Health Equity in Transplantation Coalition Applauds Congressional Black Caucus Chair Horsford for Asking HHS to Reverse Medicare Cuts Disproportionately Impacting Thousands of Black and Brown Transplant Patients
Congressional Leader Pens Letter to HHS Sec. Becerra, CMS Administrator Brooks-LaSure Expressing Deep Concern and Urging Immediate Restoration on Coverage for Lifesaving Blood Test Able to Catch Early Signs of Rejection
HEiTC Chair Al B. Sure! Calls Development Major Step Toward Justice for Black and Brown Patients Who Are Uncertain if Organs are Failing
Washington, D.C. – January 4, 2024 – The Health Equity in Transplantation Coalition (HEiTC), led by Al B. Sure! and Rev. Al Sharpton, today applauded Congressional Black Caucus Chair Steven Horsford (D-NV) for urging the Biden Administration to reverse the Medicare cuts that have left thousands of Black, Brown, and other transplant recipients without a life-saving blood test that non-invasively detects early signs of organ transplant rejection.
Rep. Horsford late last month sent a letter to Health and Human Services Secretary Xavier Becerra and Centers for Medicare and Medicaid (CMS) Administrator Chiquita Brooks-LaSure urging them to reverse the March 2023 cuts. Noting he was “deeply troubled” about the disproportionately adverse impact of the decision, Horsford urged Sec. Becerra and Administrator Brooks-LaSure to explain why the ruling was made, rescind it, and ensure there are no other cutbacks on non-invasive blood tests, which are able to catch a rejection months in advance.
“We share the Biden Administration’s commitment to closing racial disparities in our health system,” the CBC Chair wrote in the missive. “All of us sit in government because we believe a better future is possible in which the children and grandchildren of our constituents have fair access to care. We know you share our mission of ensuring equitable care and appreciate your attention to this critically important matter.”
News of Horsford’s letter was welcomed by HEiTC Executive Chairman Al B. Sure! – the songwriter, podcast host, health and wellness ambassador who received a life-saving liver transplant in the summer of 2022.
“After a successful day of action on Capitol Hill last month, I and the entire Health Equity in Transplantation Coalition are humbled to see Chair Horsford make this call,” said Al B. Sure!, Executive Chairman of HEiTC. “Tens of thousands of organ transplant recipients, a disproportionate share of which are Black and Brown, don’t know at this moment if the gift of life they received will fail them. All because a private contractor was allowed to peel back coverage on a life-saving test capable of catching a rejection well in advance of it happening. I want to thank Chair Horsford for being a constant champion of justice for Black and Brown Americans, especially in this moment when we need heroes in government like him.”
Contrary to coverage policies going back to 2017 for these blood tests, the sudden announcement on March 2nd by a private contractor, called a “Medicare Administrative Contractor” or “MAC,” to tie Medicare coverage to an invasive, risky surgical biopsy has plummeted surveillance use of these transplant blood tests due to cancellations, delays, or plain confusion as to whether Medicare coverage would still be provided.
HEiTC was formed to call on this misguided decision to be reversed, given that 40% of organ transplant recipients are Black and Brown – despite making up only 32% of the U.S. population. From December 4-6, HEiTC members joined with the Honor the Gift coalition and other members of the organ transplant family to meet with key Congress Members on Capitol Hill.
Formation of the coalition, its call to action, and Congressional visit has gained national attention, with pieces in The Hill, TheGrio, Fox News, USA Today, the New York Daily News, and the Amsterdam News. Last month, Al B! and Rev. Sharpton also sat down with MSNBC’s Symone Sanders to discuss the decision’s disproportionate impact on Black and Brown Americans.
Paul T. Conway, a 26-year kidney transplant recipient and Chair of Policy and Global Affairs for the American Association of Kidney Patients (AAKP), the nation's largest kidney patient organization, stated, "Organ donors and transplant recipients welcome the mounting bipartisan Congressional demands on HHS Secretary Becerra to provide a clear answer on why CMS and their contractors disrupted established policy and timely transplant recipient access to surveillance blood tests used to monitor precious Gifts of Life. AAKP thanks the Congressional Black Caucus for adding their strong voice to the tens of thousands of transplant patients and their families calling for the immediate rescission and withdrawal of this soulless and senseless interference in transplant medicine. Federal data shows minority kidney patients face significant obstacles and disparities in both initial transplantation and re-transplantation - so the onus is on CMS and their contractors to demonstrate how their actions have not already undermined the nation's commitment to protect vulnerable transplant patients and to prevent avoidable organ rejections and the need for re-transplantation." Since 2017, AAKP has conducted the largest, non-partisan voter registration program across the kidney community, KidneyVoters™.
“This decision has left me with an unsettling uncertainty about the status of my kidney health, forcing me to wait for overt symptoms before seeking an invasive biopsy,” said Evan Dame, a DC-based kidney transplant patient and advocate speaking on behalf of the Honor the Gift coalition. “It deeply troubles me how these changes exacerbate existing health disparities. Black Americans are four times more likely to experience kidney failure compared to white individuals. Yet, we are significantly less likely to make it onto a transplant waitlist, we wait longer once on the list, and, post-transplant, we have a higher likelihood of rejection. These new restrictions will only make this inequitable reality worse.”
A bipartisan group of current and former lawmakers have urged an end to these cuts. In August, a bipartisan letter signed by 14 members of the House of Representatives, led by Reps. Anna Eschoo (D-CA) and Dr. Michael Burgess (R-TX), expressing concerns about the March rollbacks was sent to CMS. In October, Reps. Eshoo and Burgess wrote a follow-up letter further pressing for answers on why Medicare contractors rolled back coverage without public comment and through a billing article. The issue has gained national attention in Wall Street Journal editorials published on September 10, 22, and 26, calling out this decision and the need for further transparency.
Dr. Keith Melancon, Chief of the Division of Transplant Surgery at George Washington School of Medicine and advocate for Honor the Gift, said, "I am grateful for Rep. Horsford’s support in asking the Administration to reverse this coverage change that has significant consequences for transplant patients, especially those in underserved communities. Since the March ruling, our center has drastically cut down on the number of surveillance tests to match the number of biopsies we had been conducting before the change. But molecular tests and invasive biopsies are not interchangeable, and clinicians need the ability to make the most medically appropriate choices for our patients, so that every precious transplant lasts as long as possible.”
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