State-Level Solutions to Discrimination in Organ Transplants 

By Emily Largent

organ transplant
Doctors in North Dakota perform a kidney transplant. (Photo by ndguard/Flickr)

In recent years, alleged instances of discrimination against people with disabilities in organ transplantation have captured public attention.

In 2012, for example, the parents of Amelia Rivera, a child with Wolf-Hirschhorn syndrome, alleged that they were told their daughter was not a candidate for a kidney transplant because of her “mental retardation.” The Children’s Hospital of Philadelphia denied “disqualify[ing] transplant patients on the basis of intellectual ability.” Nevertheless, more than 51,000 individuals signed a petition demanding that the hospital “allow the life saving [sic] transplant four-year-old Amelia Rivera needs to survive.”  Ultimately, Rivera received a living donor kidney transplant from her mother.

Around the same time, Paul Corby applied to the University of Pennsylvania’s heart transplant program but was rejected in light of his “psychiatric issues, autism, the complexity of the process . . . and the unknown and unpredictable effect of steroids on behavior.” Corby’s mother began a petition asking the transplant committee to change its mind that accumulated more than 295,000 signatures. Corby, who was also denied a transplant by the Mayo Clinic, has not yet received a transplant.

Popular interest in cases like Amelia’s and Paul’s helps explain growing state-level attention to the issue of discrimination in transplantation on the basis of physical or mental disability. California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, and Kansas now have laws on the books prohibiting such discrimination.  Meanwhile, Pennsylvania, Ohio, and New York have bills pending. (Pennsylvania’s is known as “Paul’s Law” after Corby.)  With the exception of California’s law—which was enacted in 1996 after Sandra Jenson, a Californian with Down Syndrome, was twice denied a heart-lung transplant—these anti-discrimination laws were passed in or after 2013.

Language from the California bill is typical and reads, in part:

No hospital, physician and surgeon, procurement organization, or other person shall determine the ultimate recipient of an anatomical gift based upon a potential recipient’s physical or mental disability, except to the extent that the physical or mental disability has been found by a physician and surgeon, following a case-by-case evaluation of the potential recipient, to be medically significant to the provision of the anatomical gift.

These laws, often passed unanimously by state legislatures, replicate a central tension found in the American’s with Disabilities Act. Covered entities cannot deny a transplant solely on the basis of a disability, nevertheless, they are allowed to consider the disability when making recommendations related to organ transplantation. While these laws are symbolically significant, their relatively recent arrival on the scene makes it unclear how they will be used and whether they will improve access to organ transplants for patients with disabilities. A search in Westlaw suggests that no litigation has been brought under the various state non-discrimination laws.

Although Beyond Disadvantage: Disability, Law, and Bioethics is over, I hope the discussion around the potential benefits and drawbacks of using state law to address discrimination on the basis of disability in organ transplants continues.

Do we need state laws in addition to federal laws? If states are the right forum for anti-discrimination in transplantation laws, how should states innovate to improve upon the protections already offered in the ADA rather than simply replicating the shortfalls?

Emily Largent

Emily Largent is an Assistant Professor of Medical Ethics and Health Policy at the Perelman School of Medicine. She also teaches at the University of Pennsylvania LawSchool. Her research examines ethical and regulatory issues arising in human subjects research and when integration of clinical research is integrated with clinical care; she has a particular focus on Alzheimer’s disease research. Emily received her PhD in Health Policy (Ethics) from Harvard and her JD from Harvard Law School. Prior to that, she received her BS in Nursing from the University of Pennsylvania School of Nursing and completed a fellowship in the Department of Bioethics at the National Institutes of Health.

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