Despite a lengthy waiting list of patients in need of organs, South Carolina has among the lowest rates in the country for enrollment in a popular national website that allows organ donors and recipients to find each other, experts said.
Matchingdonors.com, a nonprofit site started in Boston in 2004, allows altruistic donors to post information about themselves — including their interests, blood type and the organ they’re willing to part with. The site, which has received numerous Congressional honors and bills itself as the largest living donor database in the world, includes thousands of listings for kidneys, livers, lungs, intestines and bone marrow.
For a lifetime subscription fee of $595 — an amount that is waived for those who can’t afford it — people in need of organs can also post personal information. Donors and recipients cruise the site in search of matches, contacting each other through message links on their profiles.
South Carolina has two listings for people in search of kidneys and 90 listings for possible donors on the site, which lists more than 8,400 donors nationwide and gets 1.5 million hits a month. The South Carolina figures, among the lowest in the country, are by far the lowest in the South, according to the site’s founder and CEO Paul Dooley.
“People find out by word of mouth,” Dooley said. “There’s just not the awareness or outreach there.”
Dr. Kenneth Chavin, a professor of surgery at MUSC, said the lack of participation may be attributed to patients’ education level.
“There’s not the level of sophistication here that there may be in other parts of the country,” Chavin said.
Dooley said people in need of organs spend an average waiting time of six months on Matchingdonors.com — far shorter than the average time on federal registries that match patients with organs from cadavers, he said.
“People should know there are alternatives to the national lists,” he said.
In contrast to Dooley’s site, 940 people were listed Thursday on the Organ Procurement and Transplantation Network, a national registry administered by the U.S. Department of Health and Human Services. Most people spent less than two years on that list; 157 have waited on it for more than five years.
One South Carolina woman in need of a kidney transplant mentioned the federal registry in the profile she posted on Matchingdonors.com a year ago.
“I am on the transplant list, but that will be a long wait,” she wrote. “I love animals, I love reading, I love life. I love camping. I love the water. I love the outdoors, but I’m unable to do most of these things because of my illness.”
Despite the shorter waiting times, Chavin from MUSC has some reservations about Matchingdonors.com.
“It may be the way things are headed with the World Wide Web, but it’s not the normal pathway to transplantation,” said Chavin, who removed the donor’s kidney in the transplant performed Wednesday. “It’s not in the mainstream now. It’s not the traditional way.”
Instead, MUSC is enrolled in sites that match sets of “paired donors.” For example, a person may be willing to donate a kidney to a loved one, but later find out they are not a compatible match. That pair could be linked with a pair facing a similar crisis at another hospital.
MUSC has been enrolled in sites that facilitate such matches for about six months, Chavin said. The hospital has not yet performed a transplant from matches produced on the paired sites, he said.
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