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Monday, July 30, 2007

HEALTH & FITNESS

7 DAY STORY SEARCH

Doctors, patients = debate ways to=20 increase organ donation=20

BY SUSAN STEVENS
Posted=20 Monday, July 30, 2007=20

Michael Molinaro of Wheaton didn't want to play the = odds.

When Molinaro's kidneys failed after a lifetime of = type 1=20 diabetes, his doctors told him he'd probably have to wait five years for = a=20 transplant.

Several family members volunteered, but none = qualified as a=20 donor. Meanwhile, three days a week, Molinaro spent four hours tethered = to a=20 dialysis machine - treatments that drained his energy.

"It just takes so much away from the quality of = life,"=20 Molinaro said.

Instead of feeling helpless, Molinaro decided to = improve his=20 chances. He spent about $500 to buy a lifetime membership to a Web site = that=20 helps match organ recipients with living donors.

'=20

"Being away so much = and lethargic=20 after dialysis is very difficult on my family, especially my 13-year-old = daughter and wife," Molinaro wrote in his ad on MatchingDonors.com. "My = desire=20 is to live a more normal life."

Within two months, a woman from Ohio offered a = kidney, only=20 to be disqualified after a series of medical tests. A week later a = Plainfield=20 man stepped up.

On July 13, 2006, doctors at Northwestern Memorial = Hospital=20 in Chicago transplanted one of his kidneys into Molinaro.

An organ market

The United States' system of organ procurement is = rooted in=20 altruism, the decisions that individuals make to

donate their own or a loved one's organs to save a = stranger's life.

But relying purely on altruism isn't supplying = enough organs=20 to meet the demand. More than 95,000 people are on the national waiting = list,=20 according to the Organ Procurement and Transplantation Network. Roughly = 6,700=20 die each year.

That's about 16 people dying every day.

The desperation of the wait list was highlighted = earlier=20 this year in a Dutch reality show that was to feature a dying woman = choosing a=20 recipient for her kidneys. At the last minute, producers revealed the = show was a=20 hoax.

Some of those waiting for organs expand their = options=20 online, searching for live donors like Molinaro did. Some go abroad; = transplant=20 surgeons in the Chicago area say every year, a few patients come back = from=20 China, India, Pakistan or the Philippines with new organs - and = sometimes=20 serious infections.

In light of the dismal statistics, some U.S. = transplant=20 doctors are urging lawmakers to be more open to financial = incentives.

It's illegal to pay for organs in the U.S., but in = 2002, the=20 American Medical Association issued a resolution calling for a study = into=20 whether "modest" financial incentives would encourage more people to=20 donate.

Lawmakers in Pennsylvania proposed a pilot program = to=20 reimburse donors' families $300 for funeral expenses.

In the case of living donors, a University of = Chicago=20 economist a few years ago calculated the price of a kidney is $15,000. A = liver:=20 $30,000.

Some doctors say it's only a matter of = time.

"A market in organs is way past due," said Dr. = Raymond=20 Pollak, a former transplant surgeon who now is director of medical = trials at=20 Edward Hospital in Naperville.

Pollak was one of four transplants experts to = debate the=20 merits and dangers of a marketplace for organs at an event last month = sponsored=20 by the National Kidney Foundation of Illinois.

Pollak argued in favor of paying families for = cadaver organs=20 to increase the supply. People already buy and sell other body parts, = including=20 blood, tissue and sperm, Pollak said.

"What's more ethical, to use the organs of people = who are=20 going to die anyway, or to let people die on the waiting list?" he = said.

But retrieving more cadaver organs wouldn't = fulfill the=20 need, said Dr. Lanie Ross, a medical ethicist at the University of = Chicago. And=20 paying living donors for organs raises a host of thorny ethical issues, = she=20 said, including whether it unfairly exploits the poor.

Scientists have little data on the long-term = health of=20 living donors, Ross said.

"Thousands are dying, but we have to think about = the donors,=20 too," she said.

In Iran, where the government pays donors for = their organs,=20 donors don't fare well, said Dr. J. Richard Thistlethwaite, a transplant = surgeon=20 at the University of Chicago.

Despite receiving money for an organ, 79 percent = of donors=20 could not afford follow-up health care visits, Thistlethwaite said. The = stigma=20 associated with selling your organs was so strong that 98 percent did = not want=20 to be identified as organ donors.

That stigma doesn't exist with altruistic organ = donors, he=20 noted.

What has more support, Thistlethwaite said, is = covering the=20 expenses of donors and doing a better job of ensuring their long-term=20 health.

"I believe in the transplant community there is = support for=20 paying for lost wages," he said. "Most of us support paying for health = insurance=20 for them."

If it were up to him, people wouldn't have a = choice; once=20 you die, your organs would become available for transplant.

Presumed consent is already the model in some = countries,=20 including Spain and Belgium.

Reciprocity

All of those proposals have a common problem, = according to=20 Dave Undis.

At this point, they're mostly rhetorical. They all = require=20 politicians to pass new laws.

"From a political standpoint, it's a nonstarter," = he=20 said.

Undis thinks he has a better idea. The former = insurance=20 broker was struck by the fact that people can receive an organ even if = they=20 hadn't registered to donate themselves.

So Undis founded LifeSharers, a nonprofit Web site = in which=20 people sign a contract saying if they die, they'll donate their organs = first to=20 other people who are members of LifeSharers. If none is a match, the = organs go=20 to the top person on the national waiting list.

You have to be a member at least six months before = you're=20 eligible for a transplant.

So far, that hasn't happened to anyone. = LifeSharers has=20 9,300 members, of whom 52 are on the transplant waiting list. Undis = hasn't=20 calculated how membership improves your chances of finding a = donor.

"Every time we add numbers, that probability goes = up," he=20 said. "The chance to improve your odds even a little could mean the = difference=20 between life and death," he said.

Dozens of people in the Chicago area have already = joined=20 LifeSharers, including Catherine Rajcan, a court reporter who lives in=20 Wheaton.

Before she heard of LifeSharers, Rajcan supported = organ=20 donation, but she likes the idea of being able to designate a recipient = for her=20 organs.

"I think people have a right to have some say in = where=20 they'd like their organs to be donated," she said. "It's our = bodies."

Growing demand

Web sites like LifeSharers and MatchingDonor.com = elicit=20 ethical complaints that organs should go to the neediest patient, not = the one=20 with the best online plea or access to the Internet. Doctors at one = Chicago-area=20 hospital refused to perform Molinaro's surgery on ethical = grounds.

In terms of logistics, LifeSharers would add = another layer=20 of bureaucracy in the time-pressed process of matching organs to needy=20 recipients, said Kim McCullough, spokeswoman for Gift of Hope Organ and = Tissue=20 Donor Network.

"It adds extra time to go through those lists of = names," she=20 said.

The organ shortage is not so much a problem of too = little=20 supply; the number of organ donors has actually grown steadily. It's = just that=20 the number of patients eligible for organs has mushroomed much = faster.

In the past six years, the waiting list has grown = from=20 75,000 people to over 96,000.

Conditions that used to kill patients at a young = age, such=20 as cystic fibrosis, now can be medically managed to the point where such = patients become eligible for organ transplants. And rising rates of = obesity,=20 high blood pressure and diabetes have driven more people into organ=20 failure.

Any discussion about improving the transplant = system ought=20 to include preventing disease in the first place, Ross said.

"Maybe one of the reasons we have such a large gap = is=20 because we haven't done a good job in prevention," she said.

Some reforms are already under way. In 2006, = Illinois=20 Secretary of State Jesse White established a new, stronger donor = registry. In=20 the old system, families could decline to donate their loved one's = organs even=20 if that person had registered as an organ donor. The new registry is a = legally=20 binding document that does not require family members' consent.

"Before the introduction of the new registry in = Illinois, we=20 found families overturned their loved one's intent to donate about 20 = percent of=20 the time," McCullough said.

"That translates to about 100 transplants that = could have=20 taken place every year," she said.

In Illinois, 250 to 300 people die every year = waiting for=20 transplants.

Since the new registry opened, more than 2.3 = million have=20 signed up, compared to 6 million in the old registry.

"The challenge we have is most people wait until = they go in=20 to renew their driver's license," McCullough said. "That only takes = place every=20 four years, so we're trying to encourage people to take advantage of the = online=20 registration."

Illinois residents can register at=20 www.ilsos.gov/organdonorregister/.

Gift of Hope's goal is to ensure consent for every = donation=20 that's possible, McCullough said.

It's a system that continues to rely on the = kindness of=20 strangers.

In one sense, that's no different than Molinaro, = other than=20 the direct appeal in his case.

Molinaro's donor did not wish to be identified, = and has had=20 only limited contact with Molinaro since the operation.

"He's a very religious person of faith," Molinaro = said. "His=20 goal was to help somebody. He didn't care who it was, he didn't care = what they=20 looked like, what their story was. He just wanted to help."

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