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Disability Bias Clouding Organ Transplants, Report Finds

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People with developmental disabilities who are in need of life-saving organ transplants are facing widespread discrimination from health care providers, a new report indicates.

In what’s believed to be the first comprehensive look at the experiences of those with intellectual and developmental disabilities seeking transplants, advocates found that individuals are routinely turned down for the procedures due to their special needs.

The report released this week by the Autistic Self Advocacy Network indicates that doctors often weigh the presence of a developmental disability when making decisions about transplant eligibility, but to what degree varies largely depending on the type of organ needed. Evidence suggests that many heart transplant centers consider a cognitive impairment reason enough to make the procedure inadvisable, while disabilities are generally less of a driving factor in determinations related to liver and kidney transplants, for example.

Federal law prohibits health care providers from discriminating on the basis of a person’s disability. Nonetheless, the report finds that given the broad discretion that doctors have in making medical judgements “decision-making done on the basis of disability can often be officially attributed to non-discriminatory motives.”

In other cases, doctors have expressed concerns about the ability of patients with disabilities to appropriately handle their postoperative care.

The report comes on the heels of two high-profile cases last year involving individuals with developmental disabilities who were denied transplants. In one instance, 3-year-old Amelia Rivera, diagnosed with intellectual disability and Wolf-Hirschhorn syndrome, was ultimately granted approval for a kidney transplant amid public outrage. But doctors stuck to their decision not to grant a heart transplant to Paul Corby, a 23-year-old with autism.

Now, advocates are urging federal health officials to issue guidance to the nation’s transplant centers on their obligations to serve people with disabilities. Representatives from the Autistic Self Advocacy Network, Not Dead Yet and the National Disability Rights Network met with leaders of the U.S. Department of Health and Human Services’ Office for Civil Rights this week to plead their case.

“Right now we have a situation where discrimination is the norm in accessing organ transplants for people with disabilities, so action is very much in order,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. “I think we have a real commitment on the part of HHS.”

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Comments (7 Responses)

  1. holly says:

    People with disabilitys are lucking if they can even get thier teeth fixed. I don’t see organ transplants on the list anytime soon.
    Sincerely,
    Mom of disabled young adult in west michigan

  2. Laurie says:

    I alternate between sad and discouraged to angry about this. I’d like to know who chooses the doctors who get to decide who gets a chance at life and who doesn’t. What type of test do the doctors first take to see if they have hidden biases? Surely they have to be trained and then tested before they are given the power to make these life and death decisions, don’t they? I don’t someone who discriminates on the basis of race, religion, sex, or disability making this decision about whether one of my loved ones gets to live or die.

  3. Janie says:

    This is archaic. Who is to say that a person with a disability isn’t worth saving. We all contribute to life in some way or another. As far as I am concerned we all have our disabilities. Some can do better than others with certain things. The person who can not do something as well as someone else, should be sent to the back of the line or in this case not even be allowed in line? Just because they are not as abled as someone else doesn’t mean that they are not loved or can not contribute in life. Who gets to decide this????

  4. Donna Berkheiser says:

    After serious consideration due to these people playing games with the lives of people who are different.
    I will remove “organ donor” from my drivers’ license. Let my family decide this, not some bureaucrat who deems one worthy. My nephew Paul is a wonderful person, he is a gifted writer with a wry sense of humor.
    But because he is autistic, they say he is not a candidate for a heart transplant. Believe me Paul knows what discrimination is!

  5. Joyce M. says:

    I had a transplant, and when I was on the list I met a young woman who was trying to be listed (or her parents were). The transplant doctors denied her and I think it was their concern about her ability to understand & follow the protocol with the many medications and safety measures she’d need. She had Down’s Syndrome I think. It did make some sense to me, but it’s a difficult issue!

  6. Amanda says:

    My daughter is 6 year’s old and has down syndrome she has had two open heart surgeries and was diagnosed with pulmonary hypertension when I asked about a transplant her heart doctor told me she doesn’t qualify due to her having down syndrome I was outraged he said they only let those who have a better quality of life someone who has no disabilities for instance I was devastated to hear a doctor say something so hurtful and could look at my child and say honestly what do you think her qualitie of life would be like compared to yours or mine….. I just don’t understand how one person can say that my child is not worth saving but a drug addict is or child molesters even murders…..

  7. Susan Shanaman says:

    The Pennsylvania Legislature is poised to adopt legislation on organ donation and transplant practices (SB 850 and HB 30). Unfortunately, at this time, there has been no willingness to consider amending those bills to include antidiscrimination language to ensure that those with disabilities are not just considered sources of organs and tissues for transplant, but are also considered as candidates for transplants.

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