Advocates fight for transplant rules, registry

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Advocates

fight for transplant rules, registry

Saturday,

June 3, 2006

Danny Boone donated a section of

his liver to his brother, a gift of life that led to his death.

Almost

immediately after the surgery in 1999, Boone had complications, and over a

three-week period surgeons operated five times. Boone died the day after he was

put on a liver transplant list. He was 41.

His

widow, Rhonda, said her husband should never have been allowed to donate part

of his liver. " Danny had no idea what he was getting into, " she said.

Doctors

say Danny Boone had a condition that restricted blood flow to his liver. After

he died, Rhonda sued the hospital and settled out of court. She didn't stop

there and has since taken her fight to Capitol Hill.

" What

I found out is that the transplant community is accountable to no one, "

said Boone, who now serves on the federal government's Advisory Committee on

Organ Transplantation.

The

federal law on organ transplants does not address live donation and by and

large, the government does little to regulate it. It only requires that

hospitals track living donors for two years. But research by the United Network

for Organ Sharing, a nonprofit organization that helps facilitate organ

transplants, showed that hospitals lose track of one-third of living donors in

the first year.

According

to the organization's web site, in 2005 an average of 77 people received organ donations

each day-- about 25 percent of those surgeries involve living donors.

" I

would not encourage people to be a living donor, " said Joyce Somsak, a spokeswoman for the division of the federal

government that oversees organ transplants, the Health Resources and Services

Administration.

" There

aren't a lot of long-term studies on living donation and what the impact is, what's the impact on people's health, " she said.

Few cases tracked

The issue

of living donors has sparked controversy within the medical community. Some

doctors say they aren't doing enough to track the living donors and that the

risks aren't fully known; others disagree, saying the medical community is

working to improve the system.

Dr.

Benedict Cosimi, a Harvard

Medical School

professor and chief of transplantation at Massachusetts

General Hospital,

said living donors are scrutinized and given as much care as transplant

recipients.

" It's

kind of irritating actually for someone to claim that transplant surgeons are

just out there, trying to do as many cases as possible and ignoring the needs

and the care of these individuals, " he said.

Rhonda

Boone and Vickie Hurewitz, who also lost her husband

after he donated a part of his liver, want to see a national registry of donors

and have been pushing lawmakers to take action. Some doctors say such a list

would be too expensive and time-consuming.

But Hurewitz disagrees and says hospitals owe it to donors to

do long-term follow up.

" It's

an ethical thing to me. It's a principle, " she said. " You don't ask

people to do these surgeries and not take care of them. It's wrong. "

Donna Luebke, a nurse and kidney donor who is on the board for

the United Network for Organ Sharing, says she's horrified by the fact that no

one systematically tracks organ donors long-term.

" We

don't really know how risky this is, " she said. " What if we actually

knew that people who tend to do this after five years, 10 percent of them say

they're sorry they did this? "

Psychological ramifications

The

National Institutes of Health is working on a study of liver donors. Dr.

Weinrieb, a psychiatrist at the Hospital of the University

of Pennsylvania, said researchers

have seen depression in some donors for several reasons: some people have

physical side effects; sometimes the recipient dies anyway; sometimes people

don't deal well once the attention from others dissipates shortly after the

surgery.

One of

the leading authorities on the ethics of organ donations, Arthur Caplan of the University

of Pennsylvania, says some

transplant centers don't do psychological screenings before transplants.

" There

are no written hard-and-fast rules as to how individuals should be worked

up, " he said.

To some,

the risks are worth it. Kathleen Sampson, whose son, Connor, died almost three

years ago after being run over by a neighbor's car, wanted to donate a kidney

to a stranger as a way to ease the pain of her son's death.

s Hopkins

Comprehensive Transplant

Center did give her a psychological

test before the operation, and she passed.

Five

months after the surgery she says she feels healthy and good about her life. As

is typical with donors who don't suffer complications, the hospital has

followed up twice. While the hospital will keep up with the transplant

recipient for the rest of his life, Sampson is now on her own.

" At

first, everything revolved around the surgery and getting tested, " she

said. " And now it is just over, completely over. I thought it was a little

bit strange. "

Barb

in Texas - Together in the Fight, Whatever it Takes!

Son

Ken (32) UC 91 - PSC 99