It’s a matter of life…

[Karol]

It’s a matter of life…
By Stephen T. Watson
NEWS STAFF REPORTER
Published:
April 26, 2011, 12:00 AM
Updated: April 26, 2011, 8:14 AM

Every year thousands of Americans—and dozens of people here in Western New York—receive the gift of a kidney or another badly needed organ.

Even so, there aren’t enough donated organs to meet the demand, leaving tens of thousands in declining health as they wait.

“It’s so painful that—I’m not a big crier, you can ask my family— but it brings you to tears,” said Erica Walker, who learned on Valentine’s Day 2009 that her kidneys were failing, of her dialysis treatments.

A good number of Erie County residents have signed up with the state’s Donate Life registry, but overall, with 13 percent participation as of 2009, New York has one of the lowest registration rates for organ donation after death. Only Texas, South Carolina and New Hampshire had lower rates, according to Donate Life America.

Why is this? New York mails out the registration forms in the packet sent to drivers when they are required to

renew their licenses — once every eight years. Would-be donors can’t enroll online; if they try to register on the website, the state still mails them a form that has to be signed and returned.

“The extra step is fatal,” said Tom Feeley, associate professor and chairman of the University at Buffalo Department of Communication, who has studied how to encourage organ donation.

So how can we boost the number of cadaver, and living, donations?

Ideas include finding matches through the Internet, making it easier to join state donation registries and setting up exchanges for people who want to donate but aren’t a match with their loved one.

Other proposals are more controversial, such as paying for organs or establishing “opt-out” registries, as found in other countries, that automatically list people as donors.

But, as April marks National Donate Life Month, everything should be tried, because too many people die waiting for a transplant, some advocates say.

“I wish that more people would just consider it,” said Danielle Merchant of Cheektowaga, who donated a kidney to a stranger to move her husband to the top of the kidney waiting list at Buffalo General Hospital. “It was the most rewarding, life-changing event in my life.”

Exhausting treatments

Just over 110,000 people in this country are waiting for an organ transplant, with 80 percent of them in need of a new kidney, according to federal data. Last year, 142 people a day were added to organ waiting lists across the country, and 17 died each day before they could receive a transplant.

Patients with kidney diseases endure exhausting dialysis treatments to keep them alive.

“It’s hard to keep a good attitude,” said Walker, 37, a former factory worker and college student who has a donor lined up but is waiting for surgery approval from her transplant center.

The question of how to boost donations has two parts—how to encourage more living donations and how to convince more people to donate after death.

State governments and nonprofit groups typically rely on advertising and educational campaigns to persuade people to sign their organ registries.

New York State needs to get the registration form to residents more frequently than every eight years and let people sign up online, said Mark J. Simon, president and CEO of Upstate New York Transplant Services.

The Legislature passed a bill last year that allows for electronic signatures on the registry, though it’s not clear when this change will be put in place.

Some advocates would go further, changing how organ-donation registries are operated. While in the United States people opt in for organ donation, other countries have an opt-out, or presumed consent, system that automatically signs up people as organ donors until they remove their names.

But, Simon said, “There really isn’t any support for that, locally or nationally.”

Members of LifeSharers.org, on the other hand, agree that after they die, their organs first will go to people who are themselves willing donors.

“It’s absolutely the golden rule in action,” said Joseph Lipsitz, a financial planner from Amherst who signed up on the site.

There are different issues, and different potential solutions, to the problem of encouraging more living donations.

Making connections

Living organ transplants performed in the United States peaked in 2004, at 6,991, and have slipped in the years since, according to federal data. The donors are usually a family member, friend or other acquaintance of the recipient.

There is, however, a small but growing number of altruistic organ donations—made by a donor with no prior connection to the recipient. National sites such as MatchingDonors. com, and the local site Western New York Kidney Connection, link together donors and recipients.

“We thought we could start a website that is local — neighbor helping neighbor,” said Jeanette Ostrom, one of four connection founders, whose son received a kidney in 2006.

The Kidney Connection has made four successful matches since September 2006; 76 people are registered with the site and waiting for a match.

In 2010, 150 people went through screening to become a kidney donor at Buffalo General, and only 23 were able to donate, said Tim Oehmler, transplant manager for Buffalo General’s Multi-Organ Transplant Center.

Kidney swaps, or exchanges, try to address the shortage.

For example, a wife who isn’t a match with her husband donates her kidney to a woman who isn’t a match with her brother. Then this brother donates a kidney to the husband of his sister’s donor.

Managing the connections can be complicated; one kidney swap in Washington, D. C., in 2009 involved 13 recipients, 13 donors and 26 operations.

Paying donors

Another idea raises ethical issues but is receiving some support: paying for organs.

An economics paper from 2007 argues paying donors of live or cadaver kidneys would relieve the dire organ shortage.

Julio Jorge Elias and Gary S. Becker calculated that a kidney from a living donor is worth $15,200 to cover the donor’s post-surgery recovery time, risk of death and risk of reduced quality of life down the road.

Paying organ donors is prohibited nearly everywhere.

However, the only country that does not have a waiting list for transplant organs is Iran, which also is the only country that has a formal system of paying for organs, Elias said.

“We need some form of incentive. There is a lot of altruism out there, it really is amazing, but it’s not enough,” Elias, a former UB economist who now teaches at a college in Argentina, said in an interview.

Limited forms of non-monetary compensation are allowed.

Some employers give people leave time to recover from an organ donation, and in New York donors can receive a tax write-off for certain unreimbursed expenses in the year they donated an organ.

Michelle Foley said it’s worth exploring all of these ideas, because the need is so great.

“Hopefully, the word gets out that people only need one kidney,” said Foley, 36, of Lancaster, who received two kidney transplants but waits for a third. “There’s so many people who could donate who don’t.”

Catching up

The News in recent years has profiled several pairs of living kidney donors and their grateful recipients. Here’s how they are doing today.

Donor:Mollie Walsh

Recipient: Tim Bohen

Relationship: Siblings

Date of surgery: May 2009

Update: Both in good health. Their sister, Mary Ann Corbett, who also needed a kidney at the time, received a transplant in November and is doing well.

…

Donor: Kate Foster

Recipient:Michael LoCurto

Relationship: Boyfriend and girlfriend

Date of surgery:March 2009

Update: Foster said they both are doing great.

…

Donor:Luis Clay

Recipient:The Rev. George L. Reger

Relationship: Pastor and congregation member

Date of surgery: February 2010

Update: Clay said he hasn’t had any medical issues and he believes the kidney he gave to Reger, the pastor at Blessed Trinity Catholic Church, is working fine.

swatson@buffnews.com