In 2004 Linda Jones and I started the nation's only formal program on organ transplantation and intellectual disabilities (mental retardation). Linda was a nurse who had retired as head of "Lifeline Ohio," the organ procurement program for central Ohio. I was a professor and head of a university center on intellectual disabilities. In 2002 I underwent liver transplantation at the Ohio State University because an autoimmune disease was destroying my birth liver.
Over the course of three years Linda spoke with many physicians and policy people about the topic. She spoke with people in North America, Europe, and Asia. I hired Marilee Martens to collect data for us for a literature review, which we published in 2006.
Here is what I think about the case of Amelia, the three-year old who has an intellectual disability and was denied listing for a transplant at Children's Hospital in Philadelphia.
Organ transplantation is as effective with people with intellectual disability as with the general population. It is much more effective than most people realize. I was one of about 16,000 Americans who underwent liver transplant in 2002. A year later more than 90 percent of us were alive.
I think it is likely Children's Hospital will reverse its decision and list Amelia. Huge numbers of people care passionately about this issue. I don't understand what the hospital administrators are waiting for. The longer this goes on, the more will be the damage to the reputation of their hospital.
In the past the system of listing people for transplants and allocating organs had significant bias against people with disabilities, especially those with intellectual disabilities. It was biased against people with certain personality traits and/or mental illness. Clearly, the trend has been toward less bias. People with intellectual disabilities have been successfully transplanted. I don't think the bias has been eliminated but I believe it is greatly reduced from where it was.
Although bias against transplanting people with intellectual disability has been reduced, it is still a factor and needs to be reduced further. Many doctors have expressed such bias to me personally. Many don't share this bias. Freeing the system of bias is a work in progress.
Organ allocation should not take into account disability, personality, or the insurance status of the patient.
If you have a loved one who has an intellectual disability and is denied listing for a transplant by one center, go to another center without delay. The decisions are not the same from one center to another.
The discrimination against people with intellectual disabilities being listed for organ transplants may be part of a larger problem of access to health care, especially for adults. The more Lives Worth Saving looked at transplants, the more we noticed people dying from, say, a cancer that had been diagnosed only a day before death. We heard stories of parents losing their jobs because they had children with special needs posting too many bills with the health insurer.
The United States has a number of federally funded programs in the field of developmental disabilities. Policy makers need to re-direct some of this money and create a national priority on health care for adults with developmental disabilities. My takeaway thought from the three years I participated in Lives Worth saving was, "What is going on with health care for this population? How big must a tumor be before somebody notices it?" I don't think this was about bias. I think it was about access to care.
I believe Amelia's life is worth saving. Nothing in her medical records will change my mind on that point, because it is not a medical judgment. The solution isn't to discover a better way for deciding who gets a kidney and who doesn't. The solution is to find more kidneys.
