Columns

This editoral ran in Modern Healthcare on September 19, 2022.

Last winter, a devastating wildfire broke out across western Kansas destroying stockpiles of grain and hay, leaving ranchers without food for their livestock. Just days later, semi-trucks stacked high with hay bales could be seen on the interstate coming from every direction as other farmers and ranchers donated supplies to help their neighbors.

When a natural disaster or a tragic accident strikes, people in the Midwest look out for each other and give to others even when they have little for themselves.

That spirit of generosity is why Kansas, along with other states in the Midwest, has a high rate of organ donation. However, the organs donated by Midwesterners are not all going to their neighbors and friends. Due to biased rules in the national liver transplant system, many of the organs donated in the Midwest are sent hundreds of miles away to coastal urban areas where people donate organs at a much lower rate.

While organ shortages can be a life-threatening crisis, Kansas has taken steps to educate students on the importance of organ donation. And it’s working. Seventy-five percent of Kansans are registered organ donors. Taking additional steps nationally to educate potential donors could help remedy the core problem, but Kansans should not be punished for organ shortages across the country.

Essentially, the liver transplant system is rigged against patients in certain states simply because of their geographical location. Sen. Roy Blunt (R-Missouri) and I have repeatedly challenged shifts in the nation’s liver allocation policy that shortchange Midwest and Southern states. The policy was developed by the United Network for Organ Sharing, a private organization contracted with the Department of Health and Human Services to oversee the national transplantation system. UNOS changed the liver allocation policy in December 2018 by adjusting the geographic parameters guiding which patients receive donated organs.

Our concerns over bias in the policy are not mere speculation. A November 2021 U.S. Court of Appeals ruling required the public release of internal communications between UNOS, a separate organ procurement organization based in New England, and others as they drafted the new liver allocation policy. Hundreds of pages of emails released revealed clear bias against rural regions of the country.

The liver allocation policy, which HHS allows to continue despite overwhelming evidence that it is unjust, is only one example in a long list of shortcomings in America’s national transplantation system.

During a Senate Finance Committee hearing in August, Chair Ron Wyden (D-Oregon), along with members of both political parties, pressed UNOS CEO Brian Shepard on everything from damaged or discarded donated organs, poor information technology, high patient deaths, and years-long waiting lists. Recent data show more than 105,000 Americans remain on the transplant candidate waiting list and about 6,000 Americans die each year waiting for organ transplants, according to the Health Resources and Services Administration.

UNOS’ contract with HHS is up for renewal in September 2023, and it should not be renewed. For more than 30 years, UNOS has been the sole contractor with HHS to run the national transplant system despite its questionable performance. HHS should adhere to a recent Senate Finance Committee report recommending that the department remove barriers for other not-for-profits to compete for the contract.

The contract should be divided among several organizations, starting with separating the system’s information technology infrastructure component from the rest of the contract. A study by the National Academies of Sciences, Engineering, and Medicine recommended splitting the IT function into a separate contract next year.

Americans requiring an organ transplant deserve far better than the current approach. It is past time for HHS and Congress to prioritize reforming the system, beginning with a competitive contract process.