Science in Donation & Transplant: Advocating for Science-Based Reform
Non-profit organization Science in Donation and Transplant focuses on promoting science-based standards in organ donation and transplantation. They aim to ensure the integrity of metrics and measures used in the sector, free from political influence. Recent developments highlight the need for evidence-based reform to address disparities in health equity within donation and transplant systems.
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Presentation Transcript
Science in Donation & Transplant Science in Donation and Transplant is a non-profit devoted to the support and education of all members and stakeholders in the donation and transplant communities.
Donors and transplant recipients alike deserve a well-aligned, science-based system. Our goal is ensuring that the metrics and measures used to credential, license, designate and certify donation and transplant organizations are grounded in science and protected from political whim and private financial influence
Timeline: HHS/CMS Rulemaking versus will of Congress November 2019: Congress mandates an in-depth peer reviewed scientific study of organ donation and transplant by the National Academies of Sciences, Engineering and Medicine (NASEM). November 20, 2020 with the scientific study still underway federal regulators at CMS approve rules governing Organ Procurement Organizations (OPOs) despite warnings from healthcare and science professionals on its potentially devastating impact. February 2022 Federal officials propose giving federal bureaucrats the power to delegate organ procurement responsibilities to uncertified entities replacing current community based, nonprofit, organ procurement organizations. February 2022 Landmark NASEM study authorized by Congress is released highlighting significant flaws in regulations recently enacted by federal regulators. Almost astonishingly, no one in Congress or HHS has made the landmark NASEM study the basis for reform going forward.
Health Equity in Organ Donation and Transplant and Fact Based Reform The NASEM report plainly states black patients are significantly less likely than white patients to be referred for transplant evaluation and then wait longer for a transplant once listed. NASEM concludes that the absence of HHS requirements to collect disaggregated data by race and ethnicity, gender/sex, age, and language in organ donation and transplantation research precludes efforts to fully understand inequities in organ transplantation.
Centers for Medicare and Medicaid Services (CMS) In contrast to the science in the NASEM Report, the RULE completely and disturbingly ignores the real issue, which is that race-based and socio- economic disparities in health care access and health care outcomes do exist and must be reckoned with in order to achieve equity.
The Governing RULE OPOs including yours, face standards and consequences on them alone. It ranks OPOs on the basis of two metrics: the organ procurement rate, which they control, and the transplantation rate, which they do not control. OPOs that so- called under-perform the medically and logically indefensible standards relative to their peers around the country are de-certified and must discontinue operations. This is not done anywhere in our medical system and will cause chaos.
Reform Going Forward (NASEM REPORT) Development of national performance goals and standardized metrics with which to evaluate the entire system and benefit all patients. Science-based roadmap to improve the performance of all OPOs and transplant centers. The Rule to this day ignore the science and sets the stage for chaos in the donation and transplant system.
