Signs he may yet acknowledge his own historic oversight
Larry Kramer has noted via Peter Duesberg that we have been unfair to him in the preceding posts A confused Larry Kramer asks Peter Duesberg to explain his own case,Larry Kramer billed $19,000 annually for drugs “I never took”.
We are alarmed to hear this, and hurry to try to make amends for the unfairness he can point out. We have no special desire to make Larry unhappy, since like many people we find his public persona charming for its warmth, openness, vulnerability, expressiveness, idealism and community spirit, not to mention his urging restraint in the baser pleasures.
Nor do we severely blame him for being misinformed and misleading others in this great issue, since virtually everyone else of influence is in the same boat. The AIDS danger is really the HIV?AIDS meme, which has now infected billions.
Why Larry is unique, so far, in this debate
The prime responsibility for the almost universal misapprehension among the political leaders of the world, that they don’t need to be aware of the Duesberg critique of HIV?AIDS because there is nothing in it, belongs to those who have forcibly peddled bad science so authoritatively for twenty years to people high and low who had no easy means of checking it.
Moreover, it is clear from Larry’s initial concerned reaction to Celia’s article in Harper’s and now his letter to that magazine, printed in copies of the May issue reaching subscribers last weekend and on the newstands now, that he is openminded to the whole idea that there may be something seriously wrong with the HIV?AIDS hypothesis, now that people he respects have raised the issue so convincingly.
We blame Larry only for a mistake which the whole world has made, which is not listening well enough to people of standing and integrity who warned him repeatedly that the science of HIV?AIDS was an empty box, and for assuming that all modern scientists and medical men and women are in some sense godlike creatures who are above error, let alone the mortal sin of sacrificing human lives to maintaining their career paradigm.
But even for his blind faith in scientists and doctors we don’t blame him overmuch, because we imagine that like everyone else whose brain is infested with the AIDS meme he must fundamentally be in terror of what is happening, and naturally cling to the only saviors he sees, that is to say, the health authorities, led by friendly, super bureaucrat and global bug buster Tony Fauci, the best dressed man at the NIH.
As Peter Doshi demonstrated in the April issue of Harpers, the art of raising money from the public by terrorizing us with new bugs such as the flu virus is considered an official strategic weapon in the government health game at the CDC and a skill worth instructing in lectures.
In a predicament where your very life is threatened by a lurking invisible microbe, as Larry has long believed, ideas rule emotions and vice versa, and in a career artist, whose stock in trade is the emotions created by ideas, this symbiosis is almost a professional qualification.
In other words, there are few people more likely to come down with the brain infection of the AIDS meme, one of the most powerfully insidious and infectious memes on the planet, than a poet and playwright.
So we actually congratulate him for showing an openminded willingness now to consider a different point of view, which is an attitude shown by no other leading figure in this arena so far. If anything does happen politically to move this mountain of a paradigm, Larry Kramer will be able to take some of the credit, it is clear.
A correction in response to Larry Kramer
He has three complaints. First, the publishing of his note was an invasion of privacy. Secondly, Tony Fauci was not the facilitator of his liver transplant. Thirdly, he never had Hepatitis C.
Our answers in short are (a) if he thought the email was private, we apologise, but the material we reproduced was only the same as he has often said in public, even as testimony to the FDA. Duesberg did not reveal the truly personal mail he sent him, in further correspondence, merely the public level intial query; (b) we certainly accept his correction that Tony Fauci was helpful in the initial treatment of his liver disease but didn’t arrange his transplant in any way, and we apologize for saying that, and have corrected it; and finally (c) we never did say that he had hepatitis C, we just mentioned it as one of the possibilities which might have caused liver damage when he said he never took drugs, which we took to mean all drugs, though he may have meant simply recreational ones. Larry Kramer does not have hepatitis C.
On the privacy issue, we did reproduce what Larry wrote to Duesberg initially only because it was purely public material that he had mentioned many other places, including testimony to the FDA. But since we feel that email privacy is an increasingly knotty issue these days, we discuss it further here, but hide the section because it is not directly relevant to the blog theme, which is the appalling neglect of the scientific literature by virtually everybody in HIV?AIDS, from scientists and doctors to reporters, activists and patients.
Larry writes that he thought his email to Duesberg was a private exchange. This complaint is one to which we are sensitive. We don’t much like the habit people have of too freely copying our email to people we have never even met, and we were brought up on the principle that gentlemen do not read other’s private correspondence. We certainly wouldn’t normally want to make public anything written on the firm understanding of privacy. This is especially true in this case, since Larry Kramer was finally reaching out to Duesberg to learn more, and this may be one of the more important events in the history of HIV?AIDS.
In this case, however, nothing was said in the email about confidentiality, and Duesberg forwarded it to us without any proviso. As it happens we emailed him back anyway regarding the privacy issue, saying we assumed that his forwarding the email to us meant that we could quote from it, unless it mentioned something personally compromising or embarrassing.
We never got a reply, so perhaps we shouldn’t have gone ahead. But it definitely seemed a publicly quotable exchange in tone and content, and Larry Kramer’s experience in dealing with HIV positivity is an extremely important case that he has often testified on in public.
Here is what Larry said again, for reference. This is all we quoted from him:
would you explain something to me. i never used poppers. i never took drugs. i never had any chemo. i do not suffer and never have from malnutrition. i did not start taking anti-hiv drugs until 2001 when i got my liver transplant and they were required. i tested positive in 1987. you say these are the causes of hiv infection. i am hiv infected. i have and had many friends in the same boat, who simply do not fall into your criteria.
In other words, a set of facts about his own case, and that of many friends, which he asked Duesberg to explain in the light of his own view.
Most of this information appears to be wrong, however, as we discovered when checking on the Web, where it is contradicted by other things Larry has said in the past. This was the point of our post ie that Larry seemed to have an unreliable memory, and in general seemed to be too casual about the scientific and medical facts of the matter, which he was asking Duesberg to comment on, and it seemed to imply that he had left this responsibility to his doctors, mastering only the rationale of the drugs they give him.
In other words, it seemed to be another sign of how he has partly abdicated the leadership of his community in HIV?AIDS to conventional doctors and scientists, and ignored the many efforts made to warn him that their authority was questionable, and to get him to look at the other side of HIV?AIDS, talk to Duesberg and read his papers.
Later, however, we found other testimony which showed he has paid a lot of attention to the topic – everything but what Duesberg had to offer. Indeed Kramer seems to have set a very good example in thinking and checking for himself in guarding against the toxicity of drugs, even without believing they are the chief cause of HIV?AIDS among gays, as Duesberg has long insisted.
In making this point we thought it best to quote his own words, and now he asserts that they were private, though without making a big issue out of it. and without specifying what information he considered private. Well, we apologize, though in reviewing it again, we have to say that we still don’t think it deserves that status. After all, the contact was initiated by Larry, in a dispute of public concern, with a scientist who is the prime source of information on the other side of the position Larry has long taken himelf. Larry called upon Duesberg to inform him of his reasoning, and he presented him with the facts of his own case, which he has already vouchsafed, several times in public. These facts proved to conflict with his own previous statements on record.
So we don’t think it is private to the extent it deserves locking away from public inspection. In fact, the opposite. Of course what Larry is really saying is that he didn’t expect it to be reviewed publicly and critically. But this issue is a matter of life and death for many people around the world, including as it happens Larry Kramer, and it is important that it not be muddied by errors in email by between the main figures involved.
The real issue is whether Peter Duesberg breached Larry Kramer’s confidence in revealing the email query to us, and as we have noted, he didn’t. The follow up exchange which was more personal to Larry Kramer he did not forward to us. This is important, because we would not want to give the impression that any email sent to Duesberg on a private basis is liable to be exposed and critiqued in public. There is no reason to think this.
Personally we think that any correspondence in email which is not copied to other by the sender should be kept private unless the sender OKs its distribution. Anything copied to a list is not private. No one is going to write freely if every word they say is going to be going to be posted on a blog, for sure, given the illbred and irrstional responses the Web often generates.
That said, however, we recognize that the new Web world is sweeping away these niceties like beach houses in a tsunami. Recent news stories show that, for all practical purposes, it is vain to assume privacy of anything at all in email or on the Web. Even if a strong notice to that effect is posted at the top, PRIVATE AND CONFIDENTIAL – NOT TO BE COPIED, it is bound sooner or later to leak, either through someone pressing the wrong key or because it is a matter of strong group interest. Secrets are as badly kept on the Web as in live gossip, or worse. Since Email and Web records are permanent, stored in computers all over for ever, it is folly to write anything which you wish to disown later.Larry Kramer billed $19,000 annually for drugs “I never took”
But there is something else at work in this case. We don’t think it should be overlooked that Larry is writing not to an established friend but to a man that he has helped, unwittingly or not, to torment for twenty years. Unfortunately Peter Duesberg is not someone he has supported in that scientist’s Olympic, self sacrificial effort to bring truth and light to this life and death issue. Instead, he has compounded Duesberg’s experience of professional ostracism, which, the scientist has said, has been the most painful penalty exacted for his scientific integrity in saying publicly what he reasons to be true.
Duesberg’s difficult and morally and scientifically outrageous public rejection, which has raised a huge obstacle to his own research, has been magnified by the unresponsiveness of Larry Kramer. As political leader, he could have acted earlier to change everything, simply by listening to the Duesberg side at all.
Over the years he has instead chosen to pal around with Dr Fauci and say that any questioning the science of HIV?AIDS was “beyond any intelligent comprehension”, as quoted in our last post, referring to ACT-UP San Francisco’s unusually disruptive activism in support of questioning HIV theory.
It is a tragedy of HIV?AIDS that Larry, the great questioner of officials and drug companies, did not as far as we know show any serious move in Duesberg’s direction earlier, any serious interest over two decades in attentively examining what Duesberg has said about HIV?AIDS. Instead, in odd contrast to his alertness to the possibility of HIV drugs ruining his health, we have to note his continuing neglect of truthseeking in a life or death issue, where even though his own life is at stake he has played a leading role in denying re-examination of the central premise. But we salute his reaching out now to Duesberg, and his new openmindedness about the problems with HIV?AIDS science.
Dr Fauci did not arrange for Larry to jump the liver queue
Larry primarily writes to say that we have mistakenly written that Tony Fauci helped him win a liver transplant, and this is not the case. We accept that completely. However, the rapprochement between the two is legendary in the field, an unfortunate one if it has kept Larry from evaluating what Duesberg had to say without prejudice, which seems likely.
“You have to remember that for the first six years, no one paid much attention to AIDS in Washington,” said Larry Kramer, an ACT UP co-founder and playwright, who once called Fauci a “monster” and an “incompetent idiot.”Now 20 years into the AIDS battle, Fauci has the grudging respect of Kramer and other activists, a testament to both his scientific and political skills.
Fauci was able to turn them around by seeking their input. When protesters demonstrated at his office at the National Institutes of Health (NIH) in Bethesda, Maryland, in the late 1980s, he invited them up to talk. “If you got beyond the theatrics and listened to what they were saying, a lot of what they were saying made sense,” Fauci said.
CNN 2001
A warrior in the AIDS fight never rests
(CNN) — During the early years of the AIDS scourge, activists took to the streets, protesting what they felt was the U.S. government’s inaction in the face of the deadly epidemic.
Among the targets of gay health groups and the AIDS Coalition to Unleash Power (ACT UP) was Dr. Anthony Fauci, the nation’s lead scientist in the AIDS/HIV fight. These groups frequently called Fauci and other researchers “murderers” for responding too slowly and even burned effigies of them.
“You have to remember that for the first six years, no one paid much attention to AIDS in Washington,” said Larry Kramer, an ACT UP co-founder and playwright, who once called Fauci a “monster” and an “incompetent idiot.”
Now 20 years into the AIDS battle, Fauci has the grudging respect of Kramer and other activists, a testament to both his scientific and political skills.
Fauci was able to turn them around by seeking their input. When protesters demonstrated at his office at the National Institutes of Health (NIH) in Bethesda, Maryland, in the late 1980s, he invited them up to talk. “If you got beyond the theatrics and listened to what they were saying, a lot of what they were saying made sense,” Fauci said.
Still, it was difficult for his family not to take the attacks personally, admits his wife, Christine Grady. “I thought they were unfair because I knew how hard he worked and how dedicated he was,” said Grady, a former nurse and a bioethicist who also works at the NIH. “And some of the accusations were: ‘He doesn’t care about this; he’s not doing enough; he’s a killer.’ ”
Fauci’s strategy of bringing advocates into the decision-making process worked, Kramer said, and won him the support of AIDS activists. “Letting the patients in, so to speak, was one of the smartest things anyone could have done, or else there would have been revolution, havoc,” Kramer said.
Several months after Fauci first met with protesters, he unexpectedly ran into Kramer at an AIDS conference in Montreal, Canada, in 1989, and the two men began to discuss their differences. “We had a nice talk, like two old warriors,” Kramer said, laughing.
These discussions eventually led the NIH to begin a plan to speed up the introduction of new AIDS treatments. The practice, called “parallel track,” allows AIDS patients — who have exhausted all other limited treatments — unprecedented access to experimental medications not yet approved by the U.S. Food and Drug Administration.
Reflecting back on the evolution of their relationship, Kramer said, “We’ve been in this together for over 20 years, and we’ve both aged 20 years and matured and grown to respect each other’s positions a lot more, which have changed a lot.”
Preparing for the epidemic
As director of the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) since 1984, Fauci has been at the forefront in the national effort to conquer AIDS. Under his leadership, the NIAID has grown from the sixth-largest to the third-largest NIH institute, with a $2.4 billion annual budget.
“The all-around multidimensional component of his work in the disease is not surpassed by anyone,” said Dr. Robert Gallo, another well-known AIDS researcher and co-discoverer of HIV.
Hard work, organizational skills and discipline have served Fauci well in his 33-year career. He prides himself on excellence and gives credit to the Jesuits who taught him in his youth.
“I often talk about the fact that I’ve been trained for many years by the Jesuits,” Fauci said. “And they’re very, very well-recognized for the kinds of qualities they try to impart upon the people they teach — you know, things about economy of expression, precision of thought, knowing what you’re doing, what is the question you’re asking.”
Anthony Stephen Fauci was born December 24, 1940, in Brooklyn, New York. He grew up in the Bensonhurt section of the borough, where his father, Stephen, was a pharmacist and his mother, Eugenia, a homemaker. As a teen, Fauci commuted to Manhattan, where he attended Regis High School, excelling academically and playing on the basketball team.
He won a full scholarship to the College of the Holy Cross in Worcester, Massachusetts, and majored in Greek, Latin and philosophy, earning a bachelor’s degree in 1962.
He received his medical degree from Cornell University Medical College in Ithaca, New York, in 1966 and then completed an internship and residency at the New York Hospital-Cornell Medical Center in New York City.
In 1968, he joined the National Institutes of Health, the focal point of medical research in the United States, as a clinical associate in the Laboratory of Clinical Investigation at the NIAID.
His work was excellent preparation for his eventual role in the AIDS fight. He rose through the ranks, studying the effects of infectious diseases on the regulation of the human immune system. By 1980, he had become chief of the NIAID’s Laboratory of Immunoregulation, a position he still holds.
He helped pioneer therapies for formerly fatal diseases such as Wegener’s granulomatosis, which is characterized by inflammation of blood vessel walls; polyarteritis nodosa, an autoimmune illness that affects arteries; and lymphomatoid granulomatosis, which causes the deterioration of the veins and arteries.
Having ‘the absolutely perfect job’
However, Fauci found his calling in June 1981 after reading an article in the CDC’s Morbidity and Mortality Weekly Report on cases of a strange infectious disease affecting gay men. The report would change his life. By the year’s end, he was turning his lab into a research center for the disease that would become known as AIDS.
“Every once in a while, one is privileged to meet somebody who you know is in the absolutely perfect job at the time for his particular skills,” said C. Everett Koop, U.S. surgeon general from 1981 to 1989.
Fauci and his colleagues were among the first to recognize that the body’s own activated immune system is the engine that drives HIV, the virus that causes AIDS.
But his most notable contribution to scientific literature appeared in the journal Nature in 1993, when he reported that HIV infection is never latent in the body but always lurking in the lymph nodes.
“If you look at the lymph node of HIV-infected individuals, those people have virus that’s alive, well and replicating even during the period of what we were calling the clinically latent period,” Fauci said.
The finding was significant, Gallo said, because it meant “there’s no time to relax.”
“I think it unified thinking that therapy should be given throughout the period, even when people are feeling well,” Gallo said. “And it pointed to the lymph nodes as a terrific site of virus replication and focused some research direction toward the tissue as opposed to simply looking at the blood.”
Fauci’s contributions have helped to change the course of HIV/AIDS research. As a result, scientists no longer think in terms of eradicating the virus but instead focus on the long-term control of HIV. And research continues on a way to block transmission of the virus via a vaccine.
In addition to his research and administrative roles, the physician-scientist also displays the skills of a savvy politician. Fauci regularly testifies before Congress seeking funding for the NIAID and educating lawmakers about the HIV/AIDS epidemic.
“I’ve never seen a time,” said U.S. Rep. Nancy Pelosi, D-California, a member of the House Appropriations Committee, “when Dr. Fauci came before a committee of Congress where he has not left the panel better informed and impressed by his credentials and his commitment to finding an end to this terrible scourge.”
Taking time out for family
A medical doctor by training, Fauci still makes rounds, seeing patients at least once a week at the NIH’s Warren Magnuson Clinical Center. He also is the main editor of Harrison’s Principles of Internal Medicine, a widely read medical textbook. And he is credited as the author, co-author or editor of more than 1,000 scientific articles.
An admitted workaholic, he arrives at the office before 7 a.m. Fauci frequently puts in an 80-hour week, including working on Saturdays. His myriad professional duties have cut in to the amount of time he spends with his family.
“I would not like to be his wife,” Kramer said, laughing. “A woman of great patience.”
Not surprisingly, he met his wife, Christine Grady, at the bedside of a patient. Able to speak Portuguese, Grady was the interpreter for an HIV patient from Brazil. She assured Fauci that the patient would follow the doctor’s strict orders to rest, but the patient actually said he was planning an outing to a Brazilian beach.
“A day or two later, Dr. Fauci came to me and said, ‘I’d like to see you in my office at the end of your shift,’ ” Grady recalled. “And I thought, ‘Oh my God, he knows what happened!’ ”
But Fauci didn’t reprimand her; instead, he asked her out on a date.
Now married for 16 years, the couple have three daughters, ranging in age from 15 to 9. Fauci picks the girls up from gymnastics in the evening when he leaves work, and the family eats dinner together at around 9:30 p.m.
“We’re ordinary people, trying to raise a family,” Fauci said, “and we happen to be caught up, both of us, professionally in one of the most historically significant epidemics in the history of mankind.”
At 60, Fauci shows no signs of slowing down.
“I think any other person might have contributed the service that he has done and then said, ‘OK, I burned out, now I’m moving on,’ ” Pelosi said. “But he seems to be growing — rather than growing tired of it.”
And his peers see a continued strong role for Fauci.
“He’s got more history yet to make, and he will,” Gallo said. “At this point in time, I certainly think he’s the greatest science administrator, combining both scientific leadership as well as science, that I have ever seen.”
But Fauci’s achievements don’t seem to faze him.
“It’s tough to get impressed with what you do,” he said, “when you’re in the middle of an engagement, a war, if you want to use that metaphor, in which this foe or enemy that you’re fighting is galloping uncontrolled throughout most of the world.”
How Tony came to Larry’s play attacking him, and how the two embraced in the lobby afterwards, makes a touching legend:
Fauci, meanwhile, has won round many of his critics in the activist community. His most complicated relationship has been with Larry Kramer, the writer who helped form protest groups ACT UP and Gay Men’s Health Crisis and who used to regularly call Fauci a “monster” and an “incompetent idiot”. In 1991 Kramer wrote a play called The Destiny of Me in which an Aids patient spends much of his time attacking his physician, a man called Anthony Della Vida – Anthony of Life. No prizes for guessing who he is based on. “The mystery isn’t why they don’t know anything, it’s why they don’t want to know anything,” the lead character shouts.Gamely, Fauci turned up to the premiere at the Lucille Lortel Theater in Greenwich Village. After the show, the two men met in the lobby and embraced. Kramer was overheard to say, “Will you still take care of me? Will you still be my doctor?” Fauci replied: “I will always take care of you Larry.”
That’s from this article, a good rundown of Tony’s comet like progress through the HIV?AIDS universe, where he was present at the creation.
(from Web page http://lists.essential.org/pipermail/ip-health/2003-May/004788.html)
[Ip-health] FT on Tony Fauci, SARS and AIDS
James Love james.love@cptech.org
Mon May 26 11:22:02 2003
This is a long and interesting article about Tony Fauci, but also about policy making in the US on AIDS, SARS and other important issues. It begins with a story about Karl Rove’s involvment in the $15 billion forAIDS. Also:
* When health secretary Tommy Thompson spoke at last summer’s UN Aids
conference in Barcelona, the stage was invaded by activists shouting the
slogan “Where is the 10 billion?” – a reference to the amount of money
experts say needs to be spent on Aids programmes in the developing world
each year. Later Fauci was called in by the White House and asked to help
come up with a programme for Aids in Africa that Bush could adopt.
* The night before the president’s State of the Union address in January,
he got a call from senior staff at White House to come and help them
prepare the text. Bush had adopted the most generous version of the plan
Fauci had proposed, which involves spending $15bn on Aids over the next
five years, including the use of generic copies of Aids drugs. The
legislation was passed last week.
http://news.ft.com/servlet/ContentServer?pagename=3DFT.com/StoryFT/FullStor=
y&c=3DStoryFT&cid=3D1051390236276&p=3D1012571727132
Can this man cure Sars?
By Geoff Dyer
Published: May 22 2003 12:42 | Last Updated: May 22 2003 12:42
Tony Fauci boards the Washington metro and scans his BlackBerry for
messages. He has come from a briefing with health secretary Tommy Thompson
about the Sars virus and is rushing back to his office to discuss an Aids
vaccine project with a colleague.
On the screen, there is an e-mail from the president’s closest adviser
Karl Rove. Fauci is writing an opinion piece for a Washington newspaper on
a plan the president announced recently to spend $15bn (=A39.2bn) on
combating Aids in Africa. Fauci helped to put the plan together and Rove
has returned his draft with some comments.
A day earlier Fauci was in the front row before an invited audience in the
East Room of the White House where President George W. Bush was appealing
to Congress to pass his Aids bill, which he says could save two million
lives. “I love Tony’s commitment to humans, to what’s best for mankind,”
said the president. “I’m glad you are here, Tony.”
Dr Anthony Fauci runs the infectious diseases department at the National
Institutes of Health (NIH), a government-funded research organisation that
this year will spend a mammoth $27bn on the work it does from its 300-acre
tree-lined campus in the Washington suburb of Bethesda. The campus is so
vast it has its own metro stop.
Since the 1980s both Republican and Democrat administrations have eagerly
sought his counsel. The reason is that infectious diseases frighten us,
both privately and on a mass scale, and politicians are not good at
dealing with that fear. They tend to try to sound positive, and are then
contradicted by fast-changing circumstances. Reliable information from a
trustworthy doctor, even if it is bad news, can have a balming effect.
“I am basically just a nerd,” says Fauci.
Nerd, or family doctor to the nation, Fauci is now manning the nation’s
defences against Sars. When it comes to Iraq, the Pentagon wheels out
Tommy Franks and when the economy is looking poorly, people hang on Alan
Greenspan’s every word. When there is a new health threat, it is Fauci who
is called on. And in the post-9/11 America, where fears about new bacteria
and viruses are ever-present, this short man has taken on an ever-larger
role.
Fauci is one of those rare people who routinely works a 16-hour day. Sars
has turned that into 20. “We are in the middle of a public health crisis
here and so I tend to get pulled in lots of different directions.”
Across the world in Beijing and Hong Kong, a World Health Organisation
team is grappling to contain the Sars crisis. Led by David Heymann, the
WHO official who was also one of the scientific pioneers in the early days
of Aids, the team has found that the virus does not seem to transfer quite
as quickly as it initially seemed. Swift public health steps have also
brought the pneumonia-like infection under control in other developing
countries with large populations, such as Vietnam. But, with a mortality
rate of around 15 per cent, it is highly dangerous. And if it were to
become entrenched in a society with a weak health system, such as the
western provinces of China, it could be devastating.
Fauci says he was worried by Sars as soon as it first came to light in
March. “The thing about infectious diseases is that most of the time they
are just a blip on the radar screen.” (In 1976, for instance, when more
than 200 legionnaires fell ill in hotels across Philadelphia, it was a
horrific event – but it didn’t spread.) “Then once in a while you get one
that looks really scary,” he says.
When he first heard about Sars, some experts were saying it might be a
form of “avian” flu, a disease that killed six people in Hong Kong in 1997
but was quickly brought under control. “But the people in Hong Kong, they
are real smart, and they insisted it was not avian flu,” says Fauci. “I
thought, oh my God, this is not just a blip on the radar.”
Just how scary is it? Last year 1.12m people died of malaria, disease
older than the bible. Aids, a relative newcomer, killed 2.86m. (These are
not the sort of statistics you round up or down to the first decimal
point.) As many as 500,000 people died from influenza, which was fewer
than the 745,000 who succumbed to measles, but many more than the 21,000
victims of dengue fever.
Sars has killed nearly 700. Yet Hong Kong and other parts of China have
been gripped by something approaching panic, Toronto has been placed
off-limits in the minds of many (even though the World Health Organisation
has lifted its travel advisory on the Canadian city) and the ailing
airline industry has been dealt another blow.
Over-reaction? Not from the public health point of view. Officials live in
constant fear of a repeat of the Spanish flu, an epidemic that in 1918
killed 20m people around the world in just one season. The early reports
of Sars out of Hong Kong raised a terrifying spectacle of rapid transfer.
After one of the first recorded victims stayed at the ninth floor of the
plush Metropole Hotel, 13 other guests fell ill, perhaps from having
touched the same door handles or elevator buttons. When another person
with Sars flew from Hong Kong to Beijing, several passengers were
infected. When there is a risk that such a virus might be transferred
easily by air, health officials say tough measures are essential.
The day I met Fauci, he received an anxious call from a Washington radio
station at 6.30am. They wanted to know about the risks of bringing Sars
patients to the NIH clinical centre for examination. Some disgruntled
staff had complained to a local paper about the decision. Fauci said that
all the necessary precautions were being taken to protect staff, including
new special face masks moulded to the individual’s face.
Afterwards, he pointed out that many years ago his wife Christine Grady,
who was a nurse at the NIH, continued to work with HIV patients while she
was pregnant with their first child – even though they were not sure then
how the disease spread. “And anyway, we are the National Institutes of
Health. This is what we do.”
The NIH pours billions of dollars every year into the basic medical
research that underpins new drugs. It has sponsored the work of 80 Nobel
prize winners and a large slice of the decoding of the human genome was
conducted around the corner from Fauci’s office on the seventh floor of
Building 31.
Fauci has been running the NIH’s institute for infectious diseases and
allergies since 1984. This makes him the central figure in the search for
treatments and vaccines for Sars. Many other researchers will be involved,
of course, in both the public and private sectors. The US Army’s
infectious diseases unit is currently screening existing drugs to see if
they might work, while a number of companies are discussing vaccine ideas.
But at the centre of the process is Fauci, pulling the strings and
allocating funds.
Fauci is the complete opposite of the scientist as engaging eccentric -
with a shock of unchecked hair and new insights scribbled on bits of paper
falling out of a white lab-coat. He is short and trim and has a firm
handshake. He wears glasses that give him a scholarly look, but he is
dressed in jacket and tightly knotted tie, which makes him look like a
Washington bureaucrat, especially beside his young researchers at NIH. He
is a meticulous man who carries a comb in his back pocket and tidies his
short-cropped hair between meetings he hurries to and from.
The grandson of a Sicilian immigrant, Fauci grew up in the working-class
Brooklyn neighbourhood of Bensonhurst. The family lived above his father’s
drugstore, where he ran errands from an early age. In his teens he
commuted to a Jesuit high school on Manhattan’s Upper East Side where he
was a top student and captained the basketball team. Before going to
medical school at Cornell he did a degree in Greek, Latin and philosophy
at another Catholic institution, College of the Holy Cross in Worcester,
Massachusetts.
Fauci likes to keep his 62-year-old body in shape and his head clear.
Every lunchtime – work permitting – he slips into his jogging gear and
trots the half mile to the bike path on Beach Drive in Bethesda where he
runs for an hour. Not that Fauci is a lunch-time only athlete. He and
Grady have completed a number of marathons. They met at the NIH 19 years
ago, when, having lived in Brazil for two years, Grady was called in to
translate for a Brazilian Aids patient. In his serious doctor’s tone,
Fauci told the man, who had a problem with his legs, to change the
dressings every day and to keep his legs constantly up. The man replied
that he was so sick of hospital he planned to spend all day on the beach
and to dance all night. Grady assessed the situation and translated for
Fauci: “He said he will do exactly as you said.”
Even by the standards of workaholic Washington, Fauci’s schedule is
demanding. As well as his political role, he is the one of the few heads
of the NIH’s 18 institutes to run his own research lab, where he does work
on the basic functioning of the immune system and the impact HIV has on
it. I am half his age, yet by midday in his company I was tired. Zeda
Rosenberg, who worked for him at NIH for seven years, describes how at 7am
each day they would meet for two hours to go through all the relevant
academic journals to keep track of the advances in Aids research. Fauci
himself has published 1,045 scientific papers. “He is just a very
dedicated man,” says Rosenberg.
On an average day Fauci is home by nine every night to have dinner with
his three teenage daughters at their Washington house just north of
Georgetown. Then he is usually working again until at least midnight,
catching up on the latest research, writing papers or working on the
revised edition of one of the most widely used medical textbooks he wrote.
Every Saturday and some Sundays are also taken up with work. He rarely
takes holidays anyway and has not managed one since September 11, 2001. He
likes to fish and occasionally goes to the movies but looks somewhat
perplexed when asked what he does for entertainment. “There are some
people who fit work in around having fun and then there are others who
like to work and have fun only occasionally,” he says.
Now Sars could deprive him of a break this year. He is blunT about the
challenges posed by the disease. Even if it is brought swiftly under
control, it could turn out to be seasonal, like flu, with another possible
outbreak this time next year. “None of the current therapies is working
very well at the moment,” he says. “Unlike bacterial infections, there are
not many therapies for viruses. There is not one for smallpox, or for West
Nile fever. There really are only a handful that work, such as for
hepatitis and herpes.” (Viruses are pieces of genetic material that infect
a cell and direct it to produce new viruses. Some are transferred in the
air, others by blood and some by sex. But when they infect an animal or a
human who is not immune they can quickly invade the cells of their host.)
There are few “Eureka” moments in medical research, dramatic discoveries
that quickly lead to new treatments. Instead, there is the hard graft of
chipping away at complex problems from many different angles, until
solutions appear, a process that is only just beginning with Sars. In the
case of Aids, for instance, after 20 years work, there is still no
vaccine. Fauci does not think a Sars vaccine will be ready for at least
two years, but he is quietly confident about the scientific chances of
getting one. “Unlike HIV, about 85 per cent of the people who are infected
with Sars actually recover. What that means is that the human body can
respond in a way that will eradicate the virus,” he says. “In HIV, there
are no instances of people spontaneously eliminating the virus from the
body.”
When Tony Fauci began his career as a researcher in infectious diseases in
1968, many scientists considered it to be yesterday’s field, an area where
the big problems had already been solved. With the development of
antibiotics from the 1940s, diseases such as diptheria and scarlet fever
went from life-threatening afflictions to treatable infections. Jonas
Salk’s vaccine had taken the dread fear out of polio and the tuberculosis
sanitoriums were being emptied. Euphoria governed medical science.
Researchers liked to think they were on the crest of a wave sweeping away
the threat from parasites, viruses and bacteria.
In 1967, William Stewart, the US Surgeon-General, captured the mood of
inevitable scientific progress harnessed to American power, around the
time of the launch of the Apollo space missions, when he testified that it
was “time to close the book on infectious diseases”. Scientists, he
suggested, should concentrate instead on chronic diseases such as cancer.
Fauci was planning to stay at the NIH for a couple of years before
returning to New York to be a physician, but even then he thought there
were still some interesting challenges in infectious diseases. And, as he
says about Stewart’s remarks 35 years later: “He could not possibly have
been more incorrect.”
Infectious diseases are back. For a start, the drugs do not work as well
as they once did. With increased and sometimes incorrect use, resistance
to antibiotics has grown, breathing new life into some old pests. In the
late 1980s, patients turned up in New York hospitals with new strains of
tuberculosis that did not respond to drugs. These later swept through
Russia in the 1990s.
On top of that there have been new and frightening diseases. In Zaire in
the mid-1970s, a man walked in from the jungle with a severe fever that
made him vomit black blood. He died shortly after. Within days, many of
the nuns who took him in had also fallen ill with Ebola, one of the most
easily transmissible viruses.
Viruses continue to jump from one species to another, including humans,
and the new host often has little immunity. Every year brings a different
strain of influenza, many of them originating in China. In 1999 and again
last year, several people in the US died from West Nile fever, a virus
indigenous to the Middle East which is transmitted by mosquito.
Microbes (a virus is one type of microbe, bacteria and fungi are others)
love chaotic economic development. Teeming new cities with poor sanitation
that lack strong health systems, rapid migrations of populations from
country to city, changing sexual habits, the breakdown in traditional
family structures – all these provide fertile territory for the spread of
new diseases. Foreign travel exacerbates the problem, quickly transferring
a virus from a small African village to a large, western city. The
microbes that caused the 1918 Spanish flu were transported around the
world by boat. Today, they would catch a flight.
And then there is HIV/Aids. In the slightly more than 20 years since the
human immunodeficiency virus was identified, more than 20 million people
have died. By 2010, the total number of infected people is expected to
reach 105 million, most of them in poor countries. It is the biggest
public health disaster since the Black Death in the 14th century.
Bookshops are full these days of grim warnings that the advances made in
the last century were no more than a truce in the battle and that
infectious diseases will come back with a vengeance. Richard Krause, a
predecessor of Fauci at the NIH, called his 1981 book on microbes The
Restless Tide – a reflection of the tug-of-war between science and
disease, the never-ending capacity of hostile microbes to renew
themselves.
This alarming view is not universally shared. Medical science still has
its utopian streak, these days in the form of genetics. The decoding of
the human genome has raised hopes of big advances in the understanding and
treatment of diseases. Some researchers talk of an era of “personalised
medicine”, with each patient walking around with a card that shows his or
her genetic make-up so that treatments can be tailored specially. “We will
look back on 1950-2050 as the greatest period of human intellectual
endeavour since the Renaissance,” says George Poste, who used to run
research at drugs company SmithKline Beecham.
For Fauci, these advances will generate some useful tools for the study of
infectious disease. Researchers were able, for instance, to pin down the
genetic make-up of the Sars virus within weeks of its appearance. However,
genetics technologies will not alter the capacity of infections to
reinvent themselves. “It is extremely unlikely that all of a sudden we are
going to discover a completely new cancer or arthritis,” he says. “But it
is possible all of a sudden to get hit by a new microbe.” Indeed, the
events of the last few years have been a form of vindication for
infectious disease specialists such as Fauci. “We will never be free of
emerging diseases,” he says. “I am not blowing smoke. Look at what has
just happened.”
At Least Once a Week Fauci still still does roundS in the NIH Clinical
Center, its on-site research hospital, to visit Aids patients who are
usually undergoing some form of experimental treatment. The junior doctors
who guide him along the ward are a little wary, for as well as being the
head of one of the NIH’s institutes he is the author of one of their
textbooks. He fires questions at them in a friendly but brisk manner. As
he has to run off to a meeting downtown, he asks them to be brief. “You
don’t need to tell me his heart rate. I mean if he has a heart rate of
170, you should tell me, but if it is 80 you don’t need to.”
It was the HIV/Aids epidemic that changed Fauci’s life. Shortly after he
first read in 1981 about a strange disease afflicting gay men in Los
Angeles, he shut down the research he had been conducting in his lab and
devoted it entirely to Aids. His mentors told him he was risking his
career and there were few resources made available by a hostile Reagan
administration. And for several years every patient he treated died.
In the early years, most of the victims of Aids in the US were gay men,
many of whom viewed the disease as a form of persecution. Fauci soon found
himself in the middle of a fierce battle. Colleagues at the NIH attacked
him for focusing too much on Aids and predicted that other important
diseases would be neglected. The growing band of highly-educated Aids
activists were outraged, however, at what they thought was government
indifference to the epidemic. And they picked a target for their anger:
Tony Fauci. In May 1990, about 1,000 activists blockaded the NIH campus,
setting off pink smoke bombs and building a fake graveyard on the lawn.
In the ego-driven science world, Fauci has been followed by whisperings
that he is really an administrator, rather than a top-notch scientist.
“Science in a suit,” as he is sometimes described. Oft-cited research he
published in the 1990s, which showed that HIV could be found in the body’s
lymph nodes where it interferes with the immune system, has only partly
dispelled this impression. Behind the quick-fire Brooklyn banter lurks a
need for professional approval. The walls of his waiting room are covered
in honorary degrees, as are those in his office and the walls in the
meeting room next door. He has 25 in total and is due to get another three
this summer including one from Yale. Rivals mutter that he lobbies heavily
for the honours.
Despite the huge investments, an Aids vaccine is still a long way off and
some researchers doubt the current crop of candidates will work. However,
there are now 19 anti-retroviral drugs on the market, many the result of
NIH research, and in rich countries Aids is no longer a guaranteed death
sentence.
Fauci, meanwhile, has won round many of his critics in the activist
community. His most complicated relationship has been with Larry Kramer,
the writer who helped form protest groups ACT UP and Gay Men’s Health
Crisis and who used to regularly call Fauci a “monster” and an
“incompetent idiot”. In 1991 Kramer wrote a play called The Destiny of Me
in which an Aids patient spends much of his time attacking his physician,
a man called Anthony Della Vida – Anthony of Life. No prizes for guessing
who he is based on. “The mystery isn’t why they don’t know anything, it’s
why they don’t want to know anything,” the lead character shouts.
Gamely, Fauci turned up to the premiere at the Lucille Lortel Theater in
Greenwich Village. After the show, the two men met in the lobby and
embraced. Kramer was overheard to say, “Will you still take care of me?
Will you still be my doctor?” Fauci replied: “I will always take care of
you Larry.”
When health secretary Tommy Thompson spoke at last summer’s UN Aids
conference in Barcelona, the stage was invaded by activists shouting the
slogan “Where is the 10 billion?” – a reference to the amount of money
experts say needs to be spent on Aids programmes in the developing world
each year. Later Fauci was called in by the White House and asked to help
come up with a programme for Aids in Africa that Bush could adopt.
The night before the president’s State of the Union address in January, he
got a call from senior staff at White House to come and help them prepare
the text. Bush had adopted the most generous version of the plan Fauci had
proposed, which involves spending $15bn on Aids over the next five years,
including the use of generic copies of Aids drugs. The legislation was
passed last week.
The plan’s critics point out that it only covers 14 countries and most of
the money bypasses international organisations set up to deal with the
crisis – a sort of healthcare unilateralism. Some say that Fauci is not a
development expert, yet he is designing treatment plans for Aids. His
advice is sought on the risks of smallpox attack and the necessary
quarantining procedures for Sars, areas well beyond his expertise.
Donna Shalala, who was health secretary for most of the eight years of the
Clinton administration, explains why Fauci has so much influence: “He can
discuss complex issues in plain English, but he is not afraid to tell you
the truth. He does not compromise on the science.” She adds: “We learned
from the British experience with mad cow disease. You have to let credible
scientists do the talking and get the politicians out of the way. The
public trust them.”
Added to that is the phenomenon that has changed almost every aspect of
public life in America: September 11. (Fauci was in Manhattan that day and
watched the unfolding horror from a 23rd floor window.) After the attacks
and the anthrax scare that followed, vice president Dick Cheney, said to
be obsessed with the dangers of microbes, asked if he could visit Fauci’s
facilities at the NIH. He was so impressed that he arranged for Bush to
visit later. “It has been a remarkable two years,” said health secretary
Thompson at that briefing.
And Thompson should know how important Fauci is to this administration.
The health secretary was accused of bungling the initial response to the
anthrax attacks by playing down the risks. Within days new cases appeared.
Some things are better left to a doctor.
- At 62 Anthony Fauci works a 20-hour day, runs every lunch-time and
rarely takes a holiday
Geoff Dyer is the FT’s pharmaceuticals and biotechnology correspondent
As these stories make clear Larry’s warm feelings towards Tony Fauci developed far earlier than his liver transplant, and have nothing to do with the director of the NIAID department of the NIH easing his path through to obtaining a replacement of his liver, which we have no evidence for at all.
Correcting the record, Larry writes that
dr. fauci had nothing to do with my obtaining a liver transplant. i applied and qualified and was accepted into a ucsf study run by dr. michelle roland that was attempting to learn if transplants would be effective in people with hiv and/or hepB and/or hepc. i believe i was the 20th or so person to be accepted. indeed they were having trouble early on in getting qualified candidates to apply because the fear of death from the t/p was great and the early results were mixed. indeed my partner was very nervous about my entering. but since several of my ny doctors had told me that i had only six months left to live on my old liver, i figured i had nothing to lose. needless to say the success of my t/p so early on was of great value to both the study and myself.
So we apologize wholeheartedly to Larry and to Tony Fauci for ever believing otherwise. Why did we believe it? We thought we had a very good source for it – none other than Larry Kramer. We read that implication in the following words, part of the long interview Larry gave to the MIX Film festival of 2003. A second look shows that it wasn’t stated as a plain fact, and that the quote may not have meant what we reasonably took it to mean, and on the contrary, Fauci did not intervene to ensure Kramer got any priority in the line for new livers:
(November 15, 2003) LK: I don’t know. I don’t know. You don’t know how close I came to dying a couple of years ago because of the Hepatitis B in my liver. I was given six months to live. I don’t know if you remember – I looked like this. And, I had no energy. And they told me that was the end, because livers were not available. And the days were ticking away. Just prior to that, Dr. Fauci the man I had called a murderer many years before has become one of my closest friends. Talk about a moving story of irony. He saw me somewhere and he said, You look terrible. And they put me in the NIH hospital, and they discovered a lot of this shit, that had not been discovered in me before.
But then it continues,
And there was a Hepatitis B experimental drug in trial there. And so, I got what is called Adefovir, and that calmed down my liver for a while, but then it stopped calming down the liver and that’s when I only had six months to live. And I was down there one day to pick up the medicine – you had to go there once a month to get the medicine – and my doctor down there – a woman called Judy Falloon said, I think you may be eligible for a liver transplant. The minute she said that, I knew I was going to get that fucking liver. I just knew it! And she didn’t say how I could get it. She said I had to apply. They were just beginning to transplant people with HIV and Hep-B co-infecteds we were called – and there was, in fact, a NIH trial out of San Francisco, with Michelle Roland – our old ACT UP lady out there – putting it together – that wanted people like me. So, that’s how I got the liver. I didn’t get it because I was *Larry* *Kramer*. I got it because they had this trial just starting and nobody wanted to go into it.
So when Larry writes,
i hope i can have a straight-forward correction of this mistake and its unkind implications.thank you.
larry kramer
we do apologize. We were wrong in concluding that Fauci was behind the offer of a liver transplant, although that was what seemed to be implied, since he initiated his NIH care. Apparently it was only that he saw Larry looked terrible and got him into the NIH clinic.
The mistake is easy to make. In another account Larry thanked Dr Fauci for his repaired conditon but again, did not say that he had helped to arrange the transplant:
I received the liver of a 45-year-old man. Dr. Fung and his fellow surgeons say in all seriousness that we are as old as our livers, and he thinks it possible I have another 20 years of life. Indeed, I feel 45 at most.
Thank you, Drs. Fung, Fauci, Faloon, and Kottler, and thank you, Gilead, for saving my life.
(Here is the full quote – click show}.
This is the testimony of Larry Kramer to the FDA’s Antiviral Drug Advisory Committee, Aug. 6, 2002 in Bethesda, Maryland.
DR. GULICK: Thank you very much.
Next to sign up to speak is Larry Kramer.
MR. KRAMER: Good afternoon.
My name is Larry Kramer. I am a writer. I am the cofounder of Gay Men’s Health Crisis, the world’s first AIDS organization, and I am the founder of Act-Up, the protest group.
Needless to say, I am not accustomed to appearing on behalf of any drug company. I have paid my own expenses to appear before you today to testify in behalf of adefovir, which I consider to be a wonder drug, and which I believe helped to save my life.
I tested HIV-positive in November 1988 although I believe I was infected at least 10 years earlier. I believe my hepatitis B also goes back to the mid-to-late 1970s. In February 1994, I began low-dose AZT, not for HIV, but for my declining platelets for which it has continued to prove most useful.
In August 1995, I began taking 3TC Epivir for my hepatitis B. In August 1999, I was on vacation in London when I became very sick with a fever of 103 degrees. I immediately flew home only to discover that no reason for the illness could be found. In retrospect, I believe this is when I became resistant to 3TC. The dreadful, malign, and evil GlaxoSmithKline, which I have hated since it was the dreadful, malign and evil Burroughs Wellcome, was finally getting back at me.
I should say that over this period, a persistent cough that I had had so long I cannot pinpoint its commencing became increasingly worse, so that there were days when I could not speak a sentence without hacking. No tests or specialists could define its cause or recommend anything to suppress it. Believe me, I tried everything.
In August of 2000, Dr. Anthony Fauci saw me and told me that I looked sick and he was concerned. I weighed 135 pounds, down some 30 pounds from my normal weight. Indeed, I looked and felt like I was 100. I had no energy or appetite.
He admitted me to the hospital at NIH where two days later I received the news from Dr. Jay Hoofnagle that my liver was in very bad condition indeed. He told me, as he did Dr. Fauci, of a new experimental drug called adefovir which might be of help to me. In any event, there was nothing else to take.
On October 13th, 2000, I underwent the first of what would be five tappings of my increasing ascites. The first one relieved me of 10 liters. This is what I looked like just over a year ago.
On October 16th, 2000, I started adefovir in an NIH trial under the supervision of Dr. Judith Faloon. My hepatitis B viral load at this date was 8 billion copies per millimeter of blood.
For the next months, my liver functions indicated great trouble. More and more from my various doctors, particularly Dr. Donald Kottler of St. Luke’s and Dr. Samuel Seigal of Mt. Sinai, as well as Dr. Fauci, I was hearing the time was running out on my liver. More and more I was hearing that I had just six more months to live.
I accepted this fate and was prepared to die. Early in 2001, Dr. Faloon told me that she believed I might be eligible for a liver transplant. For the first time, transplants were being done on people coinfected with HIV and hepatitis B. Indeed, the NIH was preparing a protocol to study just these.
She gave me a list of possible transplant centers and firmly suggested I investigate them. She repeated her suggestion on my next monthly visit to NIH for my adefovir. So began the arduous, exhausting, time-consuming task of locating a transplant center that would accept me and investigating whether my insurance would pay for me.
As anyone who has had to deal with an expensive, rare, and life-threatening disease, these are no easy tasks given the state of our entrenched bureaucracies particularly when one has been told he has so little time left to accomplish all of this.
I believe this is where adefovir became particularly life saving. I was now feeling wonderful and full of the energy necessary to pitch right in and fight. So, to repeat, as my liver was evidently deteriorating quickly, my overall health was actually improving.
My taps for ascites were still needed, but my hepatitis B viral load was decreasing. I had been investigating and what I was hearing was frightening. I might die from such a transplant, too. My initial visits to Mt. Sinai, New York, where I live were not calming. Doctors were unpleasantly discouraging, and it was evident that they were uncomfortable performing surgery on people like me.
Eventually, after much precious waste of time, thankfully, they turned me down. Then, I heard about, and eventually met, Dr. John Fung, the head of the University of Pittsburgh Medical Center’s Thomas E. Starzl Transplant Institute.
For those of you who do not know this, Dr. Starzl actually invented the liver transplant, and the Starzl Institute is the parthenon of transplants. Dr. Fung was far more encouraging and supportive of my transplant, and I applied for evaluation and listing there.
Unlike Mt. Sinai and almost every other medical center I have discovered, Dr. Fung believes that the transplanting of the coinfected can no longer be considered an experimental operation.
This has now been confirmed, as you know, rightly in the New England Journal, and he is willing for the rights of the coinfected to now be treated equally. Indeed, in rapid order, I was accepted for listing by Starzl and Medicare and Empire Blue Cross approved me for a liver transplant.
As I said, the closer I was getting to my transplant, the better I was now feeling. I was gaining weight, and my energy was strong. I was feeling so good that I was wondering if I should put off the transplant perhaps indefinitely, that if I stayed on the adefovir, which was obviously why I was feeling so much better, perhaps in addition to reducing my ascites and my hefty viral load, it would also cure the cirrhosis that was causing my rampant end-stage liver disease.
Wisely, I was advised not to be so casual, that adefovir has not yet accomplished that. By the time I left the NIH adefovir trial in October 2001 to transfer to the one at UPMC, my hep-B viral load had decreased to 4,000 copies per millimeter of blood.
By the time I left the NIH one year after starting adefovir, there was no ascites in my system as per an ultrasound there. I had my liver transplant on December 21, 2001. Dr. Fung said the old one was truly on its last legs.
I was the 22nd coinfected person to receive a new liver, and at 66, the oldest person. I believe my transplant is considered to be a great success. I do know that each and every single day, I feel wonderful. My awful cough disappeared the minute I came out of the operating room. My HIV viral load and T cell count continue approximately what they had been before, almost undetectable for the first and in the 400s for the latter, although now I must take the dreaded cocktail.
But because I am HIV-positive, I require next to no anti-rejection drugs, the only benefit I have found from being HIV-positive, and there is no detectable hepatitis B in my system. No one will say that it has gone from my system completely, but no one will say it hasn’t, and I am still on my daily dose of 10 mg of adefovir.
I received the liver of a 45-year-old man. Dr. Fung and his fellow surgeons say in all seriousness that we are as old as our livers, and he thinks it possible I have another 20 years of life. Indeed, I feel 45 at most.
Thank you, Drs. Fung, Fauci, Faloon, and Kottler, and thank you, Gilead, for saving my life.
Has anyone got any questions?
Thank you.
DR. GULICK: Thank you very much.
Sorry, Larry, for any implication on our part that Fauci moved you ahead of others on the line, which we didn’t mean to imply, and which is probably what worries you. Here is the full quote for reference (click show):
(November 15, 2003 MIX Festival transcript of interview with Larry Kramer)
LK: I don’t know. I don’t know. You don’t know how close I came to dying a couple of years ago because of the Hepatitis B in my liver. I was given six months to live. I don’t know if you remember – I looked like this. And, I had no energy. And they told me that was the end, because livers were not available. And the days were ticking away. Just prior to that, Dr. Fauci the man I had called a murderer many years before has become one of my closest friends. Talk about a moving story of irony. He saw me somewhere and he said, You look terrible. And they put me in the NIH hospital, and they discovered a lot of this shit, that had not been discovered in me before. And there was a Hepatitis B experimental drug in trial there. And so, I got what is called Adefovir, and that calmed down my liver for a while, but then it stopped calming down the liver and that’s when I only had six months to live. And I was down there one day to pick up the medicine – you had to go there once a month to get the medicine – and my doctor down there – a woman called Judy Falloon said, I think you may be eligible for a liver transplant. The minute she said that, I knew I was going to get that fucking liver. I just knew it! And she didn’t say how I could get it. She said I had to apply. They were just beginning to transplant people with HIV and Hep-B co-infecteds we were called – and there was, in fact, a NIH trial out of San Francisco, with Michelle Roland – our old ACT UP lady out there – putting it together – that wanted people like me. So, that’s how I got the liver. I didn’t get it because I was *Larry* *Kramer*. I got it because they had this trial just starting and nobody wanted to go into it.
*SS:* *By the way, what year did you test positive?*
LK: That’s a long time before. I tested positive for HIV in, I can’t remember, in ‘85,’86 or ‘87. Somewhere in there. I can’t remember. But, I knew I had Hep-B, from the late ’70s – then I knew.
*SS:* *At that era, a lot of people were advocating for early medication* *before symptoms – how did you resist that?*
LK: Because my doctor Jeff Green said, I don’t think you need it. We had ordered Crixivan, which was the first one out, and I had the bottle in my hand. And we were going to start, and he called me up and he said, let’s wait awhile. I said, fine with me.
*SS:* *So, which HIV meds are you taking?*
LK: I took AZT when my liver started going bad, when my platelets went down. AZT, unknown to a lot of people, raises your platelets, so I took it for that. And then, I took Epivir, 3TC – whatever it’s called – for the Hep-B. And, that’s all I took for a number of years. And then since the transplant started, I’ve taken a bunch of them. I took Viracept, until I became resistant to it. I took Sustiva, which I loathed, until fortunately I became resistant to it, because it drove me nuts. And now, I’m on something which is an amazing drug, because it has absolutely no side effects – it’s like taking aspirin – it’s called Reyataz. Only now, they’ve just discovered – Steve Miles, the UCLA AIDS man has just discovered that Reyataz interacting with the other *drugs* I *take* is bad for Hepatitis-B. We know so much now, and I have so many doctors that I correspond with. I mean, talk about patient empowerment. I brought it to a new art. I have six doctors who I e-mail everything about me, and I pester them all to death, and I *take* advantage of everything that I possibly can, to get the information I need – just what we advocated everybody to do. They don’t like that I do this group e-mail. And, not one of them who answers me will copy all the others – out of courtesy. They only send it to me, and I got to send it around. Too many cooks, *Larry*!
*SS:* *Which one of these *drugs* do you feel exist as a consequence of ACT* *UP?*
LK: All of them. I have no doubt in my mind. Those fucking *drugs* are out there because of ACT UP. And that’s our greatest, greatest achievement – totally.
Finally, Larry does not have Hepatitis C, just B.
i do not have and did not have hepC. heb B and hiv are my lot. both are now undetectable and have been since the transplant.
Of course, we didn’t say he had Hepatitis C, only speculated that was one of the reasons why his liver might have declined in the absence of any drugtaking, which was his claim. As noted earlier, however, the interview and other quotes elsewhere in fact make it clear that he was taking drugs before his liver transplant, including AZT, by the mid nineties.
The fate of many may now ride on Kramer’s actions
We are still not sure why the activist playwright told Duesberg that he took no drugs, but it may have been that he meant he did not take hard drugs, or recreational ones.
The important thing is that he now shares a suspicion of the toxicity of anti-HIV drugs with Duesberg, who has argued all along that the main attack on the immune system of HIV?AIDS patients comes from alien chemicals snorted or injected. Will Kramer now take a greater interest in learning what Duesberg has to say on the cause of AIDS? Let’s hope so. The whole battle that Kramer has fought is for the patient’s right to take charge of his or her own destiny.
We hope that the signs are correct, and that this most important player finally realizes that this means above all taking charge of the facts of medicine and science behind the treatment he is offered. The challengers to this conventional treatment give twenty different reasons for concluding that HIV is not the cause of anything and that the anti-HIV medicines he is taking after his liver transplant are damaging to …. the liver.
Let’s hope he will now listen to Duesberg, as he has shown he is willing to do. This might contribute to a great turnaround in a matter which is a life and death issue for so many, not to mention vast sums of public money in an era where every dollar counts in the fight for global health.
Much hangs on what Larry Kramer does now. Will he investigate and confirm that Peter Duesberg deserves to be taken seriously, and help to win funding for the embattled scientific idealist to bring a resolution through experiments to a twenty year old dispute which never should have gone on so long, putting at risk the lives of so many, including Kramer’s own?