A controversy at the Children's Hospital of Philadelphia (CHOP) reveals a lot about the ways that the world of pediatric transplantation has changed. The controversy began when the mother of a child with Wolf-Hirschhorn disease wrote on a blog about her interactions with the renal transplant team at CHOP. According to her blog, the doctors told her that her daughter, who has Wolf-Hirschhorn disease and who needs a kidney transplant, is not eligible for a transplant because of her cognitive impairments. The doctor reportedly said something about her quality of life.
The story was posted on January 12th. It went viral. I first saw it the next day when it was posted to an international bioethics group on Facebook. By January 14th, I was getting calls from reporters. By January 16th, a petition drive on Facebook had collected 16,000 signatures protesting the purported transplant denial. Many parents of children with disabilities posted comments on CHOP's Facebook page and on the blog. The postings give a window into a world that was once completely hidden from view, the world of parents who struggle to raise children with complex chronic conditions. It is a world of quiet heroism, smoldering resentments, and enormous challenges. There is a lot of solidarity among these parents.
CHOP responded to the allegations and to the increasingly heated conversation on its Facebook page. Because of HIPAA, however, they could not directly comment on any of the facts of the case. Instead, they posted a statement which said, in part, "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability."
At least three things are going on here. First, transplants for children have gotten much better over the last 20 years. This controversy would not have arisen in 1990 because transplants would have been seen as innovative, or extraordinary, or exotic. Today, they have become routine. Second, most medical treatment is much more widely available for children with disabilities today than it was twenty or thirty years ago. In the 1970s and 1980s, children with disabilities were frequently denied heart surgery, surgery for congenital anomalies, and organ transplants. That is much less likely today. Third, social networking allows news stories to get out to the world in ways that they never did before. Such stories can generate firestorms of criticism in the blogosphere, even if the facts about a particular case are not known. Put them all together and it leads to a world of far more equality, far more transparency, and far more scrutiny of doctors and hospitals.
So is it all good? Not necessarily. We seldom get the whole story in cases like this, and end up having to draw conclusions based upon partial versions of the facts. We may never know what conversations really took place in this case. We may never know all the relevant facts. And, surprisingly, many programs still consider neurodevelopmental disabilities when evaluating potential transplant candidates. In 2008, Richards and colleagues at Stanford published a national survey of transplant programs. They found that, among programs doing pediatric solid organ transplants, "Thirty-nine percent of programs stated that they 'rarely' or 'never' consider neurodevelopmental delays (NDD) in their decisions, whereas 43% of programs 'always' or 'usually' do. Sixty-two percent of programs report that informal processes guide their use of NDD, and no programs describe their process as 'formal, explicit, and uniform.'" (Richards CT et al, Peds Transplant 2008)
It is time for transplant programs to be more transparent in the criteria that they use to approve or disqualify patients and more accountable for the ethical assumptions built into their evaluation process.