Martinez Majors Sr. of Alexandria, Va., 65, had no idea his kidneys were failing. Then, three years ago, a severe case of edema landed him in the hospital.
“I was bloated. My legs looked like somebody took an air hose and just plugged it into my body,” he says. “The blood tests came back. Whoever the doctor was who was on duty told me, ‘You have chronic kidney disease.’”
Majors, whose kidney failure was caused by hypertension, now spends more than four hours each Monday, Wednesday and Friday tethered to a dialysis machine that filters waste from his blood the way his kidneys no longer can.
The intensive and often exhausting regimen keeps him and a half million other Americans with kidney failure — also known as end stage renal disease — alive.
The Centers for Disease Control and Prevention estimates that 1 in 7 people, or 37 million Americans, have chronic kidney disease, most often caused by diabetes and high blood pressure. And because the condition gradually progresses over months and sometimes years, most people are unaware they’re sick until — like Majors — they’re hospitalized and placed on dialysis.
The treatment, however, is not a cure, rather it’s a stopgap with potentially serious side effects, including infection and strain to the cardiovascular system.
“And the only reversing of that is to get a new kidney — to have a kidney transplant,” Majors says.
More than 90,000 people in the U.S. are waiting for a kidney transplant. But an ongoing kidney shortage means a thousand people a month are removed from the waitlist, either because they die while waiting for a kidney or become too sick for a transplant.
Elaine Perlman wants to change that.
“Enough is enough,” she says. “The kidney shortage is a solvable problem.”
Perlman is executive director of Waitlist Zero, a coalition supporting newly proposed federal legislation that would create a 10-year pilot program called the End Kidney Deaths Act.
The bill, with sponsors from both parties, would offer a refundable tax credit of $50,000, spread evenly over five years, to people who donate one of their kidneys to an anonymous recipient on the national kidney waitlist.
“We are trying to save tens of thousands of lives as well as billions of tax dollars,” says Perlman.
Medicare spends more than $50 billion a year on dialysis. Transplants save lives and money over the long term and improve patient outcomes. That’s especially true for transplants done with living donor kidneys, which can last up to 20 years — about twice as long as those from deceased donors.
People have two kidneys, but most people with only one live healthy lives, according to the National Kidney Foundation.
About two-thirds of all transplants come from someone who has died. The rest, about 6,000 a year, come from living donors, most of whom give to a family member or friend. Only 300 to 400 living donor kidneys come from “altruistic donors,” people who give one of their kidneys to someone they don’t know on the waitlist, says Perlman, who donated her kidney to a stranger in 2020.
“Those who give kidneys to strangers are saving the people who are waiting the longest on the waitlist and are most likely to die from the kidney shortage,” Perlman says. “By incentivizing kidney donors we believe that we will have thousands more people step forward to save those who would otherwise die.”
But critics see it differently.
“I think the act would not increase organ availability,” says Alexander Capron, a professor emeritus of health care, law, policy and ethics at the University of Southern California. “When something goes from being something which people give to being something that is bought, the givers stop giving.”
He also worries that a U.S. program to incentivize living kidney donors could undermine global efforts to end the illicit organ trade.
“I think it would be irresponsible of us to ignore the spillover effect,” he says. “If the United States allowed payments, the countries where people are trying very hard and succeeding very well in stopping (illicit organ) trade — the Philippines, Pakistan, India, Turkey — would have a much harder time getting their governments to take this seriously.”
Luke Semrau disagrees. He’s a bioethicist at Bloomsburg University of Pennsylvania who considers such arguments red herrings intended to derail legitimate debate on the issue.
“Nobody thinks we should adopt a system like kidney sales in India, China or Iran,” he says. “None of those systems have been remotely similar to what advocates of the present legislation are arguing for.”
Semrau has written extensively about moral issues surrounding kidney markets. He believes the proposed measure will significantly increase the number of kidneys available for transplant.
“It’s rare we have such a problem with an obvious solution where everyone benefits,” he says.
Semrau points to surveys showing a majority of Americans support a regulated compensation plan for donors, especially if it results in more lifesaving transplants.
The status quo, Semrau says, is no longer an option.
“We’ve asked people to provide kidneys for free. We’ve done that for decades … and it has not worked,” he says.
Both the American Medical Association and the American Society of Transplant Surgeons support more studies into the use of incentives to increase organ donation rates.
As the debate moves to the floors of Congress, Martinez Majors says he’ll be keeping close watch. While several members of his family have offered to donate to him, they can only do so if they’re a blood and tissue match and if they’re in excellent health and are able to pass rigorous physical and mental health screenings required of live donors.
If not, Majors will join the growing number of Americans now facing an indefinite wait for a new kidney.
Copyright 2024 NPR
