things I really want to do. I have often thought about the person who hindsight. Scandinavia’s first intestine and multivisceral transplant was performed bowel disease. At 24, her colon was removed and she had a stoma. let me have a new life. All I know is that he or she was a generous person. To donate at Sahlgrenska in 1998. The girl, who was four years old at the time, is – I continued to play handball with a pouch on my stomach. My team-mates were your organs so that another human being can live on when you can’t is the most An unsuccessful ulcer operation probably more afraid than I was that something would go wrong, Lena recalls. human thing you can do. living a more or less normal life today. Since then, around twenty patients At 45, she had an ulcer operation, which failed and had to be re-done. The scar tissues have received transplants. Nowhere else in the Nordic countries are such Twelve operations on the intestine FACTS ABOUT LIVER TRANSPLANTS in her stomach grew into each other and affected the intestines. After about twenty transplants performed. One year after the procedure, 80-90% of the patients stomach operations and several painful ileus attacks (intestinal paralysis), she was put She underwent twelve operations on her intestines. Every time she struggled and on the waiting list for a transplant. She had to wait three and a half years. By that time, are still alive. After one year, all children and 90% of adults who receive a new liver got back to an active life. But now her condition was worse than ever. Her yellow she needed hourly injections of painkillers. When she finally received the call, for once eyes were a sign that her liver was working so poorly that bile was entering her are still alive. After five years, 80-85% still live. Methods have evolved she cancelled a dinner party. Everything wasn’t as normal! blood stream. Tests confirmed her worst fears. Lena must have a new liver to survive. FACTS ABOUT KIDNEY TRANSPLANTS in recent years and it is now possible to use live donors - usually these The oldest woman in the world – During the wait, I oscillated between hope and despair. I was afraid that I should die parents donating part of their liver to their child. At Sahlgrenska, around 90 At Sahlgrenska, kidneys have been transplanted since 1965. Over 4 500 while waiting. Every morning I got up and looked myself in the mirror and hoped that operations are performed every year, which makes it the most important At 66, Eva was the oldest woman in the world to undergo the procedure: I would look better. But I only became more and more yellow. In the end, my skin and kidney transplants have been performed since then. Today, about 150 are eyes were yellow as saffron. It was so unreal that sometimes I thought that it must centre for liver transplants in Scandinavia. done each year. The patients have to wait between one and three years. In – I didn’t like to hear that, because I didn’t feel old. Maybe that’s why they gave me a be a dream. chance. My spark of life is strong and I never give up hope. I really want to be here. the meantime, they have to be in dialysis. On average 40% of patients get ”When the organs in my stomach were removed, they were like one Powerless in the queue their kidney from a living donor and they don’t have to wait. After one year, big bundle” Eva was on the operating table for 14 hours and in the intensive care unit for two months. about 95 percent of the kidney transplants work and after five year around Having to queue for survival gave her a strong feeling of powerlessness. The only thing Eva Ljungren, 72 years old, retired, received new intestines, stomach, Lena could do was keep of her part of the bargain as well as she could. pancreas and liver in April 2004, and a new kidney in November 2006. 85 percent. The long-term results are somewhat better with a living donor

– My condition was critical for a long time. I don’t remember anything myself, but – I took my part very seriously. I kept in shape, ate the right food, tried to keep The tenderloin was cooked and the biscuits were ready, when a voice on for my husband Klas, it was an ordeal. We’ve been together since 1957. He visited ”Every time I go jogging, I think about how fantastic this is” infections away and was always prepared. When my then husband and I were snowed the phone announced that Eva Ljungren would have five new organs. me twice a day and never knew if I would be alive when he came, Eva says. Åsa Nordin, 39 years old, employment officer – got new lungs in November in, we talked about skiing to the nearest open road, if the hospital should call. And Recovery was hard, but finally she was strong enough to go home. 1998 when my sister celebrated her birthday with champagne, I barely dared to sniff the – It was high time. When the organs in my stomach were removed, they were cork. like one big bundle. I wouldn’t have survived for more than a month, Eva says. Have a lung transplant or die. To the uninitiated, this might sound like She was the seventh person in Sweden to have a multivisceral transplant, i.e. a – The greatest joy was to drink a whole glass of water. I enjoy that intensely even today! a simple choice. But for Åsa Nordin, it was a hard decision to make. The infections and the spells of fever came more frequently. The walks with the dogs transplant of more than one organ at the same time. In her case, it was the small became shorter and shorter. When the call finally came from Sahlgrenska, Lena felt intestine, duodenum, stomach, pancreas and liver. For ten years, Eva could neither eat But all the medication had destroyed Eva’s kidneys. Once again, she was – A transplant was something major and scary that I didn’t want to be part of. And the delight tinged with horror. nor drink. She survived through parenteral nutrition, given intravenously each night,

148 149 thought that someone had to die so that I could live was very hard for me, Åsa says. – If you’re born with cystic fibrosis, you are used to exercise being something hard and Skövde, Sunday 25 October, at 17.48 Anita and Peter have decided that they agree to an organ donation, but they still have Eleven years have passed since she was sent home with her mixed feelings. tiresome. But the disease doesn’t affect my new lungs, so now I the exercise just makes Stig is quickly taken to Kärn hospital in Skövde. He has suffered a massive stroke and many questions. She had been given the Christmas holiday to think it over and decide. Åsa’s little more alert and happier. Every time I’m out jogging I think about how fantastic it is! everything is done to save his life. His breathing is weak and he is put on a ventilator. nephew Christoffer, four years old, was the one who helped her make up her mind. When Åsa was at her illest, she dreamed about going for walks. Today, she His wife is by his side all the time. – Life changes quickly sometimes. Anita and her son were very, very sad, but collected and her sister have done the ”Women’s classic”, i.e. shorter versions of four at the same time. They had never thought about discussing organ donation with Stig. – When he said “Åsa, promise me you won’t die”, there was only one thing classic Swedish athletic events - Vasaloppet (cross-country skiing), Lidingöloppet Kärn hospital, Skövde, Monday 26 October, at 15.50 But he always used to help people, so they felt that this was something he would have to do. Without those new lungs, I would die. My sister’s boys mean a lot to (running), Vansbrosimmet (swimming) and Vättern runt (cycling). And at the Stig is pronounced dead. His life couldn’t be saved and his brain has shut down wanted. I think that the decision felt good for both of them. In fact, I have never met me, they only have one aunt. And I was 28 and had so much more to do. World Transplant Games - the Olympic Games for transplant athletes - Åsa won permanently. It is the ventilator that is making his heart beat. a relative who has regretted saying yes to a donation, Charlotte states. Åsa was put on the waiting list and her condition got worse. the 100 metre breaststroke and took third place in the three kilometre run. The Regional Donation Unit, Sahlgrenska, Gothenburg, Monday, 26 October During the discussion, she tells the relatives that the organs are taken out during a A prisoner in her own home – Nobody could even imagine that when I was a child on a seesaw , while mum and at 15.55 normal operation. Stig will be treated with great respect. Afterwards, the wound is dad tried to get the mucus out of my chest, Åsa says, concluding that she really did get The phone rings at the Regional Donation Unit at Sahlgrenska hospital. Here, six stitched together and a normal, white bandage is put over it. – I was a prisoner in my own home. If I had to go somewhere, I had to be a wheelchair a new life. And Christoffer and Filip now have an alert aunt who can run. transplant coordinators coordinate all organ donations in the region, to bring about and bring oxygen. transplants to give sick people the chance of a new life. Today Charlotte Lovén is on – There are many misconceptions about what the body will look like after the donor Sometimes I was in bed with a high fever for three or four weeks at a time. I FACTS ABOUT LUNG TRANSPLANTS call. operation. If Anita wants to say goodbye to Stig afterwards, she shouldn’t have to felt like a burden because I couldn’t help out in the house. When my partner worry about it. cooked a nice dinner which I threw up after ten minutes, I felt very guilty. The first lung transplant at Sahlgrenska was performed in 1991. Now 30 to – The doctor from Skövde told me about a patient who had just been pronounced Just before the operation, Eva was almost constantly connected to a device 40 lung transplants are performed each year. The diagnosis of the patient dead following a fatal stroke. As the patient was on a ventilator when he died, he is a Kärnsjukhuset Skövde, Monday 26 October, at 19.30 that helped her breathe. So after two years on the waiting list, she had twenty determines whether he or she will get one or two new lungs. About 90% possible organ donor, Charlotte says. Stig is taken care of so that his organs are doing well. His respiration and circulation are minutes before the ambulance came for her, but she was more than ready. of patients are still alive one year after the procedure and the five-year being monitored, fluids added and he is covered with heated blankets. survival rate is just over 65%. The first thing she does is to check if she can find Stig Johansson in the donor register. – It felt like I was about to play the match of my life – I had nothing to lose! He isn’t there. Nor is there a donor card among his things. Charlotte finds a corner in an empty office where she sets up temporary liaison office. The transplant went well, but afterwards Åsa suffered internal bleeding and needed WORLD TRANSPLANT GAMES 2011 two more operations. – If the deceased has made his will known, you can see how relieved the family is. – Many things have to come together and I make around one hundred calls for one But often the situation is the same as for Stig’s family, and it is a big decision to make donor case. Several operating teams are summoned, wards prepared and blood banks On 18-25 June 2011, the World Transplant Games - the Olympic Games An incredible feeling when you’re grieving. and virus labs contacted. Transport is arranged for patients, medical teams and organs. for transplants - will be held in Gothenburg. About a thousand athletes If a plane is late or a car breaks down, that’s a problem that has to be solved. In from all over the world will compete for medals in, for example athletics, – When I got my strength back, it was an incredible feeling. It was Sahlgrenska sjukhuset, Gothenburg, Monday 26 October, at 16.45 the end, it’s all about one thing – the organs have to arrive on time and in the best tennis, table tennis, swimming, volleyball, floor ball, bowls and golf. All wonderful just to be able to take a shower and put on my clothes, Charlotte is the first person to go from Sahlgrenska to Skövde. On the way, she looks condition possible, in order for the patients to have their transplants. participants have one thing in common – thanks to organ donation and a Åsa says, recalling when her youngest nephew learnt to ride his bike. at the information about Stig again: successful transplant, they have been given the possibility to take part. Kärnsjukhuset Skövde, Monday 26 October, at 20.00 – I held on at the back and he peddled faster and faster. Suddenly he slammed A matter of minutes on the border between life and death – Stig had high blood pressure and he took medication for that. He was slightly Stig’s heart and lungs are x-rayed and blood samples are taken. His organs are on the brakes and shouted “But Åsa, you can run!” Then I was happy. overweight and belonged to blood type A. He didn’t exercise much, but used to go for functioning well. The doctors in charge at Sahlgrenska accept Stig’s organs. They have On the first anniversary of the transplant, she got engaged to Thomas, who had stood In a couple of days, the lives of two families are changed forever. One will a walk now and then with his wife. He smoked when he was young, but stopped 30 also decided who will get them. Those who are worst off are first in line. Other aspects by her side during the whole struggle. lose a beloved husband, father and grandfather. For the other family, a dying years ago. He occasionally had a couple of beers, and a whiskey at weekends. He was, under consideration are blood type, tissue type, body size, age and how long a person mother-of-two gets a chance to survive. in other words, like most of us, which is good enough for an organ donor. has been waiting. Got cancer Skövde, Sunday, 25 October 2009, at 17.25 Kärnsjukhuset Skövde, Monday 26 October, at 18.50 Charlotte never goes anywhere without the waiting list with all the names and contact Two years later Åsa got cancer in a lumbar vertebra. Then her family almost gave up. Stig Johansson, 56, has just put the last winter tire on his car when he gets a severe When Charlotte meets Stig’s wife Anita, she sits by his bed holding his hand – the man details. Now it’s time for her to make five long-awaited calls to the recipients of Stig’s She describes the chemotherapy and the radiation treatment as child’s play compared headache. He takes a few steps towards the house, but loses his balance and falls. she has loved for over half of her life. The hand is still warm and Anita has a hard time organs. to what she already had endured. Today she is cancer-free. And very physically active. In the kitchen, his wife Anita is peeling potatoes when she hears a cry. She finds her understanding that Stig is really gone. Their grown-up son Peter, married with a two- husband on the driveway. He is unconscious. year-old son, should have had Sunday dinner with his parents yesterday. He puts his arm around his mother.

150 151 Mellerud, Monday 26 October, at 20.02 Close to dawn, the team leaves Skövde and, together with Charlotte, they transport the But a greeting from a happy recipient can give a certain comfort, a glimmer of light in On the waiting list of the Transplant Centre there are: In the bedroom, Annica Svensson, 44, and her two daughters are cuddled up in bed. organs to Sahlgrenska and more waiting recipients. all that darkness. In a way, death isn’t as meaningless when it has given life. * 190 people waiting for a new kidney (five of whom also need a new A tube goes from Anita’s nose to the container with oxygen that helps her breathe. It’s pancreas) bedtime for seven-year old Alva, but Annica gets out of breath so easily that she lets Sahlgrenska, Tuesday 27 October, at 05.40 Footnote 1: Stig’s heart, liver and kidneys have been given to four happy recipients. * 27 people waiting for a new liver big sister Lina do the reading. In the middle of the unravelling of the mystery, Annica’s Annica’s new lungs arrive. She has been under anaesthetic for a couple of hours and is His corneas were taken by the cornea bank at the hospital of Mölndal. * 7 people waiting for a new heart cell phone rings. Her daughters look wide-eyed at her as her eyes fill with tears. She on the operating table. For time efficiency reasons, her chest is already open, but her * 7 people waiting for a new pair of lungs tries to say something, but gets no air at first. Then she whispers yes a couple of times lungs are not removed until the new ones are in the room. Footnote 2: This text describes what an organ donation and a transplant might look * 1 person waiting for a new intestine and a “thank you so very much” and turns to her girls. like. It is based on real cases, but transplant coordinator Charlotte Lovén at the Regional Sahlgrenska, Tuesday 27 October, at 06.00 Donation Unit in Gothenburg, is the only factual person. Captions: – It’s my turn. I will finally get a pair of new lungs. Keep your fingers crossed, girls. The transplant begins. Annica’s old lungs are removed. The new ones are put in During an organ donation, the transplant coordinator is the link between donor and When I’m home again, it’s my turn to do the reading. And this summer, we’ll go to the place. FACTS ABOUT THE REGIONAL DONATION UNIT receiver. Charlotte Lovén attends the removal operation. When the organs have been amusement park together! removed, she makes sure they are correctly packed in cool bags and kept at four – For Annica, this procedure is a matter of life or death. She has been waiting for a long The Regional Donation Unit is situated at Sahlgrenska hospital in Gothenburg. degrees. Mellerud, Monday 26 October, at 21.10 time and her conditions has deteriorated lately. Thanks to matching blood types and It was established in January this year. This unit is the only one of its kind in An ambulance comes for Annica. She hugs her girls for a long time before she leaves. because she is a tall woman, she could receive Stig’s lungs, Charlotte explains. Scandinavia and works as a link between intensive care units and transplant Timing is crucial for everything to work out during the organ donation. Transplant Her sister accompanies her to the hospital. They hardly say a word to each other on centres. The staff consists of one doctor and six transplant coordinators with coordinator Charlotte Lovén constantly keeps an eye on the watch so that the time the way. They just hold hands tightly. Sahlgrenska, Wednesday 28 October, at 09.20 extensive experience of organ donations. They are always on call and are schedule is followed. The ventilator is disconnected and Annica starts to breathe on her own. She takes a contacted when a patient dies on a ventilator at one of the hospitals in the Kärn hospital Skövde, Tuesday 27 October, at 01.00 deep breath. And then another one. She doesn’t cough. Doesn’t have to catch her region. Hospitals in Norrland and in the south-east health care region are During an organ donation, time is scarce. Cristal clear routines and high competence are The removal operation starts on time. Stig is still on the ventilator when two transplant breath. Certainly, she feels a stab in the operation scar, but she doesn’t have to fight also part of the cooperation network. crucial during a transplant. Transplant coordinator Charlotte Lovén is on her way with surgeons from Sahlgrenska start the procedure. In the operating room, there are also for air anymore. She just breathes! Her daughters, who have been waiting outside, Donation Unit: some organs to a waiting recipient at the Transplant Centre at Sahlgrenska University anaesthetic and operating room staff from both Skövde and Gothenburg. cautiously approach their mother in the hospital bed. * takes care of organs from 32 Swedish hospitals hospital. * exchanges organs between the Nordic countries as well as several Kärn hospital Skövde, Tuesday 27 October, at 02.30 – We made it! Go get a book and I’ll read to you, Annica shouts and puts her arms European countries HOW IS IT DONE? Two thoracic surgeons and an operating room nurse, specialists in dealing with hearts around the little girls, who finally, in their mothers’ arms, let out the tears. * handles organs from around 60 donors per year and lungs, have arrived and take over at the operating table. * participates in the preparatory work so that 250-300 persons per year can Questions and Answers about Organ Donation Sahlgrenska, Tuesday 19 November, at 11.00 receive new organs at the transplant centre in Gothenburg. – Before the organs are removed from the body, they are rinsed with a cold solution. Annica is released from hospital. She is susceptible to infections and it will be weeks What can be donated? The heart is removed first, then the lungs. As soon as they have left the body, I make before her chest bone is healed. She has had a rejection, which was stopped. It could Hearts, lungs, livers, intestines, kidneys and pancreas. It is also possible to donate tissue sure that they are put in cool bags with ice. They must be kept at four degrees all of happen again. For the rest of her life, she will have to take medication to prevent her FACTS ABOUT THE TRANSPLANT CENTRE the time, Charlotte Lovén explains. immune system from rejecting her new lungs. She must have medical checks all her such as heart valves, skin and corneas. Bone marrow is donated by living donors. life. And she will be able to see Alva and Lina grow up. The Transplant Centre at the Sahlgrenska University hospital in Gothenburg Now every minute counts. A heart can manage four hours outside the body, a pair of is the largest transplant unit in Sweden. It is the only unit in Scandinavia Who is eligible to donate? lungs six. The thorax team leaves the room, taking the bags with the organs with them. Sahlgrenska, Wednesday 16 December, at 14.05 that transplants all organs. Between 1 January and 31 October 2009, organs They are transported back to Sahlgrenska under blue flashing lights. Charlotte’s phone rings. It is Annica Svensson who wants to send a Christmas card to from 46 donors were transplanted. This meant that Almost all of us are potential donors in practice. There are no age restrictions. There the donor’s relatives. She wants to thank them for the most precious gift she has ever * 120 people got a new kidney (six of whom also received a pancreas) are 80-year olds who have been able to donate a kidney or a liver. Child donors are – At this time, the roads are almost empty, but in rush hour traffic I would have asked been given. * 80 people got a new liver for a helicopter, Charlotte says. * 28 people got a new heart always needed. In many cases, even sick people can donate organs unaffected by – In Sweden, the identities of the relatives of the donor and of the receivers are kept * 31 people got new lungs disease. Neither people who are HIV positive nor active intravenous drug users can She stays in the operating room. The abdominal surgeons take care of the liver and the secret. But a person who has received a new organ often feels tremendous gratitude. * 2 people got new intestines kidneys. Time is not so critical now. A liver can last up to 12 hours outside the body and So of course I will pass on Annica’s letter, which has to be anonymous, to Stig’s relatives. This also means that 2009 will be the year when more people than ever will donate. It is important to know that you don’t have to take any responsibility yourself kidneys up to twenty-four hours. Finally, the wound is stitched together neatly. For them, this Christmas won’t be like any other Christmas. get new organs here. But many seriously ill people are still waiting for new as to the suitability of your organs. organs.

152 153 An individual who has said yes to donation will be assessed medically if the question Donation doesn’t delay the funeral. How do I make known what I want? Jinni Löfstrand, 51, Gothenburg: of donation arises. You can register with the national donor register at www.donationsradet.se. You can – No, I haven’t registered, but I will as soon as I have time. I just haven’t got around Can you donate while alive? also call the National Board of Health and Welfare, switch board 075-247 30 00 and to do it. I have children, so in a way it feels natural to imagine donating your organs. How is it decided who can be a donor? Yes, a healthy individual can donate one of his or her kidneys. The most common they will put you through to the right person. You can also complete a donor card and Sebastian Kremer, 18, Älvängen: Only people who die while on a ventilator can donate organs. This is because the situation is that a family member or friend donates. You can also donate a kidney keep it in your wallet. You can get a card at the chemist or at your health centre. You organs must receive a constant flow of oxygenated blood. If you are on a ventilator, anonymously to a total stranger. You can also donate part of you liver. Often, parents – I don’t know, maybe my mum has done it? I think donation is good thing. Why not, can also tell your relatives. you know? It saves lives. If you can help somebody who really needs it, I think it is a your heart can keep beating even thought your brain no longer functions. The most will donate a part of their liver to their child. very good thing. If someone in my family would fall ill, I would donate my kidney at common cause of death is a stroke, but a person can also have suffered head trauma Can I change my mind? once. Why should I donate? or long-term hypoxia. Yes, it is always the last known will that is followed. For example, if you Anne-Marie Gard, 66, Gråbo: Today, over 600 people in Sweden are on the waiting list for an organ transplant. There registered with the national donor register, but later said something else to Is it different with tissue? are children and adults with an acute disease or a severe chronic illness. For those who – No, I haven’t registered. My husband and I have talked about doing it. If something your relatives, it is the latest information that is valid, even though it has been happens and you need organs, then you would like the possibility to be open to you. Yes. Tissue such as heart valves, corneas and skin can survive without blood circulation. are waiting for a heart, lungs or an intestine, there are no alternative treatments – they said orally. You can also re-register. More information: www.donationsradet.se Then you have to be as generous with yourself, if that would be the case. So tissue donation is possible in the case of most deaths. Tissue can be stored outside will die unless they get a new organ. Those waiting for a new kidney must have dialysis the body for longer and kept in tissue banks pending a suitable recipient. until a donor is found. Any one of us can either be a donor or recipient. No one knows SURVEY: in advance. But one condition to be able to save a sick person through a transplant is Can my attitude towards donation affect the care I get? that there is another person who has been generous enough to want to donate his or Have you registered with the national donor register? No. All resources are devoted to saving your life. Your attitude towards donation isn’t her organs after death. Today, the demand for organs is greater than the supply. For Eight out of ten in Sweden agree to donation and checked until after death. Thus it cannot affect the care you get. that reason, people die while waiting, before a new organ is found for them. 1.5 million people are registered in the national donor register. What about you? Is there any chance that a brain-dead person wakes up? Are there no other ways to procure organs? No. Following a total brain ischemia, i.e. the state known as brain death, all brain No, not today. Research is on-going and maybe in the future it will be possible to Peter Tideman, 51, Sävedalen: activity had irreversibly ended. It takes two medical examinations at least two hours produce organs artificially or use organs from animals. – Yes, I made a call and registered two years ago. And I have a donor card in my apart to establish this. If you are in a coma, however, you can wake up. In that case, wallet. I think it’s a good thing if somebody can use my body parts when I die. If they brain activity is reduced, but hasn’t ceased totally. There is a major difference between Who decides if my organs are up for donation? should be needed for research, that is also good. these two conditions. You do! If you have made you will known, it stands. No one can change that. What Malin Mattsson, 34, Gothenburg: happens if you haven’t decided? Then your relatives will be asked whether they know How is organ donation done? – No, I haven’t registered, but I will when I have read up a bit on the issue. I wouldn’t if you wanted to be a donor. If the person’s will is not known, the law says that your want my relatives to have to take that decision. I’m in favour of donating. If something After death has been pronounced, the donor is kept on the ventilator for up to 24 organs may be taken. Your relatives have the right to veto that decision. If they say would happen to those I hold dear, then you’re thankful if there are organs available. hours, pending the removal operation. This is performed in exactly the same way as if no, there is no donation. the patient were alive, with utmost respect. Afterwards the wound is stitched together and a normal dressing put on. The body doesn’t look strange. 155 154 Deborah Cohen Conflicts of Interest Already WHO’s handling of the pandemic has led to an unprecedented number of reviews and inquiries by organisations including the Council of Europe, European Parliament, and WHO itself, following allegations of industry influence. Dr Chan has dismissed these as “conspiracies,” and earlier this year, during a speech at the Centers WHO and the pandemic flu for Disease Control and Prevention in Atlanta, she said: “WHO anticipated close scrutiny of its decisions, but we did not anticipate that we would be accused, by some European “conspiracies” politicians, of having declared a fake pandemic on the advice of experts with ties to the pharmaceutical industry and something personal to gain from increased industry profits.” ey scientists advising the World Health Organization on planning for an influenza Kpandemic had done paid work for pharmaceutical firms that stood to gain from the The inquiry by British MP Paul Flynn for the Council of Europe Parliamentary Assembly— guidance they were preparing. These conflicts of interest have never been publicly due to be published today—will be critical. It will say that decision making around Philip Carter disclosed by WHO, and WHO has dismissed inquiries into its handling of the A/H1N1 the A/H1N1 crisis has been lacking in transparency. “Some of the outcomes of the pandemic as “conspiracy theories.” Deborah Cohen and Philip Carter investigate pandemic, as illustrated in this report, have been dramatic: distortion of priorities of public health services all over Europe, waste of huge sums of public money, provocation Next week marks the first anniversary of the official declaration of the influenza A/ of unjustified fear amongst Europeans, creation of health risks through vaccines and H1N1 pandemic. On 11 June 2009 Dr Margaret Chan, the director general of the medications which might not have been sufficiently tested before being authorised in World Health Organization, announced to the world’s media: “I have conferred with fast-track procedures, are all examples of these outcomes. These results need to be National leading influenza experts, virologists, and public health officials. In line with procedures critically examined by public health authorities at all levels with a view to rebuilding set out in the International Health Regulations, I have sought guidance and advice public confidence in their decisions.” from an Emergency Committee established for this purpose. On the basis of available evidence, and these expert assessments of the evidence, the scientific criteria for an The investigation by the BMJ/The Bureau reveals a system struggling to manage the winners influenza pandemic have been met…The world is now at the start of the 2009 influenza inherent conflict between the pharmaceutical industry, WHO, and the global public pandemic.” health system, which all draw on the same pool of scientific experts. Our investigation has identified key scientists involved in WHO pandemic planning who had declarable It was the culmination of 10 years of pandemic preparedness planning for WHO—years interests, some of whom are or have been funded by pharmaceutical firms that stood of committee meetings with experts flown in from around the world and reams of draft to gain from the guidance they were drafting. Yet these interests have never been Deborah Cohen and Philip Carter work for BMJ documents offering guidance to governments. But one year on, governments that took publicly disclosed by WHO and, despite repeated requests from the BMJ/The Bureau, (British Medical Journal). advice from WHO are unwinding their vaccine contracts, and billions of dollars’ worth of WHO has failed to provide any details about whether such conflicts were declared by stockpiled oseltamivir (Tamiflu) and zanamivir (Relenza)—bought from health budgets the relevant experts and what, if anything, was done about them. already under tight constraints—lie unused in warehouses around the world. It is this lack of transparency over conflicts of interests—coupled with a documented A joint investigation by the BMJ and the Bureau of Investigative Journalism has changing of the definition of a pandemic and unanswered questions over the evidence uncovered evidence that raises troubling questions about how WHO managed conflicts base for therapeutic interventions(1) —that has led to the emergence of these of interest among the scientists who advised its pandemic planning, and about the conspiracies. transparency of the science underlying its advice to governments. Was it appropriate for WHO to take advice from experts who had declarable financial and research ties with WHO says: “Potential conflicts of interest are inherent in any relationship between a United pharmaceutical companies producing antivirals and influenza vaccines? Why was key normative and health development agency, like WHO, and a profit-driven industry. WHO guidance authored by an influenza expert who had received payment for other Similar considerations apply when experts advising the Organization have professional work from Roche, manufacturers of oseltamivir, and GlaxoSmithKline, manufacturers links with pharmaceutical companies. Numerous safeguards are in place to manage of zanamivir? And why does the composition of the emergency committee from which possible conflicts of interest or their perception.” Chan sought guidance remain a secret known only to those within WHO? We are left Kingdom wondering whether major public health organisations are able to effectively manage the conflicts of interest that are inherent in medical science.

156 157 Another factor that has fuelled the conspiracy theories is the manner in which risk has In 1999 other members of the European Scientific Working Group on Influenza included Barbara Mintzes, assistant professor in the Department of Pharmacology and That article appeared in the European Scientific Working Group on Influenza’s bulletin of been communicated. No one disputes the difficulty of communicating an uncertain Professor Karl Nicholson of Leicester University, UK, and Professor Abe Osterhaus of Therapeutics at the University of British Columbia, is currently part of a group working April 1999; Professor Osterhaus signs off with the affiliation of WHO National Influenza situation or the concept of risk in a pandemic situation. But one world expert in risk Erasmus University in the Netherlands. These two scientists are also identified in Roche with Health Action International and WHO developing model curricula for medical Centre Rotterdam, The Netherlands. communication, Gerd Gigerenzer, director of the Centre for Adaptive Behaviour and marketing material seen by this investigation which was produced between 1998 and and pharmaceutical students on drug promotion and interactions with the industry, Cognition at the Max Planck Institute in Germany, told the BMJ/The Bureau: “The 2000. Professor Osterhaus told the BMJ that he had always been transparent about any including conflicts of interest. She thinks that caution is advised when working with Other experts soon followed suit—recommending the role neuraminidase inhibitors problem is not so much that communicating uncertainty is difficult, but that uncertainty work he has done with industry. Professor Nicholson similarly has consistently declared medical bodies of this sort. could play in any future pandemic—in both the academic literature and in the general was not communicated. There was no scientific basis for the WHO’s estimate of2 his connections with pharmaceutical companies, for example, in papers published in media. billion for likely H1N1 cases, and we knew little about the benefits and harms of the journals such as the BMJ and Lancet. “It is legitimate for WHO to work with industry at times. But I would have concerns vaccination. The WHO maintained this 2 billion estimate even after the winter season in about involvement with a group that looks like it is for independent academics that is Food and Drug Administration Australia and New Zealand showed that only about one to two out of 1000 people were Both experts were also at that time engaged in a randomised controlled trial on actually mainly industry funded,” she told the BMJ/The Bureau, adding: “The Institute infected. Last but not least, it changed the very definition of a pandemic.” oseltamivir supported by Roche. The trial was subsequently published in the Lancet in of Medicine has raised concerns about the need to have a firewall with medical groups. While the excitement over these drugs fuelled scientific symposiums, the US Food and 2000.(3) It remains one of the main studies supporting oseltamivir’s effectiveness— To me this does not sound like an independent group, as it is mainly funded by Drug Administration (FDA) was less than convinced. The BMJ/The Bureau has since WHO for years had defined pandemics as outbreaks causing “enormous numbers of and one that was subsequently shown to have employed undeclared industry funded manufacturers.” spoken to people from within the American and European drug regulators, the FDA and deaths and illness” but in early May 2009 it removed this phrase—describing a measure ghostwriters.(1) the European Medicines Agency (EMEA), who said that both regulators struggled with of severity—from the definition.(2) She also thinks that there is a difference between the conflict of interest in having the paucity of the data presented to them for zanamivir and oseltamivir, respectively, The influence of the European Scientific Working Group on Influenza would continue a clinical trial funded by a company and the conflict of interest in being involved in during the licensing process. At the end of last year, the BMJ called for access to raw The beginnings as the decade wore on and the calls for pandemic planning became more strident. marketing a drug—for example, on a paid speaker’s bureau or in marketing material. data for key public health drugs after the Cochrane Collaboration found the effectiveness Founded in 1992, this “multidisciplinary group of key opinion leaders in influenza aims “Some academic medical departments, for example Stanford University, have banned of the drugs impossible to evaluate.(8) The group are continuing to negotiate access The routes to the Council of Europe’s criticisms can be traced back to 1999, a pivotal to combat the impact of epidemic and pandemic influenza” and claims links to WHO, staff from being involved in marketing or being on a paid speakers bureau,” she said. to what they say they need to fully assess the effectiveness of antivirals. year in the influenza world. In April that year WHO—spurred on by the 1997 chicken flu the Robert Koch Institute, and the European Centre for Disease Prevention and Control, outbreak in Hong Kong—began to organise itself for a feared pandemic. It drew up a among others.(4) Despite the group’s claims of scientific independence its 100% The presence of leading influenza scientists at promotional events for oseltamivir In the US, the FDA first approved zanamivir in 1999.(9) Michael Elashoff, a former key document, Influenza Pandemic Plan: The Role of WHO and Guidelines for National industry funding does present a potential conflict of interest. One if its roles is to lobby reflected not just the concern of an impending pandemic, but the excitement over the employee of the FDA, was the statistician working on the zanamivir account. He told and Regional Planning. politicians, as highlighted in a 2009 policy document.(5) potential of a new class of drugs—neuraminidase inhibitors—to offer treatment and the BMJ how the FDA advisory committee initially rejected zanamivir because the drug protection against seasonal influenza. lacked efficacy. WHO’s first influenza pandemic preparedness plan was stark in the scale of the risk At a pre-pandemic preparation workshop of the European Scientific Working Group on the world faced in 1999: “It is impossible to anticipate when a pandemic might occur. Influenza in January last year, Professor Osterhaus said: “I can tell you that ESWI is In 1999 two new drugs first came to market: oseltamivir, from Roche; and zanamivir, After Dr Elashoff’s review (he had access to individual patient data and summary study Should a true influenza pandemic virus again appear that behaved as in 1918, even working on that idea [that is, convincing politicians] quite intensively. We have contact manufactured by what is now GlaxoSmithKline. The two drugs would battle it out over reports) the FDA’s advisory committee voted by 13 to 4 not to approve zanamivir on the taking into account the advances in medicine since then, unparalleled tolls of illness with MEPs [members of the European Parliament] and with national politicians. But it the coming years, with oseltamivir—aided by its oral administration—trumping its rival grounds that it was no more effective than placebo when the patients were on other and death would be expected.” is they who have to decide at the end of the day, and they will only act at the request in global sales as the decade wore on. drugs such as paracetamol. He said that it didn’t reduce symptoms even by a day. of their constituencies. If the latter are not prompted, nothing will happen.” In the small print of that document it states: “R Snacken, J Wood, L R Haaheim, A P The potential was quickly grasped. Indeed, that year Professor Osterhaus published an “When I was reviewing the data, I tried to replicate the analyses in their summary Kendal, G J Ligthart, and D Lavanchy prepared this document for the World Health The group’s policy plan for 2006-10 specifically stated that government representatives article proposing the use of neuraminidase inhibitors in pandemics: “Finally, during a study reports. The issue was not of data quality, but sensitivity analyses showed even Organization (WHO), in collaboration with the European Scientific Working Group needed to “take measures to encourage the pharmaceutical industry to plan its possible future influenza pandemic, in view of their broad reactivity against influenza less efficacy,” he said. “The safety analysis showed there were safety concerns, but the on Influenza (ESWI).” What this document does not disclose is that ESWI is funded vaccine/antivirals production capacity in advance” and also to “encourage and support virus neuraminidase subtypes and the expected lack of sufficient quantities of vaccine, focus was on if Glaxo had demonstrated efficacy.” Dr Elashoff’s view was that zanamivir entirely by Roche and other influenza drug manufacturers. Nor does it disclose that research and development of pandemic vaccine” and to “develop a policy for antiviral the new antivirals will undoubtedly have an essential role to play in reducing the was no better than placebo—and it had side effects. And when the FDA medical René Snacken and Daniel Lavanchy were participating in Roche sponsored events the stockpiling.” It also added that government representatives needed to know that number of victims.”(7) reviewer made a presentation, her conclusion was that it could either be approved or previous year, according to marketing material seen by the BMJ/The Bureau. “influenza vaccination and use of antivirals is beneficial and safe.” It said that the group not approved. It was a fairly borderline drug. provided “evidence based, palatable information”; and also “networking/exchange However, he also warned that antivirals should not be seen as a replacement for Dr Snacken was working for the Belgian ministry of public health when he wrote about with other stakeholders (eg, with industry in order to establish pandemic vaccine and vaccinations. “Close collaboration and consultation between, on the one hand, There were influenza experts on the FDA’s advisory committee and much ofthe studies involving neuraminidase inhibitors for a Roche promotional booklet. And Dr antivirals contracts).” In the meantime, in Roche’s own marketing plan, one goal was to companies marketing influenza vaccines and, on the other, those marketing antivirals discussion hinged on why a drug that looked so promising in earlier studies wasn’t Lavanchy, meanwhile, was a WHO employee when he appeared at a Roche sponsored “align Roche with credible third party advocates”. They “leveraged these relationships will therefore be absolutely essential. It is important that a clear and uniform message working in the largest trials in the US. One hypothesis was that people in the US were symposium in 1998. His role at that time was in the WHO Division of Viral Diseases. Dr by enlisting our third-party partners to serve as spokespeople and increase awareness indicating the complementary roles of vaccines and antivirals is delivered.” taking other drugs for symptomatic relief that masked any effect of zanamivir. Lavanchy has declined to comment. of Tamiflu and its benefits.”(6)

158 159 So zanamivir might have no impact on symptoms over and above the baseline In documents obtained under the freedom of information legislation, two of the Two years later the WHO published a key report from that meeting, WHO Guidelines for WHO. Professor Nicholson told the BMJ/The Bureau that he last had “financial medications that people take when they have influenza. experts who provided opinions during the EMEA licensing process have also featured on the Use of Vaccines and Antivirals during Influenza Pandemics 2004. The specific relations” with Roche in 2001. When asked if he had signed a declaration of interest in Roche marketing material: Annike Linde and Rene Snacken. In Dr Snacken’s EMEA guidance on antivirals, Considerations for the Use of Antivirals During an Influenza form for WHO, Prof Nicholson replied: “The WHO does require attendees of meetings, Two other trials—one in Europe and one in Australia— showed a bit more promise. But presentation dated 18 February 2002, he discussed the need for chemoprophylaxis Pandemic, was written by Fred Hayden. Professor Hayden has confirmed to the BMJ/ such as those held in 2002 and 2004, to complete declarations of interest.” there was a very low rate of people taking other medications. “So in the context of and called for the use of oseltamivir during a pandemic. He made his presentation as The Bureau in an email that he was being paid by Roche for lectures and consultancy not being allowed to take anything for symptomatic relief, there might be some effect a representative of the Belgian Ministry of Public Health. At the time Dr Snacken was work for the company at the time the guidance was produced and published. He also Leaving aside the question of what declarations experts made to WHO, one simple fact of Relenza. But in the context of a typical flu, where you have to take other things to also “liaison officer” for the European Scientific Working Group on Influenza. He also told us in an email that he had received payments from GlaxoSmithKline for consultancy remains: WHO itself did not publicly disclose any of these conflicts of interest when it manage your symptoms, you wouldn’t notice any effect of Relenza over and above played a key role in the Belgian government during its pandemic planning, and he later and lecturing until 2002. According to Prof Hayden: “DOI [declaration of interest] forms published the 2004 guidance. It is not known whether information about these conflicts those other things,” Dr Elashoff said. The advisory committee recommended that the became a senior expert at the Preparedness and Response Unit, European Centre for were filled out for the 2002 consultation.” of interest was relayed privately to governments around the world when they were drug should not be approved. Disease Prevention and Control. We do not know what, if anything, he declared to the considering the advice contained in the guidelines. EMEA about his relationship with Roche. The WHO guidance concluded that: “Based on their pandemic response goals and Nevertheless, FDA management decided to overturn the committee’s resources, countries should consider developing plans for ensuring the availability of The year before WHO issued the 2004 guidance, it published a set of rules on how recommendation. Annike Linde has confirmed in an email that she has had connections with Roche over antivirals. Countries that are considering the use of antivirals as part of their pandemic WHO guidelines should be developed and how any conflicts of interest should be a number of years. She made a presentation to the EMEA on “influenza surveillance” in response will need to stockpile in advance, given that current supplies are very limited.” handled. This guidance included recommendations that people who had a conflict “They would feel better if there was something on the market in case of a pandemic. her capacity as a representative of the Swedish Institute for Infectious Disease. Again, Many countries around the world would adopt this guidance. of interest should not take part in the discussion or the piece of work affected by It wasn’t a scientific decision,” Dr Elashoff said. it is not clear what, if anything, she declared to the EMEA concerning her previous that interest or, in certain circumstances, that the person with the conflict should not relationship with Roche. The previous year Professor Hayden was also one of the main authors of a Roche participate in the relevant discussion or work at all. The WHO rules make provision for While Dr Elashoff was working on the zanamivir review, he was assigned the oseltamivir sponsored study that claimed what was to become one of oseltamivir’s main selling the director general’s office to allow declarations of interest to be seen if the objectivity application. But when the review and the advisory committee decided not to recommend Dr Linde, now the Swedish state epidemiologist, has told the BMJ/The Bureau that she points—a claimed 60% reduction in hospitalisations from flu, which the Cochrane of a meeting has been called into question.(18) zanamivir, the FDA’s management reassigned the oseltamivir review to someone else. received payments from Roche International in respect of various pieces of work she Collaboration was later unable to verify.(8) Dr Elashoff believes that the approval of zanamivir paved the way for oseltamivir, which did for the company until 2002. She has subsequently given occasional lectures for The BMJ/The Bureau has asked WHO for the conflict of interest declarations for the was approved by the FDA later that year. Roche Sweden. All money she has received from Roche was given, Dr Linde says, to Our investigation has also identified relevant and declarable interests relating to the Geneva 2002 meeting and those related to the guidance document itself. WHO told the Swedish Institute for Infectious Disease Control. two other named authors of annexes to WHO’s 2004 guidelines. Arnold Monto was us that the query went directly up to Margaret Chan’s office. “WHO never publishes European Medicines Agency the author of the annexe dealing with vaccine usage in pandemics. Between 2000 and individual DOIs [declaration of interest], except after consultation with the Office of We asked the scientists whether they declared their relationship with Roche at the time 2004—and at the time of writing the annexe—Dr Monto has consistently and openly the Director-General. In this case, we put in a request on your behalf but it was not In Europe the EMEA was similarly troubled by the evidence for oseltamivir. By early to the EMEA. Neither has answered that question entirely satisfactorily. Dr Snacken has declared honorariums, consultancy fees, and research support from Roche, (10) (11) granted. In more recent years, many WHO committees have published summaries of 2002 Roche had sought a European Union-wide licence from the EMEA. It was a lengthy not replied to repeated emails posing this question. Dr Linde responded by telling the (12) consultancy fees and research support from GlaxoSmithKline (10) (12) (13) (14) relevant interests with their meeting reports.” process, taking three meetings of the Committee for Medicinal Products for Human BMJ/The Bureau: “We contribute with our expertise to the regulatory agencies when ; and also research funding from ViroPharma.(15) Use as well as expert panels, according to one of the two rapporteurs, Pekka Kurki of asked. When we do so, a declaration of interest, where e.g. participation at advisory In a BMJ interview (see film on bmj.com), WHO spokesperson Gregory Hartl reiterated the Finnish Medicines Agency. Echoing the Cochrane Collaborations’s 2009 findings(6) meetings at Roche, is given and evaluated by the regulatory agency.” The BMJ/The No conflict of interest statement was included in the annex he wrote for WHO. When the fact that Dr Margaret Chan, “is very committed personally to transparency.” Yet her Kurki told us: “We discussed the same issues that are still discussed today: does it Bureau requested Linde and Snacken’s declaration of interest statements for the 2002 asked if he had signed a declaration of interest form for WHO, Dr Monto told the BMJ/ office has turned down repeated requests for declaration of interest statements and show clinically significant benefits in treatment and prophylaxis of flu and what was meeting from the EMEA under the freedom of information act. The EMEA was unable The Bureau: “Conflict of Interest forms are requested before participation in any WHO declines to comment on the allegations that authors of the guidelines had declarable the magnitude of the benefits presented in the RCTs? Our assessment and Cochrane’s to provide statements for those particular people at that time. meeting”. interests. in 2009 are very similar with regard to the effect size in RCTs. The data show that the effects of Tamiflu were clear but not very impressive. Developing the guidelines Professor Karl Nicholson is the author of the third annex, Pandemic Influenza. According Nevertheless, Prof Hayden told the BMJ/The Bureau: “I strongly support transparency to declarations made by Professor Nicholson in the BMJ(16) and Lancet in 2003,(17) in declarations of interest, in part because this allows those reading documents, “What was unclear and is still unclear is what is the impact of Tamiflu on serious In October 2002 WHO convened a meeting of influenza experts at its Geneva he had received travel sponsorship and honorariums from GlaxoSmithKline and Roche particularly ones authored by specific individuals (eg, Annex 5) [the part he wrote], to complications. Circulating influenza was very mild when Tamiflu was developed and headquarters. Their purpose was to develop WHO’s guidelines for the use of vaccines for consultancy work and speaking at international respiratory and infectious diseases make their own judgments about the possible relevance of any potential conflicts.” therefore it is very difficult to say anything about serious complications. The data did and antivirals during an influenza pandemic. symposiums. Before writing the annexe, he had also been paid and declared ad hoc not clearly show an effect on serious complications—it was not demonstrated by the consultancy fees by Wyeth, Chiron, and Berna Biotech. While experts need to work with industry to develop the best possible drugs for RCTs.” Included at this meeting were representatives from Roche and Aventis Pasteur and illnesses, questions remain about what level of involvement experts with industry three experts who had lent their name to oseltamivir’s marketing material (Professors Even though the previous year these declarations had been openly made in the Lancet ties should have in the formulation of public health policy decisions and guidelines. Karl Nicholson, Ab Osterhaus, and Fred Hayden). and the BMJ, no conflict of interest statement was included in the annex he wrote Professor Nicholson told the BMJ/The Bureau: “The WHO and decision makers must be

160 161 informed of ongoing developments and research findings to ensure that they are as up be the principal medical intervention in a pandemic situation and Roche is working as a This is a troubling stance: it suggests that WHO considers other advisory groups whose quarter and the last quarter of 2009. As a national official of the Japanese government, to date as possible. Some of the most relevant expertise and information are held by responsible partner with governments to assist in their pandemic planning.” The source members are not anonymous —such as the Strategic Advisory Group of Experts on Dr Tashiro says that he must “have nothing concerning conflict of interest with private companies or individuals with conflicts of interest. I understand the view that experts reference for this is the WHO Global Influenza Preparedness Plan. Immunization—to be potentially subject to outside influences, and it allows no scrutiny companies”. Dr John Wood works for the UK National Institute for Biological Standards with conflicts of interest should not advise governments or organisations such as the of the scientists selected to advise WHO and global governments on a major public and Control (NIBSC). Dr Wood, like Dr Tashiro, has no personal conflict of interests but WHO. But to exclude such people from discussions could deprive WHO and decision Throughout the following years, WHO would appear to have been inconsistent in how health emergency. he told the BMJ/The Bureau that as part of its statutory role in developing standards makers of important new information.” it treated conflicts of interest. Updated pandemic plans would continue to be prepared for measurement of biological medicines to ensure accurate dosing and carrying out by experts who openly had work funded and acted as consultants to manufacturers Under the International Health Regulations framework, the membership of the independent control testing to assure their safety and efficacy, the institute must work But not everyone agrees. Barbara Mintzes is unequivocal about what role they should of vaccines and antivirals. WHO produced its global influenza preparedness plan in Emergency Committee is drawn from a roster of about 160 experts covering a range of closely with the pharmaceutical industry. This is made clear on their website. play. “No one should be on a committee developing guidelines if they have links to 2005, and in 2006 it constituted an interim Influenza Pandemic Task Force. No public public health areas. This framework provides guidelines about how WHO deals with acute companies that either produce a product—vaccine or drug—or a medical device or declarations of interest have been made and to date no details have been provided by public health risks. The BMJ/The Bureau has identified approximately 15 scientists from “The International Federation of Pharmaceutical Manufacturers and Associations has test for a disease. It would be preferable that there are no financial ties when it comes WHO in response to our requests. the International Health Regulations roster with influenza expertise and has emailed also made publicly available the nature of their close interaction with NIBSC and similar to making big decisions on public health—for example, stockpiling a drug—and that WHO’s stance that it does not publish declarations of interest from its experts is far from them to ask if they were on the Emergency Committee. Under the framework at least organisations in order to develop influenza vaccines,” he said.(21) includes if they have a currently funded clinical trial,” she said. consistent. It is undermined, for example, by the position WHO adopts in relation to some of these scientists are members of the Emergency Committee. Yet because of the the Strategic Advisory Group of Experts on Immunization, its standing vaccine advisory confidentiality agreements they have signed, these scientists cannot acknowledge their Those who said that they were not on the committee include David Salisbury, Alan “Ideally, what you want are independent experts who are in the public sector to provide body. Here, contrary to its approach to pandemic planning advisers, WHO does publish membership of the committee, putting them in an invidious position. Hampson, Albert Osterhaus, Donato Greco, and Howard Njoo. Maria Zambon, from expertise on drugs and vaccines. But they can be hard to find. One solution is consult summaries of declarations of interest. the UK’s Health Protection Agency told the BMJ: “I undertake various advisory roles to with the experts who are involved in industry, but not put them on any decision making David Salisbury, chair of WHO’s Strategic Advisory Group of Experts on Immunization WHO. Declaration of interest statements are prepared before undertaking such roles. committee. You need a firewall,” she added. Emergency Committee (SAGE) committee at the time of the pandemic and a member of the International Health Regulations, says the secrecy has caused problems for his group. “It certainly “The HPA Centre for Infection, as part of its role in national infectious disease Indeed, Professor Harvey Fineberg, president of the Institute of Medicine and chairman These seeming inconsistencies in WHO’s approach to transparency and its handling of caused problems for SAGE. Since all of the details of SAGE are in the public domain, surveillance, provision of specialist and reference microbiology and vaccine efficacy of the panel reviewing WHO’s management of the pandemic, takes a similarly hard conflicts of interest extend into the workings of the Emergency Committee formed last there was a perception that it had been SAGE that had given advice about the changing monitoring, works closely with vaccine manufacturers and biotechnology companies.” line. His own institution went through a detailed review of how they interact with year to advise the director general on the pandemic. The identities of its 16 members of definitions or the pandemic levels—when we had not done so. SAGE members came industry and experts with conflicts of interests last year.(19) “Sometimes publication of are unknown outside WHO. This secret committee has guided WHO pandemic policy in for unfair personal abuse by journalists,” he told the BMJ/The Bureau. International Health Regulations review conflict of interests is enough—for example with a journal. But if you are giving expert since then—including deciding when to judge that the pandemic is over. judgment to influence policy, revealing is not enough,” he told the BMJ, referring to the “Given the importance of the advice, the transparency of the source of the advice was WHO’s own review into the operation of the International Health Regulations and WHO’s Institute of Medicine’s policy. WHO says it has to keep the identities secret to protect the scientists from being important. I believe it is necessary to keep confidential the source of advice if revealing handling of the pandemic is now being conducted by Harvey Feinberg, president of the influenced or targeted by industry. In a phone call to the BMJ/The Bureau in March, details might put individuals at risk, for example when bioterrorism is being discussed. US Institute of Medicine, and will report its findings next year. Dr Chan and Professor WHO also says that it takes conflicts of interests seriously and has the mechanisms WHO spokesperson Gregory Hartl explained: “Our general principle is we want to This does not seem to be the case for pandemic flu,” he added. Feinberg have both made clear the need for a thorough investigation. But questions in place to deal with them. But what action does it take when a scientist declares a protect the committee from outside influences.” are already arising about how independent the review will turn out to be. According to conflict of interest, and when does it judge a scientist to be too conflicted to play a The secrecy of the committee is also fuelling conspiracy theories, particularly around the International Health Regulations list in our possession, some 13 of the 29 members leading role in the formulation of global health policy? Since WHO has not provided us The committee advised the WHO director general on phase changes as well as the activation of dormant pandemic vaccine contracts. A key question will be whether of the review panel are members of the International Health Regulations itself and one with an answer to this question, we are left to guess. temporary recommendations. According to WHO, When the Emergency Committee the pharmaceutical companies, which had invested around $4bn (£2.8bn, €3.3bn) in is the chair of the Emergency Committee. To critics that might suggest a somewhat met to discuss a possible move to a declaration of a pandemic, the meeting additionally developing the swine flu vaccine, had supporters inside the emergency committee, incestuous approach. As it stands, this situation is the worst possible outcome for WHO, according to Professor included members who represented Australia, Canada, Chile, Japan, Mexico, Spain, who then put pressure on WHO to declare a pandemic. It was the declaring of the Chris Del Mar, a Cochrane Review author and expert on WHO’s Strategic Advisory the UK, and the US, eight countries that experienced widespread outbreaks at the pandemic that triggered the contracts. Professor Mintzes does not agree with WHO’s explanation that secrecy was needed to Group of Experts on Immunization group. “If it proves to be the case that authors of time. These national representatives were present to ensure full consideration of the The BMJ/The Bureau can confirm that Dr Monto, Dr John Wood, and Dr Masato Tashiro protect against the influence of outside interest on decision making. “I can’t understand WHO guidance which promoted the use of certain drugs were being paid at the same views and possible reservations of the countries expected to bear the initial brunt of are members of the Emergency Committee. why the WHO kept this secret. It should be public in terms of accountability like the time by the makers of those drugs for other work they were doing for these companies economic and social repercussions. expert advisory committees. If the rationale of secret membership is not to be unduly that is reprehensible and should be condemned in the strongest possible terms.” Although Dr Monto did not answer the question directly, his Infectious Disease Society influenced, there are other ways of dealing with this through strong conflict of interest WHO says all members of the Emergency Committee sign a confidentiality agreement, of America biography states that he is a member.(20) provisions,” she said. WHO’s endorsement of oseltamivir was not lost on Roche. In an advert placed by the provide a declaration of interests, and agree to give their consultative time freely, company for the drug in the main conference programme of the European Scientific without compensation. However, only one member of the committee has been publicly Last year, according to figures made public in the US by GlaxoSmithKline, Professor She also believes that the very nature of allowing a trigger point for vaccine contracts Working Group on Influenza’s 2005 conference in Malta, it says: “Antivirals will initially named: Professor John MacKenzie, who chairs it. Monto received $3000 speakers fees from the company in the period between the second opens the system up unnecessarily to exploitation. “It seems a problem that this

162 163 declaration might trigger contracts to be realised. There should be safeguards in place 12 Herlocher ML, Truscon R, Elias S, Yen HL, Roberts NA, Ohmit SE, et to make sure those with an interest in vaccine manufacturers can’t exploit the situation. al. Influenza viruses resistant to the antiviral drug oseltamivir: transmission The WHO will have to look long and hard at this in future,” she said. studies in ferrets. J Infect Dis 2004;190:1627-30. national juries 13 Monto AS, Pichichero ME, Blanckenberg SJ, Ruuskanen O, Cooper The number of victims of H1N1 fell far short of even the more conservative predictions C, Fleming DM, et al. Zanamivir prophylaxis: an effective strategy for by the WHO. It could, of course, have been far worse.. Planning for the worst while the prevention of influenza types A and B within households. J Infect Dis hoping for the best remains a sensible approach. But our investigation has revealed 2002;186:1582-8. damaging issues. If these are not addressed, H1N1 may yet claim its biggest victim— 14 Herlocher ML, Truscon R, Fenton R, Klimov A, Elias S, Ohmit SE, et the credibility of the WHO and the trust in the global public health system. al. Assessment of development of resistance to antivirals in the ferret model of influenza virus infection. J Infect Dis 2003;188:1355-61 Competing interests: PC declares no competing interests. DC has been paid expenses 15 Fendrick AM, Monto AS, Nightengale B, Sarnes M. The economic by WHO for giving talks at two conferences. burden of non-influenza-related viral respiratory tract infection in the United States. Arch Intern Med 2003;163:487-94. 16 Cooper NJ, Sutton AJ, Abrams KR, Wailoo A, Turner D, Nicholson KG. Effectiveness of neuraminidase inhibitors in treatment and prevention 1 Cohen D. Complications: tracking down the data on oseltamivir. BMJ of influenza A and B: systematic review and meta-analyses of randomised 2009;339:b5387. controlled trials. BMJ 2003;326:1235. 2 Doshi P. Calibrated response to emerging infections. BMJ 2009;339: 17 Nicholson KG, Wood JM, Zambon M. Influenza. Lancet 2003;362:1733- b3471. 45. 3 Nicholson KG, Aoki FY, Osterhaus AD, Trottier S, Carewicz O, Mercier 18 World Health Organization. Guidelines for WHO guidelines. World CH, et al. Efficacy and safety of oseltamivir in treatment of acute influenza: Health Organization, 2003. a randomised controlled trial. Lancet 2000;355:1845-50. 19 National Academies. Policy and procedures on committee composition 4 European Scientific Working Group on Influenza. About ESWI. www. and balance and conflicts of interest for committees used in the development eswi.org/who-are-we/about-eswi. of reports. www.nationalacademies.org/coi/index.html. 5 European Scientific Working Group on Influenza. Revised policy plan 20 Infectious Disease Society of America. Congratulations to the 2009 2006-2010. www.eswi.org/userfiles/files/ESWI%20policy%20plan%20200 Society Award Recipients. www.idsociety.org/Content.aspx?id=15497. 6-2010.doc. 21 International Federation of Pharmaceutical Manufacturers and 6 Holmes Report. Tamiflu launch media campaign. www.holmesreport. Associations Influenza Vaccine Supply International Task Force. WHO com/story.cfm?edit_id=71&typeid=4. influenza virus surveillance system and influenza vaccine production. 7 Osterhaus A, de Jong J. Prophylactic role. www.eswi.org/modulefiles/ 2008. www.ifpma.org/Influenza/content/pdfs/WHO_IGM/06_2008_WHO_ publications/pdfs/no-10-december-1998.pdf. Influenza_Virus_Surveillance_System.pdf. 8 Jefferson T, Jones M, Doshi P, Del Mar C. Neuraminidase inhibitors Cite this as: BMJ 2010;340:c2912 for preventing and treating influenza in healthy adults: systematic review and meta-analysis. BMJ 2009;339:b5106. 9 US Food and Drug Administration. FDA approved drugs for influenza. Deborah Cohen www.fda.gov/drugs/drugsafety/informationbydrugclass/ucm100228. features editor, BMJ htm#ApprovedDrugs. Philip Carter 10 Monto AS, Gravenstein S, Elliott M, Colopy M, Schweinle J. Clinical journalist, The Bureau of Investigative Journalism, London signs and symptoms predicting influenza infection. Arch Intern Med [email protected] 2000;160:3243-7 11 Monto AS, Rotthoff J, Teich E, Herlocher ML, Truscon R, Yen HL, et al. Detection and control of influenza outbreaks in well-vaccinated nursing home populations. Clin Infect Dis 2004;39:459-64.

164 165 Annemarie Huber, chair austria Christian De Bruyne, chair belgium Annemarie Huber has been spokesperson and Head of the press section of the European Commission Representation in Austria since 2005. Deputy Head of the Representation of the European Commission in Belgium She has been working for the European Commission in several press-related functions since 1997. Previously, Annemarie Huber worked for the European Parliament as spokesperson of an Austrian MEP, as a journalist and as a communication consultant in the field of Public Relations. She studied English Literature and Linguistics and German Literature and Linguistics.

Karin Kirschbichler, journalist Miguel Lardennois, health expert

Karin Kirschbichler is editor-in-chief of the specialised journal “Medizin populär”. “Medizin populär” is Austria’s most successful health magazine Belgian registered nurse. After basic nursing courses he obtains a master in public health at the French speaking Catholic University of Louvain. with a monthly circulation of 106.000. Kirschbichler was born in 1967. She studied German Literature and Linguistics, English Literature and He has also obtained a post-master degree in Health Quality Management and in Public Health Research. History of Art at the University of Zürich, Switzerland. She has been working as a journalist in Vienna since 1996. The last 4 years he has been working as scientific collaborator for the Belgian public health ministry, and until this year as a Chief Nursing Of- ficer.

Josef Gebhard, journalist Ricardo Gutiérrez, journalist

Health and science editor of the daily newspaper “Kurier”. Ricardo Gutiérrez works as a journalist in the daily newspaper Le Soir since March 1990. He is writing about health, politics and civil rights topics. He started his journalistic career in 1999 as a freelance health editor for a health website. Since 2000 he is health and science editor of the daily He has also been the president of the “Société des Journalistes professionnels du Soir” (SJPS) from 2002 until 2006. newspaper “Kurier”. From 2005-2007 he additionally worked as freelance editor for a motor magazine (“auto touring”). In 2006 he received the He holds a diploma from the Université libre de Bruxelles (ULB) and he is responsible for several courses in the Brussels Journalism Institute award for health journalism by the Austrian religious order hospitals. (IJD) since 2003 and an assistant in the ULB. Since February 2007 he is Council member of the “Association des Journalistes professionnels” (AJP). Franz Pietsch, health expert

Franz Pietsch is Deputy Director General of Directorate and has been head of Department II/1 at the Federal Ministry of Health since July 2010. In the latter position he is Ombudsman for the Protection of Non-Smokers and is in charge of subject-related and legal matters concerning tobacco, alcohol and non-substance addiction as well as international drug affairs. Before that Mr. Pietsch served as Personal Assistant to the Austrian State Secretayr for Health & Deputy Head of Cabinet (2000 – 2002) a.o. Since 2002 he has been a Full Member of the Board of Direc- tors of the EMCDDA. Mr. Pietsch was born in 1960.

Clemens Martin Auer, health expert

Clemens Auer has been Director General at the Federal Ministry of Health since September 2005. In this position he is responsible for general management, coordination of health policy, legal affairs, health-economics and e-health. From March 2003 to January 2007 he was Head of Cabinet and in that capacity one of the architects of the 2004/2005 Health Reform in Austria. Clemens Auer was born in 1957.

166 167 Lili Voynova, journalist bulgaria Georges Eliopoulos, chair cyprus Lili Voynova works in Dnevnik business daily as a journalist covering health issues. She has been writing about the health system in Bulgaria Press Officer since the start of its reform in 2000. Before starting her career in Dnevnik, she was editor in chief of Zdrave (Health) magazine and reporter for European Commission Representation in Cyprus Demokracia daily, Standart daily. She is a graduate of philology and journalism.

Yanin Zdravkova, journalist Stella Kyriakides, health expert

Yanin Zdravkova is one of the most active and often quoted health journalists. She has been working in this area for more than 10 years and is Stella Kyriakides is a clinical Psychologist, member of the Parliament and president of Europa Donna Cyprus. She holds a BA in Psychology (Read- one of the most distinguished journalists in Bulgaria. She has been awarded the ‘Dimitur Peshev’ journalist award for two publications exploring ing University, UK) and a MA in Psychology (Manchester University, UK) and child psychology (Institute of Psychiatry in London). She worked the roles of social, economic and political factors in problems with health protection in the Roma community. as a clinical psychologist in the Mental Health Services of the Ministry of Health (1979-2006) and in the Department of Child and Adolescent Psychiatry at the “Makarios III” hospital in Nicosia (1986-2006). She was president of the European breast Cancer coalition “Europa Donna” during 2003-2005. She is the president of Cyprus Breast Cancer Forum “Europa Donna Cyprus”. Momchil Enchev, health expert Andreas Kannaouros, journalist Momchil Enchev is the head of the department “Projects and Programs” and of the directorate of medical activities, for the Ministry of Health. He is also a member of the Bulgarian Physicians Union. Momchil Enchev’s key qualifications are the coordination and the planning of the devel- Andreas Kannaouros started his career as journalist in 1952. He was a founding member of the Union of Cyprus Journalists (1959) of which opment of National Health Strategy, the design and management of National Health Programs and the coordination and control of the imple- he has served at times as Vice-President and Secretary-General. He has been President of the Union since 1979. He was alternate member of mentation of the National Health Policy. Mr Enchev received the master’s degree in Medical Informatics and Health Management at the Medical the Executive Committee of the International Federation of Journalists. Mr Kannaouros has played an active role in the struggles and efforts to University in Sofia. ensure and safeguard Press freedom, the freedom of expression and human rights.

Prof. Draga Toncheva, health expert Dr Eleni Theocharous, health expert Prof. Draga Toncheva is the head of Department of Medical Genetics in the Medical University of Sofia. She has received several professional and scientific Awards such as the Golden medal from the Ministry of Education Bulgaria. She is also member of several Scientific Organizations: Dr Eleni Theocharous is associate professor of Pediatric Surgery and member of the European Parliament. From 2001 until 2009 she was the Correspondent Member of the Bulgarian National Academy of Medicine (BNAM) Shadow Health Minister for Cyprus and the Party Health Spokesperson. She is member of international voluntary non-governmental organisa- Member of European Advisory Council of European Cytogenetics Association (ECA) tions providing medical, environmental and humanitarian aid in stricken areas and received many international awards for her work. Mr Theo- Member of the Scientific Programme Committee of the European Society of Human Genetics (ESHG). charous is also a writer and poet and has published five poetry collections.

Elitsa Zlateva, European Commission Lenia Karatzia, journalist

Lenia Karatzia studied Law at Athens University and followed a three month course in Journalism at Panteio University. Throughout 1988 she worked as an editor for the newspapers “Empros”, “Eleftheria tis Gnomis” and “Epikeri”. Since December 1988 she has been working for the media group “O Phileleftheros”, at first proof readingand writing her own weekly column “Ta Anthropina” which she continued for over ten years. For the next three years she was legal editor for “O Phileleftheros” newspaper and following she edited (proof reading) “Down Town” magazine. Since October 2008 she has been chief editor of “Life” magazine.

168 169 Klára Rundová, chair czech republic Jan Schmidt, chair denmark

Marie Hejlová, journalist Head of the Representation of the European Commission in Denmark

Mgr. Marie Hejlová was born on 5th September 1968 in Strakonice, South Bohemia. She graduated from the Charles University in Prague at the Faculty of Social Sciences. At the same time she worked for Dailies Bohemia as a regional journalist. In 1997, she assisted in foundation of a monthly magazine Puls at the Sanoma Magazines Praha Publishing. For five years she wrote for the sections of health, nutrition, psychology and family. From 2002, she worked in public relations at the health service. In 2004, she joined the redaction of Viky at Sanoma Magazines Praha Torben Lund, health expert Publishing where she dedicated her work to the section of health and wellness. Since 2005, she has been working for Moje zdraví at Mladá fronta, a.s. Publishing where she became an editor-in-chief after two years. Torben Lund was born 1976 and is a lawyer. From 1981 to 1998 he was a Member of The Danish Parliament (Folketinget) and from 1988 to 1993 Vice- President of The Committee on Health. Afterwards, Lund was employed one year as Minister for Health, before starting to work in Jaroslav Hořejší, journalist 1994 as a political spokesman for the Social Democratic Party. He was a member of the European Parliament from 1999 to 2004 and became Programme editor (dk4 – television) afterwards. From 2007 to 2009, Lund worked as President af Danske Patienter, an umbrella organization Mgr. Jaroslav Hořejší graduated from the Charles University School of Journalism in Prague in 1970 and from the Charles University School of for 13 Danish health organizations. Philosophy in 1983. Initially, he worked as an editor of the “Universita Karlova“ magazine. After 1989 he founded and edited several profes- sional magazines (JAMA-CS, Cor et Vasa, Remedia, and Remedia Populi, Medicina po promoci, Medical Tribune), organized the translation and production of several monographs (Merck Manual, Oxford Handbook of Clinical Medicine) and mediated the information from the world of medi- Peter Qvortrup Geisling, health expert cal science to the general practitioners and the lay public. From 1999 to 2010 he was the Managing Director and Editor-in-Chief of the Medical Tribune CZ Publishing House which, in addition to ten specialized medical magazines, publishes Medical Tribune, the only weekly newspaper for Peter Qvortrup Geisling is a Journalist (Journalisthøjskolen, Aarhus) and a Medical doctor (Aarhus University). Actually, he is studying to become physicians and health workers in the Czech Republic, and Pharmindex Drug List. He was decorated with the Medals of the Charles University a medical special general practitioner. Since 1997, Geisling has made more than 500 TV-programs in DR (The Danish National Broardcaster) School of Medicine I (2003) and Charles University School of Medicine III (2008) for the medical science popularization. about health and disease.

Tomáš Raiter, health expert

Dr. Tomas Raiter studied maths and physics at Charles University, Prague. He is working in measurement of healthcare quality and sociological Kristian Lund, journalist research in several national projects such as: Quality Through the Patient’s Eyes, Quality of Working Life. From 1998 to 2002 he was President of SIMAR – national association of marketing and polling agencies. Mr Raiter is Member of ESOMAR and representative of Ministry of Health of Kristian Lund is currently editor in chief and CEO of Dagens Medicin. Previously he has also been editor in chief of numerous publications, such the Czech Republic in HCQI Responsiveness/Patient Experiences Subgroup, OECD. Publications: Marketing Research in Practice, 1996, Strategic as Norwegian daily ‘Aftenposten’, Danish tabloid ‘BT’, IT magazine ‘Dataid’ and business magazine ‘Borsens Nyhedsmagasin’. Marketing for Healthcare Institutions 2005.

Torben Kitaj, journalist David Marx, health expert Torben Kitaj is currently editor in chief of ‘Ugeskrift for Laeger’, the journal of the Danish medical association. Previously he was also journalist on the national TV program ‘Horisont’, foreign affairs editor of the national daily ‘Information’, and foreign affairs editor on the national TV news programme ‘TV Avisen’. Kitaj Torben has on several occasions been external examiner at the Danish School of Media and Journalism and at the University of Southern Denmark.

170 171 Erkki Bahovski, chair estonia Marjatta Hautala, chair finland Since 2008 Mr Bahovski has been working as Information and Communication Officer at the European Commission Representation in Estonia. Marjatta Hautala is the press officer of the European Commission Representation in Helsinki. Mrs Hautala received her master’s degree in law Before joining the European Commission Representation, he was writing for the newspaper Postimees from 2000 until 2008. He is also member at the University of Helsinki. She has worked as a freelance journalist in the Finnish TV 3 from 1988 until 1989. Mrs Hautala is also a founding of the executive board at the Estonian Foreign Policy Institute and has participated in the jury work of the Estonian new word contest of the member of the “Womens’ Europe” NGO. European Union.

Iris Koort, health expert Maarit Huovinen, journalist

Iris Koort has been working at Telliskivi Medical Center as general practitioner since 1994. She is member of the Estonian Medical Association, Mrs Huovinen is a seasoned journalist specializing in health issues. She has been chair of the board of the Finnish medical journalists’ associa- the Estonian Association of Family Doctors and the Finnish Medical Association Duodecim. tion twice over the years. Mrs Huovinen has worked for several publications and publishing houses, and has written or edited numerous books on topics such as memory, asthma, parenting and sleep. She is currently a freelance writer and editor. Over the years, she has been rewarded for her work as a health journalist and writer. Siim Nahkur, journalist Dr. Ph.D. Harri Vertio, health expert Siim Nahkur is editor in chief of the journal Eesti Arst (est. 1922), co-founder of the journals Perearst and Apteeker and also co-founder and editor in chief of the online medicine portal Med24. He is shareholder of OÜ Celsius Healthcare and MTÜ Korteriühistu Põhja pst 11A. Since 2007 Dr, Ph.D. Harri Vertio is Secretary General of the Cancer Society of Finland since 2003. After a short period of clinical work following his gradua- Siim Nahkur is studying Entrepreneurship and Technology Management at the University of Tartu. tion he has been working in the field of health education and health promotion in various contexts like the Finnish Defence Forces, The National Board of Health and the Finnish Centre for Health Promotion. He describes his present work as applying the principles of health promotion in the work of a major disease-centered NGO. His international work in WHO and UICC has continued since 1980´s. Harri Vertio has written several Vilve Torn, journalist books on health promotion and published a variety of articles, both scientific and others on health policy, health promotion and cancer.

Vilve Torn is executive editor of supplements and EPL health supplement editor at daily Eesti Päevaleht (EPL) since 2003. She studied Estonian Mikko Nenonen, health expert language and literature at the University of Tartu and started her journalist career as a reporter and editor for Oma radio. Mikko Nenonen graduated as physician in 1978 and specialized in general practice in 1987. He got adjunct professor in general practice in 2002 and holds an eMBA since 2004. From 1996 to 2002 Mr. Nenonen has worked as development manager for national healthcare statistics, Ruth Kalda, health expert indicators, and international collaboration (STAKES). He is Senior Health Policy Advisor at Finnish Medical Association (2009-11) and general practitioner in rural Finland (2008-9 and 2011). Mr. Nenonen is a member of the board of directors (Rheumatism Foundation hospital, 2002-7) Since September 2010, Ruth Kalda is professor at the department of Family Medicine and also chair of the department. Her main directions of and a board member of the European Health Management Association (EHMA 2006-2010). research are the factors affecting the work of family doctors and their satisfaction with work and the satisfaction of population with family medi- cal aid. Mrs Kalda is involved in many organisational activities like chairing the Society of the Estonian Family Doctors. She is also member of the Tiina Merikanto, journalist council of EURACT (European Academy of the Teachers of Family Medicine) and member of the advisory board of the journal Eesti Arst. Tiina Merikanto works for YLE, the Finnish Broadcasting Company, Finland’s national public service broadcasting company. YLE operates four national television channels and six radio channels and services complemented by 25 regional radio programmes. Ms Merikanto works in the current affairs department where she specializes in health and social issues. She has made several current affairs reportages in programs such as Ajankohtainen kakkonen and Silminnäkijä. Ms. Merikanto has been rewarded with several special prizes for her journalistic work. She cur- rently chairs the board of the Finnish medical journalists’ association.

172 173 Benoît Sapin, chair france Carsten Lietz, chair germany

Benoit Sapin is in charge of relations with regional press in Provence-Alpes-Cote d’Azur in the Regional Representation of the European Com- Since March 2009 Carsten Lietz is Head of the Press office at the representation of the European Commission in Germany. mission based in Marseille. In the press service of the European Commission in France, he is one of contact points of the institution for regional Before he started at the Commission, he worked as a journalist for the news agency Reuters. He was Head of the Department politics in Ber- journalists. It acts as an interface to facilitate access to current affairs, and enable them to make the most of multiple online services imple- lin. From 2002 till 2007 he reported from Brussels about the European Union and the NATO. Before he came to Reuters in 1999, he studied in mented in one of the largest newsrooms in the world Hanover and Bristol History, Politics, and German Language. At the same time, he was also writing for “Hannoversche Allgemeine Zeitung” and other media.

Dr. Pia Heinemann, journalist Ségolène Aymé, health expert Dr. Pia Heinemann, 34, received her master’s degree in Biology and studied at the University of Mainz. Afterwards she received her PhD in media Ségolène Aymé, médecin généticienne et épidémiologiste de formation, est directeur de recherche à l’INSERM. Elle est la créatrice et la direc- economy with the topics of publisher strategies of science magazines in context to the German media landscape. Since 2007 she is scientific trice d’ORPHANET (www.orphanet.fr) site de référence mondial dédié aux maladies rares et aux médicaments orphelins. Elle est éditrice en editor (shared news desk) at the “Welt”, “Welt am Sonntag” und “Berliner Morgenpost” with a specialisation in medicine and biology. chef de l’ « Orphanet Journal of Rare Diseases », experte auprès de la Commission Européenne. Elle préside la Task Force européenne sur les maladies rares et le « Topic Advisory Group » de l’OMS pour la révision de la Classification Internationale des Maladies dans le domaine des Sabine Kartte, journalist maladies rares. She was born in Berlin in 1958. She studied macroeconomics in Bonn, Innsbruck and Göttingen. Ms Kartte was student at the Henri-Hannen- Anne Pezet, health expert Journalistsschool in Hamburg as well. She worked three years as a freelancer. From 1990 to 2000 she was scientific editor at Spiegel in Hamburg. Since 2000 she has been working at “Stern”, starting as Head of Department science and medicine. Since 2003 Ms Kartte has been editor in After a PhD in human genetics and a MBA at IAE de Paris, Anne Pezet has worked as a scientific and economic journalist for « Biotech Info » chief of “Stern Gesund leben” and since 2008 she has been also additional executive editor. weekly professional newsletter and for the « L’Usine Nouvelle » weekly industrial magazine, where she wrote articles about pharmaceutical and biotech issues. She has published a book « Ces malades qu’on sacrifie » (Bourin éditeur) about the price control of drugs and the French Professor Dr. med. Franz Porszolt, health expert health system. Since September 2010, she is heading a company dedicated to scientific and economic analysis of life sciences (academic and industrial point of view). He was born in Regesnburg in 1945. Medical specialist for hermatology and medical oncology. Alain Dorra, journalist

Médecin et journaliste, il a exercé le journalisme médical pendant quinze ans au sein des rédactions d’”Impact médecin quotidien”, d’”Abstract” Professor Dr. med. Hubertus von Voss, health expert puis de “Panorama du médecin”. Il a en outre collaboré au “Quotidien du médecin”, à “Sciences et Avenir”, à “Marianne” au” Nouvel Observa- teur”, à “Univers santé “ ainsi qu’au “ journal international de médecine”. Univ. Prof. Dr. med. Dr. h. c. Hubertus von Voss is chief executive of INSOPA (Privatinstitut für Soziale Pädiatrie, Jugend- und Adoleszenten- Il est actuellement responsable éditorial du site internet de la Direction générale de la santé (Sante.gouv.fr), dans le cadre de la Mission infor- medizin – Rehabilitationswesen) in Munich and expert in the field of paediatrics. He studied medicine in Freiburg and Munich and specialized mation et communication (Micom). in paediatrics and youth health in Düsseldorf. After his habilitation Mr. von Voss worked for 10 years as head physician at the paediatrics clinic „Florence Nightingale“of the diaconal institution in Düsseldorf. In 1990 he became professor for social paediatrics and youth health at the Ludwig Marie Francoise de Pange, journalist – Maximilians – University in Munich and director of the “Kinderzentrum München”. Mr. von Voss is academic advisor at “rehaKIND” (Interna- tionale Fördergemeinschaft Kinder- und Jugend-Rehabilitation e.V.).

174 175 Carlos Martin Ruiz de Gordejuela, chair greece Adrienn Geges, chair hungary

Carlos Martín Ruiz de Gordejuela was born in Bilbao (Spain) and has a degree in Economics from Deusto University and a degree in Law from Dr. Ágnes Czimbalmos, health expert UNED. He also holds two masters in European Economy from Deusto University and from the Université Libre de Bruxelles. He has worked at a private Law firm, at the Representation Office of the Basque Country in Brussels and at the Hellenic Capital Market Commission. From September Dr. Ágnes Czimbalmos is a paediatrician and psychologist. She holds a master’s in European Studies. She started her career as a practising physi- 1994 he is a civil servant at the European Commission, where he has held different responsibilities in industry and in competition affairs. Since cian and associate professor and later have different positions in the Hungarian public administration. She was a senior advisor of the Ministry 2007 he is the Head of the Press and Media Service at the Representation of the European Commission in Greece. of Health and head of departments at the Health Development Agency. She was the editor of ’Family Medicine Review’. She is the member of the Hungarian Team Europe and gave lectures and published articles related to the role of EU in public health. She is also the author of scientific Haranina Papadoulaki, journalist papers in quality of life research., health expert

Haravgi-Nina Papadoulaki was the European Commission spokesperson for Health and Food Safety until March 2010. Previously to that she Róbert Pilling, journalist served as the European Commission press officer for Health and Consumers and as a media officer for the European Commission. She has studied philology and literature in the University of Thessaloniki, Greece, and she made postgraduate studies on History of Art (Uni- Anna Danó, journalist versity of Salamanca, Spain), Translation and Interpreting Techniques (University of Westminster, London) and on the European Economic Integration and Development (Vrije Universiteit Brussels and Solvay Management School). She speaks fluently English, French, Spanish, Italian Ms Anna Danó is the health publicist of the national daily newspaper Népszabadság. Her main topics: several diseases (e.g. cancer, hearth and she has some knowledge of Portuguese. She was born in Chania, Crete in 1975. diseases, flu, organ donation and transplantation) and hot topics of Hungarian healthcare (e.g. healthcare activity of Hungarian government, health insurance, patient safety, hospitals, doctors).

Michalis Kefalogiannis, journalist Olimpia Solyom, health expert Presenter at ERT (National Public Broadcaster), health reporter for the Athens News Agency and chief editor of Invitro, a magazine about health. Michalis Kefalogiannis has been presenting for several years a weekly TV show on health issues entitled “Health for all”. In 2007 he won the Novo Nordisk Media Prize contest for presenting through his TV show the scientific truth about diabetes in a way that everyone can understand in order to counter the lack of diabetes awareness in Greece.

176 177 Timothy Hayes, chair ireland Anguel Beremliysky, chair italy Head of communications at EU Representation in Ireland He joined the European Commission in October 2008 working for its Representation office in Rome as information and communication officer. Beforehand, he has worked in the private sector as media analyst after having served for two years the Italian Embassy in Sofia, Bulgaria, as press officer. He has also collaborated with several media such as AP Com, l’Occidentale e Standart (Bulgaria).

Donato Greco , health expert Priscilla Lynch, journalist Donato Greco holds a Degree in Medicine and Surgery (University of Naples). He specialized in infectious, tropical and subtropical diseases as Priscilla Lynch has been editor of Irish Medical News, Ireland’s leading weekly medical newspaper, since March 2008, having previously held the well as in preventive medicine and hygiene. From 2003 to 2004, Mr. Greco was Director of the National Centre for Epidemiology, Surveillance roles of Deputy Editor and Reporter for the title. Previously she worked in the national and regional press as well as in regional and community and Health Promotion (Istituto Superiore di Sanità). Afterwards, he was working for 2 years as General Director for Health Promotion at the radio. Ministry of Health. From 2006 to 2008, Mr. Greco has worked at the Chief Department of Prevention and Communication. Since 2008 he has been Consultant epidemiologist National Centre for Epidemiology, Surveillance and Health Promotion. Mr. Greco is Member of the International Epidemiological Society “the National”, of the epidemiological association “the National Hygiene Society” (SITI) and Fellow of the Royal Institute of Public Health Dr. Tracey Cooper, health expert in London.

Tracey took up her post as the Chief Executive of the Health Information and Quality Authority in Ireland in August 2006. The Authority sets Francesca Moccia, health expert standards, monitors and regulates many aspects of the health and social care system, undertakes Health Technology Assessments and provides advice on, and develops technical standards for, improvements in health information. Her previous role was as Deputy Head and Director of Francesca Moccia holds a Degree in Law and wrote a thesis on Human Rights. She got two M.A.s: one on “Public Relations” and the other one Operations for the National Health Service Clinical Governance Support Team in the United Kingdom. Her previous experience includes working on “Citizenship Policies”. Ms Moccia also attended a course on “Security Manager”. Currently she co-ordinates the Tribunal for Patients’ Rights at clinically in emergency medicine, emergency care services and health system reform. Tracey has worked in, and advised on, a variety of different national level. This is an initiative of Cittadinanzattiva which was born in 1978 in order to protect citizens’ rights in healthcare field. She attended health systems in different Regions. Tracey is currently the President-Elect for the International Society for Quality in Health Care. many information initiatives and campaigns dealing with healthcare field such as “Safe Hospital”, “Civic Audit”, “Informed Consent”, “Surgery Quality Charter”. Ms Moccia belongs to a team work related to patients’ security for the Ministry of Health. Kieran Murphy , journalist Adriana Bazzi, journalist Kieran C Murphy graduated from UCD in 1987 and initially worked in Medicine and Psychiatry in Dublin before moving to Cardiff University in 1994 where he obtained a PhD in Psychiatric Genetics. In 1999, he was appointed Senior Lecturer in Behavioural Genetics at the Institute of Journalist from Corriere della sera for health issues Psychiatry, King’s College London and in 2002, took up his current appointment as Professor and Chairman of the Academic Department of Psychiatry, Royal College of Surgeons in Ireland and Consultant Psychiatrist at Beaumont Hospital. Francesco Marabotto, journalist Deirdre Veldon, journalist Chief editor of ANSA, responsible for health and medicine topics Originally from Co Galway, Veldon holds a BA and a postgraduate diploma in journalism from NUI Galway, along with an MA in International Rela- tions from Dublin City University. Since 1996, she has been working as a journalist for “The Irish Times”. She became the newspaper’s website editor in 1999. Actually, Veldon is a duty editor of The Irish Times and the editor of the newspaper’s weekly HEALTHplus supplement.

178 179 Ivars Bušmanis, chair latvia Giedrius Sudikas, chair lithuania Ivars Bušmanis has been Head of the Press department in European Commission’s Representation office in Latvia since November 2007. After Giedrius Sudikas joined the European Commission Representation in Lithuania as the head of press and information section on March 2010. graduating from the Journalism faculty in the University of Latvia he has worked as a journalist for about 20 years. He has also worked as a Before that he was working in Brussels for the last five years at the Commission’s Employment and Social Inclusion Directorate General. At the supplement editor, managing director and editor-in-chief. Additionally, Mr Bušmanis was employed by regional and national media (“Latvijas Employment DG he was engaged in social protection policy analysis and administration of structural funds’ programmes. Giedrius graduated Jaunatne”, “Labrīt”, “Neatkarīgā Rīta Avīze” and “Latvijas Avīze”). from Mykolas Romeris University with a Masters Degree in the European Law. He did part of his studies at Ghent University in Belgium.

Liene Šulce, health expert Daiva Ausėnaitė, journalist

Ms. Liene Šulce is a certified lawyer currently working as the Director of the Patients Ombud Office in Latvia. She has previously managed the Daiva Ausėnaitė is a journalist specializing in health and environment issues. Currently she is working as an editor in chief of the magazine Patient’s Rights Office in Latvia and has written for various publications, organized seminars and given lectures for medical topics on health law „Green‘as“. D. Ausėnaitė is one of the founders and active member of the Lithuanian Health journalist club. and patients’ rights. As a consultant, Ms. Šulce has participated in the Parliamentary and Ministry level working groups in Latvia for law making process of patients’ rights and development of the health care field. Ms. Šulce has an International certificate in Risk Management and Patient Safety Improvement and continues to report to the EU and WHO on patients’ mobility, pharmacy and other health related issues in Latvia. Arminas Bartkaitis, health expert

Valdis Melderis, journalist Arminas Bartkaitis was born on 08/30/1965 in Telšiai. In 1989 he graduated from Vilnius Civil Engineering Institute (now Vilnius Gediminas Tech- nical University). He is actively involved in organ donation promotion and protection of patients’ rights activities since 1996. In 2005 he became Valdis Melderis is host for TV programme “Mans Mazais” on Latvian National Television. an elected president of the association “Donorystė” (“Donation”). He also has been working as a radio journalist since 1993 (radio programme director, programme moderator and host). Programmes hosted by him activate issues on children, family relationship and health. Stasys Gendvilis, health expert Mr. Melderis also takes part in different social campaigns, which are generated to promote harmony in family and to ensure mental health. Valdis Melderis has acquired a degree in psychology at the University of Latvia. He works also as lecturer at the private college and coordinates In 1966, Stasys Gendvilis graduated from Kaunas Medical Institute. In 1970, he became doctor of medicine. He has worked in Kaunas Medical various multilingual events. Institute as teacher and pro dean, later as dean of the faculty. Now Mr Gendvilis is working in Kaunas District hospital as general director. He is also president of Lithuanian association of hospital managers, member of Kaunas Rotary club and member of the Auxiliary service of the order Aiva Kalve, journalist of Malta. Mr Gendvilis published more than 150 articles on experimental and clinical allergology as well as health care management topics.

Since 2007, Aiva Kalve has been working as an editor–in-chief of „Musmajas” – the main magazine about issues devoted to family, house and Gailina Kavaliauskiene, journalist garden. She has been working in journalism for 26 years, 17 of them in one of the leading national newspapers “Diena”. At present the readers continue Gailina Kavaliauskiene is founder and editor in chief of the fortnightly newspaper ‘Medicina Visiems’ and the monthly to enjoy regular publications on health and family issues. Articles written by Aiva Kalve cover not only physical health issues, but also mental magazine ‘Medicina plus’, the most popular health media in Lithuania for the general public, covering various aspects of health and other problems like stress etc. Aiva Kalve has acquired a degree in journalism at the University of Latvia. healthy life and medicine. She mainly covers themes like medicine, pharmacy, psychology and health care.

Dr. Ilze Aizsilniece, health expert

Dr. Ilze Aizsilniece has been working as a General Practitioner for 12 years and continues to work as a freelance health consultant with the World Bank and the World Health Organisation. She is the Founder and Chairman of the non-governmental organization “Health projects for Latvia” and is the member of the Latvian Physicians’ Association and the Latvian Family Doctors Association. She has written numerous publications on the rational use of medicinal drugs and the health- care system in the Baltics, previously managing the Department for International Affairs and Educational Development in developing curricula for undergraduate and postgraduate medical education.

180 181 Ernst Moutschen, chair luxembourg Dr Angelo Chetcuti, chair malta Head of Representation of the European Commission to Luxembourg Representation of the European Commission in Malta

Claude A. Hemmer, health expert Dr Carmen Sammut, journalist Claude Hemmer is graduate in economics and social sciences, University of Innsbruck. He is currently a senior adviser to the Ministry of Health in Luxembourg and has been working as the Head of Cabinet responsible for health, physical education and sports, law enforcement (1982- Dr Carmen Sammut is a lecturer at the International Relations Department of the University of Malta. She holds a PhD in Media and Communi- 1984) and Government hospitals commissioner (1993- 2004). He is also Vice-President of the Council of State since 2007. cations from Goldsmiths College, University of London. She is a media and culture researcher and wrote the book “Media and Maltese Society” (2006). She started her career as a journalist with the state broadcasting in the early 1980s, dealing with the production of foreign news and current affairs. Since the advent of pluralism 1991, she has freelanced for various media outlets. Since 2007 she has been a member of the Lucien Montebrusco, journalist Media Ethics Commission.

Lucien Montebrusco has been a journalist at the daily newspaper Tageblatt since 1995. Dr Charmaine Gauci, health expert He is currently editor-in-chief of the newspaper’s political and social sections. Dr Charmaine Gauci is the Director of the Health Promotion and Disease Prevention Directorate in the Ministry of Health, the Elderly and Commu- nity Care in Malta. She graduated as a medical doctor in 1991. She attained her Ph.D Degree in communicable disease epidemiology in 2006. She is a senior lecturer with the University of Malta and delivers lectures in the field of public health especially in Epidemiology and Communi- cable Diseases. She is active in the field of public health and is currently also the President of the Malta Association of Public Health Medicine.

Dr Janet Mifsud B.Pharm (Hons) PhD (QUB), health expert

Dr Janet Mifsud’s is a senior lecturer with the Department of Clinical Pharmacology and Therapeutics, University of Malta. Her present research is on epilepsy and other chronic neurological disorders. She was Commissioner (National Commission for the Promotion of Equality 2004-2010), a member of the Public Service Commission, (2000-2009) and is now Member of the Medical Commission and the Malta Football Association. She is national co-ordinator for COST – European Cooperation in Science and Technology. She has been secretary of EUREPA, European Epilepsy Academy since 2004, and is presently Vice President for the International Bureau for Epilepsy.

Dr Miriam Dalmas, health expert

Dr Miriam Dalmas is a Medical Doctor (MD 1988) specialised in Public Health Medicine; MSc in Public Health (1997), MBA (2005). Since September 2007, she has occupied the post of Director Policy Development, EU and International Affairs within the Ministry for Health, the Elderly and Community Care. Prior to this date she was Head of the Malta National Cancer Registry for 16 years and Acting Head of the Department of Health Information in the same Ministry for 1 year. After graduating in 1988, she worked as a house officer at St. Luke’s Hospital for 2 years.

182 183 Gemma Buters, chair netherlands Hanna Jeziorańska, chair poland

Gemma Buters works as press officer for the Representation of the European Commission in the Netherlands. She has been previously working as a journalist and Brussels correspondent for the largest newspaper in the Netherlands. Zbigniew Wojtasiński, journalist

Journalist of „WPROST“magazine from 2002, before that he was a journalist in one of the biggest Polish dailies „Rzeczpospolita“ (from 1994 Hans Maarse, health expert – 2001). He has also worked for many years in the Polish Press Agency. Zbigniew Wojtasiński has written two books: „Umysł i Medycyna“ (pub- lished in 1999) and „Medycyna i zdrowie“ (publisje in 1997). He’s a laureate of many journalist awards, eg. the prizes of: Polish Journalist’s As- Prof. Maarse holds a Bachelor degree in Sociology and a Master’s degree in Political Science from the Catholic University of Nijmegen. He started sociation, Health Ministry, Polish Genetical Association. his academic career at the Department of Sociology of the Free University of Amsterdam (1973-1976). In 1976 he switched to the Department of Policy Processes in Government of the Faculty of Public Administration. In 1986, he was appointed as full professor in Health Policy Science Marek Balicki, health expert at the Faculty of Health Sciences (Maastricht University). From 1995 to 2001, he was the acting dean of the Faculty. His teaching activities concentrate on the political and governance aspects of health policy-making, policy implementation and policy evaluation. He is also teaching A physician, a politician, an activist of „Solidarity” of the 80s, a manager of several hospitals, an experienced member of Parliament (during its in public administration and policy analysis at the Maastricht Graduate School of Governance and the University College of Maastricht. An im- first and second terms), a senator to the fifth term Senate of the Republic of Poland, Secretary of State in Hanna Suchocka’s government, Health portant topic in his current research concerns the international comparative analysis of health systems. Frequent participation as temporary advisor of the World Minister in Leszek Mliller’s and Marek Belka’s governments. Currently, a member of the sixth term of Parliament and Chief Executive Officer of the Health Organisation (Copenhagen), particularly in countries in Central and Eastern Europe including Lithuania, Poland, the Czech Republic, Bulgaria, Romania, Wolski Hospital in Warsaw. Adam Kozierkiewicz Graduate of Faculty of Medicine at the Jagiellonian University in Krakow (1992), and School of Ukraine and Kazakhstan. Regular research work for the World Bank on national health insurance schemes. Public Health at the same Univesity, as well as post-graduate trainings at Harvard and Budapest University. Work experience at the Jagiellonian University, Ministry of Health, Republic of Poland and the European Investment Bank. Major area of interest and expertise are health informa- Wilfried van der Bles, journalist tion, health economy and management.

Wilfried Van der Bles has a degree in History at the University of Groningen. In 1982 has started working as a journalist for the daily news paper Piotr Cieśliński, journalist Trouw, where he worked consecutively for the economy, politics, books and media sections. The past five years he has been working as editor of the health section. Adam Kozierkiewicz, health expert

Graduate of Faculty of Medicine at the Jagiellonian University in Krakow (1992), and School of Public Health at the same Willem Wansink, journalist Univesity, as well as post-graduate trainings at Harvard and Budapest University. Work experience at the Jagiellonian University, Ministry of Health, Republic of Poland and the European Investment Bank. Major area of interest and expertise are health information, health economy and management.

184 185 Margarida Marques, chair portugal Iulia Deutsch, chair romania Head of Representation, European Commission in Portugal Iulia Deutsch has been Information and Communication Officer and Deputy Head of Representation, in the Representation of the European Commission in Romania since July 2008. She has been working for the European Commission since 1994, when she joined the Delegation of the European Commission as a member of the Press and Information Team. Subsequently she had been Task Manager in the Pre-Accession Team of the Delegation, in charge with the Phare programmes in Public Health, Enhanced Pre-Accession Strategy, Audio-visual and Culture sector etc.

Diana Mendes, journalist Georgeta Roman Neacsu, journalist Diana Mendes has been working as a journalist in Diário de Notícias (DN) for the last eight years. She started writing about economy but soon moved to the social affairs department writing about public health and health research topics. Georgeta ROMAN NEACSU is health editor at “Evenimentul Zilei”, a quality daily newspaper. Georgeta has been working in journalism for more She is a graduate of the Social Communication department of the Social and Political Sciences Superior Institute in Lisbon. She has also worked than 12 years, with experience in written press and television. In 1988, she graduated the Faculty of Journalism and Sciences of Communica- on several publications about food, wine, music and other topics. tion.

Maria do Céu Machado, health expert Radu Dop MD, health expert Maria do Céu Machado is High Commissioner for Health. She has been Associate Professor of Pediatrics at the Lisbon Faculty of Medicine since 2005. She is also President of the National Commission for Children’s and Adolescents’ Health. Ms Machado holds a Degree in Medicine at the Radu Dop is Vice President of Romanian Medical Association. He has been surgeon for 38 years, with an academic career of 16 years. Now Mr Lisbon Faculty of Medicine (1972) and specialized in Pediatrics at the D. Estefânea Hospital and Order of Doctors. In 1990 she became Head of Dop dedicates his time to social and NGO activities. His main focus is on E-Health. Pediatrics Service. From 1994 to 1997 she worked as Assistant Professor of Pediatrics at FCML and from 1996 to 2006 she was Director of the Department of Pediatrics at Fernando Fonseca Hospital She did her doctorate in Pediatrics in 1997). Ms. Marchado has been President of the College of Pediatrics (1994-1995) as well as President of the Lisbon District Bodies (1995-1998). Tatiana Dabija, journalist

Isabel Pereira Santos, journalist Tatiana Dabija has been working in the written press since 1997 as special reporter and health editor at some of the most important daily newspapers in Romania (Cotidianul, Jurnalul National, Evenimentul Zilei). In 2005, she won the Award for Young Journalist of the Year/Health Isabel Pereira Santos holds a degree in Social Communication, from “Faculdade de Ciências Sociais e Humanas – Universidade Nova de Lisboa” Section, organized by Freedom House. Since 2008, she has been working at Romania Libera daily newspaper as coordinating editor of News/ and graduated in Health Communication, from “Universidade Lusíada”. She began working in journalism in 1993 (radio). Since 1997, Isabel Special Reporters Department. Pareira Santos has been working at the RTP, the Portuguese public broadcaster. Since 2002, she has been focusing almost exclusively on health- care issues. Last year, she taught health television journalism at Medicine University of Lisbon.

186 187 Tomas Halan, chair slovakia Tina Vončinaa, chair slovenia Tomáš Halán is Press Officer at the Representation of European Commission in Slovakia. He studied at University of Economics in Bratislava. He Tina Vončina is head of the press section at the European Commission Representation in Slovenia since 2005. She is involved in promoting the did his PhD study in International Business. Since 2007 he had been working in daily Sme as economic redactor. In March 2008 he started to European Commission communication priorities and EU policies in Slovenia. Before joining the European Commission she was working at the work at TV Markíza. Slovene Government’s Office for European affairs, where she was covering the enlargement process. He is at his new position at the EC Representation since April 2010. She graduated in international relations and has a master degree in European affairs.

Robert Ochaba, health expert Primož Cimerman, journalist

Robert Ochaba, Ph.D., MPH graduate at Pedagogical faculty of University Konstantin Philosof in Nitra and Faculty of Phylosophy Comenius Uni- Primož Cimerman is one of the co-founders and the editor and director of portal www.med.over.net that was introduced to the public in June versity in Bratislava in the field of study pedagogy and psychology. Currently he works at the Public Health Authority of the SR in the office on 2000. Since then it has become one of the biggest portals in Slovenia and definitely the biggest covering health. It is a parallel system for people tobacco and alcohol control. He is author of many articles on tobacco and alcohol control. He deals with issues as legal protection of non-smok- to seek information or give answers regarding health, but it is much more than a forum, they feature many medical experts that answer almost ers, consulting in disaccustoming from smoking and educational programmes in tobacco control. He graduated in the study programe Master 400 questions every month. of Public Health and did a postgraduate study in the field of Public Health. Helena Peternel Pečauer, journalist Peter Kubinyi, journalist Helena Peternel Pečauer has graduated from Faculty for Social Sciences in Journalism. Throughout her studies and in the first years after gradu- Peter Kubinyi is member of the Slovak Syndicate of Journalist. Currently, he works as a freelance journalist. From 1983 to 1995 he worked in ation she has worked for different media: teletext of the national TV, entertainment program of the national TV etc. Later her interested shifted national daily “Práca” where he specialized in health issues. In 1995 he started to work for the weekly “Plus 7 dní” where he focused predomi- to the written press: she has established and managed the correspondent network for Slovenec and later also for Republika. nantly on foreign affairs reportages. From 2007 to 2009 he worked as a reporter in weekly “Žurnál”. Throughout his journalist carrier he has When working for Slovenske novice her main interest were the social themes. In 1998 “Ona” was established and she became deputy edito, been rewarded with several journalist prizes and has published several documentary books – Ríša zla (Empire of Evil), books with coauthor Alan focusing on health topics. Hyža - Koniec (The End), Misia (The mission). Marko Milosavljević, journalist Alena Mosnarova, health expert Ph.d., Head of Department of Journalism at University of Ljubljana, Slovenia. He is the author of a number of research projects on broadcasting, MUDr. Alena Mosnárová has studied at Comenius University in Bratislava, Faculty of Medicine. Her specialization is Pharmacology. Her later at- media regulation, ownership and media management. He is a chairman of Expert commission for radio and television programmes at Slovenian testation was Internal Medicine. She has been working as a lecturer at Institute of Pharmacology at Faculty of Medicine of Comenius University Ministry of Culture. He lectures also at University of Dubrovnik, Croatia. He is a member of editorial board of Annals of Spiru Haret University in Bratislava for 15 years. Till today she has been working as editor-in-chief in health medium Lekárske listy. - Journalism Studies (Romania), Medianali (Croatia) and Media Watch (Slovenia). He is contributing comments and analysis on media and jour- nalism issues for leading Slovenian daily Delo and a number of other publications.

Jožica Maučec Zakotnik, health expert

Ivan Bielik, health expert Jožica Maučec Zakotnik is a medical doctor specialized in general practice/family medicine. She is the Director of CINDI Slovenia (Countrywide Integrated Non communicable Disease Intervention programme). From 2000 to 2005 Ms Zakotnik has been state secretary for public health in the Ministry of Health of Slovenia, involved in activities to influence public policies as well as in development and coordination of implementation of integrated non communicable diseases intervention programmes in Slovenia. She is also active in the international audience to influence the strategic development in the field of prevention and control of chronic diseases.

188 189 Miguel Puente-Pattison, chair spain Gabriella Nilsson, chair sweden Gabriella Nilsson is Press Officer at the European Commission’s office in Sweden. Before that, she was employed by the Ministry of Defence as Maria Lluch, health expert public relations officer and EU coordinator. She has also worked for eight years in Hague and Brussels at the Trade Council, the Swedish EU Representation and the European Commission. Maria is project coordinator, MPharm (UB), MBA (IESE), MSc International Health Policy - Health Economics and PhD reader at LSE. Maria started developing her career as a project manager for a London based consulting firm focusing on Health related projects with customers such as Alliance Unichem and the NHS. She then moved to journalistic projects developing country reports for different media (The Economist, BusinessWeek and Fortune magazine) and she lived for Agneta Nordberg, health expert 3 years in different countries mainly in the African continent. During the last seven years, Maria has developed solid experience in EU funded projects in the health sector at IESE Business School and at LSE Health. Agneta Nordberg was appointed professor at Karolinska Institutet in 1992. She is active at the Department of Neurobiology, Care Sciences and Society. Nordberg is also member of the Nobel Assembly at Karolinska Institutet, awarding the prestigious Nobel Prize in Physiology or Medi- cine.

Charlotte Schröder, journalist

Charlotte Schröder has been working as a journalist in various publications for the last 18 years and as a medical journalist since 2000. First, as news reporter at the Swedish Television News and then as reporter in various weekly and monthly magazines on topics like social issues, food, sketch, health, personal and everyday law and reports of various kinds. Since 2007 she works as freelancer and has assignments from a number of different magazines and companies, mainly within healthcare and pharmaceuticals.

Sten Erik Jensen, journalist

Sten Erik Jensen has been working as a journalist covering medicine and healthcare topics since 1984. He has worked in various posts for Medicinsk Teknik, Läkemedelsvärlden, dagensmedicin.se and as a freelancer. Currently, he is working for Dagens Medicin.

190 191 Antonia Mochan, chair united kingdom rules Martin McKee, public health expert

Martin McKee qualified in medicine in Belfast, Northern Ireland, with subsequent training in internal medicine and public health. He is Professor of European Public Health at the London School of Hygiene and Tropical Medicine where he co-directs of the European Centre on Health of So- cieties in Transition (ECOHOST), a WHO Collaborating Centre. He is also research director of the European Observatory on Health Systems and Policies. He has published over 490 academic papers and 35 books and his contributions to European health policy have been recognised by, among others, election to the UK Academy of Medical Sciences, the Romanian Academy of Medical Sciences, and the US Institute of Medicine, by the award of honorary doctorates from Hungary, The Netherlands, and Sweden and visiting professorships at the Universities of Zagreb and Belgrade, the 2003 Andrija Stampar medal for contributions to European public health and in 2005 was made a Commander of the Order of the British Empire (CBE).

192 193 1. Participants, articles and submission • Originality (e.g. choice of subject matter, handling of the subject, viewpoint taken…) • Investigative depth: research required collecting information, resources and effort taken in the work’s preparation 1. Participants to the competition must be nationals or residents of one of the 27 EU Member States and professional journalists. • Quality of writing – language, readability and structure 2. Participants must be aged 18 or older. • Content of the article: it must be relevant to health or health policy issues, handling one or several issues covered by the Europe for Patients campaign. 3. Each participant may submit up to three articles. Articles may have been published either individually or in a series of articles. 4. Articles shall be relevant to health or health policy issues, handling one or several issues covered by the Europe for Patients campaign: cross-border healthcare, rare diseases, 3. Juries and award by the European Commission health workforce, patient safety, organ donation and transplantation, cancer, flu vaccination, prudent use of antibiotics, mental health, childhood vaccination or Alzheimer’s disease and other dementias. The European Commission will award the Prizes on the basis of a proposal from the EU jury and a pre-selection made by national juries which have an advisory role. 5. Each article must be submitted individually using a fully completed online submission form. – National Jury 6. All articles must have been originally published in either a print or online media outlet, including publications of individual companies, associations or universities, foundations In each EU Member State an independent jury will evaluate the articles and choose one national nominee. This jury is made up of national experts in public health issues and etc. Articles must be available to the general public, either subject to a charge or free of charge - articles published only in internal newsletters (e.g. company’s or association’s well-known journalists. The chair of the jury will be the head of the Permanent Representation of the European Commission or his/her delegate. internal newsletter for staff) are not eligible. Articles must be written in journalistic style – academic papers will not be accepted. – EU Jury 7. Each article must have been published between 16 June 2009 and 18 July 2010. Participants may be asked to provide proof that the article has been published. The Prize to the European winner and two runners-up will be awarded by the Commission advised by a jury made up of EU officials, experts in the field of European public 8. Articles must be written in one of the official languages of the EU. health and well-known journalists and chaired by a high-ranking official of the European Commission. 9. Articles must be at least 3,800 characters in length (without spaces). 10. The main editorial office of the media in which the article was published must be based in one of the 27 EU Member States. The article will compete for the country in which 4. Prizes it was published. 11. Team submissions will be accepted provided that all team members are listed on the submission form and that the team does not exceed 5 people. The winner of the European competition and the two runners-up will receive prizes with a value of: 12. Other person than the author may submit an article with the consent of the author, if all competition rules are met. • First prize € 5 000 13. The deadline for submission is Sunday 18 July 2010 (until midnight). • 2nd prize € 3 000 14. In submitting an article, the participant accepts that he or she has read and understood the competition rules. • 3rd prize € 2 000 15. After submitting an article, you will receive an e-mail confirmation of reception. Only after this confirmation you are considered a participant. 16. Submitted articles are not returned. 5. Award ceremony 17. The European Commission reserves the right to reject any submission that does not comply with the requirements of the competition. 18. The European Commission reserves the right to use articles (including photographs and illustrations) entered in the competition in presentation materials and with the media, All the national nominees will be invited to the award ceremony and a seminar tailored to meet journalistic interests in autumn 2010. as well as for articles to be reproduced in any form for the purpose of promoting the Prize and the “Europe for Patients” campaign. The work of the award winners and nominees will be published in English on the “Europe for patients” website. 19. The articles of the national nominees will be translated into English and published on the European Commission websites together with the names, photos and CVs of the nominees. 6. Privacy statement 20. All persons working for the European Commission, the organizers or the juries of the EU Health Prize for Journalists, as well as their family members, are excluded from participating in the competition. We will record and further process your personal details to the extent that they are necessary for the follow-up of your participation in this competition. 21. The jury’s decision, whether at national or at EU level, is final. Your data will be handled in conformity with Regulation (EC) N° 45/2001 on the protection of individuals with regard to the processing of personal data by Community institu- tions and bodies and on the free movement of such data. 2. Assessment criteria Your data are recorded and stored as long as follow-up actions are needed in the context of your participation. For transparency purposes, the contributions, including your name and position in your organisation may be communicated to the public. Jury members will assess articles based on the following evaluation criteria: Right of rectification & personal data controller: • Newsworthiness and relevance of information to the general public Should you require further information concerning the processing of your personal details or exercise your rights (e.g. access or rectify any inaccurate or incomplete data or • Ability to engage and hold the reader’s interest oppose the publication of your details on Europa) please contact us. • Objectivity, independency and respect for journalistic ethical principles You have the right of recourse at any time to the European Data Protection Supervisor at [email protected] . 194 195 PROGRAMME PROGRAMME

EU Health Prize for Journalists EU Health Prize for Journalists Media Seminar and Award Ceremony Media Seminar and Award Ceremony 30 November 2010 30 November 2010

MEDIA SEMINAR MORNING MEDIA SEMINAR AFTERNOON

European Commissions, Directorate General for Communication, VM2, 2 rue van Maerlant – Conference room 2, 1040 Bruxelles Chair Andrzej Rys, Director of Public Health and Risk Assessment

8h30 - 9h00 Welcome by Frederic Vincent, Spokesperson, and introduction of participants 14h30 - 15h00 Presentation of the Europe for Patients campaign by Alexandra Walters, Media Officer

9h00 - 10h30 Presentation of the EU Institutions by Jo Vandercappelen, Member of the External Speakers Team 15h00 - 15h30 Presentation of the Health EU Portal and Europa Public Health web-site by Donata Meroni, Communication unit C1

10h40 – 11h30 Presentation of the Commission’s Audio-visual Services by Jean Pierre Assalone, DG COMM 15h30 - 16h00 Coffee break

12h00 - 12h30 Visit of the Finalists to the Commission’s Press Room with introduction by Robert Soltyk, Communication unit C1 16h00 - 16h30 Presentation of “Heidi”, a new Wiki tool for public Health by Elvira Goebel, Health Information unit C2)

12h00 - 14h30 Aperitif and Lunch hosted by Commissioner Dalli, Mezzanine Schumann, Berlaymont building and walk back to the VM2 16h30 - 17h00 Presentation of Crisis communication by Germain Tinus, Health Threats unit C3 and lessons learnt from pandemic H1N1 and new DG SANCO web-site

AWARD CEREMONY

BERLAYMONT Piazza

19h00 Cocktail reception

20h00 Award Ceremony and presentation of prizes by Paola Testori Coggi, Director General of the Health & Consumers Directorate-General

196 197 198 199 Europe for Patients

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