Remove financial barriers to organ donation, experts say

Taking the financial burden of organ donation off the shoulders of donors and their families is not only more fair, but it might also lead to more organs for transplant, experts say - and they urge Americans to find ethical ways to get rid of financial “disincentives” to organ donation.

In addition to removal of financial barriers, they would also like to see careful consideration and testing of potential financial incentives for organ donation.

But any changes in current practice must be able to pass tests of both efficacy and ethics, says the 38-member Incentives Workshop Group, comprised of representatives of the American Society of Transplantation and the American Society of Transplant Surgeons.

The group published its recommendations in a paper in the American Journal of Transplantation.

“Every person in the chain of an organ donation, except one, profits,” said Daniel Salomon, an author of the paper and the medical director of the kidney and pancreas transplant program at Scripps Health in San Diego.

That “one” who doesn’t profit is the donor. According to the American Journal of Nephrology, living donors incur out-of-pocket expenses averaging $5,000. While a recipient’s insurance covers the donor’s medical expenses, it won't cover transportation, lodging, childcare and lost wages.

And families of deceased donors may face higher hospital and funeral costs resulting from donation.

“Donor costs should be incorporated into the cost of the transplant,” said Tom Mone, CEO of OneLegacy, the nation’s largest organ procurement organization. “The donor should bear no economic detriment.”

The workshop group maintains that upfront cost coverage would result in drastic and long-term savings among insurers by facilitating organ donation.

“From every single patient that stays on dialysis, the payer is losing $60,000 a year if they are not transplanted,” Salomon said. According to the U.S. Organ Procurement and Transplantation Network, more than 123,000 Americans await organ transplants. Roughly 4,000 die each year.

But according to the United Network for Organ Sharing, the number of living kidney donors in the U.S. has been declining. In 2014, they numbered 5,817.

While there’s agreement that financial barriers prevent too many potential donors from proceeding with the surgery, incentives are a murky territory. The 1984 National Organ Transplant Act made donor compensation illegal. But other incentives may be effective without interfering with inherent altruism, the authors say. For families of deceased donors, for example, coverage of extra funeral costs could be considered.

Offering incentives to living donors, however, “is so ethically charged,” said Elisa Gordon, a Northwestern University medical anthropologist and working group member. “We don’t know if that would result in exploitation or undue inducement.”

“We have a responsibility to living donors,” Salomon said. “But, we basically take their kidney and say goodbye.” He maintains that donors should receive lifetime health coverage, while other working group members have suggested coverage for a certain time.

Some people fear that such offers may go too far, however. Any harm attributable to living donation, including medical costs and lost wages, should be mitigated, said Mildred Solomon, CEO of The Hastings Center and a Clinical Professor of Anesthesia at Harvard Medical School. But lifetime care constitutes a “perverse incentive” in the U.S., she believes.

“We are the only developed country in the world that doesn’t see healthcare as a universal right,” Solomon said. “What a statement it would be about our society if people decided to give an organ so they could get health insurance.”

Working group members say a balance should be struck between burdensome donation costs and compensation, and this balance can be identified in careful consideration of other incentives- but not cash.

“The conversations have been too polarized,” said University of Nebraska Medical Center transplant surgeon Alan Langnas, a paper co-author. “When you have those two arguments, nothing happens.”

Salomon said he anticipates dialogue with the Centers for Medicare and Medicaid Services, private insurers and donors who themselves have experienced roadblocks.

“We need to initiate discussions with a broad group of stakeholders in this country, starting with the patients, families and payers,” Salomon said.