Sen. Todd C. Young (R-Ind.) said Thursday he would introduce legislation next year calling for greater oversight of the U.S. transplant network, contending 10,000 people die annually in a system that is allowed to hide its flaws from the public and Congress.
His announcement followed stories published Thursday in The Washington Post that said the transplant industry could more than double the number of organs available for transplant each year if it expanded efforts to collect and use organs from older and nontraditional donors, such as people with hepatitis C.
The Post’s analysis cited transplant surgeons who reject such “marginal” organs in the hope of obtaining better ones; a network of nonprofits that sometimes does a poor job of recovering organs; government disincentives to expanding the system and patients who sometimes turn down less-than-perfect organs.
A yield of perhaps 75,000 kidneys, livers, lungs, hearts and other organs each year is possible, according to a Post analysis of death records — more than double the number transplanted in 2017. That would go a long way toward wiping out the U.S. waiting list for organs, which contains nearly 115,000 people. Last year, 31,608 organs from deceased donors were transplanted, but 33 people die each day waiting for one.
On Thursday, a coalition of groups that have studied the transplant system released its own analysis of data from 2012 to 2014. It said the system could collect 28,000 additional organs each year if reforms were undertaken, an effort that would save taxpayers $13 billion a year. The coalition includes a New York-based activist group, Organize, that has been critical of organ procurement organizations, or OPOs, and the way the system works.
Earlier this year, Young asked the federal government and the United Network for Organ Sharing — an umbrella nonprofit that oversees the system — for information on the 58 nonprofit OPOs, but was rebuffed. As a nonprofit, UNOS is not required to share certain information with Congress or the public, and medical privacy laws shield some material as well.
On Thursday, Young wrote in a news release those rules must change.
“After more than 30 years of our nation’s organ donation system operating in darkness, it’s time to get a look behind the curtain,” he said.
UNOS’s chief executive officer, Brian Shepard, responded that “organ donation and transplant is one of the most transparent fields of medicine anywhere. Hospital and OPO performance is regularly measured and publicly reported. Transplant and donation data is available for researchers and the media.
“We look forward to evaluating Senator Young’s proposal,” he added. “We would support bringing more visibility to those available public data. We would oppose any effort that threatens the privacy of individual donors or transplant patients.”
In a statement, the chief executive of the Association of Organ Procurement Organizations pointed out that OPOs have increased the number of donors by more than 26 percent.
“The bill appears to be the result of a fundamental misunderstanding of the complex nature of organ recovery in the U.S. and proposes new regulations that could lead to significantly lower donation rates, additional waiting list deaths and increased costs,” Elling Eidbo said.
Young’s bill would require that federal regulators determine annually whether an OPO has performed well enough to have its federal contract recertified, as they do for nursing homes. Currently, OPOs come up for recertification every four years.
The bill also would require that Congress receive all UNOS surveys, audits, investigations and corrective action plans for OPOs. The bill would allow UNOS to redact information to protect patient confidentiality and comply with federal privacy laws. The Government Accountability Office also would investigate OPO finances.
Any change will come too late for Carl Harper, a retired uranium plant supervisor from Paducah, Ky., who died in May at 64. Harper, a recovered alcoholic, had been waiting for three years for a new liver.
“In the real world, any business being subpar for so long wouldn’t be allowed,” said Harper’s son, Steven. “I wish there was a high standard they would be held against. With this monopoly situation they have, there is no accountability.”