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Organ donors' families say state fund should help needy with funeral and medical bills

How to become an organ donor

There are several ways to register as an organ and tissue donor in Pennsylvania:

• PennDOT’s Photo License Centers: When you get your photo taken for a driver’s license or identification (ID) card, you will be asked if you want to be designated as an organ donor. There is no fee to do this. People younger than 18 need parental consent.

• Online: Visit donatelifepa.org or organdonor.gov. Residents of other states can register at donatelife.net.

Related Stories
By Luis Fábregas and Andrew Conte
Thursday, Sept. 12, 2013, 10:09 p.m.
 

When Jeannie Leuthauser-Swartz died a year ago, her family donated her liver, kidney and other body parts and tissue through the nonprofit Center for Organ Recovery & Education in O'Hara.

Her parents and sister found some comfort in knowing that Jeannie's liver and kidneys saved three lives and researchers used her tissue.

But her death at age 34, nearly a month after surviving a motorcycle accident, left the family with a $4,000 funeral bill it can't pay.

“They took everything, and I'm still looking for a way to pay her funeral,” her mother, Lorraine Leuthauser, 55, said at her apartment in Arnold.

Leuthauser said her grief was compounded on Sunday when she read a Tribune-Review investigative report about a Pennsylvania fund named for the late Gov. Robert P. Casey and intended to help organ donor families with up to $3,000 toward funeral and medical bills, from $1 donations from Pennsylvania drivers. No money has been paid for those expenses, the newspaper revealed, because state lawyers fear it will violate a federal law that bans payment for organs.

A smaller program to pay up to $300 for hotels, meals and grief counseling has paid out about $180,000 of $1 million collected since 2000 — all but one payment in the first decade for living donors and their families.

Pennsylvania Auditor General Eugene DePasquale told the Trib that he plans to discuss the issue with the state Department of Health, which oversees the donor fund that has never been audited.

“There are troubling issues being raised about the organ donor fund, and I take those concerns very seriously,” he said. “... People who donate to the fund should feel confident their hard-earned money is going to the right place.”

Sen. Bob Casey, D-Scranton, the late governor's son, told the Trib that he was unaware that little money from the fund bearing his father's name had reached deceased donors' survivors. The governor, who died in 2000, received a heart and liver transplant in 1993 from William Michael Lucas, 34, an unemployed man who was beaten outside his Monessen home.

Lucas managed to climb steep stairs before collapsing on his front porch. His blood still stains rocks near the front door.

Twenty years after his death, $6,200 of Lucas' funeral bills remain unpaid, funeral director B. Clifford Draper of Monessen told the Trib. Lucas' sister Yvonne said their parents, who since have died, could not afford a funeral or the medical bills that kept coming for years, from his hospital stay before he died.

“When it comes to a situation like we had to deal with, then I would think the family should get something,” said Lucas, 60, of Upper Marlboro, Md.

The nation's nonprofit organ procurement organizations collected $1.2 billion in 2011 and recovered more than 80,000 body parts. Executives averaged $320,000 in total compensation that year at 51 of the 58 organizations for which records are available.

“They make a lot of money, and it doesn't come to the families of the organ donors — not at all,” Lucas said. “You know who benefits? The organ procurement people.”

CORE CEO Susan Stuart, recently elected president of the Association of Organ Procurement Organizations, said each organization has a governing board that provides oversight to assure their program is run with integrity.

Casey said he did not know Lucas' funeral expenses were not paid until the Trib asked him about it. He expressed “eternal gratitude” to Lucas' late mother, Frances.

“By choosing to donate her son's organs, Frances Lucas saved at least two lives: my father's and the life of another individual at that time,” the senator said. “Her courageous decision in the wake of such a horrible tragedy was an immeasurable act of love. We should honor the sacrifice that families like the Lucas family make every day.

“I'm committed to working for a legislative solution that allows donor families to receive help with medical and funeral expenses in a manner consistent with federal law.”

Stuart said she supports changes that would establish a pilot program to pay donors' burial expenses because the nonprofit cannot legally do so now.

Several donor families have told the Trib that they support organ donation despite the big money behind the scenes. But Jamie Leuthauser, 30, of Tarentum, sister of Jeannie Leuthauser-Swartz , described the organ donation process as rushed.

“It was a lot of information to take in,” Leuthauser said, adding the family's time with her sister was limited during her final hours because doctors needed time to remove her organs within a specific time frame.

Given the sacrifice involved, Leuthauser said, donors' families needing help with burial expenses should get it.

“I understand you can't sell organs — that's illegal — but they're definitely making a lot of profit off of it,” she said. “For donor families not to be getting what they're supposed to get under the law doesn't make a lot of sense.”

Luis Fábregas and Andrew Conte are Trib Total Media staff writers. Contact Fábregas at 412-320-7998 or lfabregas@tribweb.com. Contact Conte at andrewconte@tribweb.com or 412-320-7835.

 

 
 


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