Amelia (Mia) Rivera is a young girl with Wolf-Hirschhorn syndrome who had an appointment at the Children's Hospital of Philadelphia last week and met their transplant team. The understatement of the century would be to say that it didn't go well! An organ transplant evaluation denied due to developmental disabilities. Again. This was one of the first stories on this blog, and I don't really have much more to say now than I did then. Misty Cargill's case was five years ago and Sandra Jensen's was 17 years ago, so it seems like this question in the transplant community should have been resolved long before Mia Rivera was even born.
As an aside, Mia's mother mentions a list of contraindications that includes hepatitis C and HIV. Given that there are entire book chapters written about kidney transplantation in the hepatitis C positive patient, and a multicenter clinical trial of kidney and liver transplants in HIV patients has just completed enrollment, it's a little frightening to think that the transplant practices at CHOP could be so outdated. The old days in organ transplantation really weren't good, so I hope that CHOP's practices are either very different than described or will change very soon.
The stories from before were adults who were otherwise in reasonable health, which made the denials based on intellectual ability even more stark. The syndrome that Mia has is more complicated, and her mother's blog posts detail her other medical problems, so there may be medical reasons why she wouldn't do well with a kidney transplant that I can speculate on. The downside is that I don't have any specific knowledge of this particular case; the upside is that I'm not a fluent speaker of PR-ese. If her seizure disorder would be exacerbated by tacrolimus to the point where she couldn't take immunosuppressants, or if her heart disease or other problems make a major operation too risky, then a kidney transplant may bring more harm than benefit to her overall health. Maybe that's what the transplant team meant to say, but it certainly wasn't what the family heard. Effective communication of complicated information is beyond essential for transplant teams and their patients, so even this best case scenario doesn't reflect well on organ transplantation at CHOP.
Anyway, in the era of social media, the backlash is in full force. CHOP is getting slammed on their Facebook page, and not doing so well on Twitter either. I'm not sure how the story will continue for Mia, but it's definitely going to be a different experience than those who've had to deal with this before.
My personal thoughts? First, it's wrong. There are a lot of ways to say it, but decisions about organ transplants shouldn't be based on intellectual ability, societal worth, or perceived quality of life. Second, it's disappointing. Part of the disappointment is from the long history of denying organ transplants to people with intellectual disabilities, part of it is from the prestige of CHOP in general, and part of it is from having met transplant surgeons and nephrologists from CHOP at the ATC and ASN meetings. It's a sad day to be a kidney transplant recipient when patients and families still have to deal with these obstacles, and it's a sad day to be considering a career in transplantation when people in the field are showing such unacceptable values.
Saturday, January 14, 2012
Posted by Manu Varma at 5:47 PM