Treatment Issues - October 2002 www.gmhc.org
My New Liver
by Larry Kramer
It is very, very hard to obtain an organ transplant in the United States. First,
there are so few organs available. Second, it is hard to locate a transplant
center willing to do coinfecteds - that's what they call you when you have a
virus like HIV with hep B or C. Third, if and when they accept you, you have to
wait in line. Depending on which part of the country you are applying from, and
which medical center, it takes varying amounts of waiting time. It never happens
quickly. There is far too much red tape and
bureaucracy for that. Fourth, and perhaps first, you have to do an awful lot of
investigation, research, phoning, faxing, e-mailing, pestering, even (how shall
I put it?) raising your voice (politely, of course) to accomplish any of this.
Patient empowerment takes on new meaning. You have to become a very fervent
activist, for yourself. If you aren't feeling so hot then you need someone with
persistent and unflagging energy to do it for you. You need such a person even
if you are feeling great. A transplant is something you simply
cannot enter into on your own. In fact, no transplant center will accept you if
you cannot show that your support system is visible and strong.
But if you know you are going to die if you don't get a new organ, as was my
case, you'd be surprised what a motivation this can be. I was given six months
and was down to the wire when I finally got the call. At 67 I am the
oldest person thus far transplanted with a new liver. My surgeon says in all
seriousness that you are as old as your liver. I now have the liver of a 45-
year-old man. Each day I feel vital and vibrant. I have no side effects. My
hepatitis B appears to be gone from my body. And I truly feel like I am 45
again. Everything I went through was worth it, tremendously so.
You must investigate the half-dozen or so medical centers (the number is
growing) that will take us. You must never stop your efforts to a) make a
transplant surgeon evaluate you and b) get one to accept you. Many people apply
to several different centers, but that can be very expensive. There are a lot of
evaluation testing costs you must bear before you can be officially accepted,
and your insurance, if you have any, picks these up only if and when you are
accepted for transplant. I was lucky. There happened to be a spurt of interest
in transplanting coinfecteds when I applied. It helps to be a scientific
curiosity. I believe I was the 22nd coinfected to be transplanted. The NIH is
currently preparing a research protocol to study transplants for conifecteds;
one of these days it will be approved and you might qualify for that.
When you finally find someone willing to accept you, you have to figure out how
to pay for your transplant. No medical center will take you unless you can prove
up front that you can pay. Not long ago if you were coinfected and
looking for a new liver, you would have been turned down by your insurance
company because saving your life was considered experimental. That's changed
because of heroic surgeons like John Fung at the University of Pittsburgh
Medical Center who knew better and proved it and confronted the insurers
himself. Still, insurance companies usually have to be challenged if they turn
you down, which on the first go-round they usually always automatically
do, hoping you will not appeal. Medicare rejected me the first time but we
appealed and in one day they had reversed their decision. Empire Blue Cross, my
secondary insurer, accepted me immediately.
My liver transplant has cost Medicare, so far, over $500,000 and Empire Blue
Cross, so far, over $100,000 for the continuing medications I must take,
including a monthly pop of some $10,000 for something called Hepatitis B
Immune Globulin, which I believe I must receive for the rest of my life. And you
need to get your blood tested every few weeks. That costs a lot too.
So we are not talking about an easy or inexpensive ride here. The easiest part,
believe it or not, was the transplant itself. I wasn't in any pain, ever. The
recuperation period is long; getting your wind and motor abilities back can
require many months of physical rehab and taking it easy. You must have
patience, which I don't. Months of not doing anything can verge on the
depressing. And if you don't live near a transplant center, you may have to move
close by for the months of the whole process. My lover and care partner
(two different people, and I couldn't have got through the process without
either one of them) lived with me in Pittsburgh for many months. I needed the
love of my partner, David Webster, every single minute. Boy did I need it. This
is lonely and cosmically metaphysical stuff to live through. (One day they tell
you you're going to die, and then suddenly you don't.) Hugs and kisses and
smiles and homemade food and constant gentle urgings that "you
can do it" sure help you get better faster. And I was not an easy patient. I
know that. And I needed the bossy efficiency of my very own Nurse Ratchett,
Rodger McFarlane, who had every secretary, nurse, technician, and doctor at
Presbyterian Hospital extra-attentive to his patient's case.
I was additionally lucky because I was able to meet the criteria for acceptance
last year. I don't think I would have qualified under new guidel ines, called
MELD (Model for End Stage Liver Disease), which came into effect at the
beginning of this year. The guidelines were developed by the Mayo Clinic, and
consciously or unconsciously, MELD criteria appear to be blatantly
discriminatory against coinfecteds. As I understand them, and very little about
the current or past organ allocation system is understandable
(even by the doctors who get the organs), the abnormal blood markers they look
for to be considered for acceptance are not ones that people with HIV typically
have out of whack. For instance, my PTT, bilirubin, and creatinine were not
greatly elevated. But I was still dying and my liver was still conking out. Yes,
you say "go figure" a lot in this whole process. And figure you do or else you
die.
Alas, most people in need of new organs don't make it. My memory is filled with
haunting images of desperately sick people in the UPMC clinic waiting room
hoping for a chance to grab an arriving surgeon's arm and literally beg
him or her for a liver. And of the stories of uninsured recipients telling me
how everyone in their entire family or indeed community or indeed town had sold
everything they could to pay for their chance at life.
It shouldn't be like this, of course. We know all that. It is not right to have
a system that excludes most of the people who desperately need its services.
Yes, I know that I have been very, very lucky. I can shout "Persistence!" to the
world but all activists have learned the hard way: we don't get anything without
a terrible fight. If we want to live, we must fight like hell. And the fighting
must never stop.
Larry Kramer co-founded Gay Men's Health Crisis and founded ACT UP
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