FOR IMMEDIATE RELEASE
Press Contact: Rachel Noerdlinger
As Nation Faces Growing Challenges Around Access to Medical Care, Health Equity in Transplantation Coalition Issues Five Policy Priorities for 2025
Urges Incoming Federal Leadership to Expand Access to Organ Transplants, Create Parity in Healthcare Coverage for America’s Most Vulnerable Populations
(New York, NY, January 16, 2025) – As the nation prepares for an incoming presidential administration and a new Congress, the Health Equity in Transplantation Coalition (HEiTC) today issued its policy priorities for 2025, as part of its efforts to increase access to organ donations and post-procedural care as the nation grapples with a historic shortage.
“Health equity is the cornerstone to a strong, prosperous nation in which we can all not only survive but thrive,” said Al B. Sure!, Executive Chairman of the Health Equity in Transplantation Coalition (HEiTC), globally celebrated singer, songwriter, producer, author, and health and wellness ambassador. “One of the best ways to bring down the cost of living is to ensure fair access to organ donations along with consistent coverage for post-transplant care. This will guarantee all Americans who receive the gift of life will be able to work, raise their families, and live the American dream. In 2025, HEiTC will continue to deliver more results for our transplant family.”
“While we took major steps toward delivering for the transplant community last year, HEiTC still has a long journey on the road of justice for these at-risk Americans,” said Rev. Al Sharpton, Senior Advisor for the Health Equity in Transplantation Coalition (HEiTC). “That’s why we will expand our efforts to look at the whole picture of issues these Americans face, especially those in Black and Brown communities who deserve the same access to care as anyone else. In the months ahead, our Coalition will raise the heat on our partners in the public and private sectors to deliver on this bi-partisan issue.”
“Access to organ transplants and the daily care that comes after should be a priority no matter who holds elected office or who sits in the C-suite of an insurance company,” said Rachel Noerdlinger, Co-Founder of the Health Equity in Transplantation Coalition (HEiTC). Our policy priorities for 2025 represent the fact that issues around organ transplantation affect everyone, with our economy and healthcare system lagging behind every day in which we do not address them. HEiTC is excited to roll up our sleeves this year, expand our Coalition, and advance these key issues.”
In 2025, HEiTC will seek to remove more barriers to organ transplantation and care by focusing on the following issues:
Ensure Full and Equitable Access to Post-Transplant Care: HEiTC has pushed for Medicare coverage for non-invasive blood tests for regular surveillance of transplanted organs since its inception in November 2023. In August, the Centers for Medicare and Medicaid Services (CMS) clarified these tests are covered for regular monitoring in order to catch early signs of a rejection. Privately owned Medicare Administrative Contractors (MACs) to CMS are currently determining whether this coverage should change in a new draft Local Coverage Determination (LCD). HEiTC will continue to work with the transplant community to ensure tests are covered for regular surveillance, as part of a greater push to guarantee access to post-transplant care.
Increase the Volume of Organ Transplants by Expanding Access: The United States is in the throes of a historic shortage of organ donations. More than 100,000 people currently need an organ transplant — a full half of whom are Black or Hispanic/Latino. Many Americans struggle to get on the waitlist and spend months, if not years, waiting for a match. An average 17 people die in the United States every day awaiting an organ transplant, according to the Human Resources and Services Administration (HRSA), as a result of this shortage. HEiTC will work to advance federal policies designed to increase the number of organ transplants through incentives, reduced barriers and increased availability and access.
Provide Economic Security for Transplant Recipients and Living Donors: Income remains a major barrier for both organ transplant candidates and donors who cannot afford time off of work/lost wages, which has helped fuel the national organ shortage. A major reason behind this is the particular financial burden living donors face. More than 90% of donors are forced to cover their own costs affiliated with the procedure because existing restrictions only reimburse lost wages if the combined income of the recipient and donor is under about $51,000. Organ transplant recipients face a similar, if not worse, financial challenge if they miss days of work for the operation and recovery, which transplant centers have said is one of the leading non-clinical barriers. While existing legislation ensures one cannot be fired for missing work for the procedure, there is minimal financial support for costs such as travel, lodging or childcare. These are especially high for patients who may need to relocate closer to a transplant center from their procedure through recovery. Additionally, living donors have reported either higher premiums or overall difficulty getting life insurance after giving the gift of life. HEiTC will advocate for stronger economic support, which has seen bipartisan support, for both transplant patients and living donors.
Close Gaps in Insurance Coverage for Transplant Patients: Healthcare coverage for organ transplant recipients, both during the procedure and the daily care that comes after, vastly varies depending on the plan. The transplant community has consistently raised how varying coverage between private plans leads to inequities within the system, especially for Black, Brown and under-resourced communities. Disparities between private and public coverage also exist. Indeed, studies have found a higher mortality rate for kidney transplant patients on public insurance; patients who transition from public to private health insurance, or vice versa, also face a greater mortality risk. HEiTC will work to elevate the importance of comprehensive coverage by all carriers for medically necessary care related to organ transplantation.
End Excessive Use of Prior Authorization for Transplant Patients: While prior authorizations began in the 1980s as a cost-saving measure in the healthcare industry, the policy has become highly criticized within healthcare as a major barrier to timely care. That’s because prior authorization, which can take up to 14 days for Medicare Advantage patients, has created a lengthy review process that also takes time away from healthcare professionals. Transplant patients have been particularly impacted as the lag can take vital hours or even days away from the urgent need for care. Lawmakers in recent years have sought to cut through the industry’s red tape in recognition that it has morphed into a major barrier when every second counts. Further research has brought into question the need for prior authorization for post-transplant care overall. A survey of the Illinois Hospital and Health Science System released in 2023 found that 85% of nearly 900 prior authorization requests for immunosuppressants between November 2019 and December 2020 were approved. Despite the overwhelming approval rate, professionals lost an estimated 440 hours over that one year on submissions and follow ups alone, in addition to more than 120 hours working on appeals. These were valuable hours focused on paper work instead of providing care. HEiTC will advance policies that ensure unnecessary prior authorizations do not hinder post-transplant care.
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