Signs he may yet acknowledge his own historic oversight
Larry Kramer has noted via Peter Duesberg that we have been unfair to him in the preceding posts A confused Larry Kramer asks Peter Duesberg to explain his own case,Larry Kramer billed $19,000 annually for drugs “I never took”.
We are alarmed to hear this, and hurry to try to make amends for the unfairness he can point out. We have no special desire to make Larry unhappy, since like many people we find his public persona charming for its warmth, openness, vulnerability, expressiveness, idealism and community spirit, not to mention his urging restraint in the baser pleasures.
Nor do we severely blame him for being misinformed and misleading others in this great issue, since virtually everyone else of influence is in the same boat. The AIDS danger is really the HIV?AIDS meme, which has now infected billions.
Why Larry is unique, so far, in this debate
The prime responsibility for the almost universal misapprehension among the political leaders of the world, that they don’t need to be aware of the Duesberg critique of HIV?AIDS because there is nothing in it, belongs to those who have forcibly peddled bad science so authoritatively for twenty years to people high and low who had no easy means of checking it.
Moreover, it is clear from Larry’s initial concerned reaction to Celia’s article in Harper’s and now his letter to that magazine, printed in copies of the May issue reaching subscribers last weekend and on the newstands now, that he is openminded to the whole idea that there may be something seriously wrong with the HIV?AIDS hypothesis, now that people he respects have raised the issue so convincingly.
We blame Larry only for a mistake which the whole world has made, which is not listening well enough to people of standing and integrity who warned him repeatedly that the science of HIV?AIDS was an empty box, and for assuming that all modern scientists and medical men and women are in some sense godlike creatures who are above error, let alone the mortal sin of sacrificing human lives to maintaining their career paradigm.
But even for his blind faith in scientists and doctors we don’t blame him overmuch, because we imagine that like everyone else whose brain is infested with the AIDS meme he must fundamentally be in terror of what is happening, and naturally cling to the only saviors he sees, that is to say, the health authorities, led by friendly, super bureaucrat and global bug buster Tony Fauci, the best dressed man at the NIH.
As Peter Doshi demonstrated in the April issue of Harpers, the art of raising money from the public by terrorizing us with new bugs such as the flu virus is considered an official strategic weapon in the government health game at the CDC and a skill worth instructing in lectures.
In a predicament where your very life is threatened by a lurking invisible microbe, as Larry has long believed, ideas rule emotions and vice versa, and in a career artist, whose stock in trade is the emotions created by ideas, this symbiosis is almost a professional qualification.
In other words, there are few people more likely to come down with the brain infection of the AIDS meme, one of the most powerfully insidious and infectious memes on the planet, than a poet and playwright.
So we actually congratulate him for showing an openminded willingness now to consider a different point of view, which is an attitude shown by no other leading figure in this arena so far. If anything does happen politically to move this mountain of a paradigm, Larry Kramer will be able to take some of the credit, it is clear.
A correction in response to Larry Kramer
He has three complaints. First, the publishing of his note was an invasion of privacy. Secondly, Tony Fauci was not the facilitator of his liver transplant. Thirdly, he never had Hepatitis C.
Our answers in short are (a) if he thought the email was private, we apologise, but the material we reproduced was only the same as he has often said in public, even as testimony to the FDA. Duesberg did not reveal the truly personal mail he sent him, in further correspondence, merely the public level intial query; (b) we certainly accept his correction that Tony Fauci was helpful in the initial treatment of his liver disease but didn’t arrange his transplant in any way, and we apologize for saying that, and have corrected it; and finally (c) we never did say that he had hepatitis C, we just mentioned it as one of the possibilities which might have caused liver damage when he said he never took drugs, which we took to mean all drugs, though he may have meant simply recreational ones. Larry Kramer does not have hepatitis C.
On the privacy issue, we did reproduce what Larry wrote to Duesberg initially only because it was purely public material that he had mentioned many other places, including testimony to the FDA. But since we feel that email privacy is an increasingly knotty issue these days, we discuss it further here, but hide the section because it is not directly relevant to the blog theme, which is the appalling neglect of the scientific literature by virtually everybody in HIV?AIDS, from scientists and doctors to reporters, activists and patients.
Larry writes that he thought his email to Duesberg was a private exchange. This complaint is one to which we are sensitive. We don’t much like the habit people have of too freely copying our email to people we have never even met, and we were brought up on the principle that gentlemen do not read other’s private correspondence. We certainly wouldn’t normally want to make public anything written on the firm understanding of privacy. This is especially true in this case, since Larry Kramer was finally reaching out to Duesberg to learn more, and this may be one of the more important events in the history of HIV?AIDS.
In this case, however, nothing was said in the email about confidentiality, and Duesberg forwarded it to us without any proviso. As it happens we emailed him back anyway regarding the privacy issue, saying we assumed that his forwarding the email to us meant that we could quote from it, unless it mentioned something personally compromising or embarrassing.
We never got a reply, so perhaps we shouldn’t have gone ahead. But it definitely seemed a publicly quotable exchange in tone and content, and Larry Kramer’s experience in dealing with HIV positivity is an extremely important case that he has often testified on in public.
Here is what Larry said again, for reference. This is all we quoted from him:
would you explain something to me. i never used poppers. i never took drugs. i never had any chemo. i do not suffer and never have from malnutrition. i did not start taking anti-hiv drugs until 2001 when i got my liver transplant and they were required. i tested positive in 1987. you say these are the causes of hiv infection. i am hiv infected. i have and had many friends in the same boat, who simply do not fall into your criteria.
In other words, a set of facts about his own case, and that of many friends, which he asked Duesberg to explain in the light of his own view.
Most of this information appears to be wrong, however, as we discovered when checking on the Web, where it is contradicted by other things Larry has said in the past. This was the point of our post ie that Larry seemed to have an unreliable memory, and in general seemed to be too casual about the scientific and medical facts of the matter, which he was asking Duesberg to comment on, and it seemed to imply that he had left this responsibility to his doctors, mastering only the rationale of the drugs they give him.
In other words, it seemed to be another sign of how he has partly abdicated the leadership of his community in HIV?AIDS to conventional doctors and scientists, and ignored the many efforts made to warn him that their authority was questionable, and to get him to look at the other side of HIV?AIDS, talk to Duesberg and read his papers.
Later, however, we found other testimony which showed he has paid a lot of attention to the topic - everything but what Duesberg had to offer. Indeed Kramer seems to have set a very good example in thinking and checking for himself in guarding against the toxicity of drugs, even without believing they are the chief cause of HIV?AIDS among gays, as Duesberg has long insisted.
In making this point we thought it best to quote his own words, and now he asserts that they were private, though without making a big issue out of it. and without specifying what information he considered private. Well, we apologize, though in reviewing it again, we have to say that we still don’t think it deserves that status. After all, the contact was initiated by Larry, in a dispute of public concern, with a scientist who is the prime source of information on the other side of the position Larry has long taken himelf. Larry called upon Duesberg to inform him of his reasoning, and he presented him with the facts of his own case, which he has already vouchsafed, several times in public. These facts proved to conflict with his own previous statements on record.
So we don’t think it is private to the extent it deserves locking away from public inspection. In fact, the opposite. Of course what Larry is really saying is that he didn’t expect it to be reviewed publicly and critically. But this issue is a matter of life and death for many people around the world, including as it happens Larry Kramer, and it is important that it not be muddied by errors in email by between the main figures involved.
The real issue is whether Peter Duesberg breached Larry Kramer’s confidence in revealing the email query to us, and as we have noted, he didn’t. The follow up exchange which was more personal to Larry Kramer he did not forward to us. This is important, because we would not want to give the impression that any email sent to Duesberg on a private basis is liable to be exposed and critiqued in public. There is no reason to think this.
Personally we think that any correspondence in email which is not copied to other by the sender should be kept private unless the sender OKs its distribution. Anything copied to a list is not private. No one is going to write freely if every word they say is going to be going to be posted on a blog, for sure, given the illbred and irrstional responses the Web often generates.
That said, however, we recognize that the new Web world is sweeping away these niceties like beach houses in a tsunami. Recent news stories show that, for all practical purposes, it is vain to assume privacy of anything at all in email or on the Web. Even if a strong notice to that effect is posted at the top, PRIVATE AND CONFIDENTIAL - NOT TO BE COPIED, it is bound sooner or later to leak, either through someone pressing the wrong key or because it is a matter of strong group interest. Secrets are as badly kept on the Web as in live gossip, or worse. Since Email and Web records are permanent, stored in computers all over for ever, it is folly to write anything which you wish to disown later.Larry Kramer billed $19,000 annually for drugs “I never took”
But there is something else at work in this case. We don’t think it should be overlooked that Larry is writing not to an established friend but to a man that he has helped, unwittingly or not, to torment for twenty years. Unfortunately Peter Duesberg is not someone he has supported in that scientist’s Olympic, self sacrificial effort to bring truth and light to this life and death issue. Instead, he has compounded Duesberg’s experience of professional ostracism, which, the scientist has said, has been the most painful penalty exacted for his scientific integrity in saying publicly what he reasons to be true.
Duesberg’s difficult and morally and scientifically outrageous public rejection, which has raised a huge obstacle to his own research, has been magnified by the unresponsiveness of Larry Kramer. As political leader, he could have acted earlier to change everything, simply by listening to the Duesberg side at all.
Over the years he has instead chosen to pal around with Dr Fauci and say that any questioning the science of HIV?AIDS was “beyond any intelligent comprehension”, as quoted in our last post, referring to ACT-UP San Francisco’s unusually disruptive activism in support of questioning HIV theory.
It is a tragedy of HIV?AIDS that Larry, the great questioner of officials and drug companies, did not as far as we know show any serious move in Duesberg’s direction earlier, any serious interest over two decades in attentively examining what Duesberg has said about HIV?AIDS. Instead, in odd contrast to his alertness to the possibility of HIV drugs ruining his health, we have to note his continuing neglect of truthseeking in a life or death issue, where even though his own life is at stake he has played a leading role in denying re-examination of the central premise. But we salute his reaching out now to Duesberg, and his new openmindedness about the problems with HIV?AIDS science.
Dr Fauci did not arrange for Larry to jump the liver queue
Larry primarily writes to say that we have mistakenly written that Tony Fauci helped him win a liver transplant, and this is not the case. We accept that completely. However, the rapprochement between the two is legendary in the field, an unfortunate one if it has kept Larry from evaluating what Duesberg had to say without prejudice, which seems likely.
“You have to remember that for the first six years, no one paid much attention to AIDS in Washington,” said Larry Kramer, an ACT UP co-founder and playwright, who once called Fauci a “monster” and an “incompetent idiot.”Now 20 years into the AIDS battle, Fauci has the grudging respect of Kramer and other activists, a testament to both his scientific and political skills.
Fauci was able to turn them around by seeking their input. When protesters demonstrated at his office at the National Institutes of Health (NIH) in Bethesda, Maryland, in the late 1980s, he invited them up to talk. “If you got beyond the theatrics and listened to what they were saying, a lot of what they were saying made sense,” Fauci said.
CNN 2001
A warrior in the AIDS fight never rests
(CNN) — During the early years of the AIDS scourge, activists took to the streets, protesting what they felt was the U.S. government’s inaction in the face of the deadly epidemic.
Among the targets of gay health groups and the AIDS Coalition to Unleash Power (ACT UP) was Dr. Anthony Fauci, the nation’s lead scientist in the AIDS/HIV fight. These groups frequently called Fauci and other researchers “murderers” for responding too slowly and even burned effigies of them.
“You have to remember that for the first six years, no one paid much attention to AIDS in Washington,” said Larry Kramer, an ACT UP co-founder and playwright, who once called Fauci a “monster” and an “incompetent idiot.”
Now 20 years into the AIDS battle, Fauci has the grudging respect of Kramer and other activists, a testament to both his scientific and political skills.
Fauci was able to turn them around by seeking their input. When protesters demonstrated at his office at the National Institutes of Health (NIH) in Bethesda, Maryland, in the late 1980s, he invited them up to talk. “If you got beyond the theatrics and listened to what they were saying, a lot of what they were saying made sense,” Fauci said.
Still, it was difficult for his family not to take the attacks personally, admits his wife, Christine Grady. “I thought they were unfair because I knew how hard he worked and how dedicated he was,” said Grady, a former nurse and a bioethicist who also works at the NIH. “And some of the accusations were: ‘He doesn’t care about this; he’s not doing enough; he’s a killer.’ ”
Fauci’s strategy of bringing advocates into the decision-making process worked, Kramer said, and won him the support of AIDS activists. “Letting the patients in, so to speak, was one of the smartest things anyone could have done, or else there would have been revolution, havoc,” Kramer said.
Several months after Fauci first met with protesters, he unexpectedly ran into Kramer at an AIDS conference in Montreal, Canada, in 1989, and the two men began to discuss their differences. “We had a nice talk, like two old warriors,” Kramer said, laughing.
These discussions eventually led the NIH to begin a plan to speed up the introduction of new AIDS treatments. The practice, called “parallel track,” allows AIDS patients — who have exhausted all other limited treatments — unprecedented access to experimental medications not yet approved by the U.S. Food and Drug Administration.
Reflecting back on the evolution of their relationship, Kramer said, “We’ve been in this together for over 20 years, and we’ve both aged 20 years and matured and grown to respect each other’s positions a lot more, which have changed a lot.”
Preparing for the epidemic
As director of the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) since 1984, Fauci has been at the forefront in the national effort to conquer AIDS. Under his leadership, the NIAID has grown from the sixth-largest to the third-largest NIH institute, with a $2.4 billion annual budget.
“The all-around multidimensional component of his work in the disease is not surpassed by anyone,” said Dr. Robert Gallo, another well-known AIDS researcher and co-discoverer of HIV.
Hard work, organizational skills and discipline have served Fauci well in his 33-year career. He prides himself on excellence and gives credit to the Jesuits who taught him in his youth.
“I often talk about the fact that I’ve been trained for many years by the Jesuits,” Fauci said. “And they’re very, very well-recognized for the kinds of qualities they try to impart upon the people they teach — you know, things about economy of expression, precision of thought, knowing what you’re doing, what is the question you’re asking.”
Anthony Stephen Fauci was born December 24, 1940, in Brooklyn, New York. He grew up in the Bensonhurt section of the borough, where his father, Stephen, was a pharmacist and his mother, Eugenia, a homemaker. As a teen, Fauci commuted to Manhattan, where he attended Regis High School, excelling academically and playing on the basketball team.
He won a full scholarship to the College of the Holy Cross in Worcester, Massachusetts, and majored in Greek, Latin and philosophy, earning a bachelor’s degree in 1962.
He received his medical degree from Cornell University Medical College in Ithaca, New York, in 1966 and then completed an internship and residency at the New York Hospital-Cornell Medical Center in New York City.
In 1968, he joined the National Institutes of Health, the focal point of medical research in the United States, as a clinical associate in the Laboratory of Clinical Investigation at the NIAID.
His work was excellent preparation for his eventual role in the AIDS fight. He rose through the ranks, studying the effects of infectious diseases on the regulation of the human immune system. By 1980, he had become chief of the NIAID’s Laboratory of Immunoregulation, a position he still holds.
He helped pioneer therapies for formerly fatal diseases such as Wegener’s granulomatosis, which is characterized by inflammation of blood vessel walls; polyarteritis nodosa, an autoimmune illness that affects arteries; and lymphomatoid granulomatosis, which causes the deterioration of the veins and arteries.
Having ‘the absolutely perfect job’
However, Fauci found his calling in June 1981 after reading an article in the CDC’s Morbidity and Mortality Weekly Report on cases of a strange infectious disease affecting gay men. The report would change his life. By the year’s end, he was turning his lab into a research center for the disease that would become known as AIDS.
“Every once in a while, one is privileged to meet somebody who you know is in the absolutely perfect job at the time for his particular skills,” said C. Everett Koop, U.S. surgeon general from 1981 to 1989.
Fauci and his colleagues were among the first to recognize that the body’s own activated immune system is the engine that drives HIV, the virus that causes AIDS.
But his most notable contribution to scientific literature appeared in the journal Nature in 1993, when he reported that HIV infection is never latent in the body but always lurking in the lymph nodes.
“If you look at the lymph node of HIV-infected individuals, those people have virus that’s alive, well and replicating even during the period of what we were calling the clinically latent period,” Fauci said.
The finding was significant, Gallo said, because it meant “there’s no time to relax.”
“I think it unified thinking that therapy should be given throughout the period, even when people are feeling well,” Gallo said. “And it pointed to the lymph nodes as a terrific site of virus replication and focused some research direction toward the tissue as opposed to simply looking at the blood.”
Fauci’s contributions have helped to change the course of HIV/AIDS research. As a result, scientists no longer think in terms of eradicating the virus but instead focus on the long-term control of HIV. And research continues on a way to block transmission of the virus via a vaccine.
In addition to his research and administrative roles, the physician-scientist also displays the skills of a savvy politician. Fauci regularly testifies before Congress seeking funding for the NIAID and educating lawmakers about the HIV/AIDS epidemic.
“I’ve never seen a time,” said U.S. Rep. Nancy Pelosi, D-California, a member of the House Appropriations Committee, “when Dr. Fauci came before a committee of Congress where he has not left the panel better informed and impressed by his credentials and his commitment to finding an end to this terrible scourge.”
Taking time out for family
A medical doctor by training, Fauci still makes rounds, seeing patients at least once a week at the NIH’s Warren Magnuson Clinical Center. He also is the main editor of Harrison’s Principles of Internal Medicine, a widely read medical textbook. And he is credited as the author, co-author or editor of more than 1,000 scientific articles.
An admitted workaholic, he arrives at the office before 7 a.m. Fauci frequently puts in an 80-hour week, including working on Saturdays. His myriad professional duties have cut in to the amount of time he spends with his family.
“I would not like to be his wife,” Kramer said, laughing. “A woman of great patience.”
Not surprisingly, he met his wife, Christine Grady, at the bedside of a patient. Able to speak Portuguese, Grady was the interpreter for an HIV patient from Brazil. She assured Fauci that the patient would follow the doctor’s strict orders to rest, but the patient actually said he was planning an outing to a Brazilian beach.
“A day or two later, Dr. Fauci came to me and said, ‘I’d like to see you in my office at the end of your shift,’ ” Grady recalled. “And I thought, ‘Oh my God, he knows what happened!’ ”
But Fauci didn’t reprimand her; instead, he asked her out on a date.
Now married for 16 years, the couple have three daughters, ranging in age from 15 to 9. Fauci picks the girls up from gymnastics in the evening when he leaves work, and the family eats dinner together at around 9:30 p.m.
“We’re ordinary people, trying to raise a family,” Fauci said, “and we happen to be caught up, both of us, professionally in one of the most historically significant epidemics in the history of mankind.”
At 60, Fauci shows no signs of slowing down.
“I think any other person might have contributed the service that he has done and then said, ‘OK, I burned out, now I’m moving on,’ ” Pelosi said. “But he seems to be growing — rather than growing tired of it.”
And his peers see a continued strong role for Fauci.
“He’s got more history yet to make, and he will,” Gallo said. “At this point in time, I certainly think he’s the greatest science administrator, combining both scientific leadership as well as science, that I have ever seen.”
But Fauci’s achievements don’t seem to faze him.
“It’s tough to get impressed with what you do,” he said, “when you’re in the middle of an engagement, a war, if you want to use that metaphor, in which this foe or enemy that you’re fighting is galloping uncontrolled throughout most of the world.”
How Tony came to Larry’s play attacking him, and how the two embraced in the lobby afterwards, makes a touching legend:
Fauci, meanwhile, has won round many of his critics in the activist community. His most complicated relationship has been with Larry Kramer, the writer who helped form protest groups ACT UP and Gay Men’s Health Crisis and who used to regularly call Fauci a “monster” and an “incompetent idiot”. In 1991 Kramer wrote a play called The Destiny of Me in which an Aids patient spends much of his time attacking his physician, a man called Anthony Della Vida - Anthony of Life. No prizes for guessing who he is based on. “The mystery isn’t why they don’t know anything, it’s why they don’t want to know anything,” the lead character shouts.Gamely, Fauci turned up to the premiere at the Lucille Lortel Theater in Greenwich Village. After the show, the two men met in the lobby and embraced. Kramer was overheard to say, “Will you still take care of me? Will you still be my doctor?” Fauci replied: “I will always take care of you Larry.”
That’s from this article, a good rundown of Tony’s comet like progress through the HIV?AIDS uni