New fund eases expenses for organ donors

Last Updated: 2015-01-29

By Randi Belisomo

(Reuters Health) - When Sigrid Fry-Revere decided to donate a kidney to a friend in 2010, she thought she knew what to expect.

She was medically compatible and insured. She planned surgery during the Christmas holidays, so her husband and college-aged sons could take time off to help her recover at their 10-acre Virginia farm.

What she didn't consider was the factor that ultimately disqualified her: personal expenses.

The transplant team required an eight-week recovery plan. Her caregivers, however, could only be home for a month, so she would need to hire a farmhand. With this unanticipated and unaffordable expense, she was quickly eliminated.

"I was dumbfounded," Fry-Revere said. "They would rather let him die than give me time to figure out how to take care of myself."

According to the American Journal of Nephrology, living donors incur out-of-pocket expenses averaging $5,000, and sometimes up to four times that amount.

Fry-Revere's friend did die. Last fall, she established the non-profit American Living Organ Donor Fund to help donors cover lost wages and donor-related costs. With donations from an online Kickstarter campaign, the fund has granted three requests so far. Three others are under review.

According to the U.S. Organ Procurement and Transplantation Network, more than 123,000 Americans are waiting for organ transplants. Roughly 102,000 need kidneys and more than 15,000 need livers - and many of them could be helped by living donors.

But a study by the National Bureau of Economic Research found that half of Americans would struggle to come up with $2,000 in a pinch, let alone the much higher amounts donors generally need.

The transplant recipient's insurance covers the donor's medical expenses, but not transportation, lodging, childcare, or lost wages.

The 1984 National Organ Transplant Act made it illegal to compensate organ donors - and while the need for living donations is widely recognized, some fear Fry-Revere's fund enters ethically murky territory.

"It rings a little close to payment for organs," said Dr. Talia Baker, a Northwestern University transplant surgeon. "It makes me a little uncomfortable."

As a member of the American Society of Transplant Surgeons' Living Donor Committee, Dr. Baker does not oppose the fund - if it assists potential donors achieve goals to which they're already committed.

"If this is the only possible donor, if it wouldn't coerce that donor or be a final reason for donating, then it is fine," she said.

Thirty-one-year-old single mother Melissa Brincks of Carroll, Iowa, said that without the fund, she would not have been able to donate a kidney to her brother. She was his only compatible relative.

Her boss at a carpet cleaning company said he would be forced to lay her off and hire her back after her six-week recovery.

"I didn't understand how someone could do a good thing and then not know how to take care of their own life in the meantime," Brincks said.

After her brother's transplant this week, Fry-Revere's fund provided her with a grant to cover 40% of her lost wages. That check, along with unemployment insurance and caregiving help from her parents, made donation possible.

Seven hundred dollars from an online campaign and church friends was all the assistance 46-year-old Stephanie Washington of Hayward, California, believed she could get while planning to donate a kidney to her 24-year-old niece, a gunshot victim.

"I didn't know how she was going to pay her bills," said her sister, Faye Herald, whose research led her to Fry-Revere's fund. Washington runs a cleaning service and would receive no income during recovery.

Herald applied, submitting documentation that Washington was self-employed. Washington received a check to cover two months of rent and bills following surgery earlier this month.

"It's such a blessing and relief," Washington said. "I can relax, and that's one of the reasons my recovery is going so good. I don't have to worry."