NCD Letter to House Ways and Means Committee on OPOs RFI

June 12, 2025

Committee on Ways and Means
U.S. House of Representatives
1139 Longworth House Office Building
Washington, D.C. 20515

Dear Chairman Smith and Ranking Member Neal,

I am writing in my capacity as Vice Chair / Acting Chair of the National Council on Disability (NCD), an independent, bipartisan federal agency that advises Congress, the President, and his Administration on matters affecting the lives of people with disabilities, regarding the Committee’s recent Request for Information (RFI) inquiring on activities of tax-exempt Organ Procurement Organizations (OPOs).

While NCD does not have research specific to the scope of the current RFI, we have conducted research into the organ donation process, which included an examination of OPOs. In addition, we are aware of Congress’s interest in ensuring nondiscrimination in the organ transplant process more broadly, as exemplified with last year’s House passage of the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1520) and this year’s recent Energy and Commerce Committee passage of the same. Therefore, NCD believes it adds helpful context to the Committee’s work by offering a summary of the relevant research findings we have on OPOs and our engagement with CMS with respect to their own RFI affecting OPOs from 2022.

In the Ways and Means RFI, the Committee acknowledges, “OPOs receive reimbursement at 100 percent of cost from Medicare for all costs classified as allowable under program regulations…”¹ Accordingly, as recipients of federal funding, section 504 of the Rehabilitation Act prohibits OPOs from discriminating against people with disabilities. However, in NCD’s research, we found that the United Network for Organ Sharing (UNOS), which supervises OPOs, has proposed organ procurement policies that pose serious risk to people with disabilities, and OPOs rely on those UNOS policies, which can have deadly discriminatory impact in procurement practices.

OPOs attempt to recruit new organ donors and provide donors with information and support, and in our research, NCD found that existing policies do not do enough to adequately protect individuals and families, including those newly injured, from being contacted and even pressured by OPOs to donate organs, even before a decision to withdraw life support has been made. NCD’s bioethics series of reports² outline that negative biases and inaccurate assumptions about the quality of life of a person with a disability can result in the devaluation and disparate treatment of people with disabilities, and in the medical context, these biases can have serious and even deadly consequences.³

As explained in our 2019 report, Organ Transplant Discrimination Against People with Disabilities, 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.”⁴ People with disabilities in intensive care units who have uncertain health forecasts are also vulnerable to abusive procurement practices. As noted in our report, in the initial phase of a serious injury or a serious aggravation of a chronic or progressive condition, interventions such as use of a feeding tube or even ongoing critical medications may involve decisions that could lead to death, which makes them circumstances that create potential for organ donation and thus OPO activities.⁵ Pervasiveness of stereotypes held by medical professionals that assume a lower quality and/or value of life of people with disabilities can also affect the medical treatments offered to people with disabilities, thus further endangering their lives and exposing them to premature organ procurement messaging.

As the Committee makes mention, the Trump administration has shown interest in OPOs’ activities since the first Administration. Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act prohibit hospitals and OPOs receiving federal funding from discriminating against people with disabilities, which includes how they pursue procurement of organs. And in a final rule published during the last Trump administration that went into effect in 2022, CMS acknowledged, “[S]ection 504 and section 1557 protect qualified individuals with a disability, including prospective organ recipients with a disability and prospective organ donors with a disability, from discrimination in the administration of organ transplant programs.”⁶ In response to CMS’s interest in OPOs in recent years, NCD has offered pointed advisement. In response to a December 2021 RFI from CMS titled “Organ Procurement Organizations Conditions for Coverage: Revisions to the Outcome Measure Requirements for Organ Procurement Organizations,” which asked “Are there revisions that can be made to the transplant program conditions of participation (“CoP”) or the organ procurement organization (“OPO”) conditions for coverage (“CfC”) to reduce disparities in organ transplantation?,” NCD responded, in part, advising: “Prohibit OPOs from approaching families about organ donation before the family has made a decision about the withdrawal of life-sustaining treatment and from approaching conscious potential donors until they have received psychological counseling and support to live.”⁷

As the Ways and Means Committee continues its investigation into OPO’s tax-exempt status, we hope that the additional situational awareness of NCD’s findings and advisement to policymakers regarding OPO’s at-times discriminatory activities toward people with disabilities will help inform your research. If NCD can assist the Committee’s work through any other means, please do not hesitate to contact our Executive Director, Ana Torres-Davis, atorresdavis@ncd.gov, and Director of Legislative Affairs and Outreach, Anne Sommers McIntosh, amcintosh@ncd.gov, who will coordinate a response. We stand ready to serve.

Respectfully,

David Shawn Kennemer
Vice Chair, Acting Chair

Cc:// Members of the Committee on Energy and Commerce, U.S. House of Representatives

-—————-