Drivers' $1 donation yields little for Pennsylvania organ donors and their families
By Andrew Conte and Luis Fábregas
Published: Saturday, Sept. 7, 2013, 10:20 p.m.
Every time Pennsylvanians register a car or renew a driver's license, they have the option of giving $1 to the Gov. Robert P. Casey Memorial Organ and Tissue Donation Awareness Fund — and millions have.
The fund has raised about $10 million since 2000, including about $1 million or 10 percent that a state law designated to help organ donors' families pay funeral and medical expenses.
But none of the money has been spent to defray those bills, a Tribune-Review investigation found. Even after the state started a smaller program to help living donors or deceased donors' families to defray hotel and meal expenses, it spent slightly more than $180,000 of the $1 million for that. Only one deceased donor's family was helped before the state stopped reporting the results in 2011.
“It's something we should try to rectify either at the state level or at the federal level,” said Sen. Bob Casey Jr., D-Scranton, namesake of the late governor who received a heart-liver transplant in 1993.
Casey said he was not aware of issues with the fund until contacted by the Trib. His father, who died in 2000, and the General Assembly intended to help donor families such as the Lucas family of Monessen. Frances Lucas agreed to donate her son William Michael's organs after he was murdered.
“Because of that one act of kindness, my father's life was saved for sure ... and the life of at least one other person was saved,” Casey said. “The least we can do, in addition to expressing gratitude, is to have some measure of help.”
Former Lt. Gov. Mark Singel said it's disheartening to think the money has gotten waylaid in the state government.
“These are people who are making a tremendous sacrifice and doing something terrific for medical science and to save lives,” said Singel, a Harrisburg lobbyist. “People who are willing to make that commitment should be entitled to some consideration, and that was the exact purpose and point of that section of the law.”
Survivors cannot receive money from organ and tissue donations. Federal and state laws allow “reasonable” fees for recovery, handling and processing of organs and tissues. The Trib reported that 51 of the nation's 58 nonprofit organ procurement organizations in 2011 collected revenues of $1.2 billion and recovered more than 80,000 body parts.
“Is it fair that people are earning a substantial amount of money and profiting from something that is being donated by an individual or family?” said Jeffrey Kahn, a professor of bioethics and public policy at Johns Hopkins University in Baltimore.
Pennsylvania passed legislation in 1994 — with strong support from Casey Sr. — to set aside 10 percent of the fund to cover up to $3,000 of the medical, funeral and incidental expenses incurred by donors and their families.
Mike Dawida, a former Democratic senator who was the prime sponsor of the original bill, said lawmakers wanted to help donors' families while clearly not paying for organs.
“We didn't want to get into a quid pro quo,” said Dawida, 64, of Carrick. “But we wanted them to, at least, bury their kids properly.”
The bill established the Pennsylvania Organ Donation Advisory Committee and directed it to start a pilot program to distribute the money.
But committee chairwoman Cheri Rinehart told the Trib the state Health Department's legal counsel advised that any payments could violate the federal ban on organ sales.
The smaller program, started in 2001 to pay up to $300 for hotel and restaurant expenses, paid almost $160,000 to 785 living donors and their families by 2011.
After that, the state stopped reporting whether any other donors' survivors had benefitted. Another program was set up to pay for grief counseling, which paid out $2,255 last year.
The state Health Department received permission from budget officials to reallocate the money for other uses, such as donor education and grants to the state's two organ procurement organizations — the Center for Organ Recovery & Education in O'Hara and the Gift of Life Donor Program in Philadelphia.
‘Can't forget the donors'
Jack Silverstein, 67, a Monroeville organ recipient who heads a local kidney support group, said he never heard about the fund. He supports helping donor families.
“We definitely can't forget about the donors,” said Silverstein, who always wears a button with a photograph of Jordan Fitzwater, 17, of New York state, who donated a kidney, pancreas and bone marrow 11 years ago. “We need to help them if their families need it.”
Caitlyn Santucci, 17, of Ross said she was unaware that she could have donated $1 to the organ donor awareness fund when she renewed her driver's license. She said she did not know anything about how the money might be spent.
Santucci said she wants to be an organ donor for a simpler reason: “If I'm not going to use my organs, someone else can.”
Survivors of donors should at least receive help for a burial if they cannot afford it, said CORE CEO Susan Stuart.
“There's nothing that causes me greater sadness than to be sitting with a donor family who has made that gift and then have the donor family tell me they can't even afford a marker for the grave or they can't afford a funeral,” Stuart said.
Rinehart said she agrees that the idea of helping donors' families with funeral expenses deserves more public discussion.
“With the funeral benefit, it wasn't a direct benefit,” Rinehart said, “so there was more safety in that decision than to say that, ‘If you decide to donate your loved one's organ, you're going to be paid something.' ”
An update to the 1994 bill introduced this year by Rep. Joe Petrarca, D-Washington Township, would allow money to be spent for medical, funeral and incidental expenses. It also would provide up to $3,000 for bereavement counseling.
Stuart said members of the Association of Organ Procurement Organizations, a Virginia-based trade group which she leads as president this year, remain too divided to support changes in the federal law. But other groups already have backed the idea: The American Medical Association , the American Society of Transplant Surgeons and the United Network for Organ Sharing — the nonprofit appointed by the federal government to oversee organ transplants in the United States — support the creation of a pilot program.
The National Kidney Foundation had adamantly opposed any payments for organs but recently revised its policy to support money for some funeral expenses, spokesman Sean Roach said.
“When we offer money for body parts, there's a perception that we're going to exploit people,” said Kahn, the professor at Johns Hopkins. “The transplant community is really resistant to the negative impact of that kind of change.”
Andrew Conte and Luis Fábregas are Trib Total Media staff writers. Conte can be reached at email@example.com or 412-320-7835. Fábregas can be reached at firstname.lastname@example.org or 412-320-7998.
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