Editor’s Note: See response from Dr. Yolanda Becker, President of OPTN/UNOS Board of Directors here.

Recently proposed changes to the Organ Procurement and Transplantation Network (OPTN) committee structure threaten to dilute the voice of the transplant special constituents, namely the Minority Affairs, Pediatrics, Living Donor, Ethics, and Patient Affairs Committees. We oppose the proposed changes in structure, and we present a few solutions to address our major concerns about the proposal.

In 1984, the National Organ Transplant Act (NOTA) called for the creation of a national network to coordinate the allocation of organs and collect clinical data about organ donors, transplant candidates, and recipients. The United Network of Organ Sharing (UNOS) was awarded the initial federal contract in 1986 to operate as the OPTN and has served in this function ever since. The goal of the OPTN is 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. In addition, it is charged to assure equitable access by patients to organ transplantation and equitable allocation of donated organs.

The process by which policies at the OPTN are developed and implemented is a collaborative reiterative process that begins with 1) a committee that identifies an issue, drafts the proposal, requests and responds to feedback from the public, 2) the public who has the opportunity to provide feedback, and 3) the board who meets twice a year to review and approve proposals. Once the board approves a proposal, it becomes policy and moves to the implementation phase.

Some committees represent special constituents such as pediatrics, living donors, or minority/underserved populations. Others represent specific organs such as the pancreas, kidney, or liver transplantation committees. Not surprisingly, organ-specific committees historically derive and execute much of the allocation policy for UNOS. However, constituent committees, such as the Minority Affairs Committee (MAC) have also been responsible for extremely important policies that have served to enhance equity in transplantation. The MAC, working in conjunction with other OPTN committees, has had a major role in policy change that has led to HLA matching weight changes, the Non-A1/Non-A1B (A2/A2B) Donor Kidneys into Blood Group B Candidates, and the “Dialysis waiting time” policies that changed the transplant candidate waiting-time to the date of dialysis initiation. The last example changed the definition of wait-time initiation, which improved access for minority populations who are referred later than the non-minority population.

The current proposal on committee structure would 1) retain subject committees (SC), defined as organ-specific or other groups where broad policy development is required, and 2) create new expert councils (EC), defined as groups with a perspective that is needed on three or more subject committees. The proposal would dissolve many of the current special constituents’ committees (including MAC) and reduce them into an EC that will no longer have authority to create new policy. While some of the goals of the proposal (e.g., to increase community participation and efficiency) are meritorious, we have major concerns that are outlined below.

First, while the SCs will be able to continue to officially sponsor public comment and Board proposals, the EC would only be allowed to “provide perspectives on public comment and Board proposals” and “use tools to perform outreach to larger community with that perspective in order to provide broad perspective of that constituent group.”

Second, while the SC Chairs will be able to formally present proposals to the Board, the EC chairs (or Board members serving on the respective EC) will only be allowed to informally “provide the Board with perspectives during Board discussion on new or revised policies.” This may imply that the presence of the EC Chair may at some point not be required if a Board member also serves on the committee.

Third, while the SC will continue to meet in-person twice a year and online, the in-person meetings for the EC will be reserved for only selected Core council members. The remaining members would interact online prior to the UNOS public comment period with the possibility of in-person meeting at professional conferences or other events.

Fourth, while the SC will continue to have regional representatives, the EC will not have regional representatives. The language within the current proposal indicates that this is an attempt to eliminate the perception “that certain voices and perspectives carry more weight than other voices.” However, it is unclear how the proposed online format of the EC will achieve this goal.

The proposed changes to ECs eliminate the ability of the affected committees to submit policy proposals and potentially dilute the perspective of several important groups of the transplant community (minorities/underserved, children, and living donors, among others). It shifts control for change in policy from the currently equal committees to the organ specific committees and proposes that the newly formed EC “convince” the organ specific members that a change is needed in order to move policy forward by the single EC member sitting in that committee. This would constrain the ability to effectively advocate for the communities they represent. Without designated committees specifically tasked to address the crucial issues of the above-mentioned interest groups (Living Donors, Minority Affairs, Pediatrics) or subject matters (Ethics, Patient Affairs), the transplant community risks overlooking the specific issues unique to these groups. The original inception of these committees served more than to lend a voice to these specific populations, but actually prioritized equity to access in transplantation, one of the key goals of the OPTN. These proposed changes threaten diversity, inclusion, and equity.

While professional societies, such as ASN and AST, have moved to communities of service, none of them have used these formats to produce national policy. They serve as sounding boards for unique clinical perspectives, as well as professional development and satisfaction. UNOS should keep the current structure and pilot opportunities for larger groups to participate in quarterly communications via phone or webinar regarding the work being performed at the OPTN and create other opportunities to learn about concerns from the community.

The public comment period ends on March 23, 2018. Please post your comments here.

– Post prepared by Dr. Sylvia E. Rosas (MAC Chair), Dr. Tanjala Purnell (MAC Sub-Committee Chair), and Dr. Irene Kim (MAC Vice-Chair). This blog post may not represent the opinions of all MAC members, UNOS, or their institutions.

 As with all content on the AJKD Blog, the opinions expressed are those of the author(s) of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.