In March 2009 the junta Galan (PdL) of the Veneto Region has issued guidelines (DGR 851/09) which totally excludes from solid organ transplant patients who have an IQ (IQ) of less than 50 http://www.regione.veneto.it/NR/rdonlyres/59C5DF90-C4D0-49F7-8D1E-5662F8EF2B5B/0/DGR851_09Allegato.pdf.
The case remained in the shadows until in 2010 two nephrologists Catholic University of Rome, N. Panocchia and M. Bossola, published an article in the American Journal of Transplantation (10: 727-730) in which he accused the measure of the Veneto Region to be unconstitutional, contrary to the UN Convention on the Rights of Persons with Disabilities and unjustifiable from the medical point of view. The reference to Article
. 32, paragraph 1 of the Republican Constitution:
"The Republic protects health as a fundamental right of the individual and collective interest, e garantisce cure gratuite agli indigenti”
è tuttavia scentrato perché, posto che tutti i pazienti abbiano diritto all'organo di cui hanno bisogno, non ci sono abbastanza organi per tutti e quindi occorrerebbe dirimere il conflitto che si apre fra i loro rispettivi diritti. Nei trapianti nessuna spesa pubblica (dato che non esiste un mercato degli organi) può consentire di ridurre le liste di attesa, con la conseguenza che il lessico del diritto alla salute non trova applicazione.
Più appropriato il lessico della non-discriminazione, anch'esso usato dagli autori.
Per quali ragioni un ritardato mentale dovrebbe essere messo in secondo piano nell'allocazione degli organi?
Ceteris paribus, una persona con ritardo and a person without mental retardation have the same legitimate interest to be treated and then it seems that neither of the two patients should have priority over any except those arising from who is writing the first of the waiting list.
However, the international guidelines of the American Society of Transplantation and the International Society of Heart and Lung Transplantation consider mental retardation a contraindication to transplantation, although only relative and never absolute because it is believed that the mentally ill is not able to follow the complex post-transplant immunosuppressive therapy. Since you do not follow the therapy involves the loss of the organ, transplant patients are unable to follow treatment tantamount to wasting a precious resource. Nevertheless, the guidelines state that must be assessed case by case basis if the patient with mental illness to be able to follow the therapy or not, and not as a criterion generalizing that of IQ. In addition, the authors argue, recent studies have shown that more than IQ, what is important for the success of immunosuppressive therapy is the presence of family members or nurses who take care of the recipient. This refutes the main argument in favor of discrimination of mental retardation in transplantation.
But there are other issues: 1
the mentally retarded, eg. patients with Down syndrome have a lower life expectancy and thus derive a minor beneficio dall'organo rispetto al paziente non-disabile;
2 i ritardati mentali non sono in grado di capire che cosa sia il trapianto;
3 i ritardati mentali non beneficiano del trapianto in termini di qualità della vita, contrariamente alle persone con un normale sviluppo mentale.
Quanto al primo argomento, gli autori replicano che è normale trapiantare persone non-disabili con età superiore ai 65 anni e che i malati di sindrome di Down arrivano a 50-55 anni di vita. Dunque un disabile per trisomia 21 di 30 anni e un non-disabile di 65 anni hanno circa la stessa speranza di vita, con la conseguenza che quest'ultima non può essere usata per differenziare i disabili dai non-disabili.
Quanto al secondo argomento, gli autori argue that it applies to all forms of medical treatment and for all those who are unable to give informed consent, such as children. According to this argument should not transplant the children, which would be contrary to common medical practice. If the injunction barring disabled, informed consent would be granted by a guardian, just as they do for children and their parents.
The third argument, recent evidence suggests that transplantation improves psychological well-being of patients with mental retardation and their families. However, the authors failed to demonstrate that the mentally retarded can come through the transplant at the same level of quality of life to which a patient can get non-retarded. This unfortunately is a crucial point, because the allocation of medical resources based on the QALY (Quality Adjusted Life Years) that provides a one-year life of a person with low self worth less than a year of a person's life with full autonomy. So, assuming for example. an organ can be transplanted to 5 years of extra life to a non-disabled completely independently or 5 years of living in a mentally retarded little self QALY under the system we should give the organ to non-disabled person, because both its 5 years of life are worth more QALY of five years of life of disabled people, and secondly because the system is based on maximizing QALYs obtained with the same financial outlay. Rebus sic stantibus, if you accepts the system as ethically acceptable QALY (obviously the point is not discussed and I side in this regard), there is a reason for giving an organ to a patient, preferably non-disabled person rather than a disabled patient, provided that certain circumstances occur (difference in quality of life post-transplant, the same number of years of life gained with surgery, the same cost of the transplant, etc.).
However, the fact remains that the decision of the Veneto Region is ethically indefensible, because it allows an individual assessment and provides an absolute exclusion. Thomas Bruni
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