Articles

In Memoriam, Lambros Papantoniou

by George N. Pavlakis, Rockville, MD USA

What do you do about someone who claims to be an expert, serving up half-truths, twisting the facts in credible-sounding sentences and misleading a patient? There must be some rules that apply to someone who professes to be an expert and induces patients to stop their doctor-prescribed medication. These must be applied to prevent harm to more patients. And what if these actions lead to the patient’s death?

Such is the case of Lambros Papantoniou, a journalist living in Washington, a diplomatic correspondent for several Greek media institutions for more than 30 years and a man loved by all who met him. Even in the higher political echelons of Washington, he was affectionately known as “Mr Lambros”.

During a hospital stay approximately ten years ago, Lambros was diagnosed with AIDS and given anti-retroviral therapy. Following this, his interest in the AIDS problem skyrocketed, and he sought information on it. Although he was a diplomatic correspondent, he reported on AIDS issues several times.

Unfortunately, Lambros attracted the attention of Andrew Maniotis, a scientist and self-proclaimed expert on many fields, and AIDS denialist. Dr. Maniotis is not a medical doctor, nor a pathologist, as he occasionally describes himself. He is not a tenured professor, nor a tenure-track candidate for a higher academic career. At times he denies he is an “AIDS denialist,” but this term accurately describes public opinions. He does not shy away from controversy and publicizes naïve opinions that contradict the established knowledge and medical science, trying to nullify the medical gains of generations of researchers and doctors.

Maniotis claims that Lambros was like a brother to him. With such brothers, who needs enemies? The two men became friends, and Maniotis visited Lambros often in the last few years, his influence growing stronger and stronger, ultimately convincing him that HIV did not exist. Lambros stopped taking his medication and the result was devastating. After his death, Lambros’s family and friends found his medication in his refrigerator, untouched since 2007. Instead of his life-saving doctor prescribed medicine, Lambros was convinced to consume Maniotis-promoted vitamins.

During 2007, increasingly influenced by Maniotis, Lambros became more aggressive in interrogating scientists and government officials about AIDS. In his attempts to discredit Dr. Robert Gallo, Maniotis urged Lambros to seek an interview with Gallo, hoping to confront him with an AIDS denialist agenda and publish articles containing slander and misinformation.

Dr. Gallo took the bait and spoke with Lambros openly and frankly. To his credit, Lambros published a series of articles in which he reported on the issue ethically and to the best of his ability. Undaunted by this failure, Maniotis intensified his efforts to convince Lambros of his outlandish ideas on AIDS. Lambros was finally convinced and published an extensive interview, in which Maniotis disputes all scientific facts about HIV and AIDS, advising HIV positive people, like Lambros himself, to stop taking their doctor-prescribed medication and to rely on vitamins and other unproven methods.

Unfortunately, Lambros’ non-scientific background and his personal vulnerability as an HIV positive person got the best of him, and he became more and more a spokesperson of the AIDS denialists, putting his complete trust in Maniotis.

This trust eventually cost him his life. He simply stopped taking his medication. Already hospitalized once, Lambros’s health depended on blocking HIV through anti-retroviral drugs. Without this protection, the virus continues to damage the immune system, until the patient becomes vulnerable to a multitude of common infectious agents, which would ordinarily be blocked by a functioning immune system. With the medication, he likely would have lived a longer and healthier life.

Having finally succumbed to Maniotis’ ‘freindship’, at several White House and State Department briefings in Washington, Lambros asked hostile nonsensical questions repeating the statements of Maniotis verbatim. He asked whether anyone had actually seen the virus. He accused the medical profession of poisoning the “so-called AIDS” patients with drugs.

In retrospect, Lambros’ increasingly erratic behavior can be partially explained by his deteriorating health. HIV ultimately landed him at Howard University Hospital under unclear circumstances. The most likely scenario is that he was found confused and disoriented and was taken to the closest emergency room. He had developed encephalitis, a common outcome of end-stage HIV infection. He was later transferred to Georgetown Hospital, where he died of encephalitis. During his more lucid moments at the hospital, Lambros told his friends he was dying of AIDS.

In the meantime, Maniotis, having the trust of Lambros’s family, was calling both hospitals and arguing about prescribed treatments, accusing medical personnel of trying to kill Lambros, all while denying the existence of AIDS. The doctors found the situation highly distracting and asked that Maniotis does not contact them. The Greek Embassy had to intervene and tell Maniotis to back off.

During this last period of his life, Lambros was clearly very sick and confused, making several statements reflecting this confusion. To their shame, AIDS denialists are promoting these statements on the Internet in order to build up their own agenda, disrespecting the memory of a sick and confused man, and, of course, not acknowledging their part in his death.

“Nobody really knows why he’s gone,” claims Maniotis. But in the end, Lambros knew, and so do we. He died of encephalitis following the collapse of his immune system, an outcome of HIV infection. We know from millions of other cases that, had he taken his anti-retroviral medicine and prevented further damage by HIV, he could have had many more productive years.

Some of us who knew him also feel a bit guilty at times about not being able to protect him more from predators like Maniotis.

Consequently, we feel that along with celebrating his contributions, his achievements, his life of giving, of helping many people in his community, we also need to tell his true story. Lambros was a defender of our democratic ideals, a stalwart defender of the truth, a man who gave freely of himself, his time and the limited money he had, helping countless people in his neighborhood in Washington, in cities throughout the U.S. and in Greece. He is missed even by those he criticized.

We must honor him by not allowing his death to be used to hurt others. We must not be silent, as silence did not become Lambros himself.

As a generation of AIDS activists realized some time ago, Silence = Death.

Constantine and Weiss pinpoint misrepresentations

 

Statements by Professor Niel Constantine and Professor Robin Weiss about the Misrepresentation of their Interviews in “House of Numbers.”

Posted November 23, 2009, to HouseofNumbers.org

The sections on HIV antibody tests in “House of Numbers” contain fragments of interviews with a number of different people, put together in a way that confuses viewers rather than clarifying what HIV testing protocols are and how they work. The editing of the interviews to try to create doubts about the worth of HIV diagnostic assays is surely intentional. Questioning HIV diagnostics is one of the main tactics of HIV denialism.

The talking heads in these sections of the video include an eager-to-please but inexpert woman working in a temporary testing tent in a South African mall, several legitimate scientists, and HIV denialist Liam Scheff and filmmaker Brent Leung. The section jumbles together bits of speech about the use of HIV antibody testing for different purposes—for screening the blood supply, for screening individuals for HIV infection and confirmatory testing, for diagnosis and for prognosis. It also scrambles remarks about different generations of tests; about tests of different qualities—those manufactured under FDA oversight and those produced in uncontrolled conditions; about different types of HIV antibody tests—conventional and rapid tests, ELISA and Western Blot; and about the use of these tests under different countries’ government protocols—Germany, South Africa, Britain, the USA. The resulting mess of words creates confusion – as it was intended to.

The history, variety, and protocols of HIV antibody testing can be confusing to non-experts. Leung and his team have exploited this in the film. But any of the legitimate scientists or clinicians in the film, asked a clear question by an ethical interviewer who would try to present their views accurately, could easily explain how HIV antibody testing works, what protocols are used to maximize accuracy in different places and at different times, the distinctions between screening and diagnostic assays, the differences between ELISAs and Western Blots, and so on. But Brent Leung sought to confuse, not clarify. He wanted to make it seem like the tests are unreliable and that the scientists he interviewed didn’t know disagreed with each other about HIV tests. The reality is very different. HIV antibody tests are extremely accurate, and various confirming protocols (two or three different types of tests) are used in different places.

Two scientists who were interviewed by Leung, then edited to appear as if they held antagonistic views, are Niel Constantine, Professor of Pathology at the University of Maryland, and Robin Weiss, Professor of Viral Oncology in the Division of Infection and Immunity at University College, London. Professors Constantine and Weiss both say that their interview footage as edited misrepresented what they know and what they said. In fact, contrary to the impression created in “House of Numbers”, they agree with one another about the nature, value, and accuracy of HIV antibody tests. Here are their statements.

Dr. Constantine’s Statement

“What Mr. Leung has done is take our statements completely out of context. For example, he and I were discussing the use of rapid HIV tests and their accuracy. I explained that the tests were excellent, but that some individuals were assembling rapid HIV tests from individually purchased components and making these tests in their garages for sale. Such tests, that had not been subjected to the quality assurance measures required by organizations such as the FDA, were inferior and should not be used. That is, only tests that were approved by expert organizations should be used. Hence, my statement in the film “Now if I tell you that the test you took was lousy and didn’t mean a thing.” Mr. Leung used this to imply that I was stating that HIV tests were useless.”

— Niel T. Constantine, Ph.D., Professor of Pathology, University of Maryland School of Medicine

Dr. Weiss’s Statement

“The sound bites were extracted out of quite a long interview with me and presented out of context. In my recollection (I don’t have a tape of the interview) Leung was pressing me about HIV antibody tests in reference to screening blood donations. When I said ‘I don’t think the Western Blot is a useful diagnostic test; I don’t think it’s worth doing’, I was referring to relatively high throughput screening for blood banks, and in the mid 1980s we did not yet have commercial dip stick Western Blot kits available. In retrospect, it would have been better for me to say: ‘I don’t think the Western Blot was a useful primary screening test’.

“I also cited what I regarded as a dogma that a Western Blot test was essential as a confirmatory test; ELISA tests made by two different manufacturers can also provide a confirmed result. For instance, in some UK labs the Wellcozyme ELISA using a competition format was used for primary screening and was then followed up with a confirmatory assay using the Abbott standard direct-binding ELISA instead of a Western Blot.

“It strikes me that similar false contrast and out of context quotes have been crafted together throughout the programme. Furthermore, Leung doesn’t seem to understand or acknowledge that doubts about the precision or reliability of tests that were devised as research tools in 1984 (the first year in which we could grow HIV in reasonable amounts in the lab) really have little relevance to the reliability of subsequent mass produced commercial tests, which had to go through extensive quality control before they were marketed or used in clinics and blood banks. It’s rather like saying that Roentgen’s original fuzzy X-ray pictures are a valid reason for debunking today’s radiological imaging systems for hospital diagnosis.”

— Robin A Weiss, Ph.D., Professor of Viral Oncology, Division of Infection and Immunity, University College London

 


 

The following text is an annotated transcript of the sections of the video about HIV antibody testing, to provide a context for Professor Constantine’s and Professor Weiss’ statements. Annotations in italics.

 

<

p class=”MsoNormal” style=”margin-top: 0px; margin-right: 0px; margin-bottom: 0.0001pt; margin-left: 0px; padding: 0px;”>Scene: Brent Leung is getting an HIV test in a South African mall.

African woman tester: “We always say to our clients: even if you have tested here, you can go to other centers and go and verify your test. We cannot say you’re 100%.  Because you find clients going from area to area doing these tests, and they come with stories that I was negative at a certain area and positive with you.”  She seems to be talking about people who are HIV+ testing repeatedly at different sites in hopes of getting negative results. 

Leung: “And how do they decide if they are positive or negative?” 

Tester: “We cannot tell, because we are using a rapid test.”  This answer doesn’t mean the rapid test is useless, but that it requires confirmation. 

Audio: Sinister background music. 

 Leung, narrating to impose a particular interpretation on the interview snippets:   “It occurred to me that perhaps the HIV epidemic is reported to be so widespread in South Africa and other poor nations simply because they use these inaccurate tests.”

Image: flooded African shantytown.

James Chin, MD, MPH- Chief of Global HIV Surveillance World Health Organization 1987-92: “There’s the saying that if you knew how sausages, what sausages are made of, most people would hesitate to sort of eat them because they wouldn’t like what’s in it; and if you knew how HIV numbers are cooked, uh.. or made up, you would use them with extreme caution.”

This is a completely different topic—how HIV statistics are estimated—but the insertion of this sentence here makes it seem that Chin is discussing HIV tests.

Caption: London, England.             View of London, Thames from above.

Leung: “I decided to investigate HIV testing protocols used throughout the developed world.”

Harold Jaffe MD, Director, CDC AIDS Division 1992-95 Head of Public Health Dept. Oxford 2004- Present: “When we are testing people for HIV, the first thing we do is a screening test and it’s usually a test called the “ELISA” Jaffe’s sentence is cut off here.

Niel T. Constantine PhD- Director, Clinical Immunology Institute of Human Virology: “But there are also now available rapid assays that can be used as screening methods.”

Liam Scheff, HIV denialist: “Because they’re faster, and we all know, faster and cheaper is more efficient.” 

And people don’t need to wait two weeks for highly accurate results. Is this bad?

Claudia Kücherer, MD, Molecular Biologist, Robert Koch Institute, Germany: “If an ELISA is positive, it does not mean that the patient is HIV positive. So that’s a problem.” But what did she then go on to say as an explanation of this statement? We are not shown, as Leung only manipulates sound bites.

Robin Weiss PhD- Professor of Viral Oncology University College London: “If we’re using antibodies as a screening test to tell who is infected or not, uh, very occasionally you can get false positives.”

Niel T. Constantine: “So screening tests by themselves should not be used as a definitive measure of infection; that’s why we use a screening test to pick up all the cases, but we use a confirmatory test to eliminate any false positives.

Back to the South African testing booth:

Tester: “Take it easy… I’ll pierce at the site.” She pricks Leung’s finger.

*Leung [voice over]: “It should be emphasized that most of the developing world uses only screening tests to confirm an HIV diagnosis; there are not confirmatory tests.” Leung is presumably referring to the use a second ELISA test from a different manufacturer, in contrast to a Western Blot, for confirmation. This is a highly accurate protocol and necessary where resources are limited.

 


 

Robert C. Gallo: “This has a margin of error done properly that’s extremely low. In other words, it’s one of medicine’s better tests.”

 

Robin Weiss: “I don’t think the Western Blot is a useful diagnostic test; I don’t think it’s worth doing.”  See Dr. Weiss’s explanation of this sentence.

Niel T. Constantine: “Did he give a reason? You know anybody can say anything, I think it’s stupid to drive a car. But come on you gotta give a reason!”

In the background, Leung starts to say, “He said…”

Robin Weiss: “It’s a useful prognostic test. Once you know that someone is infected, then you can follow their antibody responses well with Western Blots.” This is a true, accurate statement.

Niel T. Constantine: “I’d say he’s absolutely wrong, it has a complete usefulness.” With what statement is Professor Constantine disagreeing here? The film doesn’t show

Footage pans backs and forth between the two men in a blurred, swinging motion, juxtaposing them to impose a sense of concurrency and argument.

Robin Weiss: “You don’t need a Western Blot! And it’s become a dogma in HIV research that you need one ELISA followed by a western; you don’t. You need two different kinds of ELISAs made in two different formats.” Professor Weiss here emphasizes the need for using two independent tests to obtain confirmation of HIV status. Most countries still use an ELISA followed by a Western Blot, a long established and highly reliable procedure. Professor Weiss simply says that there is an alternative method that could now be used and expresses his opinion that using two ELISAs is the better option.

Leung: “Would you ever want to confirm somebody is positive using just ELISAs? “

Claudia Koshered: “No. Never. It’s not…It’s against the rules, it’s against the recommendations.”  In Germany, that is true, but not everywhere. Different nations make different decisions on many aspects of health care all the time.

Liam Scheff: “It’s a turbulent sea of argument about how can we use this test, when can we use this test, why does this test have no standard?”  Tests made by different manufacturers are slightly different, and are read differently. However, all approved tests are very accurate.  It is a profound logical error to say that if screening or measuring tests vary, the thing they screen for or measure does not exist

Niel T. Constantine: “Now if I tell you that the test you took was lousy and didn’t mean a thing, would that make any difference for everybody to hear?” See Dr. Constantine’s statement about the proper context for this comment: he is referring to bootleg tests that are not reliable.

Leung: “It’ll make a difference for me.”

<

p class=”MsoNormal” style=”margin-top: 0px; margin-right: 0px; margin-bottom: 0.0001pt; margin-left: 0px; padding: 0px;”>Niel T. Constantine: “Yeah I know.”

 

Science, pseudoscience and professional responsibility

by Dr John Moore, PhD (Originally published by health-e)

Surveys have consistently shown that over 40% of Americans do not believe in evolution. It is not surprising, then, that our society is vulnerable to being fooled by people who misrepresent scientific or historical facts.

We are now all too familiar with the crazed activities of the ‘Birthers’, an ad hoc, right wing political group refusing to accept President Obama was born in the United States. Earlier this year, we saw media coverage of the insane views of a clique that refuses to accept American astronauts walked on the moon 40 years ago. The “9/11 Truth Movement” flourishes on the internet, arguing that the World Trade Center and the Pentagon were not hit by hijacked jetliners, but were blown up by the CIA at the behest of Israeli intelligence. Conspiracy groups like these usually do little real damage to society, although the activities of the “9/11 Truth Movement” foster anti-Semitism and insult the memories of the nearly 3000 Americans who died on 9/11. Unfortunately, other equally bizarre and factually unfounded, internet-based conspiracy groups can, and do, harm, even kill, significant numbers of people. This is not just an American problem, as the ripple effects of conspiracy theories spread worldwide via the internet. Indeed, the most serious consequences of one such group’s actions have been felt in Africa.

A small group of misguided and, in some cases malicious, individuals have long promoted the view that HIV does not cause AIDS or, in an even more bizarre twist of the truth, that HIV does not even exist. An even nastier variation of the theme is that HIV was created by the US government as a device to kill “undesirables”, such as people with black skins or who are gay. None of these opinions is true, and there is not a shred of credible scientific or historic evidence to support them. Unfortunately, the Mbeki administration in South Africa put in place policies based around the premises that HIV is harmless but anti-retroviral drugs are dangerous. This decision caused over 330,000 unnecessary deaths during the first half of this decade. And yet the “AIDS Denialists” even question this death toll, a tactic no different from Holocaust Deniers asking “Did six million really die”. Many Americans and Europeans have also died, persuaded by the “AIDS Denialists” that they did not need to take anti-retroviral drugs to treat their HIV infections. Distrust of the federal government and the medical establishment among African American communities has adversely affected AIDS prevention and treatment programs in the USA, in no small measure due to the crazy belief that HIV was created as a weapon of selective genocide. Indeed, this particular rumor even re-surfaced in the last Presidential election campaign. Real people die real deaths as a direct result of the pseudo-science promoted by the “AIDS Denialists”.

In a similar vein, groups that claim vaccination is harmful have harmed global immunization programs, and thereby caused avoidable deaths worldwide. A conspiracy theory group often called “The Mercuries” has been particularly vociferous in its argument that a mercury-containing preservative found in some vaccines causes autism. There is less mercury in a vaccine shot than in a tuna fish sandwich, and the mercury present in the fish is in a more dangerous chemical form. Overall, a now vast body of solid scientific evidence has proven that autism has no connection whatsoever to any vaccine or vaccine component. This is now settled science within the professional community, which understands that the cause of autism is based in human genetics. But despite the facts, the distrust of vaccines that has been created by “The Mercuries” and other anti-vaccine conspiracy groups is now damaging efforts to counter swine flu by vaccination, both in America and, increasingly, elsewhere. The polio vaccine eradication campaign has been harmed, notably in Nigeria, by rumors that the vaccine is contaminated with dangerous chemicals, or even with HIV, or that it was designed by “white people to sterilize black people”. As a result, this dangerous infection has still not been eradicated from Africa, where it lingers on, killing and paralyzing yet more people.

The mindsets of the “AIDS Denialists” and “The Mercuries” are similar to each other. Both groups are irrational on the science, twisting the facts to a perverse extent and stubbornly ignoring and rejecting all the evidence that speaks against their views. Each group is bolstered by a very small number of scientists whose paper qualifications provide them with a superficial, wafer-thin veneer of academic credibility. The two conspiracy groups contain individuals who will resort to threats of violence and who harass those who dare to speak up against them. A common tactic of both groups is to smear scientists and physicians who recommend AIDS drugs or the use of vaccines as being nothing more than paid tools of the pharmaceutical industry. Yet both the “AIDS Denialists” and “The Mercuries” are supported by promoters of “alternative (i.e., quack) therapies” who have a financial interest in damning approved anti-HIV drugs or licensed vaccines. “Ambulance-chasing” lawyers have also been heavily involved with the anti-vaccine groups, fostering the hopes of grieving parents that they (and the lawyers) might receive a payout from a scientifically ill-informed jury.

The conspiracy theory groups also receive the support of a small, but noisy, subset of media professionals who seem attracted to the personalities involved, smelling stories in the controversies. This has been particularly problematic recently in the anti-vaccine arena, where some American chat shows and right wing news programs have given undue attention to “The Mercuries”. Bizarre as it may seem, the views of medically unqualified Hollywood celebrities are given equal, or even greater, weight on these shows than those of expert physicians and scientists. Science and pseudoscience should never be “balanced” in this way. To make an analogy: if a film star claimed that we should not fly on a jetliner because mercury contamination could make the wings fall off, we would simply laugh, preferring to listen to the views of qualified aeronautical engineers and metallurgists (and to our own experience as travelers). Yet, nowadays, film stars’ views on vaccine composition are given huge weight by some chat show hosts.

The “AIDS Denialists” and “The Mercuries” are no different from the “Birthers”, the moon-landing hoaxers, the “9/11 Truth” members and the Holocaust Deniers in the irrationality of their views and their belief in government conspiracies and cover-ups. Indeed, some members of the various groups flit from one conspiracy-themed web site to another, seeking and finding solace in a variant form of irrationality. One of the very few academic supporters of the” AIDS Denialism” movement also investigates the Loch Ness Monster, Alien Crop Circles and other such fringe or paranormal themes. It would be funny if it were not so tragic.

What can be done about dispelling this kind of damaging nonsense? America has a strong tradition of free speech, so dangerous views will continue to be promoted, however harmful they are to public health and the best interests of society. The internet is the territory of the conspiracist, and it is likely to remain so. But media professionals should not be so unquestioning of the science when they provide airtime or column inches to those with fringe views. Controversy may help sell advertising, but at what cost?

A particular concern is that the ideas that HIV is harmless and that vaccines cause autism have been underpinned by a very few academics or physicians working in American or European universities or hospitals. These “thought leaders” for the conspiracy groups should now be made to face the professional consequences of their scientifically unsupportable actions. Is academic freedom such a precious concept that scientists can hide behind it while betraying the public so blatantly? When the facts are so solidly against views that kill people, there must be a price to pay. Post-tenure review of the progress of academic careers is something the university system could put in place if it chose to. How can bona fide universities justify their employees teaching students, even medical students, that HIV is harmless? How can academic and medical institutions still employ people whose views lead to the deaths of over 330,000 South Africans? Shielding the proponents of pseudoscience by doing nothing is a dereliction of a duty to the public. It is also moral cowardice. It is now time for Africa to speak out and demand action against those who have been responsible for so many deaths on this continent.

The Shameless Rian Malan

by Nathan Geffen, 19 November 2009

In 2001, Rian Malan wrote an article in Rolling Stone questioning the accuracy of HIV tests in order to disparage the evidence of a growing HIV epidemic in South Africa. In 2003 he published similar articles in the Spectator and Noseweek. All these articles were replete with errors. I subsequently debunked the latter two in a January 2004 article.

One of Malan’s errors was particularly serious. He presented miscalculated, massively understated estimates of AIDS deaths which he falsely attributed to Stats South Africa. As I wrote then, the mistake was so serious and obvious that it raised questions about Malan’s basic competence as a research journalist -or more disturbingly- about his motives and integrity.

In Mbeki’s 2004 State of the Nation speech he quoted from Malan and spoke warmly about him. It was not explicitly about HIV, but to anyone following the debate at the time, it was clear that Mbeki was grateful for Malan’s support on AIDS.

In the last year and especially the last few weeks, following the speeches of President Jacob Zuma and Minister of Health Aaron Motsoaledi, state-supported AIDS denialism has been destroyed. If Malan had any shame, he would have stayed out of the public light after supporting an ideology responsible for the deaths of hundreds of thousands of people. But he is shameless and his denialist scribblings have continued (see this rebuttal of Malan by Eduard Grebe in 2007).

His latest appeared on Politicsweb on Friday 13 November. Malan pointed out, correctly, that Zuma and Motsoaledi quoted a wrong and over-stated estimate for the 2008 deaths. The mistake, based on Home Affairs data, was an honest one. In contrast to the untruths in Malan’s articles, it was not in service of a deadly ideology. On the contrary, Zuma’s speech and Motsoaledi’s dense-with-statistics 47-slide presentation, were for the most part superb and demonstrated renewed political will to combat the epidemic.

Yet Malan wrote this jaundiced rant, “This country is full of HIV consultants and researchers and specialist HIV hacks who are paid a lots of money on account of their supposed expertise. The state president says that the Aids equivalent of an atom bomb has detonated among our people AND THERE’S NO REACTION AT ALL FROM ANY OF THEM. They all knew, like I did, that Zuma’s number was bullshit, but they were perfectly happy to let it stand, cos big Aids numbers are good for business, innit? NOT ONE OF THOSE MOTHERS SAID ANYTHING! They think you are stupid and want to keep you that way.”

He also confirmed his AIDS denialism, “In other words, there is no apocalypse. No massive Aids ­related death surge. If anything, death registrations are stable.”

Actually, as I explained in an article on Politicsweb, there has undoubtedly been a massive AIDS-related death surge; we have simply reached the crest of that surge thanks to the ARV programme. And if the programme falters AIDS deaths will grow again. Only a shameless denialist like Malan could tell such an obvious lie – again. He is also guilty of exactly what he accuses others of: distortion of statistics to promote his career. If there is to be a commission of inquiry into AIDS denialism, Malan should be questioned about his motives and actions.

AIDS and mortality in South Africa

 

By Nathan Geffen, 16 November 2009

On 2 November 2009, Statistics South Africa released the latest mortality data, which goes up to 2007 (Stats SA, 2009). This table gives the number of recorded deaths per year:

Year
Number of recorded deaths by Stats SA
1997
317,131
1998
365,852
1999
381,820
2000
415,983
2001
454,847
2002
502,031
2003
556,769
2004
576,700
2005
598,054
2006
612,462
2007
601,033

You do not need to be a statistician to be astounded by this. Recorded deaths have increased over 90% in a decade. Improved death registration and population growth can account for only a small portion of this increase. The vast majority of additional deaths are due to the HIV epidemic. A huge body of evidence shows this. For example, there has been a three-fold increase in TB deaths over the same period and TB is the leading cause of death in people with HIV. Also the age pattern of the deaths –younger instead of older adults comprise the bulk of them– and the drop in the median age of death from 51 in 1997 to 44 in 2007 are consistent with the way AIDS works. (For more detailed evidence see Dorrington et al. 2006, Dorrington et al. 2001 and Stats SA, 2002).

Also noticeable is that the number of deaths appears to have stabilised from 2005 to 2007 and perhaps has even begun to decrease slightly. This is most likely due to the state’s antiretroviral (ARV) treatment programme.
Unfortunately because the public sector programme has not been well monitored and there are numerous treatment providers in the private sector, there is not accurate data on the number of people on treatment. But by using several sources of data, including figures published by the Department of Health, medical aid data and public sector ARV procurement data it is possible to make reasonable estimates. Muhammad Aarif Adam of Sanlam and Leigh Johnson of the Centre for Actuarial Research have made plausible calculations of the number of people on treatment in the middle of each year up until mid-2008, shown in the next table (Adam and Johnson, 2009).

Year
No people on treatment
2001
6,000
2002
15,000
2003
26,000
2004
47,000
2005
109000
2006
229,000
2007
371,000
2008
568,000

The programme began in earnest in 2004 and the stabilisation of the death rate has coincided with it. If you consider that many, perhaps most, of the people on the programme would be dead by now that would easily account for stemming rising deaths. Make no mistake; there has been a massive surge in deaths in South Africa for more than a decade and AIDS deaths continue to be very high; deaths might have stabilised but at a very high number. Life-expectancy declined to the low-50s. At least though, we are implementing the most effective known scientific medical intervention to mitigate the effects of the disease and it now appears that life-expectancy is increasing again.

But many unnecessary deaths occurred because of the delayed rollout of the ARV treatment programme. Two studies have conservatively estimated that former President Thabo Mbeki’s AIDS denialist policies cost well over 300,000 lives (Nattrass, 2008; Chigwedere, 2008). Mbeki did not pursue this deadly policy without help though. Officials in government, civil servants and even some journalists supported his policy, tried to give it legitimacy and for a time succeeded in quashing the demand for a treatment rollout from health workers and AIDS activist organisations, like the Treatment Action Campaign (TAC). Thankfully, we have moved beyond this awful era of South African history.

PS: The last two weeks have seen what I believe is the final death-knell of state-supported AIDS denialism. Both President Zuma and Minister of Health Motsoaledi have delivered important speeches showing their intention to fight the epidemic. On page 35 of his presentation Motsoaledi quoted mortality data for 2008 from Home Affairs which appears to be far too large. I am unaware of how this number was derived and it appears to be an error. In other respects Motsoaledi’s speech was excellent and his mistake is of no great importance.

References

Adam M and Johnson L. 2009. Estimation of adult antiretroviral treatment coverage in South Africa. September 2009, Vol. 99, No. 9 SAMJ

Chigwedere P. 2008. Estimating the Lost Benefits of Antiretroviral Drug Use in South Africa. JAIDS Journal of Acquired Immune Deficiency Syndromes. 49(4):410-415, December 1, 2008.

Dorrington R et al. 2001. The impact of HIV/AIDS on adult mortality in South Africa.

Dorrington R et al. 2006. The Demographic Impact of HIV/AIDS in South Africa.

Nattrass N. 2008. AIDS and the Scientific Governance of Medicine in Post-Apartheid South Africa. African Affairs 2008 107(427):157-176.

Statistics South Africa. 2002. Causes of death in South Africa 1997-2001 : Advance release of recorded causes of death.

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p style=”margin-top: 0.6em; margin-right: 0px; margin-bottom: 1.2em; margin-left: 0px; padding: 0px;”>Statistics South Africa. 2009. Mortality and causes of death in South Africa, 2007: Findings from death notification.

How to spot an AIDS denialist

by Seth Kalichman (Originally published in the New Humanist)

Imagine that you or someone you love just received an HIV positive test result. The news is devastating. After a short time you begin to face the diagnosis. You turn to the Internet for answers. Searching the words “AIDS diagnosis” brings up thousands of websites. A whirlwind of information spins your mind. One credible-looking website, Aids.org, reads: “There is no cure for AIDS. There are drugs that can slow down the HIV virus and slow down the damage to your immune system. There is no way to ‘clear’ HIV from the body. Other drugs can prevent or treat opportunistic infections (OIs). In most cases, these drugs work very well. The newer, stronger ARVs have also helped reduce the rates of most OIs. A few OIs, however, are still very difficult to treat.”

With a click of the mouse, an equally credible-looking site, Aliveandwell.org, asks: “Did you know … Many experts contend that AIDS is not a fatal, incurable condition caused by HIV? That most of the AIDS information we receive is based on unsubstantiated assumptions, unfounded estimates and improbable predictions? That the symptoms associated with AIDS are treatable using non-toxic, immune-enhancing therapies that have restored the health of people diagnosed with AIDS and that have enabled those truly at risk to remain well?”

Which do you trust? Which do you believe? Which would you want to believe? Would you choose to believe there may be hope offered by medical treatments or would you prefer to believe that HIV is harmless? This simple example illustrates the lure of AIDS denialism.

AIDS denialism tells us what anyone would want to hear – that HIV does not cause AIDS and that if you live a “healthy lifestyle” (whatever that is) you won’t get AIDS. None of which is true. In fact, there are an estimated 33 million people in the world living with HIV infection. In 2007 there were nearly three million new HIV infections and two million people died of AIDS. People are living longer and healthier lives with HIV infection as a result of earlier detection through HIV antibody testing and the remarkable success of HIV treatments. Indeed, countries that launched aggressive testing and treatment programs, such as Brazil and Botswana, have reduced suffering and prolonged life. In contrast, South Africa delayed testing and treatment programs as a result of former President Thabo Mbeki’s AIDS denialism, policies that resulted in over 300,000 unnecessary deaths and over 35,000 infants senselessly infected with HIV. There is no rational basis for disputing these established facts, and yet rejecting the reality of AIDS is the mission of AIDS denialists.

AIDS denialism is one of several incarnations of denialism. All denialism is defined by rhetorical tactics designed to give the impression of a legitimate debate among experts when in fact there is none. Holocaust deniers claim that historians disagree about the evidence for Nazi mass gassings and systematic murder of Jews. Global warming denialists say that climatologists are torn by the evidence about climate change. 9/11 “Truth Seekers”, as clever a piece of branding as “pro-life”, say the collapse of the Twin Towers resulted from controlled demolition. Vaccine hysterics tell us that the science is split on whether vaccinations cause autism. And AIDS denialists say that scientists are in disagreement about whether HIV causes AIDS.

It is easy to be fooled by AIDS denialists. Not only do they tell us what we want to hear, they use methods of persuasion to create the illusion of debate. Just as HIV attacks our immune defences that would otherwise destroy it, AIDS denialists appeal to our sense of scepticism. Indeed, AIDS denialists refer to themselves as dissident scientists and sceptics. Denialists misuse science and rely on pseudoscience to call established fact into question. Denialists also exploit what is not known about how HIV causes AIDS to suggest that HIV may not cause AIDS at all. The more sophisticated efforts of AIDS denialism, like the “documentary” House of Numbers, are most disturbing because they use every trick in the denialist playbook to juxtapose pseudoscience with established science. The best way to recognise AIDS denialism is to know their common tricks of persuasion.

There are two sides to every debate. But just asserting there is a debate does not mean there is one. AIDS denialists rely on a small band of fake experts, mostly retired academics who proclaim that HIV does not cause AIDS. There is not a single instance of an “expert” offered by AIDS denialism that has ever actually done research on AIDS. In rare examples, denialist experts have a history of credible science only to have later gone off the deep end. The most credentialled AIDS denialists are Nobel Laureate Kari Mullis, who developed the PCR technology for sequencing the genetic code, and Peter Duesberg, Professor of Biochemistry and Molecular Biology at the University of California-Berkeley and member of the National Academy of Science. Although credentialled, neither is credible. Aside from saying HIV cannot cause AIDS, though he has done no research on AIDS, Mullis has shared his experiences on LSD and encounters with an alien fluorescent raccoon, and Duesberg, who did important work on cancer in his early career, now claims that there is no genetic basis for any cancer. Both have demonstrated an outright disregard for scientific evidence.

But beyond these two high-profile mavericks most of the “experts” in AIDS denialism are out-and-out pseudoscientists. My favourite is Henry Bauer, Emeritus Professor of Chemistry and Science Studies at Virginia Tech University, who claims to have proven that HIV cannot cause AIDS. Professor Bauer is also a self-proclaimed international expert on the existence of the Loch Ness Monster. Detecting fake experts requires looking beyond college degrees and achievements from decades gone by. Do not confuse credentials with credibility. Saying that there is no genetic basis for any cancer, describing extraterrestrial experiences, and searching for big green monsters in Scottish waters should matter when examining the credibility of someone making important claims about the causes of a devastating disease.

In the 1980s legitimate scientists disagreed about AIDS. For AIDS deniers, everything old is new again. AIDS denialists rely on selected research findings from the days when not much was known about AIDS. The first tests for HIV antibodies were less reliable than current testing technologies. There were early debates about what caused AIDS and good ideas that turned out to be dead ends. The drug AZT was prescribed in massive and often toxic doses. But none of this is true any more. Though there remain many debates in medical science about how HIV causes AIDS, there is no longer a debate about whether HIV causes AIDS. Unfortunately, outdated scientific literature is not purged when new knowledge emerges. AIDS deniers use this information to create the illusion of a live debate. Denialists select old findings that support their flawed logic because they have no evidence of their own. Cherrypicking is another favourite rhetorical technique of denialists. This involves selecting a lone scientific finding, presenting the results out of context, and deploying it as evidence for their own conclusions.

Another popular denialist manoeuvre is to call for a definitive single study, analogous to the creationist demand for a definitive transitional fossil to prove evolution. Peter Duesberg for example, asserts that “There is not a single controlled epidemiological study to confirm the postulated viral etiology of AIDS.” He is right about this. No one scientific study ever “proves” anything. Scientists are cautious to draw conclusions from even a series of experiments. To establish that HIV causes AIDS required countless laboratory, clinical, and epidemiological studies, all converging to a definitive conclusion. There is no single scientific paper proving that HIV causes AIDS, just as there is also no single physics experiment proving that a man could land on the moon, no single study that proves excessive exposure to the sun causes skin cancer or one study that proves smoking causes lung cancer. Rather there are tens of thousands of studies containing a wide range of evidence that, taken together, make an overwhelming case.

AIDS denialists will also demand even more specific evidence, only to change the demand once the evidence is produced. One example of this “pushing back the goalpost” technique was the former Sunday Times journalist and prominent AIDS denier Neville Hodgkinson’s claim that HIV tests are invalid because HIV has never been isolated. When scientists provided evidence that HIV has been isolated, the demand changed; Hodgkinson argued that the isolated virus was “impure”. Denialists now demand that the virus be isolated in “pure form”, that is uncontaminated by proteins. The demand for a pure virus devoid of cellular proteins is impossible to meet as it defies the biological nature of viruses. Such shifting of the grounds of debate allows denialists to claim that they are the ones following the evidence, and it is the AIDS establishment – an alliance of careerist researchers and greedy drugs companies – who are propagating pseudoscience.

All denialism is entrenched in conspiracy thinking. A spectrum of such thinking motivates AIDS denialism, covering everything from a government conspiracy to invent HIV for genocide against Africans and gays to a pharmaceutical industry conspiracy to sell toxic drugs. One of my favourites is the flamboyant conspiracy thinking of vitamin entrepreneur Matthias Rath, who said “The people and the governments of the world have to decide whether they are ready to stop being manipulated by the pharmaceutical industry and embrace instead the scientific knowledge that is now available to fight the global HIV/AIDS epidemic with effective, safe and affordable natural means.” The “natural means” Rath is referring to, of course, are the useless vitamins that he peddles to the poor. Though Rath has now been prevented from marketing his phony cure in Africa, and famously lost his libel suit against Ben Goldacre when he exposed his fraudulent practices, great damage was done and he continues to agitate for AIDS denialism through his spurious Health Foundation.

But while some denialists are clearly charlatans out to make a quick buck out of other people’s misery, many are perfectly genuine, which is what makes them especially dangerous. They can be persuasive because they actually believe what they say. Evidence means nothing to them. Their thought process resembles what psychiatrists call an “encapsulated delusion”, where despite what appears to be otherwise rational thinking there is an intractable maladaptive belief system that is impermeable to contrary evidence. Many of these people have themselves been diagnosed with HIV, and cling to the hope that this is not a death sentence. This adds a particular poignancy to their claims. A potent irony also hangs over denialism; year on year AIDS deniers who have tested positive for HIV succumb to AIDS-related illnesses. The most visible of such cases was Christine Maggiore, the founder of the Alive and Well movement that claims there is no causal link between HIV and AIDS. Maggiore believed that HIV does not cause AIDS even after the AIDS-related death of her three-year-old daughter and right up until her own death of AIDS in 2008. AIDS denialists are therefore a mixed bag of rogue scientists, pseudoscientists, conspiracy theorists, and snake-oil salesmen. There are also vocal AIDS denialist activists, primarily HIV positive people who are in deep denial of their diagnosis and seek the insulating bubble offered by AIDS denialism.

So, what can we do about AIDS denialism? There will always be crazy people who say crazy things. AIDS denialists only do harm when people listen to them. The best defence against AIDS denialism is improved public understanding of science and medicine. We all need to know how to recognise cranks and crackpots and their sinister rhetorical devices. When searching for reliable information make sure it does not rely on old, most likely outdated, sources. Find credible sources of current information and trust them, but keep pressing them with questions. Familiarise yourself with the basic facts of HIV and AIDS and be sceptical of far-fetched conspiracies. Be informed and think critically, but don’t fall for global conspiracy hysteria or accept pseudoscience because that is what you want to hear. We know that drugs companies make huge profits, and that scientists rely on research grants and can be fallible. This does not mean there is a global conspiracy to misrepresent the science. AIDS researchers and the pharmaceutical industry, believe it or not, are in it to save lives.

And finally, hard as it might be for believers in free speech and open debate, if you encounter AIDS denialism, do not enter into a debate. AIDS denialists want to create the impression that there is a debate regarding HIV causing AIDS and debating feeds the illusion. This debate was exhausted years ago. Now it merely serves as a distraction from the ongoing struggle to explain how and why HIV causes AIDS and trying to prevent it. In the words of The Who, and the title of Richard Wilson’s excellent book on scepticism, “Don’t Get Fooled Again”.

To see the AIDS Denialist Hall of Fame, visit the article at New Humanist.

Seth Kalichman’s book Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy is published by Springer/Copernicus – all royalties from the book are donated to buy HIV treatments in Africa.

Warning about pseudo-scientific review of alternative AIDS medicines

A website that is advertised via Google ads, is promoting alternative, unproven and untested medicines for the treatment of HIV. The website is http://www.hivsecrets.com. Upon registering with it, a report titled HIV Alternative Therapies Report is made freely available for download. This report is written by a Ms Shirley Wyand. Ms Wyand has no known expertise in the science of HIV/AIDS.

The report is replete with misconceptions. For example, it states, “Since Western medical science offers no cure and few treatments for AIDS, people living with HIV are open to other options, and a tradition of gathering and sharing treatment information already exists.” On the contrary, antiretroviral treatment is a very effective chronic treatment for HIV. There are also many effective medicines that treat AIDS-related opportunistic infections. There are no alternative treatments for HIV that have been shown to be effective. Indeed, once a medicine is shown to be effective it is no longer an alternative one.

Another example of the report’s misconceptions is that it promotes an untested product called Revivo tea. This products advertisements touting its efficacy for the treatment of HIV have recently been banned in South Africa by that country’s Advertising Standards Authority.

We urge people with HIV to be extremely cautious about following any of Ms Wyand’s advice.