This is the full complaint filed by six patients accusing HHS of maintaining a liver allocation policy that violates the National Organ Transplant Act and the Department's own regulations.
In a letter to the OPTN/UNOS Liver and Intestinal Organ Transplantation Committee, CODE urges the Committee not to move forward with a new proposal on liver distribution reform that deviates from a proposed set of policies released for public comment earlier this year. CODE has serious concerns about the revised proposal because it would not produce meaningful reduction in geographic disparity in access to transplants and did not undergo public comment.
The Coalition for Organ Distribution Equity (CODE) recently submitted a comment on the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) Liver and Intestinal Organ Transplantation Committee’s (Committee) proposal for Enhancing Liver Distribution. In the letter, CODE noted its support for policies that increase sharing and reduce disparities in liver distribution nationwide. "We applaud the Committee’s painstaking efforts to achieve equity for the thousands of patients who needlessly suffer under our unfair and irrationally-configured distribution scheme," the letter states. "Contrary to clear federal objectives and a robust evidence base establishing disparity, patients in certain places have had to wait to get very sick or in some cases die before they could get a transplant."
The Greater New York Hospital Association (GNYHA), recently submitted a comment on the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) Liver and Intestinal Organ Transplantation Committee’s (Committee) proposal for Enhancing Liver Distribution. In the comment letter, GNYHA specifically addresses the continuing disparity that leads to higher overall death rates where patients wait longer for life saving transplants. "Patients who wait longer have a higher chance of dying after transplant. In geographically disadvantaged areas, the detriment of waiting has been high, lowering a candidate’s chances of survival both before and after transplant," the comment letter states. "Every transplant candidate should have an equal chance to receive a lifesaving organ transplant because donated organs are a shared national resource. Equitable transplantable organ distribution cannot be achieved while patients in some places continue to wait longer, get sicker, or die before they can receive a transplant."
The UNOS/OPTN Liver and Intestine Committee (Committee) has released a liver distribution reform proposal, “Enhancing Liver Distribution,” that seeks broader sharing of donated organs for the thousands of patients currently suffering under our inequitable distribution scheme. While this proposal is a good starting point, we urge the Committee to establish a goal toward eliminating geographic disparity nationwide and adjust this proposal as necessary to meet that goal.
The proposal will be open for public comment from July 31, 2017 through Oct. 2, 2017. Click here for information on how to comment on the proposal.
A new paper published in BMC Medical Ethics argues that policymakers should adopt a new proposal for organ allocation "to reduce geographic inequities." As the paper explains, "The 11 original regions for organ allocation in the United States were determined by proximity between hospitals that provided deceased donors and transplant programs. As liver transplants became more successful and demand rose, livers became a scarce resource. A national system has been implemented to prioritize liver allocation according to disease severity, but the system still operates within the original procurement regions, some of which have significantly more deceased donor livers. Although each region prioritizes its sickest patients to be liver transplant recipients, the sickest in less liver-scarce regions get transplants much sooner and are at far lower risk of death than the sickest in more liver-scarce regions. This has resulted in drastic and inequitable regional variation in preventable liver disease related death rate."
Today, the Coalition for Organ Distribution Equity (CODE) wrote to Health and Human Services (HHS) Sylvia Mathews Burwell to offer its comments on a recent proposal, entitled Redesigning Liver Distribution, submitted by the Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS). CODE strongly supports the proposal and urged HHS to address allocation policy concerns that were also highlighted in a recent letter from Members of Congress. According to today's letter, the pending proposal to reduce the number of transplant regons "could save hundreds of lives over the next five years and generate nearly $250 million in savings from transplantation-related expenses."
The letter can be found in full below.
68 bipartisan members of the U.S. House of Representatives wrote a letter to Sylvia Mathews Burwell, Secretary of the Department of Health and Human Services (HHS), to thank the agency for its demonstrated commitment to addressing geographic disparities in access to livers for transplant as well as commend the Health Resources and Services Administration (HRSA) and the Organ Procurement Transplant Network (OPTN) for proposing an alternative liver transplant distribution model. "In the wake of the successful White House Organ Summit, wherein the goal of ending waitlist-related deaths was broadly embraced, we urge you to remain vigilant in the effort to improve the liver distribution process and save lives," they write.
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 OPTN/UNOS Liver and Intestinal Organ Transplantation Committee’s (Committee) proposal for public comment: Redesigning Liver Distribution. "We applaud the Committee’s hard work to address the difficult problem of equitable distribution for the current supply of livers for transplant in the U.S.," CODE writes. "The policy encompassed within the proposal will bring tremendous benefit to the thousands of patients who suffer due to the current inequitable distribution scheme. As an organization dedicated to equity in liver distribution, CODE supports the policy as written, encourages its expeditious finalization, and looks forward working with the Committee toward successful implementation."
As the OPTN/UNOS Liver and Intestinal Organ Transplantation Committee considers a proposal to reform the current system for liver distribution, some opponents of the proposal have said that existing disparities in organ distribution are linked to the performance of OPOs in that region. OPO performance has been measured based on two factors: liver yield and liver donor conversion ratio. While some stakeholders have suggested OPO performance underlies the existing disparity, empirical evidence demonstrates that the current inequity is due to large differences in demand across regions. Furthermore, even if every OPOs performed optimally, the current disparity would continue.