ACT II; GAY AIDS ACTIVIST AND LIVER TRANSPLANT RECIPIENT TURNS ATTENTION TO
RAISING AWARENESS OF NEED FOR ORGAN DONATION
CHRISTOPHER SNOWBECK, POST-GAZETTE STAFF WRITER
Larry Kramer was never polite about asking people to acknowledge the growing
plague of AIDS. His AIDS advocacy group, ACT-UP, sought attention in the
1980s and ' 90s through extreme displays, whether disrupting trades on the
New York Stock Exchange or carrying the corpses of AIDS victims to the White
House. Kramer wound up getting arrested at several protests along the way.
But he got results. His publishing record is prolific and he joined AIDS
activists who were successful in dramatically expediting new drug approvals
at the Food and Drug Administration.
That track record only makes Kramer's present dilemma more poignant: He
doesn't know how to attack the problem of the nation's chronic shortage of
organs for transplant. "I don't think people are aware of the problem,"
Kramer says. "And I don't know how you raise the awareness."
In the past year, the nation's shortage of organ donors has become a painful
issue for him. Faced with the prospect of liver failure due to hepatitis B,
Kramer joined the transplant waiting list at the University of Pittsburgh
Medical Center. When he got a liver in December, he knew he was lucky.
That's in part because HIV-positive patients like Kramer traditionally have
been excluded from transplants. He credits the transplantation chief at
UPMC, Dr. John Fung, for leading the way in giving people with HIV access to
transplants, a possibility now that AIDS medicines have extended patients'
But Kramer knew his luck went beyond finding Fung. Whether gay or straight,
young or old, black or white, all people in need of transplants --
particularly those with end-stage liver disease -- face the terrifying
possibility that they will die waiting for an organ. Since 1998, more than
21,000 people in the United States have died waiting.
One month after the transplant, Kramer, 66, is out of the hospital. He is
beginning to make excursions from his Shadyside apartment and has regained
his appetite. But the past few weeks have included some soul searching about
his health and the plight of others needing life-saving transplants.
"You think a lot of abstract, philosophical thoughts when you're lying awake
in the hospital," Kramer says. "You wonder, why was I spared? Why did I get
a liver when others didn't?"
Waiting in Pittsburgh
With the shutdown of the nation's airports following the terrorist attacks
on Sept. 11, Kramer decided to move to Pittsburgh in case an organ became
available. His partner, David Webster, and his medical advisor, Rodger
McFarlane, were preparing to help Kramer make the move in early November
when he got a surprise: There was a liver for him in Pittsburgh.
The frantic sprint that ensued is familiar to many recipients. In Kramer's
case, he and Webster had to rummage through packed boxes to cobble together
a travel kit before driving to a chartered plane in Connecticut. McFarlane,
being on the wrong side of Manhattan during rush hour, ended up driving to
New Jersey and catching a flight to Connecticut.
They made it to the UPMC Presbyterian only to learn several hours later that
the liver wouldn't work.
"It was really like hitting a brick wall," Webster recalls.
Kramer checked into a hotel here while Webster and McFarlane returned to New
York and brought back furnishings for a two-bedroom apartment they rented in
Shadyside. The idea was to give Kramer a comfortable place here to work on a
novel that he hopes will provide a definitive statement about the history of
All along, though, there was an understanding.
"Larry said, 'Whatever you do, don't let me die in Pittsburgh,' " McFarlane
says. "I said, 'Don't worry, sugar. I'll keep the ventilator turned on long
enough to fly you to St. Bart's or East Hampton -- someplace with a
sufficiently chic dateline for your obit.' "
But the three men quickly grew fond of their adopted home.
They joined the Jewish Community Center in Squirrel Hill. They enjoyed meals
in the Strip District at Lidia's, another New York transplant. The city's
museums and the design of local churches and synagogues were of particular
interest to Webster, who is an architect.
For Kramer, the view of church spires from his bedroom window reminded him
of London. "This city is a big secret -- it's just a lovely town.".
Kramer's liver finally arrived on Dec. 21. The operation lasted more than
half a day and he was incoherent immediately after the surgery. But within
10 days, Kramer was out of the hospital and back at his Shadyside home.
His relatively quick exit from the hospital and recovery seem in keeping
with the combative nature Kramer displayed through years of activism. But
the man walking through UPMC's Falk Clinic one day last week, dressed in a
purple turtleneck, overalls and a cardigan, seemed almost too mild to be
Jack-hammering coughs punctuated his soft speech. When McFarlane hatched a
scheme to take an educational poster from the hospital, Kramer cautioned "I
don't want to cause any trouble." He spoke lovingly of reassuring hugs from
doctors and nurses.
As a technician drew blood to test his liver function, Kramer struck up a
conversation with Dennis Perry, an Oil City resident who underwent a liver
transplant last January. Looking fit and full of life, Perry said he's never
"Boy, what an up," Kramer said of the encounter. "That's how I want to be."
At the end of Kramer's check-up, Fung positively stated: "Every week we see
him, he's making progress."
The ordeal of recovery
But progress hasn't come easily.
Organ transplant surgery is a blow to anyone's system. And the support of
McFarlane and Webster has been so important that Kramer wonders how people
with less help manage the recovery, with its rigorous schedule of doctor
visits, physical therapy and medicines.
"There is no question that the life you once lived is over. Now you're
living a new life with a lot of limitations, new rules," he says. "You try
not to think about the possibility that the liver's not going to last very
long. ... On the other hand, you have to think about how amazing it is that
they can do all this."
Before Kramer, the University of Pittsburgh had performed 10 liver
transplants in HIV-positive people since 1997. Eight are still living. Pitt
is one of 10 centers participating in a National Institutes of Health-funded
trial to determine the safety and effectiveness of liver and kidney
transplantation in patients with HIV infection.
"You really have to want to live a lot," he says. "Everybody says they want
to live, but the question is, how much of an ordeal are you willing to go
through to live?"
Kramer doesn't consider himself a religious person, but the transplant
experience has made him wonder if some protective presence isn't keeping him
going so he can finish his book.
He also has a new fight to wage in promoting organ donation. For now, Kramer
is a student of the issue, quizzing UPMC officials about the history of
organ allocation fights that have divided the transplant community for
years. He wants to understand how Spain, which has presumed consent to organ
recovery, has organ donation rates far beyond the U.S. standard (33.6 donors
per million people in Spain vs. almost 22 donors per million here). In
Spain, doctors generally don't have to get family approval before recovering
organs from a suitable donor.
Kramer doesn't have answers yet, but thinks the issue will require an
approach different from the one he has used in the past.
"It should be as non-controversial as possible."