The coronavirus pandemic has made all of us acutely aware of the fragility of health. People in fine shape one day have died in a matter of weeks or even days, and the burden of this disease falls especially hard on racial and ethnic minorities. Even patients who survive face long-term consequences from their illness. COVID-19 has caused kidney failure in some patients and lung failure in others, and some of these patients may require a transplant to recover fully from the virus and maintain their quality of life.
While we come from different professional backgrounds and political perspectives, we both know from first-hand experience the importance of encouraging organ donation and maximizing the organs available to patients. One of us directs one of the largest transplant centers in the country, which performs about 50 transplants in the average month and has seen too many patients die waiting for an organ. The other, a mother of a young daughter with cystic fibrosis, understands the anguish that patients with chronic diseases and their families face as their organs fail and they pray for solutions that will save their lives.
Regulations proposed last year by the Department of Health and Human Services would provide just that solution to tens of thousands of families. By transforming the current, outdated system of organ donation, we could move quickly toward realizing the estimated 28,000 additional transplants that studies have shown could be available each year. HHS should act without delay to finalize these lifesaving regulations as quickly as possible.
These regulations would accelerate organ donation in several key ways. First, kidney donors could receive reimbursement for lost wages and child care costs above and beyond existing reimbursements for travel and medical expenses. These changes would remove two major financial obstacles that many kidney donors face, encouraging more people to become donors.
Second, the regulations would reform the nation’s system of 58 regionally based organ procurement organizations, which are responsible for organ donation in the geographic regions they serve. Under the new regulations, organ procurement organizations would no longer get judged solely on self-reported criteria, which is particularly important given that objective data reveal a 400% difference in performance at organ procurement organizations across the country.
As awful as it sounds, many potential donors never become part of the donation system. This denies donors and donor families the opportunity to save the lives of others and denies waitlisted patients the opportunity at a second chance at life.
One of the major problems is that without objective data with which to evaluate organ procurement organizations, the government has not pulled a contract from an underperforming contractor in decades — even as 33 people die every day in need of organ transplants.
Thankfully, the new reform measures would emphasize much-needed accountability by identifying underperforming organ procurement organizations and actually allowing the government to replace them. This change sends a clear message from the federal government to its contractors: Increase the number of available organs you transplant into patients, or we will find someone else that will.
Perhaps unsurprisingly, defenders of the status quo in the organ procurement organization community are trying to water down the reforms, arguing that the proposed standards to maintain their contracts should be lower and even that organ procurement organizations should get credit for organs they procure but then ultimately throw out rather than transplant. What’s more, these government contractors object to finalizing the regulations now. Citing the challenges associated with the pandemic, they have proposed delaying the regulations’ effective date until at least 2026.
But more than 110,000 people are languishing on organ waiting lists — and this year, the coronavirus may add further to that total as COVID-19 ravages lungs, kidneys, and other organs. Delaying these regulations for another five-plus years would represent thousands of organs unused — and thousands of lives lost unnecessarily.
We believe that finalizing these regulations forms the cornerstone of a strategy that could essentially end the waiting lists for livers, lungs, and hearts within three years and dramatically decrease waiting times for kidney transplants. It could also save approximately $12 billion in government spending over the next five years. Those taxpayer savings represent 12 billion reasons not to delay implementing these rules until 2026.
Thousands of lives could be saved every year simply by honoring the wishes of potential donor families and maximizing the existing donor supply. At a time when our nation faces so much suffering, tragedy, and loss, these commonsense, nonpartisan changes would bring much-needed joy to families desperate for an organ donor. HHS should finalize the proposed organ procurement rules, and ensure they take effect without delay.
Seth Karp, MD, is the surgeon in chief at Vanderbilt University Medical Center and director of the Vanderbilt Transplant Center. Mary Vought is a recent Trump appointee to the National Council on Disability and the mother of a child with cystic fibrosis.
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