[Filed today, with credit to attorney Lisa Blumberg; deadline Feb. 1; short or long comments can be filed here.]
COMMENT ON CMS-2021-0184-0001
January 31, 2022
Not Dead Yet, a national disability rights organization, is pleased to respond to the portion of the Center for Medicare & Medicaid Services (CMS) December 3, 2021 request for comment (file number 3409-NC) that deals with equity in organ transplantation and donation. People with disabilities are often people of color or members of other disadvantaged groups. We deplore subjecting any group to disparities in access to needed organ transplants. However, our response will focus on the following two related questions posed by CMS:
(1) What changes can be made to current requirements to ensure that transplant programs provide equal access to transplants for individuals with disabilities; and
(2) What changes can be made to current requirements to address implicit or explicit discrimination, such as decisions made based on faulty assumptions about quality of life and the ability to perform post-operative care.
The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. All lives of persons who need and can benefit from organ transplants must be equally valued. The same is true of the lives of potential donors. The program must operate in strict compliance with the various federal and state laws that prohibit healthcare discrimination against members of any protected group.
We appreciate and welcome the concern that CMS has about the findings in the 2019 report by the National Council on Disability (NCD) on “Organ Transplant Discrimination against People with Disabilities”. (1) These findings indicate that despite federal and state protections, people with disabilities are often denied equal access to organ transplants solely on the basis of their disability and, moreover, that existing and proposed transplant policies fail to adequately protect people with disabilities (including those using forms of life support) from being pressured to be organ donors or from being deemed organ donors prematurely.
In a recent study of doctors’ perceptions of disabled people, 82.4% of the doctors surveyed felt that people with disability have a worse quality of life than others and fewer than 57% said they strongly welcomed disabled patients. (2) Lisa Iezzoni, the lead author and a health care policy researcher at Massachusetts General Hospital, stated, “The magnitude of physicians’ stigmatizing views was very disturbing.” (3) Such attitudes contribute to healthcare disparities and the organ transplant program is not above the fray.
We urge CMS to adopt regulations that specifically deal with prohibiting discrimination based on disability at any point in the organ transplant process. These regulations can be similar to the provisions of the bipartisan bill seeking to prevent organ transplant discrimination that has been introduced in the Senate. (4) The regulations should provide that a healthcare provider, transplant center or any organization that matches organs with patients may not on the basis of a qualified individual’s mental or physical disability— (1) determine that the individual is ineligible to receive an organ transplant or related services; (2) deny the individual an organ transplant or related services; (3) refuse to refer the individual to an organ transplant center or other related specialist for the purpose of receipt of an organ transplant or other related services; (4) refuse to place the individual on an organ transplant waiting list, or place the individual at a lower-priority position on the list than the position at which the individual would have been placed if not for the disability of the individual; or (5) decline insurance coverage for the individual for any procedure related to the person receiving an organ transplant.
The regulations should also provide that reasonable accommodations should be made in transplant policies and procedures so as to ensure that a patient with a disability is fully informed and involved in the process and that communication with all interested parties is enhanced. These accommodations may include providing, among other things, sign language interpreters and accessible digital and print materials for patients and families. Reasonable modifications should also encompass ensuring that a patient has the necessary support services to comply with postoperative care. For example, some patients may need a mechanism for shared decision making or in-home aide services. It should be emphasized that all patients are individuals. Needs will differ as will the ways in which these needs should be met.
Lastly and importantly, the regulations should encourage expedited review by the Office of Civil Rights and the courts of cases where discrimination in the organ transplant process is alleged.
We also urge that CMS adopt the key recommendations on pages 14-15 of the NCD report (5) to the extent that they are not incorporated into the regulations that we are asking CMS to draft.
For example, CMS should release guidance and provide technical assistance clarifying that Titles II and III of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 apply to organ transplant centers and hospitals. This guidance and technical assistance should detail the obligations of organ transplant centers and hospitals to avoid discriminating on the basis of disability.
CMS should explicitly state that making assumptions regarding the post-transplant quality of life for people with disabilities violates federal law. Quality of life decisions are entrenched in the health care system and in the larger society and eradicating them will take effort and education. The simple act though of making it clear that quality of life bias must not influence medical decisions may in and of itself cause some in the professional transplant community to change their approach. Regulations do carry moral authority as well as legal authority.
Similarly, it can be expected that the more transplant centers and providers are informed about the ways in which the practical issues posed by various disabilities can be dealt with as well as the range of supports that can and should be available, the more that concerns that disabled patients can not comply with needed post-operative care will be alleviated. Training and technical assistance in this area is immensely important and all transplant patients will feel a beneficial ripple effect.
Lastly, we would like to briefly discuss overreach in organ procurement since this is an issue that goes directly to the integrity of the transplant program. The NCD report described the case of Colleen Burns who had a history of depression and was thought to have gone into cardiac arrest after a drug overdose. Incredibly, she woke up on the operating table just as she was about to be an organ donor. Medical personnel had ignored signs that her brain was still functioning and ignored the possibility that the drug overdose was inhibiting primitive reflexes. (6) Equally shocking was the case of Ruben Navarro, a young man disabled by a neurological disorder, who did not die immediately when his ventilator was removed, but died eight hours later after his body was flooded with drugs and the antiseptic Betadine in preparation for organ donation. Although the surgeon involved was later acquitted of criminal charges (7), there was evidence that the actions of the transplant team hastened Mr. Navarro’s death. This simply cannot be tolerated. The line between organ donation and organ euthanasia must never be blurred.
Disabled people are vulnerable to pressures to stop treatment for life threatening conditions, especially in a cost cutting environment. This may be especially true for newly disabled people who have yet to acquire the skills for living with a disability as well as for people who use feeding tubes or breathing assistance, i.e. life support in their daily lives. People who have cognitive disabilities or presumed cognitive disabilities are also subject to such pressures. We are far from a level playing field where people can freely make treatment choices. We urge CMS to do all that it can to ensure that individuals and families can make informed decisions about whether or not to withdraw life sustaining treatment prior to and independent of any discussions with organ procurement organizations. Many people are quite willing to be donors should circumstances permit it, but such willingness should not be exploited to influence treatment decisions.
Please work with other offices within HHS and with the DOJ to maintain an organ transplant system that all of us can trust to value our lives equally.
Please contact us with any questions you may have. Thank you for your time and attention.
