It’s time to provide needed reform to the organ donation system

Every day, Americans are dying because of an inefficient organ donation system. That reality is as tragic as it is fixable, and cemented a seemingly unlikely friendship between us as two former White House staffers who served two very different presidents.

It might seem like there are not many points of policy agreement between the Trump and Obama White House, but organ donation reform is one.

Organ donation and transplantation has long been a bipartisan issue. The current system was championed by then-Sen. Orin Hatch (R-Utah) and Rep. Al Gore (D-Tenn.) in 1984. Immunosuppression, a therapy that helps organ recipients’ bodies accept donated organs, had recently taken off, and with that, organ transplantation became possible for many more people. Hatch and Gore hoped to encourage organ donation by ensuring that the organizations on the frontlines of organ donation – called organ procurement organizations (OPOs) – had the resources to recover organs from potential donors.

The law gave OPOs monopolies over their designated service areas and made their expenses 100 percent financial pass through – largely to the taxpayer. This broad latitude of structure was meant to match the generosity of would-be donors across the country. The law also included a ban on compensating organ donors to protect donors from exploitation.

Fast forward 35 years and both the deceased and living donation systems have been hobbled by good intentions and a shocking lack of oversight.

For the deceased donation system, research shows that tens of thousands of organ donations go unrecovered every year. Even so, not a single OPO has lost its lucrative government contract in decades.

There is an old “Seinfeld” episode where George Costanza tries to get fired from his job at the Yankees – and nothing he does, no matter how egregious, lands him with a pink slip. If it weren’t a life-and-death issue, the analogy would be apt for OPOs.

For example, the Los Angeles OPO had to return more than half a million taxpayer dollars in 2010 after billing Medicare for Rose Bowl tickets and five-star staff retreats. The OPO kept its contract. In 2012, a judge sentenced the Alabama OPO’s leadership to federal prison for a multimillion dollar kickback scheme with a local funeral home. The OPO kept its contract. And in 2018, after five years of continued poor performance since its last failing report card – a period during which 6,000 New Yorkers died on the organ waiting list – the New York City OPO again kept its contract.

Thankfully, things might be about to change. On Dec. 17, Secretary of Health and Human Services (HHS) Alex Azar said: “We’re going to stop looking the other way while lives are lost and hold OPOs accountable.”

Under new proposed rules, an astounding 37 of the nation’s 58 OPOs are out of compliance on at least one of two basic metrics. This is the government confirming that the vast majority of Americans are in the hands of failing OPOs. In addition to the OPOs from Los Angeles, Alabama, and New York, the list includes Iowa, Kentucky, Oregon, South Carolina, Virginia, and Colorado, to name just a few.

What does that mean for patients? Just bringing failing OPOs up to minimum standards would mean almost 5,000 more organ transplants per year. And because most of those organs would be kidneys and save patients from grueling dialysis (often covered by Medicare), it would also mean saving taxpayers billions of dollars.

Underscoring the broad support for reform, President Obama’s senior health care official who ran the Centers for Medicare and Medicaid Services (CMS) and the Affordable Care Act from 2015 to 2017 co-authored a call for reform with the president of the conservative advocacy group FreedomWorks. And Sens. Chuck Grassley (R-Iowa) and Todd Young (R-Ind.) weighed in this week, initiating Congressional oversight into OPOs.

When it comes to the living donation system, reform is also on the horizon. For too long, laws intended to protect organ donors by banning compensation for organs have also prevented the government from supporting living organ donors. We should not leave those who gave of themselves to save others to bear their financial burden alone. New rules from the administration support covering expenses incurred by generous living donors, including lost wages, child care, and elder care. These are most welcome.

But the fact that these failures were allowed to continue in plain sight for decades in the form of unrecovered deceased donations and unsupported living donors suggests more must be done to help the more than 113,000 Americans waiting for organs.

Organ donation policy has been split between different agencies within the federal government and even an external federal contractor called the Organ Procurement Transplantation Network. This splintering of responsibilities has led to an unaccountable system with patients left behind. As for one federal contractor responsible for oversight of other contractors, Grassley and Young called out the problem, writing: “we can no longer stand by idly while the fox guards the hen house.”

The answer is to create a centralized Office of Organ Policy within HHS able to identify opportunities for reform, manage the system, and ensure that lives are saved and taxpayer dollars meant to support the system are not wasted.

Consider one example: the federal government covers the cost of immunosuppression following kidney transplants for three years. After that, patients are left to pick up the tab, which if they cannot afford, can lead to organ rejection and a return to taxpayer-funded dialysis. So even though covering continued immunosuppression is in the interests of patients and taxpayers alike – and would save tens of millions of dollars per year – it has not happened yet. That is not only bad policy; it is unconscionable.

In a time when so many debates in health care seem intractable, organ donation reform is one that can bring the nation together. With 33 Americans dying every day for lack of an available organ, we have every reason to fix the system.

Jennifer Erickson served at the White House under President Obama from 2015 – 2017. Abe Sutton served at the White House under President Trump from 2017 – 2019. Both worked on organ donation policy.