Letter to Sylvia Mathews Burwell, Secretary of the Department of Health and Human Services - Regarding Liver Organ Donation

Letter

Dear Secretary Burwell:

We are writing to express our strong opposition to the proposal by the Organ Procurement and Transplantation Network's (OPTN) Liver and Intestine Committee entitled "Redesigning Liver Distribution." This proposal, if finalized, would result in outcomes that are completely inconsistent with and contrary to the bipartisan goals of reforming the health care system to provide high-quality, high-value care at a lower cost. This proposal will reduce patient access to liver transplant services and increase the transplantation costs. We urge you take action to direct the OPTN to withdraw this proposal immediately.

The proposal has been circulated without considering larger efforts addressing the need to increase the number of donors and the performance of organ procurement organizations in underperforming regions. If finalized, the proposal would result in diminished access to liver transplant services in the Midwest, Southeast, Northwest, and Hawaii and the Pacific Basin where there have been strong efforts to increase organ donation rates and procurement practices. Before engaging in a redistricting process that only addresses allocation policy, a broader examination of the entire liver donation, procurement and transplantation process is needed. Furthermore, this proposal will exacerbate disparities in health care suffered by minority and rural communities by decreasing organ availability in these communities which have a high burden of liver disease and will weaken their transplant centers.

The projected 2 percent decline in the number of liver transplants significantly outweighs the alleged current geographic disparity.[1] Additionally, the proposal creates significant logistical and financial challenges for the entire transplant community and threatens to undermine patient access in areas with limited access points for transplant services. Spreading livers across a broader geographic region will result in higher costs and require longer air transport times and costs. Transplant centers are unlikely to receive sufficient funding from government and/or private payers to offset additional costs. These challenges could result in closure of some transplant programs, which find the prospect of performing fewer transplants cost prohibitive.

Because the UNOS proposal will increase cost and reduce the number of transplants performed, some transplant programs will (or are likely to) close, harming the people they were created to serve. This is unacceptable to our constituents and to us as their representatives.

Congress created the OPTN to support reasoned, expert-based and consensus driven decisions in organ allocation policy. This proposal contradicts that expectation as evidenced by its unpopularity among members of the transplant community and the general public. Eight of the 11 UNOS regions voted against the proposal at their regional meetings. Public comments collected in fall of 2016 showed staunch opposition from the general public. Seventy-six percent of transplant stakeholders opposed the proposal's use of Median MELD at allocation as the sole metric of geographic disparity at the first public forum held in July 2014.

There are also several procedural shortcomings that demand further examination. The Committee failed to model the effects of the proposal before it was released for public comment, the Committee leadership has remained under the control of representatives from regions that stand to benefit from redistricting, the policy proposal itself advocated for its own merits, and there are concerns regarding conflict-of-interest that have been present throughout the process.

We recognize that there are significant disagreements among stakeholders on how to best distribute donated livers in an equitable manner. But proceeding with a deeply flawed and unpopular proposal that will leave patients in large swaths of the country worse off without additional study of alternative solutions is unwise. We urge you to take action to direct the OPTN to withdraw the "Redesigning Liver Distribution" proposal immediately.