In honor of the law signed yesterday ending transplant discrimination in NJ for people with disabilities, NAMPWD would like to share our position on transplant discrimination from September 2012….
An article published by NPR on the 20th of September 2012 highlighted a new approach to selecting recipients for kidney transplants. In the article, the United Network for Organ Sharing announced that it will be changing their policies for recipients of kidneys for the first time in 25 years.
In response to an extremely long waiting list, UNOS is changing their policy from an arbitrary, “first-come, first-served” basis to a more discerned process. Noted by a UNOS representative that the previous policy was not “maximizing the life-benefit,” the new proposed policy would match the age of the organ to the age of the recipient, in hopes of ensuring that organ lasts the life-span and projected longevity of the patient. This new policy, however, has ruffled the feathers of both bioethicists and human rights activists, stating that there is no clear formula to predict the true life of an organ or its recipient.
In the wake of this announcement made by UNOS, Disability Scoop reported in their article “Advocates Call For End to Transplant Discrimination” a movement amongst disability advocates (from all groups) to end medical discrimination. The coalition of advocates gained momentum in the matter in response to two organ transplant cases. The first national incident occurred when a 3-year-old girl with an intellectual disability was denied a kidney transplant based upon her disability (although the hospital eventually conceded to the transplant in response to the outpouring of advocates.) The second incident occurred last month, when a 23-year-old with autism was denied a heart transplant by the Hospital of the University of Pennsylvania due to his disabilities.
In response to these two publications by NPR and Disability Scoop, The New American Movement for People with Disabilities is taking a stance in opposition to all transplant discrimination based upon disabilities or the “life-benefit” measured by doctors.
Admittedly, the transplant process – the waiting lists, the pre-tests, the post-operation care – is extremely difficult, both on the patient and on their families; however, the difficulty of that process should not eliminate certain candidates based upon preexisting conditions or disabilities. Equally, it is understandable and widely accepted that individuals in need of an organ transplant who are current substance abusers are ineligible for the waiting list, yet individuals should not be discriminated against based upon conditions outside of their control. The disability community is part of the latter category, those of persons with conditions outside of their control. That being said, persons with disabilities should be equally eligible for organ transplants, as affirmed in the Americans with Disabilities Act.
Section 504 of the ADA explicitly highlights that “health care providers are barred from discriminating against patients based upon disability,” (Diament, 2012). Whether or not that is clear in the case of organ transplants has yet to be seen, but as hospitals and doctors fall under the category of “heath care providers,” this sort of discrimination appears unjust. The New American Movement for People with Disabilities acknowledges that there is a higher demand (organ recipients) than there are donors, however, stands by the fact that recipients should not be discriminated against based upon a doctors measurement of “life-benefit.”
Americans with disabilities maintain the same right to life and treatment as any other individual. The discernment amongst doctors as to who is a “deserving” recipient should be held to the same standards as individuals without disabilities and not automatically cheapened by their intellectual capabilities.
Self advocates, Gary Rubin and Sidney Katz of The New American Movement for People with Disabilities are deeply concerned over this open discrimination. The right to medical treatment is not a question of what a person is incapable of, but the enjoyment each individual finds in within their means. “It is wrong to discriminate against us,” Sid Katz stated. Self-advocate Gary Rubin interjected “If a normal person can get it [an organ] why can’t we?”
Sid Katz continued by challenging the way in which the medical field addresses persons with disabilities “…one of the biggest problems we [the disability community] faces is that doctors don’t know how to address us.” Transplant discrimination against person with disabilities also speaks to the stigmas that still live within the medical community. The New American Movement’s self advocates articulated discontent even in the manner that their general physicians speak to them. “Talk to me, in language I can understand… It’s my body, I have the same right to know” both Sid and Gary assert.
The New American Movement for People with Disabilities emphasizes that changing attitudes towards the disability community starts within existing relationships. Changing societal attitudes begins with changing the attitudes and treatment we receive in our closest circle. Change begins with the people who serve us, especially doctors who have taken oaths to protect life, regardless of perceived “quality.”