AmFAR Organizes Think Tank on Liver Transplantation in HIV-Positive Individuals

By Larry Kramer

Something very important was born on January 10 and 11, 2003. Something exceptionally important and exciting appeared as if from out of nowhere and sprang so quickly to life that I think those of us who where fortunate enough to be there didn't really assess what we were giving birth to until we had to leave each other and go home and we didn't want to.

The longer we were with each other the more we talked and talked and asked questions and traded insights, and, well, turned each other on. People were still talking with excitement as they rushed for subways, taxis, and planes. I have rarely been in a room with so many smart and committed people and watched them visibly became overcome with the sheer excitement of at last having others to talk to about the same problems they have had to live with for the most part on their own.

It was democracy at its best, it was science at its best, it was research at its best, it was medicine at its best, it was humanity at its best.

How did the American Foundation for AIDS Research (AmFAR) get all these experts together so quickly, from all over the world? Jeff Smith and Dr. Mathilde Krim, you are to be congratulated.

The issue of liver transplantation in the HIV/HBV/HCV-infected populations is the next enormously challenging tragedy of HIV/AIDS. For those of you who can remember 1981 and knowing something was about to go hideously wrong unless it could be righted, and no one was listening, NO ONE WAS LISTENING! Well, today is just like that with the issue of transplantation in the plagued populations.

Hepatitis C is already a hideous worldwide plague for which there is yet no satisfactory treatment. Hepatitis B, well there are fortunately now medicines that are useful for controlling hepatitis B. And of course we are now blessed with many acceptable treatments for HIV.

That so many of us are now living longer lives because of these treatments is remarkably wonderful; but we overlook the fact now more and more being seen that the longer we live the more our vital organs are going to give out and need replacement or we die. Nowhere is this more obvious than with the liver, which is home base for almost all meds and chemos, the strong potent stuff that keeps us going at the same time as it potentially slowly is destroyed by the very stuff that's saving us.

Something incredible has been discovered in these past several years. Much to everyone's surprise, livers can be successfully transplanted into people with hiv and one or both of the hepatitises. It requires taking yet additional harsh meds, but it works!. There have been about 60 transplants done and the results are astoundingly positive, in fact on a par with the results of transplanting people who are not infected with HIV or hepatitis.

The enormous population of co-infected individuals in America and overseas is for the most part unaware or in denial about what awaits them as they live longer. They are unaware that a great wave of activism must evolve for their lives to continue with health, just as such a great wave of activism was required, AND ACHIEVED, to acquire all the HIV meds that now save our lives.

There are few medical centers that yet perform this operation. There are too many surgeons who will not perform this operation. But there are more and more of each as month follows month and one successful transplantation follows another. Insurance companies can no longer maintain this procedure to be "experimental." Slowly inroads are being made and they are agreeing to honor their contracts to care for us.

In the AmFAR office at the foot of Manhattan, overlooking the New York harbor, this past weekend were a number of the world's leading players in this new and exciting drama of saving lives. The primary medical centers on the front line of this cutting-edge stuff have been and continue to be the University of Pittsburgh Medical Center, the University of Miami, the University of California at San Francisco, and hospitals in Madrid, London, and Paris. Each was represented by someone extraordinary.

There were also representatives from the University of Pennsylvania, Mass. General, NIH, University of Cincinnati. Presentations were made by almost everyone to convey the nature of their programs, their current thinking, their problems, their pressing questions on what needed to be known, which for all its success is still a great amount. Listening to the batting back and forth of question and answer across the long table and around the excited room was electrifying.

Would that we had been able to work together so effectively in all those long early years of aids! I remember a hateful meeting early on at NIH where all the leading doctors from around the country sat around a similar table, each so constipated with unvoiced questions that each should have burst, and they were all afraid and unable to talk with each other, even though each knew that in this room and around this table was a person who had information and experience that could help him or her. God, how naïve and frightened of each other and the system we all then were!

Well, such was not the case in AmFAR's offices on January 10-11. In fact I think that everyone who left on Saturday was wondering how soon they could all get back together again! Everyone spoke of "our next meeting" as if it were to be a very fact. We must invite other centers and personnel performing or considering this procedure to our next meeting was heard more than once.

We must quickly formulate a method of exchanging information on the success or failure of all the treatments we are using and considering was also heard. No more a deferring to those exercises in denial and delay of yesteryear, the controlled clinical trial. We have learned most of our lessons about those. There simply is not time and we have learned to trust what we learn daily in our "on-the-job training." Sixty transplants already achieved is a clinical trial in itself and we have learned from them much of what will take us to tomorrow.

No, what was heard over and over was: get me the organ, get me the needy patient, and get me the insurance company approval. These are the stumbling blocks. And they are huge ones. Much time was devoted to the issue of the tragic shortage of useable organs in America and how to improve this plight. For some of us the notion of Presumed Consent, in use abroad, has been a Holy Grail to be achieved. Presumed Consent means that every citizen of a country is deemed a donor unless he or she has opted out in advance.

This is the reverse of America, where we sign the back of our drivers' licenses if we are willing, a system that is proving to be an abject failure as more and more organs are needed minute by minute. Spain has always been held up as the country most successful with donations from Presumed Consent. But we learned something at this conference we had not wanted to learn. The number of donated organs achieved by Presumed Consent abroad, even in Spain, is not that much more than we achieve here.

No, what we learned was that the most effective way of increasing organ donation is already in operation in Pittsburgh and Miami, and indeed in Spain. This entails the placement of full-time coordinators in every hospital with a responsibility to monitor the patients in residence for possible donors.

When the patient is seen to be failing the issue of family or next-of-kin consent can be addressed before the demise. When the patient dies and consent is not in hand than valuable minutes and hours are lost. There is only so much time an organ has to breathe before it is no use.

In other words, the doctors must be taught, as Miami's Dr. Andreas Tzakis so deftly put it, "to hustle our own organs." The doctor must become in essence the activist. These are not the days of aids when there was a huge living activist population so frightened of dying that they would perform miraculous heroics. No, those activists are dead. That population is gone.

The refinement of this system of what is called Routine Referral will no doubt be on the agenda of our next assembling.

So will a method of quickly transferring data on the effectiveness of the various treatments and dosages needed to prevent organ rejection after transplantation. There is not much time to spare when a treatment is not working.

So will some sort of register for patients requiring transplantation, so that people across the country have possible access to organs, to centers, to information, far from home, which is certainly not the case now.

Indeed the whole question of organ allocation, under the supervision of an overwhelmingly swamped and ineffective quasi-governmental bureaucracy known as UNOS, received a good deal of criticism, along with harsh words about the growing realization that the "new" MELD criteria for acceptance into a transplantation program can actually be discriminatory against co-infected patients.

There is a growing realization that how UNOS works, how organs are allocated, is inexplicable and incomprehensible to just about everyone who comes up against it, including the very doctors who administer it.

So there is much work to be done, exciting work, possible work.

One can only be filled with enormous gratitude to AmFAR for assuming the responsibility for summoning this conference, and for the commitment that it and its founder, the amazing Dr. Mathilde Krim, are prepared to make for "owning" this issue and the continuation of this invaluable gathering which must be allowed to continue with regularity.

Sixty transplants today. How many tomorrow?

For the record, below is a list of those in attendance, summoned by Jeff Smith, AmFAR's Director of Clinical Research. I believe that all of us on this list know that we were in on the birth of something exciting and valuable and potentially enormously life-saving, and that we cannot wait to meet again.

Meeting Attendees

01/17/03