NCD Letter to UNOS OPTN HRHSA Regarding Organ Transplant

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September 25, 2019

Thomas J. Engels, Acting Administrator
Health Resources and Services Administration (HRSA)
5600 Fishers Lane
Rockville, MD 20857

Maryl Johnson, MD, President
The Organ Procurement and Transplantation Network (OPTN)
Post Office Box 2484
Richmond, Virginia 23218

Brian Shepard, Chief Executive Officer
United Network for Organ Sharing (UNOS)
700 N 4th St
Richmond, VA 23219

Dear Mr. Engels, Dr. Johnson, and Mr. Shepard:

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy to advance the goals of the ADA: equal opportunity, full participation, independent living, and economic self-sufficiency for people with disabilities. On behalf of NCD, I write to inform you that today we submitted a report to the President and Congress entitled Organ Transplant Discrimination Against People with Disabilities,[1] that found, among other things, that people with disabilities are frequently denied access to organ transplants based on transplant centers’ written and unwritten policies excluding people with disabilities as candidates for a transplant, and even refusing to evaluate a particular person’s medical suitability for an organ transplant because of the person’s disability.

Organ transplants save lives. But for far too long, people with disabilities have been denied organ transplants as a result of unfounded assumptions about their quality of life and misconceptions about their ability to comply with post-operative care. Although the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibit discrimination on the basis of disability, organ transplant centers and medical professionals are often unaware that this prohibition applies to the organ transplant process.

NCD also found that disability-based discrimination occurs not only in the allocation of organs, but also in the procurement process where policies have not adequately protected individuals and families from being contacted and even pressured by organ procurement organizations (OPOs) prior to a decision that life support will be withdrawn. The newly injured population is particularly vulnerable to abusive organ procurement policies because their recent trauma and uncertain future makes them susceptible to the message that their death would mean more to the people around them than their life. People with disabilities in intensive care units whose prognoses are uncertain are likewise vulnerable to abuse in organ procurement practices. NCD is concerned that  recent OPTN proposals would weaken protections for conscious people with disabilities and explicitly encourage individuals to see themselves as sources of organs to save others. NCD also found that  UNOS/OPTN has not established protocols to ensure that organs are not procured before a conscious potential donor has received appropriate psychological counseling and supports to live.

NCD asks UNOS/OPTN to proactively work to prevent people with disabilities from being discriminated against in the organ procurement process. Specifically, NCD recommends that UNOS/OPTN:

  • Include disability rights representatives on the UNOS/OPTN Board and key committees in order to ensure that UNOS/OPTN continues to apply its waitlist criteria in a non-discriminatory manner, and to reform any UNOS/OPTN guidelines that could be interpreted by organ transplant centers as allowing people with disabilities to be kept off of the waitlist for a transplant.
  • Ensure that individuals and families are able to make informed decisions about the withdrawal of life-sustaining treatment prior to and independent from any contacts from organ procurement organizations (OPOs). Those decisions should only be made once the family has received information in plain language regarding assessments that will be conducted, prognosis, and treatment options.
  • Ensure that conscious potential donors are provided appropriate psychological counseling and support to live before OPOs are permitted to approach them.
  • Prohibit any form of organ recruitment program that selectively targets people with disabilities, including newly injured individuals, people with amyotrophic lateral sclerosis (ALS), or other life-limiting conditions.
  • Ensure that organ procurement requirements are clear and specific, comply with the nondiscrimination requirements of the ADA and Section 504, and include appropriate and proportional consequences for failure to comply.
     
  • Incorporate disability information pertaining to the organ donor, including primary diagnosis and type of disability, in organ procurement data collection.

In conjunction with the release of this report, NCD also wrote to the Department of Health and Human Services Office for Civil Rights (HHS OCR) and the Department of Justice  (DOJ) to urge them to issue guidance on organ transplant discrimination against persons with disabilities 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 (Section 504) apply to organ transplant centers and hospitals, and made detailed recommendations on the content of the guidance.

NCD is committed to working with you and sharing further information to ensure that people with disabilities do not encounter discrimination in the organ transplant and procurement process. Should you have questions about this report or letter, or wish to discuss, please contact Joan Durocher, General Counsel and Director of Policy, or Ana Torres-Davis, Attorney-Advisor, at jdurocher@ncd.gov or atorresdavis@ncd.gov .

Respectfully,

Neil Romano
Chairman