Acta vet. scand. 2002, Suppl. 99, 59-63. Xenotransplantation –View of the Transplanted Patient By Ragnar Skjøld The Norwegian Kidney Patients Association (LNT), P.O.box 4332 Nydalen, NO-0402 Oslo and the Norwegian Organ Donation Foundation, P.O. box 4375 Nydalen, NO-0402 Oslo, Norway. Tel: +47 22 79 92 92, E-mail: [email protected] Introduction First of all, I would like to express my gratitude In my presentation I will deal with the follow- to the Nordic NKVet committee for inviting me, ing aspects: the patient, to present my view on xenotrans- 1. The current transplantation activities in Nor- plantation in this forum, particularly, since way many of you show concern for the animals that 2. The present challenge of organ transplanta- by means of necessity are involved in this pro- tion- and the ideal transplantation from the cess. patient's point of view I also represent the patient organisation LNT - 3. Stiftelsen Organdonasjon – (Norwegian Or- Landsforeningen for Nyrepasienter og Trans- gan Donation Foundation) planterte, (in English: The Norwegian Kidney - informing the public on organ donation- what Patients Association) which is an organisation has been done so far? currently representing its 3.000 members of pa- 4. Xenotransplantation – is this the way to go? tients with kidney diseases, or who have re- 5. The prospects of using stem cells in trans- ceived organ transplants in Norway. plantations Further, I represent Stiftelsen Organdonasjon 6. Conclusions – what to do? (in English: Norwegian Organ Donation Foun- dation) of which I am a board member. This or- 1. The current transplantation activities in ganisation has as its most prominent task to Norway work on information on organ donation and to Historically, the man Christiaan Barnard in increase public awareness of the possibility to South-Africa in 1967 was important. He made donate one's organs after death. the first heart transplant carried out on a human I have received organ transplants myself on two being in the world, and this is an incidence that occasions; I myself remember well from the radio news – first time was way back in 1978 when I re- from when I was a boy. ceived a kidney from my mother In Norway kidney transplantation was offered – second time, in 1995 when I received a kid- at a very early date, since routine transplanta- ney from a deceased person (necrokidney) tions were carried out here already in1969. Rik- With this in mind I will try to convey the view shospitalet, The national hospital, is the only of the transplanted patient. transplant unit in Norway, which is understand- Acta vet. scand. Suppl. 99 - 2002 60 R. Skjøld able in a country with little over 4.5 million Thus, the greatest current challenge in trans- people, but which makes the activities particu- plantation is to get enough human organs for larly vulnerable. Presently, almost 4000 necro- transplantations as soon as possible. In the en- organs have been transplanted at Rikshospitalet tire western region of the world the waiting lists since the start in 1969. are dramatically increasing. Thus, lack of avail- Transplantation until now has had only one ma- able organs is the greatest motivator to innova- jor goal-which is patient survival. As patients, tion. Alternatives to human organ transplants, we are also concerned with the quality of life such as xenotransplantation and stem cell ther- after the transplantation. With this I specifically apy, are necessary to save human lives. Repre- mean a long life expectancy with a reasonable sentatives of Rikshospitalet have declared, that freedom from pain and other serious side ef- the prevalence (frequency of a disease) of pa- fects. This is an area, which my organisation the tients in need for kidney failure therapy will in- LNT wishes to emphasize in the immediate fu- crease in the future, both with respect to ture. haemodialysis and transplantation. There is The number of dialysis patients is strongly in- also a growing concern for increased treatment creasing. At the end of 2001 a total of 720 pa- capacity.5 tients received dialysis, (HD 621, PD 99) versus The next most important challenge lies in trans- 317 in 1997, ie. an increase of 127 per cent in 5 plantation immunology. Reducing the risk of years! rejection of the transplanted organ does not It is evident from these figures that something only involve using better immunosuppressive MUST be done to treat kidney failure! medicines. All transplanted patients are on life- Every dialysis patient costs close to 1 million long treatment with immunosuppressive Norwegian kroner (NOK) per year. The cost of medicines. These drugs have many serious un- transplantation is approximately 350.000 NOK, wanted side effects, both in the short and long medicines included, the first year. From this one run. The long time side effects include change cannot doubt that transplantations are cost-ef- of looks, osteoporosis, increased risk of cancer, fective both from the society's point of view as particularly skin cancer (such as malignant well as from the patients', and transplantation melanoma), and these side effects are basis for should therefore be the alternative of choice. great concern for the individual patient. The On January 1, 2002 a total of 230 were on a only acceptable alternative for the future seen waiting list for a replacement organ. This is from the patient's perspective, is to replace the more than a 35% increase compared with the failing organs with organs that are as similar as situation five years ago. This is a trend that is possible to the patient's own. expected to continue. 3. Stiftelsen Organdonasjon 2. The present challenge of organ Stiftelsen Organdonasjon is an umbrella organ- transplantation isation including six patient organisations. There is a very obvious tendency all over the Stiftelsen Organdonasjon carried out a large- western world that next of kin is not willing to ––––––– donate their organs to the relative in need. In 1 Torbjørn Leivestad, press release Rikshospitalet, 26.08. Norway the proportion of people refusing to 2002. 2 donate organs has increased from 25 per cent in Professor Svein Aage Christoffersen (chair of the Council on Animal Ethics), hearing of The Norwegian Biotechnol- 1 1994 to as much as nearly 40 per cent in 2001. ogy Board 1998. Acta vet. scand. Suppl. 99 - 2002 NKVet Proceedings 2002 61 scale information campaign during the spring tation of organs from one species to another, or of 2002 by enclosing donor cards in the infor- more specifically, from animals to humans). In mation brochure for the first time in Norway. It a world with screaming need for organs re- was released on the 19th of March, with the search has also focussed on the possibility to Minister of Health Mr. Dagfinn Høybråten breed genetically modified pigs from which or- signing the donorcard. Its primary goal is to in- gans could be harvested and used to replace crease public awareness of organ donations and sick human organs. These animals are not fit for the possibility for organ donation after death. human food consumption- and there are many Until now almost 1.5 million brochures have ethical considerations to be made in this re- been distributed, i.e. 3 million donor cards to spect. pharmacies, public libraries, doctors offices, I participated at the open hearing of the Norwe- hospitals etc. And the response was formidable, gian Biotechnology Board in September 1998 since almost 99 per cent of responders were entitled "Transplantation of organs from ani- supportive of organ donation after death and mals to humans- do we want this?" want to be of help. Most people at this hearing were positive to- wards medical progress in this field, but those The main causes of lack of organs are: that expressed a negative attitude, were the ex- • Far from all potential donors are identified at perts on contagious diseases. The large and un- the 27 certified donor hospitals in Norway known danger is the diseases that may cross • In many cases, even though the donors are species, that is, those swine diseases that may identified, the donation is not always carried infect humans through xenotransplantation. through, This problem has many aspects, and there is a • either, because the medical personnel find it risk that such disease may be transmitted with- too difficult to ask the family for permission, out detection at the 4th transplantation, but ap- • or, because donation is excluded due to lim- pear at the 100th, and then it is too late! Such ited resources at the hospital, diseases may pose a threat to mankind. And • or, because approximately 30-40% of next of then, what happens to those people that have re- kin refuse organ donation from their de- ceived a xeno-organ? ceased relative, most often because they do The consequences of xenotransplantations for not know the deceased's own attitude towards society should be further elucidated. While organ donation. xenotransplantation by many people is advo- Thus, the aim of Stiftelsen Organdonasjon is to cated as the ultimate solution to donor organ increase the number of donations from 17.6 to deficits, the discussion focussing on the donor 26 per million inhabitants annually, that is ap- potential of human organs is put behind in the proximately 120 donations per year! If this goal debate, a development, which worries me. Also is obtained, we are able to satisfy the total need the discussion in many ways has not empha- for organ donations in Norway. The last years sized the psychological consequences for the the number of donations per year has reached a recipient of a xeno-organ. How will he or she stable plateau of 65-70.