We submit this comment on behalf of the Center for Dignity in Healthcare for People with Disabilities (Center for Dignity). The Center for Dignity is an interdisciplinary coalition of medical providers, researchers, ethicists, individuals with disabilities, and their family members. The Center for Dignity aims to identify and reduce life-limiting healthcare inequities faced by people with intellectual and developmental (ID/DD) disabilities. One of the Center for Dignity’s primary focus areas is on reducing barriers to life-saving treatments, including organ transplantation, for people with ID/DD, through policies and guidelines related to medical discrimnation.
The Center for Dignity is uniquely positioned to provide this comment based on the experience of the individuals who are a part of the organization and both directly and indirectly involved in organ transplantation for people with ID/DD.
In addition, we feel the Center for Dignity’s input is even more important because, as this “Request for Information” notes, the transplant program CoPs were updated in 2019 under 84 FR 51732 and in that rule, the proposal to include a non-discimination section was not explicitly included in the final rule (when sections § 482.13(i) for hospitals and § 485.635(g) for CAHs were replaced by instead deferring to the nondiscrimination requirements of Section 1557 of the Affordable Care Act).
In response to the fact that the “number of organs discarded continues to be high” and the subsequent suggestion that “Transplant programs must play an important role in reducing the organ discard rate and can do so by accepting and utilizing more organs that are deemed ‘marginal,’” we would like to question to whom “marginal” transplants were later successfully given, and if the measure of success is the same for marginal versus non-marginal organs? Are there patterns of providing an increased proportion of marginal rather than non-marginal organs to patients that fall into protected classes? That is, are patients that experience ableism, racism, classism, etc. more likely to be given “lower quality” organs than others in an attempt to minimize waste?
Transplant Program COP’s
Transplant programs’ conditions of participation (CoPs) often do not meet the specific needs of people with disabilities, nor do people with disabilities receive satisfactory care. Many people with disabilities report feeling “passed over” for organ transplants, but they are not receiving information from their transplant program or transplant surgeon about why their wait times are longer than they were initially estimated to be. Despite federal discrimination protections, there is no current federally funded organ transplant discrimination prevention act. Some states have attempted to enact protections against discrimination through legislation; however, the organ transplantation system, by design, still discriminates against people with disabilities at various stages in the transplantation process. In a September 25, 2019 study, the National Council on Disability, “examined applicable federal and state laws, the disability-related policies of various organ transplant centers, and policies of the Organ Procurement and Transplantation Network (OPTN).” The NCD found that discrimination continues to occur even “in the states that have enacted laws explicitly prohibiting such discrimination; that disabilities unrelated to a person’s need for an organ transplant generally have little or no impact on the likelihood that the transplant will be successful; and that many organ transplant centers have policies that bar or caution against placing people with HIV, psychiatric disabilities, or intellectual and developmental disabilities (I/DD) on the waiting list to receive an organ transplant.” Physicians often hesitate to put people with disabilities on the transplant list because nearly 80% of U.S. doctors believe people with a significant disability have a worse quality of life than those who are not disabled.
Current transplant programs and CoPs can be improved in order to ensure performance quality in organ transplantation by guaranteeing that people with disabilities are not disqualified by their disabilities– and that they are receiving the same level of care and consideration as doctors would otherwise provide to non-disabled patients. Further, it is important that any incentives that are put in place to encourage the use of marginal or suboptimal quality organs protect people with disabilities and others from protected classes from receiving a disproportionate number of these organs. It would not solve any equity concerns to remove systemic barriers people with disabilities face when receiving transplants, only to provide them with a lesser quality of care.
Meaningful outcome measures that should be included in the transplant outcomes evaluation should focus on the survival of patients post-transplant and eschew subjective “quality of life” judgments that can often hold bias against people with disabilities. Data show that “many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence” and this has been termed the “disability paradox.” However, such a paradox can be explained by the social stigma surrounding disability, which underwrites the common assumption that disability inevitably and severely reduces well-being. This tension between first and third person judgments about disability and quality of life can be avoided in the context of transplant outcome measures altogether by avoiding the use of quality of life measures when assessing the success of a transplant procedure.
The Center for Dignity clearly understands that post-operative care includes multiple medications at specific times throughout the day, follow-up medical appointments, and managing common effects. Unfortunately, it is often assumed by physicians that people with disabilities would not be able to comply with these post-operative care procedures. However, research shows us that when people with disabilities are provided with the necessary supports, such as personal assistants, auxiliary aids, and/or other social supports, they are no less likely to comply with post-operative care orders than nondisabled people. Physicians have also assumed that a person’s disability will, in and of itself, impact the medical likelihood of transplant success. There is significant research showing that this is also not true.
Transplant Recipient Patient Rights
Transplant programs should focus on communication and transparency with people with Intellectual and Developmental Disabilities (I/DD) by offering the option of a supported decision-making process (SDM). Supported decision-making is a tool that allows people with I/DD to retain their decision- making capacity by choosing supporters to help them make choices. A person using SDM selects trusted advisors, such as friends, family members, or professionals, to serve as supporters.
In an effort to facilitate greater communication and transparency with patients on their waiting list regarding organ selection, transplant programs should be required to notify patients when an organ becomes available and discuss with them whether to accept it, explaining any reasons there may be to deny the organ, including its quality or any other concern the doctor may have. Such transparency in decision making is a basic tenet of the informed consent process that should be honored. When patients belong to protected groups that have a history of being denied their right to informed consent – including people with disabilities, such transparency is even more crucial.
Equity in Organ Transplantation and Organ Donation
Transplant Program Conditions of Participation can and should be revised to create a more equitable transplant experience for racial, ethnic and/or disabled minorities. As evidenced through the study from the National Council on Disability, we know that implicit and explicit bias exists for patients with a disability and/or those that are part of a racial or ethnic minority. Transplant Program COP’s should build in safeguards that will allow these patients to not be disqualified based off of this status alone.
While in a perfect world, these safeguards would be enough, it is also imperative that a person’s social determinants of health also be considered when making outcome judgments. Without factoring in a person’s social and economic context that has been shaped by systemic ableism, racism and social policies, we can not create a more equitable system. We can not only measure outcome success from the standpoint of a nondisabled, white person who has experienced an undue amount of privilege within the healthcare system (from his health insurance and choice of doctors to his ability to make a living wage).
One critical way transplant programs can ensure equal access to transplants for patients with disabilities is by removing measures of quality of life, which can often be biased when made by non-disabled people about the lived experiences of disability.
Another key concern is the potential for people with disabilities to experience unfair discrimination in organ allocation decisions because of assumptions about their ability to comply with post-operative care procedures. The Center for Dignity in Healthcare for People with Disabilities has developed Medical Provider Recommendations for Organ Transplants, in which they suggest that any “decisions concerning whether an individual is a candidate for treatment should be based on individualized assessments of the person, using current objective medical evidence, and not based on generalized assumptions about a person’s disability. This includes an individualized assessment into the person’s ability to comply with post-operative procedures, with access to supports such as direct caregivers or their social supports if needed. Any expectation that an individual does so independently would disregard the ADA’s requirements for reasonable modifications.”
Further, we would also like for you to consider the disproportionate impact these Conditions of Participation create for people with disabilities, and especially for people with disabilities that are also a member of other minority groups. While we can clearly see a need to determine who is eligible and who is not, the eligibility determinants often create large disparities among patients who are hoping for an organ transplant. Many of the policies at the organ transplant centers list either relative or absolute contraindications- which refers to facts about a person’s health that make them ‘less likely’ or ‘completely unlikely’ to be accepted. While UNOS does not consider ‘disability’ to be a contraindication, Organ Transplant Centers do consider disability to be a contraindication.
The Medicare/Medicaid system was created in an effort to create a more equitable healthcare system for people that would not have access to healthcare through an employer and would have high healthcare costs. This system is part of the social safety net for people with disabilities. However, if policies are in place which discriminate against these very people to begin with, these safety nets are not accomplishing their intended goals.
On behalf of the Center for Dignity’s Organ Transplant Subcommittee, thank you for the opportunity to comment on the Health/Safety Requirements for Transplant Programs, Organ Procurement Organizations and End-Stage Renal Disease Facilities.
We acknowledge that this “RFI is issued solely for information and planning purposes.”
Kara Ayers, PhD
Center for Dignity in Healthcare for People with Disabilities