Organ transplant politics are once again in the news. Most recently, a parent, Chrissy Rivera, alleged that Children’s Hospital of Philadelphia has refused to perform a kidney transplant for her child. She claims that hospital officials turned down performing the transplant because staff referred to her child as “mentally retarded” and questioned the value of implanting the organ into a child with such severe mental and physical disabilities. According to her, hospital officials expressed concern about the quality of life benefit to the child as well as whether the family (and later the child) would have the means to sustain the medication regimen necessary to avoid organ rejection. Inherent in these concerns are financial consideration as anti-rejection medication costs can be exorbitant.
The 3-year-old child, Amelia Rivera, was born with Wolf-Hirschhorn syndrome, a rare genetic disorder that causes seizures, heart defects, potential deafness, immune deficiencies, as well as heightened mental and other physical impairments. Hospital officials expressed concern about the case on Facebook, noting that because of patient privacy rules, they could not speak publicly about their communications with the Rivera family, but failed to offer anything substantive to affirm or deny the mother’s statements.
Among those who are outraged about the story is Steve Sweeney, President of the New Jersey Senate, who announced a plan to make it illegal for a hospital to deny any life-saving treatment to disabled persons. Sweeney’s effort may benefit individuals with disabilities in New Jersey, but it will not help this situation as Amelia and her family live in Pennsylvania.
Amelia’s case raises legal, medical, and ethical issues about when a patient is “too sick” or is ever “too disabled” to benefit from a transplant. It also raises questions about whether medical institutions are obligated to perform medical services for any person who desires those services. These questions arise more frequently in the reproductive domain as some religiously affiliated hospitals may refuse to perform abortions—even when the mother’s life may be at risk. Most people interpret such policies as insensitive and restrictive, but courts have turned the question to whether other medical facilities are available in the region that can provide such services. Undoubtedly, that is an issue in this case too. Children’s Hospital is not the only facility in Pennsylvania to perform organ transplants.
That said, this case exposes deeper and perhaps more troubling issues. At the heart of these issues is U.S. transplant policy, which in large part is responsible for a relatively negligible national supply of organs. Over 100,000 people wait for organs in this country. Maybe 20,000 or so transplants from the waitlist will take place in 2012. However, thousands of patients on the US transplant list will die this year. Waiting for an organ is like waiting to win the lottery. For most, it’s simply not going to happen.
In Amelia’s case, the family asserts that it has a donor. Whether that donor is a “match” by transplant standards is an issue that has not received much media attention. Hospital officials may be considering whether it is “worth” having someone surrender a kidney for a patient deemed “too sick” or “too disabled” to survive or to have a “good quality of life.” All of these are loaded issues which are not adequately addressed in organ-transplant policies at the state and federal levels.
For example, patients considered too sick and too old are kicked off the U.S. transplant waitlist each year. This year, thousands will not be informed that an organ transplant could benefit or save their lives, because they were once in prison, are too poor, do not seem convincing in their ability to regularly take their medications, or simply do not seem to be socially or mentally fit. Their doctors make these subjective calls and send the patients off to dialysis clinics.
You see, there is a rationing process that takes place even before patients are placed on a wait list. And there are no federal or state guidelines or rules that require doctors or hospitals to place all persons who could benefit from an organ on the transplant waitlist. In fact, there is no uniform criterion. A patient, who is denied placement on a kidney transplant waitlist in Chicago might very well be placed on a list in New York.
And despite the best efforts of the Americans with Disabilities Act, individuals with disabilities are among those who suffer from U.S. transplant policy.
But the real question is to consider why this happens.
For one thing, status and stigma continue to influence organ transplantation at the ground level. If we had an abundant supply of organs available, very likely there would be no discrimination. But our biggest problem is that we simply do not have enough organs in our supply pool—and with restrictive federal procurement laws, dating back to 1984, we never will. Doctors try to manage this, sometimes clumsily, but their hands are tied. Amelia’s story fits in here, even though she has a donor—some doctors think that donors should only supply to the organ transplant list. Until federal law is changed, discrimination may persist in organ-transplant politics.
