Maine Med Hopeful About Kidney Transplant, as Ethics Debate Rages

Apr 10, 2015

PORTLAND, Maine - Maine Medical Center is continuing to work toward a successful kidney transplant for Christine Royle, the South Portland mother whose story attracted national attention after she advertised for a donor on her car and a stranger volunteered.

But now there's a glitch over a fundraising effort for Royle's potential kidney donor, Josh Dall-Leighton. An online fundraiser was intended to cover the cost of Dall-Leighton's unpaid work leave, but donations far exceeded the initial $6,000 goal and reached nearly $50,000.

That raised legal concerns for Maine Med, which must comply with federal law that restricts compensation for organ donors.

In the U.S., more than 123,000 people are waiting for a lifesaving organ transplant - most of them for kidneys. And that number far exceeds the supply, says Laura Dempsey of the New England Organ Bank.

"On average about 21 people in this country will die waiting for an organ donation that just didn't come in time," Dempsey says. "Unfortunately, we just don't have enough organs to save everyone who's in need."

That's 21 people a day. The New England Organ Bank coordinates donations from people who have died, and Dempsey says the shortage is due to a variety of reasons. For one, not everyone is registered to be an organ donor when they die. And not everyone dies in a manner where organ donation is possible.

"The problem is, 30 years ago we thought we could solve the whole organ shortage with cadaveric organs - so, organs from deceased organ donors. And the truth is, that's never going to happen," says Sigrid Frye-Revere, co-founder of the American Living Organ Donor Fund, an organization that supports organ donors.

Thirty years ago, Congress passed the National Organ Transplant Act, which outlawed the sale of human organs, but also helped establish transplant networks. Frye-Revere says decades later there's still a donor shortage. She says she spent seven years researching the issue at a think tank called The Center for Ethical Solutions. "We discovered that so many donors couldn't donate because they didn't have a way to cover their expenses during unpaid leave."

Frye-Revere says the recipient's insurance typically covers all medical-related expenses for a donor. And there's a federal program to cover travel and lodging expenses for low-income donors and recipients.

Frye-Revere says the problem is, the compensation is just enough to get these donors in the door, and they often feel abandoned once the surgery's over, "because the government would pay their flight or lodging near the transplant center, and then send them home essentially with no money to take care of themselves while they were recovering."

Including the time they miss from work. The American Living Organ Donor Fund helps donors cover these extra out-of-pocket expenses related to their donation - on average, they give donors between $1,300 to $4,000. That is allowable under federal law.

But some donor advocates say the government should automatically cover these expenses, and maybe even pay above and beyond the costs associated with the donation.

"We could wipe out the organ shortage virtually overnight," says Jeff Rowes, a senior attorney with the Institute for Justice, a civil liberties law firm in Virginia. "I think our principal ethical consideration should be saving people's lives. And our second ethical consideration should be allowing both patients and donors to make informed decisions as adults. That's how we respect their dignity and autonomy - by treating them like grown adults."
Rowes says even if donors received compensation, the process would still require informed consent and extensive physical and mental screening. But Mildred Solomon, president of The Hastings Center, a research ethics institute, says making organs more of a commodity raises serious ethical issues.

"The main concern I have is, at the end of the day, it's going to be poor people who sell their organs," Solomon says. "And to call that a free choice and say it's up to them is to really ignore the financial desperation."

Solomon says she sees the long waiting list for transplants not as a failure of the current altruistic system but as a failure of the U.S. public health system to prevent diseases like diabetes that create the need for organ donation in the first place.

As for the kidney donation that Maine Medical Center is grappling with, Jeff Rowes of the Institute for Justice says the best solution now is for donor Josh Dall-Leighton to return the fundraising money that exceeds his expected costs of donating a kidney.