A new bipartisan bill has been introduced in both chambers of Congress to enhance federal protections for people with disabilities against discrimination in the organ transplant selection process. Backed by disability advocacy organizations, Marco Rubio and Maggie Hassan introduced the Senate bill (the Charlotte Woodward Organ Transplant Discrimination Act) in December of 2021. A similar bill was introduced in the House by Representatives Jaime Herrera Beutler and Katie Porter earlier in 2021.
While 14 states adopted similar anti-discrimination laws in 2021, federal legislation would establish consistent transplant selection guidelines that would create a national baseline of discrimination prevention. Federal legislation would then allow individual states to pass laws that build upon the foundation of federal protections.
Though disability discrimination should have been eliminated with the passage of the Americans with Disabilities Act of 1990 (ADA), the reality many with disabilities face when seeking organ transplants does not match the ideals set out by the ADA. The implicit bias that is difficult to regulate plays a significant role in whom is selected for transplant by medical professionals. The federal legislation seeks to formalize and streamline criteria for selection so that it is guided by protocol and not by common misconceptions that the quality of life people with disabilities enjoy is somehow inferior to that of the non-disabled.
Implicit bias, "quality of life" considerations, and patients with disabilities
According to a 2019 report from the National Council for Disability, "the lives of persons with disabilities continue to be devalued in medical decision-making." And according to a 2008 Stanford study, 85% percent of organ transplant centers around the country factored in a child's neurodevelopmental delays when considering their candidacy. The Stanford study concluded that pediatric transplant centers across the country lacked consistency in criteria for determining which children with developmental disabilities were eligible for transplants.
Lawmakers behind the new bills were inspired to introduce the legislation after becoming familiar with the struggles children with Down syndrome and their parents faced while undergoing organ transplant processes. Often, physicians would balk at even letting children with Down Syndrome or other developmental disabilities onto transplant waiting lists. Generally, their reasoning for this is related to "quality of life" considerations. In other words, children with developmental disabilities were conceptualized as innately having an inferior quality of life post-transplant. Thus precedence was given to other children in need of transplants.
According to Charlotte Woodward, the woman with Down syndrome who inspired the Senate bill, the attitudes physicians take on this issue "bring into question whose lives are valued the most. It seems to me that transplant teams, when considering them for organ transplantation, are really elevating the lives of non-disabled people over the lives of people with disabilities, and that's not right."
Selection criteria vary throughout the country
Exacerbating the bias related to the quality of life considerations is that guidelines for transplant candidacy vary from state to state. On top of that, each of the 252 organ transplant centers across the nation has unique selection criteria and protocols that vary even between centers in the same state, with no standardized guidelines for who takes priority, which leaves quite an ample space for biases and misconceptions to thrive.
Transplant centers use patients and their health information to decide which patients are acceptable candidates for transplant. Health and lifestyle "contra-indications" like drug use, etc., can disqualify candidates. Having a disability itself is treated like a contra-indication by many transplant centers, a policy that is indicative of attitudes that equate disability with a lower quality of life. Treating disability as a contra-indication serves to preemptively block candidates with disabilities from the transplant list, despite the ADA offering explicit protections against just such discrimination.
To rationalize disqualifying patients with disabilities, transplant centers argue that patients with disabilities have post-op issues, including the inability to plan for post-op care, difficulty in showing up for follow-up appointments, and difficulty in managing medication side effects.
Yet research from the National Council on Disability indicates that transplant outcomes for people with disabilities are no different than those without.
What the federal law seeks to change
If passed, the federal legislation would bar disability discrimination by eliminating disability status as a determining factor for organ transplant candidacy. Additionally, the law would set a consistent national standard for selection criteria that clarifies how health care providers should consider disabilities when determining organ transplant candidacy.
The bill would also establish an expedited review of cases alleging disability discrimination at the Department of Health and Human Services and federal courts.
It's essential to qualify the new legislation and note that it will not facilitate a complete overhaul of the organ transplant system. However, the new bill would be a practical first step toward more significant progress. It would lead to physicians having a better understanding of when it is appropriate for disability to enter into transplant conversation.
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