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The United States’ celebrity-fueled social media culture means many celebrities have become increasingly open about their health journeys, sharing personal stories about everything from wellness tips to lifesaving organ donations. Stevie Wonder, who announced to a sea of fans that he would be receiving a kidney transplant from a living donor at the end of 2019, recently updated his fans on his post-transplant progress. While celebrity reputation has no effect on a person’s status on the transplant waiting list, an announcement like Steve Wonder’s reaches his millions of fans with a strong message about the importance of living organ donation.
The question is, with about 109,000 people on the organ transplant waiting list in the U.S. (of which nearly 94,000 are waiting for a kidney) how can we use celebrity voices to elevate the conversation about organ transplants and increase the number people — both living and deceased — who choose to make a lifesaving gift?
20 people die every day from a lack of available organs for transplant. As president and chief executive officer of the American Kidney Fund, and a Black woman who, by virtue of my race, is three times more likely to develop kidney failure, I am well aware of how desperately we need a greater supply of lifesaving organs. In 2019, one in four people on the kidney transplant waiting list received their lifesaving gift — a record breaking year. Of the 24,000 kidney transplants performed, almost 7,400 were thanks to living organ donors — another record. While we are trending in the right direction, further increasing the supply of kidneys and other organs from living donors would allow people to get off the transplant waiting list and back to living healthier lives sooner.
The passage of various common-sense state laws, ensuring living donors have job-protected leave and are not discriminated against by insurance companies, is a top legislative priority of AKF — it’s something we can do to remove barriers to donation and increase the number of available organs. In 2020, the governors of Missouri and Kentucky signed living donor protections into law, and we are currently working with lawmakers in New Jersey and Pennsylvania on similar legislation. But, where you live should not determine your ability to get a transplant. Our country needs to pass the federal Living Donor Protection Act of 2019 — introduced in the House by Reps. Jerrold Nadler, D-N.Y., and Jamie Herrera Beutler, R-Wash., and in the Senate by Sens. Kirsten Gillibrand, D-N.Y., and Tom Cotton, R-Ark. — to increase the supply of organs available for transplantation and support all Americans.
While legislative advancements targeting organ donation will help to save the lives of Americans already living with serious chronic illnesses like kidney disease, we must also do more to prevent these illnesses in the first place. There are currently more than half a million people in the United States who depend on dialysis to stay alive, and more than 10,000 Americans are newly diagnosed with kidney failure each month. Since 2000, there has been a 91% increase in the number of Americans with kidney failure.
Kidney disease, which affects 37 million Americans plus the many millions more who are at risk, is a silent killer with no symptoms until the late stages. Nine out of 10 people with the early stages of kidney disease are unaware they have it, and half of those with severely reduced kidney function (but not yet on dialysis) do not know they have it.
Every day, I learn of another kidney patient crashing into dialysis because they did not know they had kidney disease. Bill Lawson, a well-known high school basketball coach and athletic director in Virginia, noticed swelling in his feet, so he went to the ER and was told he needed to begin dialysis immediately to stay alive. Despite having diabetes and high blood pressure — the two leading causes of kidney disease — he told us that his medical providers had not educated him about the importance of managing those conditions to prevent kidney disease.
We can prevent this from happening to more Americans like Bill, but in order to do so, we must advocate for people at high risk of kidney disease to get tested. Others who have an increased risk of kidney disease include: anyone with a family history of the disease, people who are obese, people who are members of racial and ethnic minority groups and those over age 60.
Testing, through simple blood and urine tests, is critical because if detected early, kidney disease progression can often be slowed or stopped with lifestyle and diet changes, as well as medication. By catching kidney disease early, people can preserve their health and get back much needed time to make treatment decisions that are best for them.
As an advocate for people with kidney disease, I appreciate Stevie Wonder sharing his journey to reach people who may not know about the risks of chronic kidney disease or the benefits of living organ donation. While Mr. Wonder’s story highlights a success in organ donation, it also raises a note of caution. Without kidney disease education, the 37 million Americans with kidney disease may find themselves crashing into dialysis like Coach Lawson, rather than receiving a preemptive kidney transplant. If Stevie Wonder’s experience compels him to action, I hope he uses his celebrity status to help reach and educate a larger audience on how to address the kidney disease crisis.
Imagine what could happen if more celebrities called on their fans to visit their primary care doctors and get tested for kidney disease.
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LaVarne A. Burton is the president and chief executive officer of the American Kidney Fund and former executive secretary to the U.S. Department of Health and Human Services.
