Stacey Sabin never even had to ask.
As soon as her family and friends found out she would need a kidney transplant, many of them told her they would get tested.
“This is where I get emotional,” Sabin said, wiping her eyes. “It’s amazing how many people step up as friends, some people that I don’t even know.”
Transplants of kidneys from live donors have better outcomes, with a higher success rate and longer life after transplantation, than from deceased donors. And despite medical advances that have had made it easier than ever to find a compatible kidney donor, the number of live donor kidney transplants has been declining steadily for the past 12 years. After years of steady growth, the number of live donor transplants peaked at 6,647 in 2004, but has fallen to 5,631 in 2016.
While more deceased donor transplants has kept the total number of kidney transplants growing, the drop-off in live donors means supply is not keeping up with demand, and the number of people on the waitlist for kidneys continues to grow.
In 2004, 42 percent of all transplanted kidneys came from live donors. By 2016, that rate had fallen to just under 30 percent, and transplant experts are unsure why that rate is falling.
“We don’t have an answer,” said Dr. Macey Henderson, a transplant surgeon at Johns Hopkins School of Medicine.
Sabin’s kidneys have been ravaged by polycystic kidney disease, a genetic condition in which clusters of water-filled cysts form in the kidneys and liver, impairing normal function. Her father was diagnosed in his 30s and by age 50 he had to start dialysis, before eventually receiving a kidney transplant from a deceased donor.
Three years ago, her brother received a kidney from her cousin. When doctors removed his kidneys they were the size of volleyballs.
“It’s kind of a sense of relief having my brother go through it, because it went so well for him,” she said. “I’m hoping to goes as well for me.”
Sabin, 49, was diagnosed about 15 years ago, and for many years, put off any thought that she would need a transplant. She had been a fitness instructor, a type A personality who didn’t have time for a medical crisis.
But as her kidney function declined — down to 13 percent of normal function — she no longer had the luxury of denial. If she didn’t get a transplant she would soon end up on dialysis.
She and her husband, Greg, told their circle of family and friends she would need a transplant and many volunteered to be tested. Having seen the process with her brother, she didn’t want to put others through the rigorous screening needed to be a donor unless it was necessary.
“We didn’t really discuss it when she started going through it,” her husband said. “I think I just sort of assumed that I would be the first one tested.”
Sabin didn’t expect he would be able to donate, because they had different blood types. But his O blood was compatible with her A blood, and more importantly, Sabin didn’t have any antibodies that would have increased the risk of rejection.
After three months of testing and evaluation, the Sabins got the call in early January that he could indeed be a donor. The transplant date was set for Jan. 24 at Oregon Health & Science University in Portland. Sabin would have her husband’s kidney transplanted by the same surgeon who performed the transplants for her brother and her father.
The drop-off in live donor transplants has been hard to explain particularly after the rapid rise in donations through the ’80s and ’90s. The gains occurred as doctors developed better ways of testing compatibility and perfected new laparoscopic surgical techniques that allowed kidneys to be removed through much smaller incisions with less recovery time. When research showed that organs from unrelated donors, including spouses, worked just as well as from related donors, doctors were willing to consider even more potential donors.
But doctors are unsure what changed after 2004. In a 2013 article in the medical journal Transplantation, researchers led by Dr. James Rodrique, from the Center for Transplant Outcomes and Quality Improvement at Beth Israel Deaconess Medical Center in Boston, outlined a number of possible explanations for why donation rates had dropped.
• Changes in deceased donor allocation: In 2005, the United Network for Organ Sharing, which oversees organ allocation, implemented a new policy that prioritizes kidneys from deceased donors younger than 35 to recipients under the age of 18. Many in the transplant community have argued this change led to fewer live donors, because children don’t wait as long for kidneys. Longer wait times, particularly for kids, might prompt family members to donate instead. That, however, wouldn’t necessarily explain why live donations for adult candidates have dropped as well.
• Increased emphasis on transplant center performance: In 2007, the Centers for Medicare & Medicaid Services changed the regulations for transplant centers, evaluating them based on the one-year survival of transplants. Transplant surgeons have argued that structure precludes them from taking anything less than a high-quality organ, for fear their survival rates could drop and they could lose their certification as a transplant center.
Studies showed that from 2007 to 2010, transplant centers that were flagged by Medicare based on their survival rates, cut the number of transplants by average of 22 per year, while the rest of the programs averaged an increase of eight per year.
• Changes in donor selection criteria: Medical advances have allowed doctors to transplant organs from patients with controlled high blood pressure, mild obesity and stable psychiatric disorders, which helped lead to the increase prior to 2004. At the same time, doctors have learned to avoid patients with other risk factors, such as young blacks with metabolic syndrome, who are at higher risk for kidney disease later in life. Better testing of antibodies might rule out other candidates.
• Changes in demographics: Patients on the waiting list are older than in the past. Adults over the age of 65 made up 8 percent of the kidney waiting list in 1998, and 17 percent in 2011. Older adults may have a smaller circle of potential living donors, which could impact overall transplant rates. Rates of obesity, pre-diabetes, diabetes and hypertension, which can prevent individuals from donating, are at record levels.
• Financial pressures: The documented decline in donation rates has occurred around a period of economic upheaval, culminating in the great recession of 2008. Kidney donors often miss four to six weeks of work and incur average costs of $5,000 to donate. About 20 percent of living kidney donors report financial hardship after donation. Some potential donors may not have felt secure enough in their jobs to take that much time off. Several states have developed mechanisms to reimburse these costs, but such programs haven’t always led to an increase in donation.
There is evidence that the economic downturn may be affecting donation rates, particularly among lower income groups, which have traditionally had lower rates of live kidney donation.
A 2015 study published in the Journal of the American Society of Nephrology compared donation rates by ZIP code, finding that as average income went up, so did donation rates. They also found that the rate of decline in donation rates after 2004 was faster in lower income groups.
The researchers found that between 2005 and 2010, donation rates in the 60 percent of ZIP codes with the lowest average income declined, while the top 40 percent saw rates remain flat or increase, albeit at a slower rates than before 2004.
The researchers found that donations from related donors — including siblings, parents and adult children — declined the most. Spousal donations were relatively stable, but changes over time were more closely linked to income. A spousal donation generally meant two individuals in the same household losing income.
Donations from unrelated donors decreased the least, and in 2010, for the first time, unrelated nonspouse donors exceeded the annual number of sibling donors.
That could reflect the smaller sizes of American families. According to the Pew Research Center, in 1975, 41 percent of mothers had four or more children. By the 1990s, that dropped to only 13 percent, and the predominant number of children shifted to just two.
Henderson says the transplant community needs to do more to protect living donors against financial distress.
“What happens to that person after they donate an organ? Do we take care of them? Do we pay for their follow-up? What if they don’t have insurance?” Henderson said. “There are 16 percent of living donors in the United States that don’t have health care insurance.”
The National Living Donor Assistance Center was established in 2007 to support people who want to donate a kidney, but cannot afford the cost of travel or day-to-day expenses during the process. The program has supported more than 2,000 living kidney donors so far. Approved applicants receive a type of credit card to pay for approved transportation, food and lodging expenses up to $6,000.
“But there’s a prohibition for paying for a donor’s health care afterward,” Henderson said. “If we closed that gap, it might increase our donations on the front end.”
Proposals to expand financial support for donors, however, must tread carefully to avoid violating federal prohibitions against providing compensation or financial incentives to donate. Generally, reimbursing costs has been considered acceptable.
The Organ Donor Clarification Act, introduced in Congress last year by Rep. Matt Cartwright, D-Pa., clarifies that programs that provide noncash incentives and reimbursements for expenses to organ donors are not preempted by federal criminal law.
“Confusion about what constitutes valuable consideration has hampered donation by scaring people away from reimbursing living organ donors for things like medical expenses and lost wages,” Cartwright said last year. “Both are legal under (National Organ Transplant Act), but the law’s lack of clarity and its criminal penalties have created uncertainty and prevented reimbursements in many cases.”
The bill would also allow government-run pilot programs to test noncash incentives to promote organ donation. The pilots would have to be approved by an ethical board’s scrutiny and the Department of Health and Human Services, and wouldn’t change current allocation rules.
The National Living Donor Assistance Center announced in December that it will conduct a randomized controlled trial to assess the impact of financial interventions. Half of the potential donors at five transplant centers will be offered wage reimbursement, to determine if that impacts donation rates.
The Sabins have rented a house in Portland for a month, so that doctors can monitor her kidney for any sign of rejection and to adjust her medications as needed. They feel fortunate to have found a compatible kidney so quickly but are hoping to spur greater awareness about organ donation.
“At least put it on your driver’s license,” he said. “If you happen to pass and have an eligible organ, or for a living donor to think of someone you know or care about especially, to know that this little effect on you is going to have this big effect on them.”
— Reporter: 541-633-2162, firstname.lastname@example.org