A Quick Fix Exists for Transplant Rationing in the United States, Government Needs to Act
Organ transplant is the simplest form of healthcare rationing in the United States. The hard truth is there are more people who require transplants to survive than there are organs to save them. The result is a waiting list that claims 20 lives [organdonor.gov] each day. It is a supply and demand problem exacerbated by a disturbing bottleneck in the organ recovery system. The bottleneck is thanks to inefficient oversight governing organ recovery. It is a senseless problem that jeopardizes patient safety and frustrates clinicians.
As many as 28,000 [bridgespan.org] donor organs go unrecovered or lost each year. That total encompasses an estimated 1,500 lungs, 1,500 hearts, 7,800 livers and 17,000 kidneys.
Research [bridgespan.org] from the University of Pennsylvania found that those organs never make it to hopeful recipients because government contractors called organ procurement organizations (OPOs) do not face consequences for failing patients. The 58 OPOs maintain “geographical monopolies” over their respectively assigned regions across the country with the primary responsibility [bridgespan.org] “for maintaining relationships with donor hospitals, obtaining next-of-kin authorization for all deceased donors, and managing the logistical transition of organs between donor hospitals and transplant centers.”
They are paid for their work via Centers for Medicare & Medicaid Services (CMS) contracts that run on four-year cycles. Despite the extreme variability [nytimes.com] in the success between contractors, no contract has been pulled in the last 20 years, and that is largely because these organizations evaluate their own performance with self-reported metrics.
The Washington Post’s editorial board noted that using objective evaluations, OPOs in places like New York and California did not operate at their self-reported recovery rates of 71 and 82 percent respectively, but instead had real recovery rates of 27 and 28 percent. On the flip side, other OPOs have been able to enjoy major turn arounds in success when new management was brought in. That, of course, shows the potential for successfully reforming these organizations.
The Trump administration and bipartisan [finance.senate.gov] members of congress have taken notice. Last year, the President signed an executive order [whitehouse.gov] that highlights the need to hold OPOs accountable for failed recoveries, which has the support [appropriations.house.gov] of the House Committee on Appropriations, while the Department of Health and Human Services has since proposed [hhs.gov] using “performance measures” to hold OPO’s accountable.
Accountability is not only essential, it also makes financial sense. Streamlining organ recovery could effectively end the waiting list [washingtonexaminer.com] for lungs in three years, while also infusing far more organs into the system. Further, it could critically save taxpayers up to $12 billion over the next five years via better CMS contracts and more efficient work. That’s partly because each additional successful kidney transplant represents a saving of $250,000 per-patient [thehill.com]. A healthy kidney recipient no longer needs to bill for dialysis treatment. It is a situation where improving health also costs less in the long run.
One of us is a cystic fibrosis patient advocate and rare disease community leader. The other is a clinical psychologist with expertise in behavioral medicine, who spent 5 years serving as the Medical Psychology representative to the lung transplant team at one of the largest lung transplant clinics in the United States. Together we call on the federal government to sign off on the proposed Department of Health and Human Services reforms without hesitation. Doing so will return efficiency to the organ procurement system and cut bloated government spending.
Of the close to 110,000 people waiting for organs, some 1,079 [optn.transplant.hrsa.gov] people are listed for lung transplant. For people living with cystic fibrosis, a rare genetic condition that often leads to severe respiratory disease, double lung transplant is seen as the final treatment option for those who have slipped into end stage illness.
When patients are accepted onto the transplant waiting list, their lives are held in purgatory. Patients may wait for days, months or even years before they finally receive “the call.” That is, if they ever receive the call. They need to be available at a moment’s notice to step into an operating room that does not have a guaranteed outcome or timeline.
Life on the list is not easy. In order to be listed for lung transplant, a patient needs to be in their “transplant window”: a relatively small slice of health in which they are sick enough that the benefits of transplant outweigh the risks, while also being well enough to survive this complex surgery and make a full recovery. Many patients are asked to relocate temporarily, to live near their transplant center during this time, ensuring that they are close enough to the center to rush in at a moment’s notice if they receive a call for possible transplant. These calls can frequently result in a “dry run”: the donor lungs may not be suitable for transplant, and so the patient – after hours of waiting at the hospital, prepared for surgery – is sent home to continue waiting and hoping that they remain healthy enough to survive until the next call.
Unfortunately, without action, this situation is likely to become a lot worse in the near future. While the long-term consequences of COVID-19 infection remain unknown, it is clear that even in the short-term this virus damages organ systems, including lungs. The resulting increase in need for solid organ transplantation in a post-COVID-19 world will mean much longer wait times, with many more people dying while waiting for a life-saving donor organ.
Policymakers in Washington possess the power to do just that. They need to be able to hold OPOs accountable, if not for patients than for spending purposes.
All that is left is to nudge these reforms across the finish line, yet the government is curiously hesitating.
Without immediate action from the federal government, we fear the coronavirus pandemic will intensify the bottleneck as a growing number of people [nytimes.com] are turning to transplant as the only way to survive the novel coronavirus. Our government cannot use the ongoing pandemic as an excuse for not addressing a public health issue that runs tangential to the crisis that has turned out world upside down.
Never before has there be a more urgent need to implement this life-saving reform.
Gunnar Esiason is an MBA/MPH candidate at Dartmouth College. He is living with cystic fibrosis and serves on the board of directors at the Boomer Esiason Foundation, his family's nonprofit organization. Follow him on Twitter @G17Esiason [twitter.com].
Virginia O’Hayer, PhD is Clinical Associate Professor at Thomas Jefferson University Hospital and the Director of the Jefferson Center City Clinic for Behavioral Medicine.