Organ Transplant Bill Will Protect Americans With Disabilities

The House of Representatives recently passed legislation that will help to protect some of the most vulnerable patients in need of organ transplants. As the mother of a daughter with a disability who may one day need a transplant, I applaud this compassionate and common-sense action. Yet it also speaks to the failures of our transplant system that lawmakers felt compelled to act in the first place.

The bill, the Organ Transplant Discrimination Prevention Act, sponsored by Rep. Kat Cammack, R-Fla., does what its title implies. It directs the board overseeing the national organ transplant system, and other entities (like transplant hospitals), not to discriminate against an individual’s access to an organ transplant “solely on the basis of that individual’s disability.”

One might reasonably ask why this legislation should be necessary. Organ transplant centers already care for vulnerable patients, so why should they ever discriminate on the basis of disability? Unfortunately, that logic fails to consider the dysfunctional way our organ transplant system has operated for far too long.

Multiple investigations by Congress and outside entities have demonstrated the problems with the organ procurement organizations (OPOs) that run the transplant system nationwide. These regional organizations have had localized monopolies for decades — and their behavior reflects that fact. In many cases, OPOs have ignored patient complaints and lost organs during the donation and transplant process.

OPOs also have a history of discarding organs viewed as less-than-perfect, because staff view maintaining a good “success rate” for the transplants they do perform as preferable to performing more procedures — even if this mindset means more patients die waiting for a transplant.

Congress passed, and President Joe Biden signed into law, legislation last year that officially broke up the OPO monopoly, but a recent hearing by the House Energy and Commerce Oversight Subcommittee revealed there is more work to do. During the hearing, lawmakers heard testimony about OPOs denying transplants to patients for seemingly arbitrary reasons. One witness who used to work for the OPOs’ national overseer said that he had seen “credible allegations” of entities preferring “wealthy” and “famous people on the organ transplant waiting list by skipping over other patients higher up on the waiting list,” and even allegations of “harvesting of organs from patients who whistleblowers believe would otherwise have survived.”

Reports of these types of allegations undermine not just the public’s faith in the fairness of the organ transplant allocation system, but the soundness of the doctors and institutions participating in it. Patients should have absolutely no doubt that physicians, transplant hospitals, and OPOs are treating them with the patient’s interests solely in mind — not the transplant hospital’s bottom line, the OPO’s “success rate,” or some other metric not focused on patient care.

As a mother of a special needs child, and a former member of the National Council on Disability, I want to ensure that my daughter receives the best care possible, including if and when she needs a transplant. That’s why I applaud the House’s unanimous decision to pass Cammack’s bill, which will help to ensure that all patients needing a transplant get treated fairly and equally with respect to organ allocation decisions.

I hope the Senate will soon pass this legislation, and the president can sign it into law, to continue the work lawmakers have conducted in the past few years to improve our organ transplant system. With an average of 17 patients dying every day while waiting for an organ transplant, we have no time to waste.

Mary Vought is a former member of the National Council of Disability and an IWF senior fellow. Follow her on X @MaryVought.