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.