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Web provides cash infusion for patients

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Chris Barr of Richmond Hill is an accountant who likes to play poker. He needs $100,000 for a new kidney. Jeffrey Evans, a Duluth chef who likes to hike, hopes to get $75,000 for a heart. Stanley Harris Jr., a 3-year-old from Decatur with large brown eyes and a shy smile, is looking for $55,000 for a kidney.

So it goes, as national charities turn to cyberspace to connect those needing transplants with people willing to help them pay for their surgery and care afterward.

The money they seek is only what they need to get started. After-surgery care alone can sometimes cost more than $100,000 a year, and often, those expenses are not covered --- or are only partially covered --- by insurance.

It's common among the 247 transplant centers nationwide --- including Emory University Hospital and Piedmont Hospital in Atlanta --- to keep people off waiting lists for transplants until those people can devise a plan to pay for a lifetime supply of anti-rejection drugs.

The phenomenon sheds light on how medicine is outpacing insurance. Transplant patients are living longer, but it's expensive. Raising money online concerns one of the nation's leading bioethicists, who wonders whether the Web sites redirect resources from those who are sickest.

"Not everybody has a case to tell that's going to be publicly appealing," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania.

"If I don't have three children, haven't got pets, am I less deserving of a shot at a kidney or a piece of a liver?" Caplan asked.

Transplant hopefuls say the sites, which are run by national charities, are saving their lives.

Nancy Larson, an architectural sales representative from Decatur, used one of the Web sites, operated by the National Transplant Assistance Fund, to help raise $33,000 before she received a new kidney this spring at Emory University Hospital. She also received help from the Georgia Transplant Foundation, which raises money online, but does not post pictures of people needing help.

"I was very uncomfortable to think I had to solicit money," said Larson, who is recovering well. Still, "Who doesn't want to keep living?"

Larson said the donations helped her through a dark period of daily, nearly daylong dialysis.

"It's such an affirmation of the kindness of humanity that people will reach out and help," Larson said.

Providing Web pages for individuals is a relatively new function for three nonprofits, the Memphis-based National Foundation for Transplants,; the Philadelphia-based National Transplant Assistance Fund,; and the Bloomington, Ind.-based Children's Organ Transplant Association.

The nonprofits post information only about people whose need is hospital-certified. They pay bills directly to hospitals, doctors and pharmacies. Donations are tax-exempt for donors and recipients.

The National Foundation for Transplants and the National Transplant Assistance Fund keep a fraction --- 4 or 5 percent --- of what each person receives in donations. Charity Navigator, which rates charities for effectiveness, gives them good grades.

Visitors to these Web sites can scroll by state, alphabetical order or type of transplant.

The text accompanying each picture can be matter-of-fact and brief. Sometimes there are personal comments, or links to personal Web pages, that provide heart-wrenching glimpses of a fight for life.

There's this, from Leslie Courtney, a radiology student from McDonough who needs $25,000 for a lung transplant at the University of Alabama at Birmingham Hospital:

"I was her maid of honor, and because of this unexpected hospital trip I was unable to go to the wedding and be there by her side ... I was devastated."

Courtney's best friend and new husband left their wedding reception early to come to the hospital, where a chaplain performed the marriage ceremony again, with Leslie by their side, in her bridesmaid's gown.

Lisa Williams, a stay-at-home mom from Kennesaw, who needs $100,000 for a heart transplant, shared what happened just before she learned how sick she was:

"My attention was drawn away [by] the sudden chill that filled my body ... I had my first cardiac arrest and died. Ken [Williams' husband] vividly recalls how he walked in the room and found me lifeless. He started performing CPR ... turning between breaths to scream for help."

As moving as the stories are, the Web sites raise concerns for Caplan, the bioethicist.

He questions how closely the nonprofits check the biographical data posted and said a donor may be sending much-needed money to someone who has become too sick to survive a transplant.

Caplan saved his harshest criticism for the hospitals --- including the one at his university --- that start patients on this money marathon.

"The first test you [have to] pass is the 'wallet biopsy,'" Caplan said.

Dr. Tom Pearson, co-director of the kidney/pancreas transplant program at Emory, said patients must be realistic.

"There's no point in putting you through surgery and hospitalization," Pearson said, "if you don't have a plan for the meds."

Anti-rejection medicine can range from $10,000 to $25,000 a year. Adding doctor visits and lab work to those pharmacy bills means someone with a new kidney will pay, on average, $60,000 each year after surgery, said David Bakelman, executive director of the Georgia Transplant Foundation. Someone with a new heart will pay an average $120,000 a year, Bakelman said.

Pearson said no one has died because Emory wouldn't put him or her on an organ waiting list. The point, he said, is for a transplant hopeful to make a plan, not to actually raise cash.

John Monogue of Decatur said he and his wife, Jodi Monogue, a legal case manager, left a meeting with a hospital financial counselor with a different impression.

They were so convinced they needed to raise cash that it took them just one week to do so.

"We went nuts with a large e-mail campaign" that brought in pledges for $3,000 a month for postoperative medicine, John Monogue said. Jodi received a new liver this summer and is recovering at home.

Bakelman, of the Georgia Transplant Foundation, said Emory's policy reflects the hard fact that there aren't enough donated organs for everyone who needs one.

Caplan, the bioethicist, wasn't buying those arguments.

"I think that the [medical] centers want the money," he said, "and there are enough people who can pay that they can get away with policies that require up-front payment."

Copyright 2005 The Atlanta Journal-Constitution

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