The Coalition for Organ Distribution Equity submitted a letter to the Organ Procurement and Transplantation Network (OPTN) United Network for Organ Sharing (UNOS), commenting on the Liver and Intestinal Organ Transplantation Committee’s proposal to establish a National Liver Review Board (NLRB). "While CODE generally supports the Committee’s intent and the structure of the NLRB proposal," Executive Director Harriet Melvin states, "we believe it overlooks the critical need for liver distribution reform." Melvin comments on the need to restructure the current allocation system from eleven geographic regions to four in order to "address longstanding and unacceptable geographic disparities." Melvin notes that "with modern organ preservation technology, patient need – and not geographic location – should be the primary criterion to determine how and where organs are distributed."
On June 22, 2015, the Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Liver and Intestinal Organ Transplantation Committee held an educational forum to present the findings and recommendations regarding potential improvements to liver distribution. These slides from the presentations delivered during the forum are now available here.
The Organ Procurement and Transplantation Network (OPTN) is a public-private partnership that links all professionals involved in the U.S. donation and transplantation system. With collective efforts focused on patients, the are to increase the number of and access to transplants, improve survival rates after transplantation, and to promote patient safety and efficient management of the system. Their website (optn.transplant.hrsa.gov) includes a number of helpful resources for professionals with an interest in the donation and transplantation system.
This letter is one sample of the 74 letters HRSA Administrator Wakefield sent to members of the U.S. House of Representatives in response to their letter that same month. In it, HRSA explains that the UNOS Committee goal is to increase access to livers for patients with the greatest medical urgency and to decrease geographic disparity for these patients. HRSA notes that another forum for public comment is planned for late spring 2015.
10 bipartisan members of the U.S. Senate wrote to HRSA Administrator Mary Wakefield criticizing the inequities in the current system of distributing organs for transplant. “As a result, many more people die while on the waitlist … in certain areas of the country than in others.” The Senators applaud the models explored by the UNOS Committee thus far as reducing wait times, costs and deaths, and suggest additional models may also be considered that achieve the same goals.
74 bipartisan members of the U.S. House of Representatives wrote a letter to HRSA Administrator Mary Wakefield calling for reforms to the current policy governing organ distribution and expressing support for the direction of the UNOS Committee. “[T]he simple fact that alternative models wills save numerous lives across the country should be decisive …”
This statement from the Chair of the OPTN/UNOS Liver and Intestinal Organ Transplantation Committee summarizes comments delivered by participants at the September 16, 2014, open forum for responses to the UNOS Concept Paper. The Chair commits to further studying and refining the metrics and other inputs used to generate the alternative models presented in the paper and to welcoming public comment going forward.
In this paper, released in June 2014, the Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Liver and Intestinal Organ Transplantation Committee identifies the considerable geographic disparities in organ access that exist across the country at present. UNOS references a long history of inquiry, research and public comment, dating prior to a March 2000 final regulation from HRSA, through Institute of Medicine (IOM) recommendations and Department of Health and Human Services (HHS) advisory committees, that preceded the analysis presented in its paper. Ultimately, UNOS compares the present system to one where the nation is divided into four or eight districts for organ distribution, noting that these could drastically reduce the average acuity of patient organ failure at the time of transplant and save over 500 lives over five years.
In response to an inquiry from the former Administrator of what is now the Centers for Medicare and Medicaid Services (CMS), HRSA provides an overview of the considerable federally-funded study and research that has been devoted to the issue of organ distribution thus far, and lays out its plan to generate evidence-based approaches to designing potential reforms.
HRSA thanked Senator Gillibrand for her letter to them, sent the month prior, and described the work they are performing “on multiple fronts … to improve access to donor organs for those patients most urgently in need, regardless of geography.”