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SYSTEMS&SERVICES

Medical : a to timely high-quality cancer care?

ANNA WAGSTAFF

For many patients seeking access to treatments unavailable in their home country, the Cross-border Healthcare Directive turned out to be a bit of a disappointment. But a closer look shows it may help raise standards of care in ways that were not widely anticipated.

hen Miljana Marković was delays and interruptions could reduce relatively wealthy populations – cos­ diagnosed with breast can­ the effectiveness of treatment. After metic , , IVF and laser W cer, the news wasn’t all bad. weighing up her options, she decided eye treatment – often carried out in The disease had been detected in to to Paris for her course of radio­ exotic locations and increasingly in time to be safely treated with breast therapy, paying her own costs for the slightly less exotic locations across conserving therapy, and this was an treatment, travel and accommodation. eastern and central Europe. option she was keen to go for. Miljana was looking for the treatment The services are frequently mar­ But she was worried. Not about the that would give her the best chance of keted by agencies as a package that surgery, but about the adjuvant radio­ the outcome she wanted. But by step­ bundles together travel and accom­ therapy that would be needed after­ ping out of her own health system, and modation, an introduction to the wards to kill any stray cancer cells that finding her own way to healthcare pro­ medical facilities, translation ser­ may have been lurking in her breast tis­ viders in another country, she became a vices, help with the paperwork, and sue after the lump had been removed. consumer in the “health/medical tour­ even sometimes sightseeing or shop­ Serbia, her home country, has a ism” market – where a lack of agreed ping trips. quarter of the radiotherapy capacity standards and regulation leaves con­ The image is not entirely positive. that it needs. Waiting times are long, sumers wide open to exploitation. Though many centres have worked machines are old, and frequent break­ hard to establish a good reputation, downs can bring interruptions to a The health tourism market trust in the sector is undermined by a planned sequence of treatment. In the public perception, particu­ steady stream of horror stories appear­ Miljana (not her real name) was mar­ larly in the West, the sector is dom­ ing in the mass media about false ried to an oncologist, and knew that inated by services aimed at healthy, promises, hidden charges, and botched

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jobs that have to be corrected, often at The ‘patient touts’ great expense to the client or their own Two years ago, the darker side of some health services. of these services were exposed by two down of where the money had gone. Far less visible are the ‘medical German journalists, in an article in More worryingly, it revealed sys­ tourists’ who travel in the opposite Die Zeit titled ‘Patient touts’ (middle- tematic collusion between some pri­ direction, looking for high-quality men that go looking for customers), vate hospitals and the touts, with fees treatment rather than a low price. which won them the 2013 European of up to 22% offered as a bounty for People like Miljana generally head for Health Journalism prize. The arti­ every patient brought in. Rather than medical teams with good reputations, cle, which was republished in Cancer providing a service to people who but often have to rely on facilitators World (May–June 2014), exposed the wished to get treatment abroad, these or agencies if they don’t have family extortionate payments being demanded agents effectively act on behalf of the connections in the destination coun­ by some agents, often well beyond hospital, with a mission to convince try, or language skills, or familiarity the sum initially agreed, and with no patients of the benefits of getting with the bureaucratic procedures. attempt to provide receipts or a break­ treated at a particular facility. Far less visible are the ‘medical tourists’ who travel in the opposite direction, looking for high-quality treatment

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The advice amounted to spending €16,500 before consulting a single oncologist – let alone a world specialist!

The result, as was movingly told by cancer – and was advised instead to early EUROCARE studies, still persists, one nurse, is that patients can use up use the agency’s own “find the top doc­ providing a continued incentive to travel their family savings on treatments that tors in the world” service, which, for a to places that achieve better results. are never likely to benefit them, only to fee of € 2,500, applies a custom-made This gap may well be widening again end up dying in a hospital bed far from algorithm with 33 parameters to a lit­ due to cuts in public spending, which home and all alone. erature search for the specific pathol­ are likely to spell the end of the relatively The increasing complexity of cancer ogy in question. The advice amounted rapid improvement in survival rates that diagnostics and treatment in the era of in total to spending € 16,500 before some of the worst performing countries personalised medicine, and the rapid even consulting a single oncologist – showed in the 1990s and early 2000s. pace of new knowledge, puts pressure on let alone a world specialist! This same austerity – public spending patients even in more reliable health sys­ Stories like this are fuelling calls cuts and a fall in the number of people tems to search out the top international for greater regulatory oversight of who can afford private health insur­ specialist for their particular cancer. the health tourism sector, including ance – is also creating a “pull factor”, This is creating a market for suppos­ accreditation for the agencies and rules as hospitals in many west European edly “privileged information”, often of about what they can and cannot do. countries look to attract patients from dubious value at exorbitant fees. One The call is backed by many players in other countries to boost their budgets online service, run by a man whose the industry, some of whom have long or fill empty beds, the self-same pres­ CV shows he has never worked as an been expecting a boom in business, and sures that gave rise to the ‘patient tout­ oncologist, offers to “act as the patient’s blame lack of consumer confidence in ing’ reported in the Die Zeit article. advocate” (original italics). part for its failure to materialise. This was reflected at a high-profile “We offer medical advice to the The industry nonetheless feels in International Medical Travel Summit in patients that come to us and we offer buoyant mood, not least in Europe, London in April 2015, where delegates them to find the best possible medi­ where private healthcare providers from major hospitals in Italy, Spain, Por­ cal solution …. We take them by their have gained new access to Europe’s tugal and the UK – including a major hands and walk with them. From massive public healthcare budgets NHS hospital – mingled with delegates being in the ‘cold’ you will now feel through the EU Cross-border Health­ from facilities in more traditional health ‘protected’. Our patients feel empow­ care Directive, which came into force tourism destinations such as Dubai, ered with their feet on the ground. in October 2013. Saudi Arabia, , the Philippines, With our assessment you will become , and . a wise patient.” Why travel? Waiting times have also been What this meant for one breast can­ A number of factors are set to fuel a increasing in public sector facilities, cer patient was a proposal that she rapid increase in the numbers of peo­ fuelled in some countries by public should spend € 7,500 on a test for a ple seeking to travel abroad for can­ hospitals boosting their income with set of genetic mutations that is availa­ cer treatment. The spread of “patient private patients, and in others by a ble online at one-tenth the price, plus power” across Europe means more rise in the number of patients relying a further € 6,500 for having the results people are taking the initiative to find on public healthcare, in the wake of interpreted – which should be the job out what they need and where they widespread job losses and wage cuts. of her medical team. can get it, rather than just settling for However the real game changer She was warned against using any of what they are offered. may turn out to be the Cross-border the three oncologists she was consider­ The survival gap between east and Healthcare Directive – though exactly ing – all leaders in the field of person­ west Europe, though not as dramatic how, and how far, it will change the alised treatment of advanced breast as when it was first documented in the game remains unclear.

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Cross-border Healthcare Directive RIGHTS TO CARE IN OTHER EU MEMBER STATES Contrary to the general public percep­ tion, this Directive does not in fact Citizens of EU countries have had the right to access treatment in other member states for break new ground in giving EU citizens many years under the Social Security regulations, which were first introduced in the 1970s rights to treatment in other member and amended through a series of court cases (the S2 route) together with a number of Euro- states paid for from the public/social pean court rulings. The Cross-border Healthcare Directive was introduced to try to stream- healthcare funds in their own country. line and clarify this legal area, and introduces an additional route for accessing healthcare This has been possible for many in other member states. years, not just for unforeseen necessary care – covered via the EHIC card – but S2 ROUTE CROSS–BORDER HEALTHCARE ROUTE also for planned care, via the so-called ‘S2 route’, which is still available, and is Entitlement is based on certification from a The patient is entitled to treatments to which in some ways more generous than the doctor that the patient needs the treatment they would normally be entitled according to Directive (see box). and it is not available at home within a medi- the standard of care in their own health sys- One important difference is that the cally reasonable time tem. Authorisation cannot be refused where there is “undue delay” Directive allows people to claim from their public/social Payment is directly between national health Patients pay up front and apply for at home to pay for private treatment insurance funds; covers only treatments in reimbursement; covers treatment in abroad, so we may expect more US- public health service facilities public or private facilities style advertising (see page 38). But, as Enrico Brivio, the European Payment covers the full cost of treatment ex- Reimbursement is at the level of what the Commission Spokesperson for Health cluding co-payments payable in the member treatment would have cost at home and Food Safety, explains, the Directive state where the treatment takes place also contains some important elements that could have a broader impact on Pre-authorisation is always required Pre-authorisation is required only for very health systems across Europe. “Firstly, it costly or specialist procedures, and treat- establishes, for the first time in EU law, ments requiring an overnight hospital stay a set of rights that apply to all healthcare delivered anywhere in the EU: a right to a copy of a medical record; a right to how they could use the Directive to get “Whilst we think that some member make complaints or seek redress; a right better access to care abroad for their states have implemented the Directive to privacy and so on.” members – perhaps because they were rather well, we believe that we have Secondly, he adds, there are articles facing problems of access in their own identified a number of problems with that require a certain level of transpar­ country. But there were certainly a large the way that some member states have ency from health systems, “for instance, number of patient groups who thought put the Directive into their national on the way they seek to ensure quality that patient mobility in their particular law,” he says, adding that the Commis­ and safety,” and also from individual patient group would probably remain sion will take legal action against non- providers, “for example, on treatment low, but who were very interested in compliant member states if needs be. options and prices”. how the provisions in the Directive A cornerstone of the requirements For some patient groups, it is the on transparency could relate to their on transparency and patients’ rights is potential to use these elements of the own agenda for domestic healthcare the obligation on governments to pro­ Directive to improve access to quality reform.” vide a single National Contact Point care in their own countries that is of Eighteen months after the deadline where the public can access all the particular interest, says Brivio. “There for implementing the Directive, most relevant information. A list of where have been a large number of meet­ governments have now incorporated it to find contact points for each coun­ ings with patient advocacy groups on into their own national law, says Brivio, try can be found at http://ec.europa. the Directive in recent years… Some but questions remain in some cases eu/health/cross_border_care/docs/ groups were interested in finding out over the quality of implementation. cbhc_ncp_en.pdf.

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Who is travelling diseases, with a view to catering for for cancer treatments? the needs of all EU patients, including Information about how far cancer those in countries too small to develop patients use their rights to access treat­ expertise in diseases that occur infre­ ment in other countries is hard to come quently. “Rare cancer patients, there­ by and largely anecdotal. fore, will have the chance to travel The European Cancer Patient Coa­ abroad to seek care that otherwise lition is tracking use of the Directive, would not be available in their own but its president, Francesco De Lor­ country,” says De Lorenzo. He adds, enzo, says it is still too early to tell. His however, that while the Commission is personal perception, however, is that supposed to cover part of the operating the Cross-border Healthcare Directive costs of the Networks, it does not have “works only in one direction”. a commitment to cover all the costs “If a particular healthcare service related to the treatment of patients. It does not exist in my country, I cannot is also unclear how many Networks the use the Directive to get it in another Commission will decide to launch. member state, so it doesn’t solve the ECPC is calling for one network for economic problem behind patient each of the 12 rare cancer families. It mobility. The result is that it is eas­ is also calling for patients to be relieved main reason patients travel abroad is ier, for instance, for an Italian to seek of the requirement to pay up front for for a second opinion. A number of bio­ cheaper, but excellent care in bordering treatments they access under the Cross- logical therapies have been approved countries, like Slovenia, but it has been border Healthcare Directive. “We have in recent years for treating colon can­ very difficult the other way around.” been advocating very loudly for the cer, she says, but many countries do One possible exception may be for creation of a European fund, a pot of not reimburse them. Getting a sec­ patients with rare cancers, says De money at EU level, where all member ond opinion from doctors in a country Lorenzo. The European Commission states can get their payments back for where these drugs are in routine use is committed to establishing European patients’ mobility,” says De Lorenzo. can help people decide whether or not Reference Networks, which will link Zorana Maravic, from EuropaColon, it would be worth paying for the treat­ centres with expertise in specific rare says that in her experience, one of the ment from their own pockets. The cost

THE HEALTH TOURISM MARKET

The world health tourism market is worth around € 34–48 billion, started marketing themselves as health tourism destinations. according to Patients Without Borders, but estimates vary widely. The European Travel Commission has been asked to do a scoping Cosmetic surgery, dentistry and fertility (IVF) treatments tend to exercise with the UN World Travel Organization, to define what the be the services most sought after by people in western Europe. “health tourism” sector comprises, and get a realistic idea of the Malaysia, , the Philippines, Turkey and Dubai are among size of the market. They will put forward their findings and propos- the most high-profile health tourism destinations. als this September at a meeting that will include the OECD and Increasingly patients are also travelling to central and east Euro- World Health Organization. pean countries. Poland is becoming known for cosmetic surgery, Early indications are that this definition could be fairly broad – cov- and Hungary for dentistry. ering everything from proton therapy, through to spa and People travelling to western European destinations tend to be even guided spiritual walks through a forest. This is something looking for more high-tech or specialist care for serious health the cancer community might do well to keep an eye on: brand- conditions, including cancer. Germany and Austria are key desti- ing guided spiritual walks as healthcare may not be a problem in nations for eastern Europeans. France, UK and Italy also attract itself, but it becomes one if it is promoted as an effective alterna- patients from abroad. More recently, Spain and Portugal have tive to evidence-based treatments.

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cer centre in London, which show that Cardoso’s frustration at the hurdles of 293 patients from other European caused by this confusion and the countries seen over the past year, 376 expense involved in accessing trials diagnostic tests were carried out, but in another country is widely shared. only half received any treatment. Ana-Maria Forsea, a Romanian der­ There are signs that some patients matologist who has tried to help many with early breast cancer may be using melanoma patients access trials, com­ the Directive to access breast con­ ments that: “The procedures to obtain serving surgery that achieves better a reimbursement from the authority in cosmetic results – or perhaps more one country to be on a trial in another reliable adjuvant radiotherapy. A well- are opaque, long, tortuous, and often known breast unit in northern Italy, the result comes fatally too late if ever.” for instance, reports a small but steady While the Cross-border Healthcare flow of Bulgarian patients who opt to Directive was never intended to apply pay the difference between the reim­ to patients being treated within clini­ bursement they get from their govern­ cal trials, it has been seen as offering

SHUTTERSTOCK ment and the cost of the treatment. particular value to small patient groups, But as the head of the Breast Unit at such as those diagnosed with one of the of the second opinion itself, will almost Lisbon’s prestigious Champalimaud rare cancers collectively known as sar­ always be paid for privately. Hospital, Fatima Cardoso, points comas. Even here, however, the Direc­ For Maravic, the big issue is educat­ out, it is patients with advanced dis­ tive does not seem to have made much ing patients about where they can get ease, trying to access clinical trials of an impact so far. good quality treatment. “Sometimes the that could help them, who have the Sarcoma expert Jean-Yves Blay, of the treatment is available even in their own most desperate need to travel. Yet Centre Léon Bérard in Lyon, France, country, but if patients aren’t aware of this group is explicitly excluded from has devoted a lot of time in recent years certain options, they don’t ask.” cross-border healthcare provisions. to helping develop a network within EuropaColon’s priority is trying to On top of the costs of travel and Europe, and people approach him ensure that people with colon cancer accommodation, patients travelling from other countries for second opin­ know, for instance, that they should ask abroad to trials have to pay the cost of ions, usually because his team has con­ to be tested for particular biomarkers all the treatment and supportive care nections with their medical team, or early on in the course of their treatment other than the experimental therapy because they have relatives in France. to see whether they may be eligible for itself, which puts this option out of He receives email requests for advice certain drugs. reach for most people, she says. Worse at least once a day, but it is still relatively Getting access to diagnostic tests – still, it seems that paying your own way rare for people to travel for consulta­ not just for relevant gene mutations, for trials abroad may no longer always tions. “I see someone from overseas but also high-tech diagnostic imaging – be an option. Cardoso recently got a at my outpatient clinic maybe once could, in fact, turn out to be one of the young patient of hers accepted onto a or twice a month,” he says, “These are most important uses cancer patients trial at Gustave Roussy, only to be told mainly people who have private insur­ find for exercising their rights under that a condition of participation was ance, or who are willing to pay for the the Directive. that patients should have French insur­ travel themselves.” This would seem to be supported by ance that would cover the costs of the Patients will also travel to his cen­ figures from the Royal Marsden can­ “standard of care” treatments. tre to participate in trials, but “only if Getting access to diagnostic tests could be one of the best uses cancer patients find for the Directive

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THE EUROPEAN CANCER TOURISM MARKET they are able to get insurance to pay the costs that are not related Could the website for this proton to the trial.” centre facility in Prague (www. Markus Wartenberg, chair proton-cancer-treatment. of Sarcoma Patients EuroNet com – accessed 11 June (SPAEN), says the problem 2015) be a taste of what’s to is not about access to second come from Europe’s medical opinions, “It’s what you do with tourism market? This bizarrely the second opinion in your inappropriate image is aimed home country, if top sarcoma at patients with lung cancer – a surgeons or specific treatments disease that is still fatal for more are not available or are not than four out of five patients reimbursed. Very often patients even in countries with the best may be able to afford the sec­ survival rates. The prostate ond opinion, but unfortunately cancer page (11 June 2015) not the qualified treatment claims a “97% curability” rate, solutions in the west European and says the treatment has “no countries – on top of all the unwanted side effects” costs of travelling between the two countries.” SPAEN, he says, does not see Portugal, Spain and Greece are among travelling for treatment as a good solu­ many European countries that have seen tion. “Our vision would be to establish a strong investment in high-quality healthcare Sarcoma European Reference Network facilities over the past decade, but in the that also supports upcoming sarcoma current economic climate, independent centres in east European countries. If facilities are looking to fill spare capacity as at least one sarcoma expert centre per more people drop out of private insurance. east European country would be availa­ ble, this would help. We definitely need to raise the quality of diagnosis, treat­ ment (including access to affordable drugs), and follow up in these countries to improve the situation.” Wartenberg’s comment touches on one of the more contentious issues of the whole cross-border health­ care debate. If money is flowing out of weaker health systems to pay for patients to be treated in stronger ones, With healthcare budgets increasingly stretched across Europe, public hospitals are also under could that lead to the weak becom­ pressure to find additional financing to make up for cuts in public spending. In recent years, NHS ing weaker and the strong becoming hospitals in England have been given the right to devote up to half (49%) of their total capacity stronger? If that happens, the Direc­ to treating private patients – an opportunity some are using more enthusiastically than others. tive could promote a system across While profits from this private patients unit at the Royal Free London NHS Trust may be reinvested Europe that helps those who can afford back into the NHS, diverting capacity to private patients adds to the pressure on waiting lists, to travel for treatment abroad at the which is forcing more people to “go private” – or to seek treatment in another European member expense of the majority of patients who state, via the Cross-border Healthcare Directive or the S2 route. need that money to be invested in their own health care systems. n

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