Unless you’re a first responder, health care provider or among a few other categories of professionals, odds are that the most heroic thing most of us may ever accomplish might happen after we die—by donating a life-saving organ(s). Of course, there is another category of hero among us—living donors—who decide that the potential health risks are acceptable trade-offs to save another person’s life. Over 6,000 living donor surgeries are performed in the United States each year, and living donors are responsible for four out of every 10 kidney transplants performed annually. But like almost everything else, living organ donation was radically altered by the ongoing COVID-19 pandemic.
Early in the pandemic, deceased donor transplants dropped by approximately half in the United States, and the number of living donor kidney and liver transplants between March 13, 2020 and June 1, 2020 was nearly 70% lower than the number performed during the same period in 2019.
There are more than 107,000 Americans on the U.S. waiting list for a life-saving organ transplant, and 17 of them die each day while waiting. Even under normal circumstances, the living organ donation procedure, like any surgery, is not without risk and organ donation is often not a financially neutral decision. Unlike other surgeries, living organ donors do not receive medical benefits from the organ donation procedure. Yet, thousands of people every year make the choice to donate an organ, to a family member, friend or complete stranger.
However, transplant programs and potential donors have faced hard questions about risk tolerance due to the COVID-19 pandemic. For example, how do the added risks of COVID-19 infection influence decisions by potential donors? How can medical teams and donors communicate about safety questions, health burdens and other concerns to help donors and doctors to make the best decisions during a rapidly changing pandemic?
These are some of the questions that researchers from Drexel University’s College of Medicine and Dornsife School of Public Health posed to prior and prospective organ donors across the United States. The results, recently published in the journal Kidney International Reports, provide guideposts for transplant providers aspiring to put donor concerns and priorities at the forefront of donation and other healthcare decisions.
“Organ donation is a truly unique healthcare scenario where a very healthy person chooses to undergo a major surgery to donate an organ to someone else in need. Under pandemic conditions, it is important to remember that this is a fundamentally different scenario than a patient who elects to undergo surgery for personal benefits, and there has been substantial debate on how to balance donor autonomy with the need to minimize transmission risks,” said senior author Meera Harhay, MD, an associate professor in Drexel’s College of Medicine and Dornsife School of Public Health. “My colleagues and I have wrestled with these questions throughout the pandemic, always acknowledging that there are so many people who desperately need these transplants.”
In the Drexel study, the researchers surveyed 148 active members of an organ donor support group. The group reported that doctors were their most important information source about the COVID-19 pandemic, followed by transplant programs (social media was the least trusted source!), and this view was consistently held regardless of COVID-19 prevalence in their area of residence, their relationship to the recipient and other factors.
Despite primarily turning to medical professionals to give truthful information about the pandemic, donors also reported seeking out information from other sources about organ donation. In an era of rampant misinformation on health topics, the study authors note that transplant programs may be able to help donors be better informed if they directed them to trusted information sources about the pandemic.
While prospective and prior donors expressed concern about perceived increased medical risks, they also highlighted the economic impacts of COVID-19, including the possibility of losing health insurance. The study authors said that these concerns should be addressed by enhancing programs to lower the financial burdens of living organ donation.
About a third of respondents said that health risks associated with COVID-19 and a difficulty making decisions because of information and misinformation about the pandemic has changed the way they view the risks of donating. Several kidney donors expressed concern about how COVID-19 infection might impact the function of their remaining kidney. However, the authors report that “many donors in the survey would be willing to accept the additional burdens of donation during the pandemic if delaying the donation would endanger the transplant candidate’s life.”
The surveyed group was predominantly non-Hispanic white and female – the most prevalent demographic characteristics of U.S. living donors – but study authors note that further research is needed to assess the needs of older donors and members of racial and ethnic groups that were not adequately captured in this study.
The Drexel study illuminates the importance of minimizing or even eliminating the factors that overly burden living organ donors. The United States Congress is considering S. 377, the “Living Donor Protection Act of 2021,” which aims to protect living organ donors from discrimination. The act would prohibit a living donor from being denied insurance coverage or from incurring excess premiums in their insurance coverage as a result of their organ donation.
Ahead of “Donate Life Month” in April, the American Society of Transplantation, of which Harhay is a member, as well as the American Association of Kidney Patients and American Society of Transplant Surgeons, recently published a joint statement on the bill and the importance of expanding the availability of living organ donation.
“No person should be discriminated against for their noble decision to become a living organ donor – meaning no donor should face disparate treatment or hidden penalties for their selfless act through a threat to their job security or career, or their life, health and disability insurance or related future insurability,” the statement reads.
What can I do to help?
If you decide to become a living organ donor, you will need an assessment at a transplant center. An evaluation at a transplant center will determine if you are healthy enough to donate. The most commonly donated organ is a kidney, though living donor liver transplants are also performed across the United States.
It is also important to speak with your family or loved ones if you wish to be an organ donor after you die. Don’t believe the myths about organ donation and check to make sure you’re an organ donor. If not, sign up here.
Media interested in talking to Harhay should contact Greg Richter, news manager, at firstname.lastname@example.org and/or 215.895.2614.