Damned Heretics

Condemned by the established, but very often right

I am Nicolaus Copernicus, and I approve of this blog

I am Richard Feynman and I approve of this blog

Qualified outsiders and maverick insiders are often right about the need to replace received wisdom in science and society, as the history of the Nobel prize shows. This blog exists to back the best of them in their uphill assault on the massively entrenched edifice of resistance to and prejudice against reviewing, let alone revising, ruling ideas. In support of such qualified dissenters and courageous heretics we search for scientific paradigms and other established beliefs which may be maintained only by the power and politics of the status quo, comparing them with academic research and the published experimental and investigative record.

We especially defend and support the funding of honest, accomplished, independent minded and often heroic scientists, inventors and other original thinkers and their right to free speech and publication against the censorship, mudslinging, false arguments, ad hominem propaganda, overwhelming crowd prejudice and internal science politics of the paradigm wars of cancer, AIDS, evolution, global warming, cosmology, particle physics, macroeconomics, health and medicine, diet and nutrition.

HONOR ROLL OF SCIENTIFIC TRUTHSEEKERS

Henry Bauer, Peter Breggin , Harvey Bialy, Giordano Bruno, Erwin Chargaff, Nicolaus Copernicus, Francis Crick, Paul Crutzen, Marie Curie, Rebecca Culshaw, Freeman Dyson, Peter Duesberg, Albert Einstein, Richard Feynman, John Fewster, Galileo Galilei, Alec Gordon, James Hansen, Edward Jenner, Benjamin Jesty, Michio Kaku, Adrian Kent, Ernst Krebs, Thomas Kuhn, Serge Lang, John Lauritsen, Mark Leggett, Richard Lindzen, Lynn Margulis, Barbara McClintock, George Miklos, Marco Mamone Capria, Peter Medawar, Kary Mullis, Linus Pauling, Eric Penrose, Max Planck, Rainer Plaga, David Rasnick, Sherwood Rowland, Carl Sagan, Otto Rossler, Fred Singer, Thomas Szasz, Alfred Wegener, Edward O. Wilson, James Watson.
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Many people would die rather than think – in fact, they do so. – Bertrand Russell.

Skepticism is dangerous. That’s exactly its function, in my view. It is the business of skepticism to be dangerous. And that’s why there is a great reluctance to teach it in schools. That’s why you don’t find a general fluency in skepticism in the media. On the other hand, how will we negotiate a very perilous future if we don’t have the elementary intellectual tools to ask searching questions of those nominally in charge, especially in a democracy? – Carl Sagan (The Burden of Skepticism, keynote address to CSICOP Annual Conference, Pasadena, April 3/4, 1982).

It is really important to underscore that everything we’re talking about tonight could be utter nonsense. – Brian Greene (NYU panel on Hidden Dimensions June 5 2010, World Science Festival)

I am Albert Einstein, and I heartily approve of this blog, insofar as it seems to believe both in science and the importance of intellectual imagination, uncompromised by out of date emotions such as the impulse toward conventional religious beliefs, national aggression as a part of patriotism, and so on.   As I once remarked, the further the spiritual evolution of mankind advances, the more certain it seems to me that the path to genuine religiosity does not lie through the fear of life, and the fear of death, and blind faith, but through striving after rational knowledge.   Certainly the application of the impulse toward blind faith in science whereby authority is treated as some kind of church is to be deplored.  As I have also said, the only thing ever interfered with my learning was my education. My name as you already perceive without a doubt is George Bernard Shaw, and I certainly approve of this blog, in that its guiding spirit appears to be blasphemous in regard to the High Church doctrines of science, and it flouts the censorship of the powers that be, and as I have famously remarked, all great truths begin as blasphemy, and the first duty of the truthteller is to fight censorship, and while I notice that its seriousness of purpose is often alleviated by a satirical irony which sometimes borders on the facetious, this is all to the good, for as I have also famously remarked, if you wish to be a dissenter, make certain that you frame your ideas in jest, otherwise they will seek to kill you.  My own method was always to take the utmost trouble to find the right thing to say, and then to say it with the utmost levity. (Photo by Alfred Eisenstaedt for Life magazine) One should as a rule respect public opinion in so far as is necessary to avoid starvation and to keep out of prison, but anything that goes beyond this is voluntary submission to an unnecessary tyranny, and is likely to interfere with happiness in all kinds of ways. – Bertrand Russell, Conquest of Happiness (1930) ch. 9

(Click for more Unusual Quotations on Science and Belief)

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Larry Kramer corrects our lashing, wins apology

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.

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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.

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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.

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(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}.

(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):

(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?

123 Responses to “Larry Kramer corrects our lashing, wins apology”

  1. truthseeker Says:

    “The Al-Bayati revisionist reconstruction of the Scovill autopsy on a finding of anaphylactic shock due to amoxicillin allergy is without merit unless NAR can demonstrate a refutation of the histopathological findings of PCP.

    The child (tragically) succumbed to Pneumocystis carinii pneumonia. On examination of sections of brain and lung tissues hiv (p24) was found imbedded in the tissues. PCP histologic findings were found in brain and lung tissues.”

    Apparently not. There was no meaningful evidence of pneumonia in the lungs ie no PCP above the residual amount found in anybody’s lungs.

    It seems that you may not be reading the coroner’s report and the rebuttal. The former does not make much sense and is flawed in its conclusion. Even HIV in the brain does not cause sudden death with all the symptoms of allergic shock. If you think so, you are contradicting the mainstream theory itself, not to mention common sense. You may have to ask yourself why you wish to do so. We wouldn’t do that ourselves, since questioning the motives, even the unconscious ones, of respected posters to this site is verboten.

    As explained in the site we referred you to, justiceforej.com, “Dr. Mohammed Al-Bayati is a respected pathologist (PhD) and a dual board certified toxicologist with over twenty-five years experience and over forty articles published in the scientific and medical literature. He was asked to review the Los Angeles Coroner’s report on Eliza Jane Scovill’s death which had concluded that Eliza Jane died of AIDS-related pneumonia.

    Granted he had been or was associated with the mother before, but the statements he makes publicly have not been challenged, as far as we know, and they accord with the facts, common sense and obvious conclusion.

    “Dr. Al-Bayati performed differential diagnosis utilizing the autopsy data, Eliza Jane’s medical records and the pertinent published medical literature. Dr. Al-Bayati concludes that “Eliza Jane’s death was not caused by Pneumocystis carinii Pneumonia or any type of pneumonia. Her lungs did not show an inflammatory response to medically justify a diagnosis of pneumonia of any kind. Eliza Jane’s death resulted from acute allergic reaction to amoxicillin [a form of penicillin] which caused severe hypotension, shock, and cardiac arrest.””

    There is also the issue of whether Ribe is competent. The report took four months, and the delay was apparently after he was tipped off as to the one time HIV + status of the mother years ago.

    The delay suggests political moves of some kind. Dare we suggest “covering his ass”?

    “…James K. Ribe, MD and Senior Deputy Medical Examiner for Los Angeles County signed the autopsy report concluding “Cause of death is Pneumocystis carinii pneumonia due to Acquired Immunodeficiency Syndrome”.

    “Many questions have been raised about the reliability of Ribe’s conclusions. California lawyer Lewis Owen Amack has prepared a report which cites numerous examples of Ribe’s questionable activities in “Testimonial Flip Flops: A report on Los Angeles County Coroner Dr. James K. Ribe”.”

    There was no HIV test included with the report, by the way.

    “The autopsy report on Eliza Jane Scovill prepared by the coroner mentions, but does not include results from an HIV test. Attorneys for the Maggiore-Scovill family have requested specific information on this test as well as any other HIV-related lab tests that may have been conducted post-mortem, and are still awaiting a response from the coroner’s office.

    Readers may wish to note that Maggiore’s husband and partner of nine years, and their son age eight, both tested HIV negative multiple times in September and October of this year.”

    The guy is of very questionable competence apart from suspect motives (according to this and other comment):

    “Closer to home, the LA County Coroner’s office was involved with the case of a grandmother accused of shaking a baby to death, and subsequently sent to prison, but later released when an appeal overturned the conviction. The appeal’s court judged noted that there was no motivation for the grandmother, no prior history of abuse and, most troubling of all “absence of the usual indicators of violent shaking such as bruises on the body, fractured arms or ribs, or retinal bleeding.” This did not stop the prosecution ‘experts’ from testifying that abuse occurred. From the appeal transcript (PDF file): “The prosecution’s expert testimony, absolutely critical to its case, concluded that the cause of death was tearing or shearing of the brain stem when there was no physical evidence of such tearing or shearing, and no other evidence supporting death by violent shaking.” Somewhat ironically, they also stated “Absence of evidence cannot constitute proof beyond a reasonable doubt.”

    Al-Bayati was backed by a fellow of some reputation:

    “One expert to comment is Dr. Harold E. Buttram, MD, FAAEM (Fellow of the American Academy of Emergency Medicine). He reviewed Al-Bayati’s report and wrote this letter in response:

    “October 30th 2005

    “For the past several years I have had the privilege of becoming familiar with the work of Dr. Mohammed Ali Al-Bayati through mutually shared cases involving alleged parental child abuse in the form of shaken baby syndrome (SBS). In these cases, each of us wrote medical reports defending parents whom we believed were falsely accused.

    “Regarding my own background, in the past six years I have written approximately 80 medical reports in defense of parents whom I believed to have been falsely accused of violent physical child abuse, largely involving charges of SBS. With few exceptions in these cases, I have observed a troubling pattern of abandonment of the usual thoroughness one finds in medical centers once suspicions of SBS were raised. In most cases that I have reviewed, in my opinion, there have been varying degrees of negligence in working through differential diagnoses, sometimes missing the most obvious of alternate non-traumatic causes.

    “In the present case of the autopsy report on Eliza Jane Scovill, in my opinion, there is a similar pattern; that is, diagnostic assumptions have been made based on superficial evaluation with little if any attempt to investigate other possible causes of the child’s three-week illness culminating in death.

    “Regarding Dr. Al-Bayati, I consider him to be a master craftsman in a broad field of medical expertise. His workups are exhaustive and meticulous, yet plainly written so as to be accessible to reasonably educated non-medical people. He makes no statements or claims that he does not document in the medical literature.

    “In the case of Eliza Jane Scovill, I first reviewed the autopsy report, which did in fact give rise to personal concerns and doubts. However, after going through Dr. Al-Bayati’s report point-by-point, he put all doubts to rest. There is no question in my mind that his report accurately describes the true causes in the death of Eliza Jane Scovill.

    “Harold E Buttram, MD, FAAEM

    “Quakertown, PA, USA.”

    Frankly, we don’t find it easy to take your point seriously and have to say it is important to consider the evidence and not be biased toward the statements of officials, probably incompetent or worse, that contradict the obvious.

    In particular, the grand issue of HIV?AIDS has to be addressed with reference to the respectable literature in science and medicine and not the non-peer reviewed work of a minor functionary, or even the statements of high up officials and scientists, if they conflict with common sense.

  2. McKiernan Says:

    “The Al-Bayati revisionist reconstruction of the Scovill autopsy on a finding of anaphylactic shock due to amoxicillin allergy is without merit unless NAR can demonstrate a refutation of the histopathological findings of PCP.

    The child (tragically) succumbed to Pneumocystis carinii pneumonia. On examination of sections of brain and lung tissues hiv (p24) was found imbedded in the tissues. PCP histologic findings were found in brain and lung tissues.”

    “Apparently not. There was no meaningful evidence of pneumonia in the lungs ie no PCP above the residual amount found in anybody’s lungs.”

    Okay, I choose to disagree. The child did not have the mainstream symptoms of allergic shock. There was no rash, no angioneurotic edema, no swelling of lips, eyes or ankles and the child never had a history of ever receiving amoxicillin or penicillin. Allergy doesn’t happen unless there is a prior exposure.

    Secondly, this case clearly is a primary example of AIDS as under discussion. And by the way, the childs lungs weighed twice their normal weight.

    I apologize for the following but it does rebut most of Al-Bayati’s proposed autopsy in words better expressed than by myself.

    Dr. Al-Bayati concedes that P. carinii, an AIDS-defining organism, was present in Eliza Jane’s lungs but tries to wave this finding away by pointing out that there was not a “pneumonia” because no inflammation was observed, citing a definition in a pathology textbook (a technique not unlike arguing about technical words using dictionary definitions). He repeats this again and again ad nauseam. He also states that P. carinii is ubiquitous, only causing disease in immunosuppressed patients. There are couple of problems with these arguments. First, immunosuppressed AIDS patients tend not to be able to mount a very effective inflammatory response to infection. Indeed, it has been noted that, in HIV infection, PCP pneumonia provokes fewer inflammatory cells and that PCP is worse in patients immunosuppressed by other causes as their immune system recovers and starts attacking the organism, causing inflammation. (That’s one reason why the chest X-ray findings and physical exam findings can be so variable.) The one argument Dr. Al-Bayati makes in this context that isn’t totally off the wall is that PCP can occur due to immunosuppression from other causes, and he cites several references that show that PCP can occur in people without HIV if they are immunosuppressed for other reasons. Of course, this line of argument totally begs the question of what the cause of this Eliza Jane’s profound immunosuppression was in the first place if it wasn’t HIV infection. Second, as Dr. McBride pointed out, for P. carinii to be detected in routine tissue samples at autopsy, there have to be a lot of organisms there. In immunocompetent individuals, there simply aren’t enough bugs to show up on silver stain. Given that the HIV protein detected in the brain implicates an obvious cause for the immunosuppression that led to the presence of so much P. carinii in Eliza Jane’s lungs, it’s hard not to conclude that Eliza Jane had AIDS-associated PCP. Dr. Al-Bayati clearly realized that he had to try to throw doubt on that finding.

    And if in fact Al-Bayait is so convinced of acute allergy why is he talking about:

    “The first one is erythrocytic aplastic crisis due to infection with parvovirus B19 (PVB19, the virus mentioned above), of course.

    (And)

    PVB19 is a parvovirus that is fairly common and can cause upper respiratory infections, erythema infectiosum, arthritis and arthralgias, and transient aplastic crisis. Dr. Al-Bayati makes much of the ability of this virus to cause anemia by transiently suppressing the progenitor cells that develop into red blood cells and blames infection with this virus for Eliza Jane’s profound anemia.”

    See same link. And its only part of the answers.

    Serious rebuttals to Al-Bayati have been made, which he has not answered. Harold Buttram, I’d suggest hasn’t established any worthy respect regarding his opinions.

    The notion that clinical findings need to be subservient to respectable peer-reviewed findings selectively quoted by a one-sided interest group is disrespectful to the truth and to finding the truth.

    “Frankly, we don’t find it easy to take your point seriously “.

    That isn’t surprising to one entrenched in their views.

    A person once said,

    “The point that conflicts with your comfort zone is the point within which the wisdom of the truth must be examined”.

    For Mr. Barnes, that is his stepping off point. If you recall he said,

    “I’m not interested in talking about Maggiore child, others may be.”

    So McKiernan must be getting somewhere because the replies are getting longer and longer.

    And again: Mr. Orac:

    “And that’s where his strangest argument of all comes in.

    There’s a saying in medicine that, when you hear hoofbeats you don’t look for zebras. (A zebra is medical slang for a rare or highly unlikely diagnosis.) Yes, occasionally it you will find a zebra, but the vast majority of the time you will not. Consequently, when one hears hoofbeats from a tragic case of a dead child of an HIV-positive mother who was found to have profound anemia, PCP, and encephalitic lesions with HIV proteins detected in them, by far the most likely diagnosis is AIDS. Indeed, in the differential diagnosis, the first ten diagnoses in the differential would be AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, and then–very far down the line in probabilities–everything else. Given this, it’s not surprising that, in his rebuttal, Dr. Al-Bayati hears not one, but at least two zebras approaching.”

    Hopefully this meets Mr. Barnes criteria about what is perhaps minimally distinctive about AIDS.

    I appreciate your permitting me to comment, Truthseeker.

  3. Celia Farber Says:

    I have to agree with McKiernan that the little girl, EJ, did not appear to have the mainstream symptoms of fatal allergic reaction to an antibiotic. Peter Duesberg, actually, was the first to inform me that “allergic” reactions to antibiotics involve swelling and so he was uncertain on that point. He never takes easy routes and neither should any of us. My conversation with Duesberg about it stopped short when we both simply felt words sounded cold and at least for my part I can say that I feel queasy talking about this as a kind of…dialectic about the HIV war.

    I think this is about our humanity, first.

    I believe that EJ’s parents both want the true answer. The real answer. The truth.

    But we will never get it if the atmosphere is one of war and winning. Not with indignation, accusations of murder, denials of this that or the other. The spirit of liberty is the spirit that is never too sure that it is right. (Learned Hand)

    Truthseeker–try to set up parameters by which we can agree on what an AIDS death is and is not.

    Make each side be utterly fair. Can we do that? Don’t let EITHER side move the goalposts.

    My first question to the orthodoxy:

    Does a child have to “have” HIV (test positive) to have died of AIDS?

    Or is it enough that the mother tested positive?

    IF EJ WAS tested, and the test was negative (I have no idea and neither do any of us)…then did she still die of AIDS? This is a question strictly for those who are certain EJ died of AIDS, caused by HIV. Does it have to be present to cause disease?

    Why do you all gathered here think the coroner did not mention an HIV test? I am very confused on this point. Stuck.

    Any ideas? I speak of a blood test–her blood having been tested. Does anybody have ANY information on that and if not, any ideas about what it means or does not mean if EJ WAS tested and tested negative, or wasn’t tested (what would that mean)or tested positive but they excluded it from the report (why?)

    Ground rules are in order before we proceed.

    Bob Lederer’s take on it in POZ was preposterous. Very cheap, like something out of former GDR, making the coroner look virtuous for protecting the girl’s “privacy”…despite showing her brain tissue on ABC Primetime.

  4. Celia Farber Says:

    Here is Lederer’s masterful handling of the matter, from his article “Dead Certain,” (nice!) in POZ:

    “Several months after Eliza Jane died, James K. Ribe, MD, senior deputy medical examiner at the Los Angeles County coroner’s office, pronounced that her death had been caused by Pneumocystis carinii pneumonia (PCP), one of the most common—and fatal—opportunistic infections associated with HIV, and her death was declared to be AIDS-related. Slides of cells from Eliza Jane’s lung showed large colonies of Pneumocystis carinii. The autopsy report also described the presence of HIV core proteins in the brain and confirmed a diagnosis of HIV
    encephalitis. Because of an ongoing criminal investigation into Eliza Jane’s death, the coroner’s office would not confirm to POZ whether it had actually tested her blood for HIV infection or HIV antibodies.”

    What kind of fools does he take his readers for?

    Can anybody even begin to unravel the journalistic logic in that last sentence?

    Because of an ongoing criminal investigation, every tissue and organ of the girl can be displayed on national television…but…sorry folks, not the HIV test result. Not even to the parents.

    Am I alone in feeling this is madness?

  5. Dan Says:

    “AIDS” constantly defies logic, in my opinion…so why should the case of EJ be any different?

    How on earth can ANYONE come to a conclusion that a child died of “AIDS” without testing her blood for “HIV”? That really isn’t a question. Without an “HIV” test and therefore without “HIV”, how can there be “AIDS”? Is this the new standard in “AIDS” diagnosis…guilt by association?

  6. McKiernan Says:

    Celia,

    How so very, very kind and thoughtful of you. I have not made complimentary statements to you in the past. Although I once did answer Mr. Barnes that your Harper’s article was excellent after he had challenged me that I had (previously) said nothing.

    I certainly cannot answer whether an hiv blood test was done. On the other hand, serologic testing is not the only criteria accepted in a diagnosis in hiv. The autopsy report says, that p24 was found in the tissues. HIV is tested by blood, serologically. The findings of the autopsy were intra-cellular and histological. That is a valid diagnosis.

    Criminal investigation most certainly is not warranted in this so very tragic death. But I confirm you are right,

    “I think this is about our humanity, first .”

    That’s why this child is important and distinctive and unique.

    I think society will have failed her to not know the authentic answers to the important questions and not pre-programmed by old peer-reviewed papers lying in the dust of someones office.

    McKiernan, for one, shares the madness.

  7. Robert Houston Says:

    This is such a ghoulish red herring, apparently intended to divert attention from any substantive issues or evidence re HIV?AIDS.

    Consult the PDR for amoxicillin. The symptoms the girl had, – vomiting in hours of taking the drug, and turning white – are described as serious adverse effects of the drug.

    Unlike pediatric AIDS cases, this girl had no prior history of infections. What she did have, however, was a dosage 50% higher than recommended to treat a routine eqr infection.

    So pick on her bones, you vultures.

    Is there no level so low that you’ll stoop to attack any dissent from your worthless paradigm?

  8. truthseeker Says:

    “Frankly, we don’t find it easy to take your point seriously “.

    “That isn’t surprising to one entrenched in their views.”

    McK, we believe you must mean “in” rather than “to”, and we hope this is not a Freudian slip :-)

    We find it hard to take your detailed analysis seriously since it contradicts the basic observation that there was nothing seriously ailing about the poor child until the sudden onset of a very rapid decline and death in the immediate aftermath of a larger than normal dose of a drug with known adverse effects of this kind.

    AIDS does not kill people in 24 hours, whatever it is supposedly caused by. Smart people apply Occam’s razor here.

    Therefore this focus on other details to escape the brunt of the evidence is precisely what Houston describes it as, a red herring, and an unjust and unwarranted disturbance of what should be a private healing process for the mother of this child, who has suffered a tragedy which is the price paid for using what is usually a helpful drug but which every informed pediatrician knows risks this kind of disaster in a small number of cases, a number which must surely rise when the dosage is larger than called for.

    McK, we all have to face up to the fact that before we analyze events of this kind, we must get rid of preconceptions or biases. You obviously see this applies to those debating with you. You have a duty to consider if it applies to you. We all do. And in this case, we have a double duty to be something other than looking for justification of a preconceived notion, not only because Christine Maggiore deserves immense sympathy for the loss of her child, and not to be the object of witch hunting to establish a case precedent to further empower a failed paradigm, but also because the HIV?AIDS paradigm is now exposed by so many intelligent critics as questionable, or to put it frankly, as ill founded as this blog has tirelessly pointed out.

    Perhaps you think that Houston’s complaint is excessive, but we as gentlemen also feel the obligation to defend this poor woman in the same way. We have every confidence that a gentleman who is, after all, as informed about the case as you are – apologies for imagining that you were not – will come to the same conclusion eventually.

  9. Celia Farber Says:

    There is another way that EJ could have died from the antibiotic but not as an “allergic” reaction.

    I was only saying that the “allergic” part seemed not quite right. I have been researching other scenarios. It’s too early to start talking about it. But I know what I would like to find out and think there is a way the pieces can all fit together.

    I know that Christine, in fact, welcomes us all to talk about this if it moves the final truth closer. She wants to know what really happened to EJ.

  10. Celia Farber Says:

    It’s hard to find a way to talk about this without over-stepping one’s license and authority, which is nil. By that I mean, none of us are pathologists, emergency room physicians, etc.

    It would be far better if we consulted people outside our own heads, no? Truthseeker–it seems many feel that Ribe’s report was very troubling and extremely biased and that Al Bayati’s grew in response TO IT. Is it possible the answer to Eliza Jane’s death lies beyond the horizon of both reports?

    If so, there are experts to be consulted. I intend absolutely no diminishment of either Ribe or Al Bayati here. But what I am proposing is that different observations might be made if the data is removed from the hotzone of the HIV cause war, now with EJ’s autopsy report as a kind of terrible bridge between two worlds.

  11. truthseeker Says:

    The laudable desire not to jump to conclusions, to admit that one is not an expert, and to consult with the experts, is that your new journalistic approach, Celia? At this stage that strikes us as strange, given the fact that this whole HIV?AIDS mess has resulted from precisely that modest approach, since it was thoroughly taken advantage of by the heroes of HIV?AIDS.

    As far as EJ is concerned, all we can do is respond to the evidence available to us, in a spirit of double checking what the experts say in a situation where there are many signs that politics has taken over a routine autopsy.

    What the evidence says is that the poor child’s health was normal until administered too much of a drug with known small risk of adverse reactions, that such adverse reactions then most unfortunately materialized. Perhaps you know more.

    But in the absence of any other significant information, the fact that the HIV meme has gone global and infested the minds of otherwise good men and women so that they “know” that the interpretation has to be that somehow HIV?AIDS suddenly caused the child’s death, contrary to its normal supposed workings, does not mean that we have to change this analysis.

    Which experts are you suggesting be consulted further, and why? Do you know something we do not? We note that the more people look into this, the shoddier the work of the first proposed expert, the coroner, appears to be. For example, there were no controls for the positive staining of the brain tissue, which anyway is not diagnostic of the presence of HIV. Moreover, the HIV test that was carried out (acccording to a box checked on the report) was obviously negative, since given the attitude of the coroner if it was positive it would have been trumpeted to the skies.

    This kind of indication of incompetence and worse has been collected by Marcus Cohen, the New York columnist for the Townsend Report, in a column to be published in the next issue. Among other things the column suggests the wisdom of Maggiore in refusing the usual HIV?AIDS prescribed interventions during her pregnancy, when she tested positive for HIV. She avoided intravenous AZT infusion during labor and six weeks of AZT after delivery for the baby, which grew up perfectly healthy by all accounts thereafter, until the disastrous dosage of amoxicillin.

    Maggiore based her rejection of the standard treatment on her own reading of the scientific literature. This is the source that should be consulted when “experts” offer their “expertise” in ways which conflict with reason and common sense, since it is after all the source of their own knowledge, or should be.

    One thing that Maggiore complains about is that she always asks her critics for references which might change her conclusions, but even the experts quoted in the media seem unable to provide them, Cohen notes. Maggiore phoned or wrote to them to ask politely for the references for their hostile opinions, only to be told she had “a screw loose”, or get no reply at all.

  12. HankBarnes Says:

    Among other things the column suggests the wisdom of Maggiore in refusing the usual HIV?AIDS prescribed interventions during her pregnancy, when she tested positive for HIV. She avoided intravenous AZT infusion during labor and six weeks of AZT after delivery for the baby

    Giving pregnant women AZT to allegedy prevent mother-to-child transmission of HIV to the baby is a real bad idea.

    AZT has been given to pregnant mice to determine the effects. (Olivero, Journal of NCI, (1997) 89: 1602-1603.)

    The results?

    At 1 year of age, the offspring of AZT-treated mice exhibited statistically-significant, dose-dependent increases in tumor multiplicity in the lungs, liver, and female reproductive organs. (Olivero, page 1602).

    Translation:

    We gave pregnant mice AZT and their baby mice got cancer.

    So, in addition to its multitude of other problems, AZT is a carcinogen in animals.

    Hank B.

  13. Mark Biernbaum Says:

    I’m just popping back in to say that I must retire from this debate permanently. Richard Jefferys has slandered me on line, and now I must keep quiet while my attorney files a case against him. I would encourage other gay, HIV+ men to continue to express their views — the dissident movement is going no where without our participation. Just be careful to dispel the stereotypes often held by some of the straight bloggers.

  14. LLI Says:

    Mark, I’d like to thank you for so bravely expressing your doubts publicly and subjecting yourself to the slings and arrows, but, to be perfectly honest, you haven’t been in this debate long. There have been gay men, HIV+ and -, who have spoken up for a long time and even lost their lives in order to alert people about what’s going on. I mean no offense to you, but I hope you understand that some people have lost friends and been personally attacked for over a decade. You are ready to drop out of this, and, believe me, I understand. But try to remember that you are just one in a long line of people who have been and are being shunned and slandered. I know, you are working on a lawsuit now, but if it’s not Jeffreys it’s going to be someone else.

    And Mr. Jeffreys, could you please just get over yourself for a minute to realize for ONCE that people are debating this because they think something’s wrong and it’s important to talk about, even if you don’t agree? That you can slander someone so ruthlessly…well, you just better hope that you’re right and that HIV and AIDS science doesn’t have a complete turn around before the end of your lifetime. Oh wait, that’s right, we’re just a Duesbergian right-wing conspiracy to make sure that sick people don’t get life-saving treatment and that gay men lose all political power because we have doo-doo in our souls.

  15. Mark Biernbaum Says:

    Hi LLI, and thank you.

    You make some great points here. I know I am following in the footsteps of a great many gay men who have been fighting this — some, like David Pasquerelli, who lost their lives in this fight. I am indebted to every one of them– we all are.

    And I know you’re right — if it’s not Jefferys, it will be someone else. But in the past weeks, not only has Jefferys revealed my business, insisted that I was fired from my academic post when I actually resigned, but John P. Moore has also slandered my brother (accusing him of making a threatening phone call). My brother is an emergency room physician who has nothing to do with these debates. They are coming after me AND after my family, and I can’t sit idly by and let them attack my family as well. If they want to try to ruin my business and my career, that’s one thing. But to attack my family is another thing entirely — especially my brother, who saves lives every day.

    Sometimes, it’s important to take a stand. Folks like Jefferys have been doing this for years, I know. Someone has to fight back, and not just on line either. Don’t expect you won’t hear from me again, however. I’m not dropping out of the debate, just off of the blogs for now. Thanks again for your support and kind words.

  16. Celia Farber Says:

    This is a very important conversation. The entire system by which rational discourse has been strangled here, has been the character assassination, the “rubbishing” of the counter-revolutionaries.

    This is well known to students of totalitarian cultures.

    I suggest a special thread, or wall, right here on NAR, that allows people to put their stories up. What has been done to innocent people is so shocking, and it goes on each day, still, all around us. It has become not only acceptable to tarnish, slander, in effect “murder” HIV dissenters, but moreover, it is seen as heroic.

    There was a museum I cherished on the western border between what used to be east and west Berlin, simply called the Wall Museum. Escape stories in all forms were collected there. When the wall came down, the little museum was removed as fast as all other remnants of that ghastly place, GDR.

    I am greatly concerned with the erasure of history.

    Can we make electronic museums? This is not a “debate.” The time for that is long past. The only thing left to do is allow people a forum to tell their stories.

    “History” and “Truth,” what are they? Human stories.

    When “history” can see and hear again, the stories can get told.

  17. DB Says:

    I suggest a special thread, or wall, right here on NAR, that allows people to put their stories up. What has been done to innocent people is so shocking, and it goes on each day, still, all around us. It has become not only acceptable to tarnish, slander, in effect “murder” HIV dissenters, but moreover, it is seen as heroic.

    Brilliant idea! Whether here or somewhere else.

  18. Richard Jefferys Says:

    Can I include these?

    “All you can do is bully and demonize what you PERCEIVE TO BE a camp of extremists whose positions you consistently misrepresent.”

    “Bob Lederer, who is as outrageously manipulative as you are”

    “Mr. Jeffreys. I feel sorry for you.”

    “You can’t seem to read.”

    “Richard, you must be dense.”

    “I’m going to guess that you’re a TAC plant, Richard.”

    “You make me sick in my heart, Mr. Jefferys.”

    “it has everything to do with what has gone on and what continues to go on in the dark recesses of Mr. Jefferys brain. In other words — it’s a psychological problem, quite simply. It’s somewhat akin to the anti-semite who only finds himself attracted to Jews.”

    “TAC by the way is a terrorist organization”

    “Mr. Jefferys has been deployed by TAC (in particular, by John P. Moore) to assassinate the character of scientists and others who question the HIV=AIDS paradigm. He has done this to me, to Dr. Rebecca Culshaw, and here now to Hank Barnes.”

    “Richard Jefferys. You are indeed a TAC plant.”

    “Now you are guilty of defamation”

    “Richard Jefferys has slandered me on line”

    – Slander, by the way, is speech. Libel/defamation is a demonstrably false and injurious statement, presented as fact. There are several examples of the latter in the above quotes.

  19. Mark Biernbaum Says:

    What is your obsession with me, Richard? Honestly, it’s bordering on scary.

  20. McKiernan Says:

    Is it okay to suggest that it would improve discussion if personal attacks by contrarians resolved their disputes off line ?

    Actually some readers are genuinely interested in the science as well as the clinical histories and dramas as hiv plays out its role in human society.

    More importantly, debate ought take second place to these kind of actual and real scary reports.

    CDC Wants Routine AIDS Virus Testing

  21. Gene Semon Says:

    Part one of In response to Richard Jefferery’s post of 4/20, 1:19 PM and in the spirit of playing nice, here are excerpts from 2 references for his perusal. Even though I have strong reservations regarding the construct HIV disease, these papers mark progress in the right direction. They can be a step towards the synthesis proposed by Celia Farber.

    Reference (1) responds to “( I)t is critical that more efforts are made to unravel the mysteries of T cell homeostasis in humans so that we can fully grasp how and why the persistent immune activation that typically accompanies HIV infection leads to severely compromised memory T cell function and, ultimately, opportunistic infections. ”

    Of interest to all of us, of course, are the author’s conclusions re Ho and Wei. I have taken the liberty of inserting numbers, for clarity, in the penultimate paragraph which reveals a scoreboard: denialists 2, aidschurch 1.

    EXCERPTS:

    “The dynamic basis for T-cell depletion in late-stage HIV-1 disease remains controversial. Using a new, non-radioactive, endogenous labeling technique1, we report direct measurements of circulating T-cell kinetics in normal and in HIV-1-infected humans.”

    “These direct measurements indicate that CD4+ T-cell lymphopenia is due to both a shortened survival time and a failure to increase the production of circulating CD4+ T cells. Our results focus attention on T-cell production systems in the pathogenesis of HIV-1 disease and the response to antiretroviral therapy.”

    “A defining feature of late-stage HIV-1 disease is CD4+ T lymphopenia, but the primary cause of falling T-cell levels remains unclear. Some studies using indirect techniques…have indicated that T-cell proliferation is increased after HIV-1 or SIV infection, whereas other studies…have suggested that CD4+ T-cell turnover is not increased. Each of these indirect methods has substantial and well-known limitations.”

    “The measurement of blood CD4 accumulation rates after antiretroviral therapy assumes that suppression of viral replication reduces destruction of CD4+ T cells to zero and does not affect production rates…Indeed, there is experimental support for the conclusion that T lymphopenia is due to either accelerated CD4+ T-cell destruction or decreased CD4+ T-cell production or both. Because the methods used have generally relied on static measurements, the dynamic balance of this input–output equation has resisted characterization.”

    “Because the circulating T-cell pool was sampled in this study, but T-cell division occurs predominantly in tissues, a definitive biological interpretation of the kinetic results cannot be made at present. Some models, however, can be excluded. The increase in fractional replacement rate and absolute production rate of blood T cells in the HAART group could be explained by (i)prevention of HIV-mediated killing of dividing T cells in tissues, allowing entry into the circulating pool; (ii)reduced adherence of dividing T cells to lymphoid tissues, allowing redistribution of these dividing cells into the circulating pool; or (iii)disinhibition of T-cell proliferation in tissues, allowing greater release of dividing cells into the circulating pool. All of these would result in increased appearance of dividing T cells in the bloodstream; distinguishing between them will require measurement of lymphoid tissue T-cell kinetics and comparison to blood T-cell kinetics.

    “The results are not consistent with other possibilities including prolonged survival of circulating T cells due to cessation of HIV-mediated killing (because the half-life of circulating T cells was shorter, not longer in the HAART Group); redistribution of all cells, non-dividing and dividing alike, from tissue to the circulating pool, due to reduced adherence in tissues (because the fraction of newly divided cells, not just the absolute number, increased in the circulation); and simple escape of T cells from HIV-mediated killing in or adherence to tissues, with subsequent normal survival in blood (because the half-life of the T cells in blood was shorter on HAART). Moreover, the idea that kinetics of circulating T cells after HAART reflect kinetics before HAART (refs. 5–7) is also incompatible with our results.”

    “Although we cannot identify the reason for the failure to increase CD4+ T-cell production (for example, impaired proliferation compared with in situ killing), our results are inconsistent with a highly accelerated destruction of circulating CD4+T cells that overcomes a higher than normal total production rate (‘open drain/open tap’ model, refs. 5,6) or with isolated failure of tissue CD4 production systems (with normal survival of circulating T cells). Thus, identifying the scenarios that are compatible or incompatible with our kinetic results substantially narrows the focus of future investigations.”

    (1)HELLERSTEIN, HANLEY et al. Directly measured kinetics of circulating T lymphocytes in normal and HIV-1-infected humans. NATURE MEDICINE, VOLUME 5, NUMBER 1, JANUARY 1999. 83-89. http://www.kinemed.comwp-content/uploads/nar/Directly_Measured_Kinetics.pdf

    5. Ho, D. et al. Rapid turnover of plasma virions and CD4 lymphocytes in HIV-1 infection. Nature 373, 123–126 (1995).
    6. Wei, X. et al. Viral dynamics in human immunodeficiency virus type 1 infection. Nature 373, 117–20 (1995).
    7. Wain-Hobson, S. Virological mayhem. Nature 373, 102 (1995).

    End of Part One

  22. Gene Semon Says:

    Part Two of In response to Richard Jefferey’s post of 4/20, 1:19 PM.

    In Part One, the first part of the deductive chain: HIV causes CD4 depletion in-turn causing OI is weakened, i.e. casts doubts on HAART works, therefore HIV causes AIDS.

    Reference (2) responds to “My focus, and that of many others, has been on pushing for progress in immune-based therapy that would reduce or eliminate reliance on potentially toxic drugs…”.

    It opens the discussion to the wider world of oxidosis (too many pro-oxidants/dysoxygenation (deranged cellular oxygen dysfunction), i.e. loss of reducing power (electron donators) and T-cell production as covered in Part One.

    EXCERPTS:

    “Glutathione (GSH), a cysteine-containing tripeptide, is essential for the viability and function of virtually all cells. In vitro studies showing that low GSH levels both promote HIV expression and impair T cell function suggested a link between GSH depletion and HIV disease progression. Clinical studies presented here directly demonstrate that low GSH levels predict poor survival in otherwise indistinguishable HIV-infected subjects. Specifically, we show that GSH deficiency in CD4 T cells from such subjects is associated with markedly decreased survival 2-3 years after baseline data collection (Kaplan-Meier and logistic regression analyses, P < 0.0001 for both analyses). This finding, supported by evidence demonstrating that oral administration of the GSH prodrug N-acetylcysteine replenishes GSH in these subjects and suggesting that N-acetylcysteine administration can improve their survival, establishes GSH deficiency as a key determinant of survival in HIV disease. Further, it argues strongly that the unnecessary or excessive use of acetaminophen, alcohol, or other drugs known to deplete GSH should be avoided by HIV-infected individuals.”

    “Glutathione (GSH), like nitric oxide (NO), is a small, ubiquitous molecule that plays key regulatory roles in metabolic and cell-cycle-related functions…(It)is found in millimolar concentrations in all animal cells, also provides the principal intracellular defense against oxidative stress and participates in detoxification of many molecules. GSH depletion, caused for example by acetaminophen overdose, results in hepatic and renal failure and ultimately in death.”

    “Findings presented here link GSH deficiency to impaired survival of HIV-infected subjects and suggest a potential intervention to relieve this impairment…In addition, we have presented preliminary evidence suggesting that oral administration of NAC (N-acetylcysteine), which supplies the cysteine required to replenish GSH, may be associated with improved survival of subjects with very low GSH levels.”

    “Multiple mechanisms may contribute to systemic GSH deficiency in HIV disease, including excessive production of inflammatory cytokines and excessive use of GSH-depleting drugs. In addition, the HIV infection may itself play a key role through the production and release of HIV-TAT (trans-acting transcriptional activator), since TAT blocks transcription of manganese superoxide dismutase, an enzyme that helps prevent OXIDATIVE STRESS, and markedly decreases the activity of glucose-6-phosphate dehydrogenase, a key enzyme in pathways that maintain GSH in its reduced state.” (Emphasis Added)

    Here, it is worth noting that the “role” of “HIV infection”, i.e. cellular transcription of TAT, has nothing to do with “HIV replication”, which directs our attention to the “multiple mechanisms” causing reduced glutathione depletion. Additionally, the “reduced state” is the energy store required for the essential antioxidation process that maintains the redox balance.

    “The preliminary evidence of improved survival associated with oral NAC administration that we report here is consistent both with GSH deficiency being an important determinant of survival in AIDS and with GSH restoration potentially being beneficial. If these findings are confirmed in prospective long-term trials, they will provide the foundation for the use of NAC as an inexpensive, nontoxic adjunct therapy for HIV/AIDS, potentially valuable even in remote locations where only minimal medical supervision is available.”

    I am eagerly awaiting for TAC advocacy of prospective long-term trials and an NAC roll-out in Africa.

    “At a more immediate level, the demonstration here that prognosis worsens as GSH levels decrease suggests that certain precautions be taken to minimize GSH deficiency in HIV-infected individuals. In general, it may be prudent for these individuals to avoid excessive exposure to UV irradiation and UNNECESSARY USE OF DRUGS that can deplete GSHe.g., alcohol and prescription or over-the-counter formulations containing acetaminophen.” (Emphasis Added)

    This paper suggests an energy deficiency, accelerated aging model of AIDS which can account for the processes described in Part One, especially in AIDS risk groups.

    A rough sketch, (sighting shots): damage to lymph nodes, liver and mitochondria plus methemoglobulinemia in the blood result in loss of cellular energy, decreasing T-cell production plus loss of “innate immunity” (inducible defenses possesed by cells). Results: activation of post-death program – normally harmless eukaryotes eat tissues, clog respiratory tract, etc.

  23. Gene Semon Says:

    OOPS, forgot reference:

    (2)Herzenberg et al, (1997) PNAS, V94, 1967

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