Kidneys are currently the most needed organ in the country, and an ongoing crisis has left tens of thousands in limbo.
As of September, nearly 90,000 people in the US are waiting for kidneys, but only around 27,000 transplants were performed in 2024, according to data from the Organ Procurement and Transplantation Network (OPTN). That makes for a grim reality: One out of every 20 people on the waiting list die every year, the United Network for Organ Sharing (UNOS) estimates.
Kidney failure, most often caused by chronic conditions like diabetes or high blood pressure, can only be treated with dialysis or a transplant, according to the National Kidney Foundation. A 2020 review of 11 studies found transplants are generally cheaper and more effective than dialysis, while a 2010 review found transplants also improve quality of life.
But a cocktail of issues often delay the surgical procedures. High out-of-pocket costs and lengthy testing requirements, for example, deter donors, experts say.
That leaves scientists, policymakers, and other experts scrambling to find a solution.
A $50,000 payout
One recent proposal to address this need is the End Kidney Deaths Act that a bipartisan group of lawmakers introduced in August. If passed, it would take effect December 31.
The proposed legislation would give an annual $10,000 in refundable tax credits for five years to living donors who give “non-directed” kidney donations, which is when a donor is anonymously matched to a recipient by medical compatibility. Less than 5% of the 6,000 living donors do this each year, according to the National Kidney Registry.
The idea is not without its critics.
LaVarne Burton, president and CEO of the nonprofit American Kidney Fund (AKF), told Healthcare Brew in an email that while AKF supports covering donation expenses, she isn’t sold on this particular approach.
“The current legislation does not have any protections in place to ensure that the most vulnerable do not donate organs simply because of the cash payment without regard to their own current or future healthcare needs,” Burton said.
Reimbursement revolution
Enter the Living Organ Volunteer Engagement (LOVE) Act, which would reimburse living donors—as well as give them up to $2,500 weekly in lost wages for eight weeks—and create a full US program complete with patient “navigators” and an education campaign.
Though the proposal hasn’t hit Congress yet, Martha Gershun, a living donor who serves on the expert advisory panel for the Kidney Transplant Collaborative, a nonprofit advocacy group, told Healthcare Brew she believes the law would increase donations.
Gershun experienced firsthand how difficult and expensive the process can be when she donated in 2018. Over approximately nine months, she had to meet with several doctors multiple times, undergo dozens of tests to ensure it was safe for her to donate, pass a psychological evaluation, and drive six hours to her recipient’s transplant center.
Post-surgery, her husband took 16 days off work to care for her. In total, she paid about $5,000 out of pocket in expenses, though her recipient’s family later fully reimbursed her.
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“The logistics and the expense [of donation] were unanticipated and ridiculous,” she said.
A numbers game?
Whereas the LOVE Act focuses on increasing incentives to donate, another federal effort aims to ensure the donated organs aren’t wasted.
The US organ transplant system is currently undergoing an overhaul following a congressional probe that exposed failures like long wait times and organs lost in transit.
The Centers for Medicare and Medicaid Services (CMS) and the Health Resources and Services Administration want to take that overhaul a step further with a new proposal, called the Increasing Organ Transplant Access (IOTA) model, that aims to cut down kidney waste. Around 20% of available kidneys are discarded, often because a recipient isn’t found in time or because transplant centers are too selective, researchers of a 2018 analysis suggested.
The IOTA model would tie CMS payments to transplant hospitals’ performance based on factors like a hospital’s number of adult kidney transplants and organ offer acceptance ratio.
But hospitals are pushing back. The American Hospital Association, a leading industry group, wrote to the CMS in July, arguing that it shares the agency’s goals but that the IOTA model is the wrong way to achieve them.
“We are particularly concerned that the model’s heavy focus on transplant volume may incentivize unintended consequences, such as subpar matches,” Ashley Thompson, AHA’s SVP of public policy analysis and development, said in the statement.
Startups step in
Meanwhile, some startups are done relying on altruism.
On September 4, Massachusetts-based startup eGenesis announced that it had received $191 million Series D funding toward a human clinical trial of genetically engineered pig kidneys.
The biotech company was responsible for the pig kidney transplanted into a man with kidney failure at Massachusetts General Hospital (MGH) in March.
Though the transplant recipient died 51 days after the procedure, an MGH doctor told Healthcare Brew in May that there seemed to be “no indication that the kidney transplant contributed to his passing.”
There are also startups dedicated to ensuring that people never need a donation to begin with.
In 2022, Healthy.io got FDA clearance for an app called Minuteful Kidney, which works with an at-home urinalysis test kit that uses colorimetric analysis to evaluate a patient’s albumin-to-creatinine ratio, a common measure of kidney function. The app uses the phone’s camera to view the color change and infer kidney health.
Alexander Chang, a nephrologist and associate professor of clinical research at Geisinger College of Health Sciences in Pennsylvania, presented research results in early September showing that testing adherence more than doubled when patients used the app, as opposed to needing to go to the doctor’s office.
Making diagnosis easier can help patients get earlier access to treatment and prevent them from entering kidney failure and ending up on the kidney transplant waitlist, Chang told Healthcare Brew.
“We’re often, as a healthcare system, really looking at patients way too late,” Chang said. “If we can detect things early, then there are actually multiple different treatments that can prevent kidney failure.”