Organ Transplant Discrimination Against People With Disabilities
A 25 year old man named Paul Corby who has never smoked, drank, and is otherwise healthy except for a congenital heart defect that his father died from at age 27. The only way he will survive is by getting a heart transplant. However, Paul has been denied the transplant due to the fact that he has autism. The doctors who denied him are using flimsy excuses to justify their behavior.
His doctors said he “can’t even list all his medications” from memory, as if that’s a good enough reason to suggest someone doesn’t deserve life-saving medical treatment. For what it’s worth, I take about 14 medications, and as an allistic (non-autistic) person, I often struggle with recalling every single one when I go to the doctor. Does this mean my doctors shouldn’t give me medical treatment?
What the doctors are getting at by saying Paul can’t list all of his medications is that Paul may not follow after care instructions if he gets a transplant. This excuse is also flimsy, as about 50% of people in the general population do not take their medications as prescribed. If you want to focus only on people with heart conditions following medicine regimens, “Within 2 years of initiating therapy, only half of patients hospitalized for acute myocardial infarction [heart attack] were still taking their prescribed statins, beta-blockers, angiotensin-converting enzyme (ACE) inhibitors, or angiotensin receptor blockers (ARBs).” Obviously, drug non-compliance is a huge issue (it’s a factor or cause in over 125,000 deaths in the US every year), but why single out autistic people when this is a problem that the entire population faces?
When I had a bowel resection in 2012, I ended up getting an infection at the surgery site that needed to be cleaned out three times a day for several weeks. I wasn’t able to do it myself, so my partner had to do it for me once I left the hospital. Should I not be a candidate for further surgeries because I needed help from someone else after surgery? If you’ve never had surgery, you may not know everyone needs help after an operation (usually, a lot of it). That’s why we have hospital, nurses, and caretakers. My insurance company would have covered having a nurse come by my house daily or weekly to make sure I was following my post-surgery instructions, but my partner was able to handle it on his own, so we didn’t need one. However, if I had needed one, that wouldn’t have made me a “bad” patient or someone who is unworthy of life-saving medical procedures. Obviously Paul’s mother is active in his life, so she could help him post-transplant, or they could hire an at-home nurse. Neither of those things are unusual. So again, why single Paul out?
Unfortunately, Paul isn’t really being singled out. Discriminating against people with intellectual or developmental disabilities with regards to organ transplant is a national trend. According to the Autistic Self Advocacy Network,
A 1992 survey of 411 transplant centers by Levenson and Olbrisch found that individuals with IQs between 50 and 70 would be considered absolutely contraindicated from receiving a heart transplant in 25% of transplant centers, with 59% stating a relative contraindication. When the same question was asked for patients with IQs under 50, almost 3 in every 4 transplant centers indicated an absolute contraindication. (Source)
Since most of the information regarding this situation is delivered by Paul’s mom, she could leaving out important info. Perhaps Paul has some rare blood type and doctors think it is unlikely that they will get a heart from that blood type. Maybe Paul has some compounding condition that makes it probably that his body would reject a transplant. We don’t know for sure, but I’m willing to take Paul and his mother’s word on this, given that there is significant evidence of this happening to other people with mental disabilities. Fortunately, a Pennsylvania state legislator believes them as well, and introduced a bill called “Paul’s Law” that would end discrimination against people with disabilities who need a transplant. This follows bills that have been passed in New Jersey and California for the same issue.
While legislation like this is a great step, I think we need to do two other things. We need to recognize & stop the discrimination against people with intellectual and developmental disabilities, and we need to make organ donation opt-out instead of opt-in. According to the NY Times, “In Germany, which uses an opt-in system, only 12 percent give their consent; in Austria, which uses opt-out, nearly everyone (99 percent) does.” I believe (and I assume most readers of this site also believe) that once you die, that’s it. You’re gone. You have no more need of any of your organs, because you’re dead. So why wouldn’t you give up your organs once you’re dead? Now that I’ve convinced you, if you aren’t already signed up to be an organ donor, you should sign up now.
If you’d like to show support for Paul, his mother created a petition on Change.org, and the lawmaker who is sponsoring the Paul’s Law has a petition on his website as well. And again, please register to be an organ donor.