With too many people dying while they wait for organ transplants, officials at two area hospitals say they will now perform transplant operations for patients who have found live donors via the Internet and other media.
Until this year, Buffalo General Hospital and Erie County Medical Center, the only two hospitals in the region that do transplant surgery, required that organ donations come through the United Network for Organ Sharing, or from a relative or other person emotionally tied to the transplant patient.
The policy change comes as the wait gets longer with the traditional source list, according to Dr. Oleh Pankewycz, administrative chief and medical director of the Multi-Organ Transplant Center of Kaleida Health/Buffalo General.
“Where once people waited a year or two on the list to receive a transplant, now they are waiting three or four years,” Pankewycz said. “At Kaleida, we were looking for a way to cast the net wider. Given that so many people on the waiting list are dying, we felt it would be a disservice not to at least consider media-inspired, altruistic donors.”
As of April 2004, there were 83,888 names on the national organ transplant waiting list, according to the Web site of the Organ Procurement and Transplant Network.
While there is no hard data available, it appears that transplant surgeons across the nation are slowly becoming more open to the practice of at least considering donors found on the Internet or through other media – although most do not to openly advocate it.
Dr. Rocco C. Venuto, director of ECMC’s transplant program, said the hospital has a policy in place to consider the Internet donors.
In Buffalo, the monumental policy change is also the result of some very determined local families
Jeanette Ostrom of Jamestown, Diane Krzyzanowski of Akron and Patti Merritt of Grand Island – all of whom have a history of kidney disease and transplants within their own families – started pressing Kaleida a year ago to change its policy on Internet donors.
Ostrom’s son Paul Cardinale, 34, must undergo dialysis three days a week, after his body rejected a kidney he received from his father 10 years ago. With no more family donors eligible, Cardinale has been waiting for a new kidney since July 2004.
“Many who need transplants don’t have a family member who can donate,” Pankewycz said. “And that’s a death sentence.”
In October 2004, Ostrom saw a published report and photograph on the Internet of a man named Bob Hickey sitting up in his hospital bed after he received a kidney found by posting his profile and picture on the Web site MatchingDonors.com.
Ostrom wasted no time plunking down $600 for a lifetime membership on MatchingDonors.com and typed in a profile of her son, a Jamestown financial planner who has spent much of his life battling kidney-related ailments.
Ostrom was shocked when a woman from Minnesota responded to her Internet plea within an hour of her posting the profile.
“I was so excited, I couldn’t wait,” she said. “I called the hospital the next day.”
But officials at Buffalo General gave her bad news. They were sorry, they said, but they would not accept a donor solicited via the Internet. The potential donor from Minnesota gave her kidney to someone else.
MatchingDonors.com currently has a listing of nearly 2,700 potential donors. The nonprofit organization’s Web site contains a statement saying that it puts all the membership fees it receives back into operation of the site.
Team of “true believers’
Ostrom said doctors and members of the hospital’s administration felt terrible about her son’s situation. They agreed to begin meeting with her, Krzyzanowski and Merritt.
“Kaleida is a very large organization, of course, and we quickly realized that the top administration would need to be behind this to make any real changes,” Merritt said.
A year later, Kaleida has agreed to change its policy and has put in place procedures to evaluate media-inspired donors when they become available.
“Without the doctors and nurses on the Buffalo General Transplant Team, like Dr. Pankewycz and Dr. Mark Laftavi, none of this would have been possible,” Merritt said. “Really, they not only worked to write and rewrite policies, presented to the Ethics Board, and dealt with the legal department of Kaleida – but more importantly, they were and are true believers in this program. . . . Their hearts are in this.”
Just before Thanksgiving this year, a man from Kansas who saw the profile of Cardinale on MatchingDonors.com communicated with Ostrom about becoming a donor. It took only a short time to determine that his kidney would be a good match for Cardinale.
The potential donor must first undergo psychological screening by Kaleida. The hospital also must interview the man’s family. And it must be determined that there is no financial reason why he is donating his kidney to a perfect stranger.
Use of media rising
There are those within the medical profession who question the use of Internet donors.
Critics such as Dr. Douglas W. Hanto, who leads the Transplant Center at Boston’s Beth Israel Deaconess Medical Center and who formerly was chairman of the ethics committee of the American Society of Transplant Surgeons, have argued that prospective donors who “meet” transplant patients via the Internet are choosing to give their organs based solely on a person’s picture or story.
But the way Americans and the medical community have traditionally viewed transplant surgery has undergone dramatic changes since the first successful kidney transplant was performed in the United States 51 years ago.
The public has slowly grown more accepting of donors who are unrelated but emotionally tied to a recipient – a donor who is a spouse, for example. In the last few years, people in search of organs have increasingly resorted to media outlets such as billboards, newspaper ads, the Internet or even church bulletins to find living, altruistic donors.
Meanwhile, two-thirds of the nearly 90,000 patients on the national waiting list are in need of kidneys. For all of New York State, the total number of transplant surgeries of all organs that year was 1,211 – more than double what it was in 1988.
In Western New York in 2004, Buffalo General completed 51 kidney transplants, and ECMC did 38, according to the Organ Procurement and Transplant Network’s Web site.
More than 250 kidney patients are on the waiting list in Western New York.