Organ transplant recipients often need to hold fund-raisers, family finds

Apr. 27--Furthest from Daniel L. Mosser's mind early this year as he clung to life waiting for a donor liver in a Philadelphia transplant center were the bills he would incur.

And even though Mosser, 57, of Sinking Spring was fortunate enough to get a transplant on Jan. 22, neither he nor his loved ones could dwell on the impending financial crisis.

Released March 13 from the Hospital of the University of Pennsylvania, Mosser still is unsure what his medical bills will total, or how much follow-up care and medicine will cost.

To help pay the mounting bills, Mosser's family has turned to his friends and the community.

Mosser's fiancée, Margaret Williams, with whom he lives, and her daughter-in-law Brenda L. Williams of Robesonia, have organized a benefit auction for Mosser.

The event is scheduled for Saturday at the Kutztown Fire Company in Myerstown.

Although medical advances have made transplants an option for more people, the rising costs can be a huge financial burden on a family.

For example, the average charges for the first year following a liver transplant are $388,600, according to the National Transplant Assistance Fund. The average one-year charges for a heart transplant are $471,600.

People in need of a transplant often find that the only way they can afford one is to seek financial help from the community, said Lynne C. Samson, executive director of the fund.

Some health-insurance plans have lifetime limits on expenses, while others require co-payments that can lead to hundreds of thousands of dollars in uninsured expenses, she said.

There's also the added expense for many recipients of moving close to a transplant center while waiting for an organ.

To help people finance transplants, no fewer than six organizations have sprung up over the last 20 years to lend fund-raising expertise.

Still, seeking help from friends and neighbors is difficult, even though it is often necessary.

Transplant centers such as those at Penn in Philadelphia and the Milton S. Hershey Medical Center advise potential recipients that they should consider public fund-raising, Samson said.

"It's a very hard concept to get across because they are proud and don't realize it is as empowering to the community as it is enriching for them," Samson said. "It allows the community to focus on giving a person a second chance at life and promote healing."

Last year, 270 people who had received transplants or are awaiting transplants started fund-raising campaigns with the help of the fund. In 1995, the organization assisted in 70 campaigns.

The growth in fund-raising campaigns parallels the increase in transplants in the region.

The Gift of Life Donor Program -- the federally designated nonprofit organ-procurement group that coordinates donations from the deceased -- has seen an 86 percent increase in donations in the last decade in its service region, said John D. Green, the program's community relations director.

The district encompasses the eastern half of Pennsylvania, Delaware and southern New Jersey, Last year, 1,131 people received transplants, he said, compared with 618 in 1994.

The increase is due to improvements in medication and transplant procedures, and in the greater number of people who designate themselves as donors, Green said.

He also said the region last year led the country in the number of people who donated organs following death.

Green stressed that out-of-pocket expenses vary on a case-by-case basis, depending on the type of organ and the health-insurance coverage.

For kidney transplants, for example, there is no out-of-pocket expense because they are covered in full by Medicare, the government health-insurance program that primarily serves older Americans.

Mosser's employer-sponsored health plan is expected to cover the entire cost of the operation itself, but he is responsible for a 20 percent co-pay for other related charges.

Those uninsured charges -- for diagnostic tests, physicians, hospitalization and follow-up care -- likely will exceed $70,000 this year, Margaret Williams said.

In addition are the ongoing medical expenses, including the cost of anti-rejection drugs and other medications Mosser will require for the rest of his life.

Organizations such as the National Transplant Assistance Fund provide assurances that money raised will go only for transplant-related medical expenses.

Trust funds are set up in the recipient's name, and medical bills are paid directly from that account after being reviewed and approved by the board of directors.

Samson said she has found that fund-raisers are much more successful if they are started before the transplant rather than after because people want to focus on the hope that the transplant will be successful.

Mosser and his family didn't have the luxury of organizing their fund-raising before his operation.

His cirrhosis went undiagnosed until December.

Mosser's fiancée found him unconscious in their living room on Jan. 1. At the time, he was awaiting an evaluation at Penn for a transplant.

Mosser was taken by ambulance to Reading Hospital and later transferred to the Penn Transplant Center.

Mosser hadn't felt well during the previous year, but he blamed it on a hernia that was surgically repaired in October, Williams said.

Doctors believe the cirrhosis was caused by accidental inhalation of chemicals in his previous job.

Williams expects the bill for Mosser's care to exceed the average because of his complications. He is on dialysis and continues to rehabilitate in a health-care facility.

But she's thankful that the knowledge and technology exist to help her fiancé.

"It's unbelievable the things they can do to keep you alive," she said. "But it's expensive. But, you know, it's your life."

Mosser agreed.

"It's to the point where, how much money do you put on life, even if I have to pay for it for the rest of my life, which I probably will," he said.

For Saturday's auction, businesses and residents, as well as friends and family, have donated items for sale.

The family also received generous support in its inaugural fund-raising event, a dance at the Sinking Spring Fire Company. The local band King Pins donated its services, and all 200 tickets were sold, netting $7,000 for the campaign.

The family also has established a Web site, www.donate4life.org, that offers updates on Mosser's condition, information on fund-raising events and how to donate.

"You try not to think about the big picture about how much it's going to cost," Brenda Williams said. "We're trying to take it one day at a time and try to make people aware of it (her future father-in-law's medical needs).

"Fortunately he has a lot of friends. He has a big support system."

Mosser appreciates the support.

"Everyone's going out of their way to help you, and you have people donating who never knew you." he said. "It's amazing to see the outpouring."

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