• 2024-03-08

Trust crisis: The public health battle behind "AIDS denialism."

In February, millions of people listened to Joe Rogan's podcast, where he incorrectly claimed that "party drugs" are a significant factor in AIDS. On his show, The Joe Rogan Experience, former evolutionary biology professor turned podcast host Bret Weinstein agreed with Rogan's views: he said that the evidence that AIDS is not caused by HIV is "surprisingly convincing."

During the podcast, Rogan also claimed that AZT (the first drug used in anti-AIDS treatment) kills people faster than the disease itself—this claim, although proven to be false, is still widely repeated.

When speaking to the largest podcast audience in the world, these two men are promoting dangerous and incorrect views that were debunked and completely overturned decades ago.

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But it's not just them. A few months later, New York Jets quarterback Aaron Rodgers, a four-time NFL Most Valuable Player, accused Anthony Fauci, who led the National Institute of Allergy and Infectious Diseases for 38 years, of orchestrating the government's response to the AIDS crisis for personal gain and to promote AZT. Rodgers also described it as a "deadly" drug. Although he made his remarks to a smaller audience on a podcast hosted by a former jiu-jitsu practitioner turned conspiracy theorist, the interview clips were re-shared on the X platform, and the video has been viewed more than 13 million times.

"When I hear such misinformation, I just hope it doesn't get people's attention," said Seth Kalichman, a professor of psychology at the University of Connecticut and author of the book "Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy."However, these remarks and similar statements have already had an impact. They constitute a small but noticeable resurgence of AIDS denialism—a collection of erroneous theories that claim HIV does not cause AIDS or that HIV does not exist at all.

These views were initially put forward by a group of scientists from various fields, as well as many self-proclaimed scientifically related individuals and self-anointed investigative journalists in the 1980s and 1990s. But as more and more evidence refuted their claims, and as more and more AIDS patients were able to extend their lives due to effective new therapies, their assertions gradually lost support.

At least, this was the case until the emergence of the coronavirus.

After the COVID-19 pandemic, the renewed skepticism towards public health figures and institutions has breathed new life into these long-marginalized views. And this influence is far from confined to the dark corners of the internet. The rapidly spreading views online are reaching millions of people—and in turn, this could put individual patients at risk. The concern is that AIDS denialism may spread again like COVID-19 denialism: people will politicize the disease, question its most effective and evidence-based treatment methods, and encourage extremist politicians to use these views as the basis for policy-making. If this trend continues, this movement could threaten the basic knowledge about germs and viruses that underpins modern healthcare and disease prevention, thereby causing dangerous confusion for the public at an extremely disadvantageous time.

Before spreading false information about HIV and AIDS, Rogan, Kennedy, and Rodgers had already promoted fringe theories about the origins of the coronavirus and loudly questioned basic public health measures such as vaccination, social distancing, and mask-wearing."AIDS denialists have come from COVID-19 denialists," said Tara Smith, a professor of infectious disease epidemiology at Kent State University's College of Public Health, who has been tracking conspiracy narratives about diseases and public health. She first noticed this trend in social media groups driven by COVID-19 skepticism, where people began to ask: "If COVID-19 doesn't exist, what else have we been deceived about?"

Kalichman pointed out that the COVID-19 pandemic is a particularly fertile environment for such skepticism, because "unlike HIV, COVID-19 has affected everyone, and policy decisions around COVID-19 have also affected everyone."

She added: "The COVID-19 phenomenon—not the pandemic itself, but the phenomena surrounding it—has provided an opportunity for AIDS denialism to resurface." Denialists such as Peter Duesberg, the now-disgraced Berkeley biologist who first proposed that AIDS was caused by drugs or recreational drugs; and Celia Farber and Rebecca V. Culshaw, who are an independent journalist and researcher, respectively, have both critically written about the so-called "official" narrative of HIV/AIDS. (Farber told MIT Technology Review that she prefers to use "AIDS dissent" rather than "denialism": "'Denialism' is a religious and insulting term.")

In addition to the resurgence of suspicion towards public health institutions, the re-emerging AIDS denialism movement is also supported by some technological tools that did not exist when it first appeared: for example, platforms with huge influence such as X, Substack, Amazon, and Spotify, as well as new platforms like Rumble, Gab, and Telegram, which do not have specific censorship policies for medical misinformation.

For instance, Spotify has largely refused to effectively limit or censor Rogan, even paying him a huge sum; the company renewed a contract with him worth $250 million in February this year, just a few weeks before he and Weinstein made incorrect statements about AIDS. Meanwhile, Amazon currently offers Peter Duesberg's long-out-of-print 1996 book "Inventing AIDS" for free through its Audible trial program, and Rebecca V. Culshaw's three books can be obtained for free through the Audible or Kindle Unlimited trial program. In addition, Celia Farber has an account on Substack with more than 28,000 subscribers.(Spotify, Substack, Rumble, and Telegram did not respond to requests for comment; Meta and Amazon acknowledged the request for comment but did not answer questions; the public relations department of X only sent an automatic reply. The email sent to Gab's public relations mailbox was returned, showing it could not be delivered.)

Although the current wave of AIDS denialism does not have the same influence and scope as the past movements, it can still have serious consequences for patients and the public. If these views gain enough support, especially among elected officials, they may endanger the funding for AIDS research and treatment. Public health researchers are still affected by the inclusion of AIDS denialism in the official policy of South Africa from the late 1990s to the early 2000s; an analysis estimated that more than 300,000 people died prematurely between 2000 and 2005 due to the country's poor public health policy.

On a personal level, if people with HIV are discouraged from seeking treatment or taking measures to prevent the spread of the virus, such as taking medication or using condoms, it can also have devastating results; a study in 2010 showed that among people with HIV, believing in denialist rhetoric was associated with refusing medication and poor health outcomes, including increased hospitalization rates, more HIV-related symptoms, and detectable viral loads.

Most importantly, the resurgence of this specific type of medical misinformation is another worrying sign that technology platforms can deepen people's distrust of the public health system. The same skilled denialist script has been adopted on broader platforms that boast "health freedom," to create confusion and doubt about other serious diseases, such as measles, and challenge more fundamental viral scientific statements - that is, to propose that viruses do not exist at all, or are harmless and cannot cause diseases. (A Gab account dedicated to promoting the idea that all viruses are a hoax has more than 3,000 followers.)

As Smith said, "We are now in a very bad situation regarding trust in all public health institutions."Exploiting Chaos

One reason why AIDS and COVID-19 deniers have been able to establish similar movements against government science is that the early situations of both viruses were strikingly similar: filled with chaos, mystery, and skepticism.

In 1981, James Curran served on a task force investigating the first five known cases of a novel disease. "There were many theories about what caused it," Curran said. He is now the Dean Emeritus of the Rollins School of Public Health at Emory University, having worked for 25 years at the Centers for Disease Control and Prevention, ultimately serving as the Assistant Surgeon General. He and his colleagues had previously studied sexually transmitted infections affecting gay men and injection drug users. Based on such a background, researchers viewed the early patterns of the disease as signs of a "possible sexually transmitted pathogen."

Curran said that not everyone agreed with this view: "Others thought it was caused by inhalants or other drugs, semen accumulation, or environmental factors. Some of these views stemmed from people's backgrounds, or simply from denial, thinking it couldn't be a new virus."

Thus, the first wave of dissent regarding AIDS was less about true "denialism" and more about the legitimate confusion and disagreement that can arise when a new disease emerges. However, as time went on, "the mortality rate rose sharply," said Lindsay Zafir, a distinguished lecturer in anthropology and interdisciplinary projects at the City College of New York, whose doctoral thesis explored the emergence and development of AIDS denialism. "Some people began to doubt whether scientists really knew what they were doing."This led to a more deliberate surge of AIDS misinformation, which was adopted by mainstream publications. In the late 1980s, Spin magazine published a series of stories that included perspectives and figures of AIDS denialism, including an interview with Duesberg, who had gained attention for his argument that AIDS was caused by drugs rather than HIV. The magazine also published an article by Farber, a journalist who became more sympathetic to the AIDS denialist cause after interviewing Duesberg. In 1991, the Los Angeles Times published an article asking whether Duesberg had become a "hero or heretic" for his "controversial" views on AIDS.

The turning point came in 1995 when the first generation of antiretroviral therapy emerged to treat AIDS, and the number of deaths finally began to decline across the United States.

Even so, the denialist movement continued to grow, with a new generation of leaders who were as skilled in public relations as Duesberg and Farber, and (perhaps unsurprisingly) quickly adopted the early versions of the internet. This included Christine Maggiore, who was HIV-positive herself and founded the Alive & Well AIDS Alternatives organization. Well before the advent of social media, she and her peers used the internet to cultivate their organization, providing links to hotlines and face-to-face meetings on their website.

Smith from Kent State University and Steven P. Novella, a clinical neurologist and associate professor at Yale University, wrote a paper in 2007 discussing how the internet became a powerful force for AIDS denialism. It was "a fertile and uncensored medium" that provided a platform for AIDS denialist ideas and was one of the few tools available for countering the widely accepted views on AIDS in the medical literature.

Around this time, Farber wrote a significant article in Harper's magazine discussing the so-called AIDS dissidents, which sparked a storm of criticism and correction and reignited the debate for a new generation of readers."It's hard to quantify just how influential such individuals are," Smith said. She noted that Maggiore even received promotion from Foo Fighters band member Nate Mendel. "It's difficult to know how many people followed her advice," Smith emphasized, "but certainly many people heard these views."

In a catastrophic turn of events, one of the affected figures was Thabo Mbeki, who became South Africa's second democratically elected president in 1999. Mbeki was skeptical about the use of antiretroviral drugs to treat AIDS, as The Lancet pointed out, both Mbeki and his health minister supported the work of Western AIDS skeptics. In the summer of 2000, Mbeki chaired a presidential advisory panel that included denialists such as Duesberg; Farber told MIT Technology Review that she was also present at the time. Just a few weeks later, the South African president met privately with Maggiore.

Former CDC official Curran visited South Africa during this period and remembers that officials at the time "said they would put doctors in jail" if these doctors provided AZT to pregnant women.

"Mbeki once said, your scientists say this, my scientists say that—who is the right scientist?" Kalichman said. "When this confusion exists, this is the real vulnerability."Mbeki stepped down in 2008. Although AIDS denialism did not completely disappear in the 2010s, it did indeed largely retreat into relative obscurity, defeated by clear evidence that antiretroviral drugs are effective.

There were also rigorous fact-based movements, such as organizations like AIDS Truth, which was established after Farber's 2006 article in Harper's magazine. The organization gained attention online, systematically debunking the deniers' arguments on a rudimentary website and using hyperlinks to guide people quickly to science-based materials to respond to each point—a relatively novel approach at the time.

By 2015, the decline of denialism was so complete that AIDS Truth ceased active work, believing its mission had been accomplished. The organization wrote: "We—those of us who have been involved in managing this website—have long reached the point where we believe AIDS denialism as a viable political force has died."

Of course, it wasn't long before it was discovered that this work was far from completed.

Cultivating the "Hive"From the University of Connecticut, Kalichman likens the world of AIDS denial to a "beehive": it appears to be a chaotic mix where people pursue bad science and debunked ideas for their own purposes. But upon closer inspection, what seems like a tangled mess is actually "very well organized," even in the post-COVID-19 era.

The new wave of deniers typically do not regard their theories about AIDS as their sole pseudoscientific interest; instead, it is part of a whole series of unsavory ideas.

These individuals seem to have arrived at revisionist and denialist views through extensive public health skepticism, rejection of so-called large pharmaceutical company interventions, and a particularly strong aversion to Fauci. Kennedy, in particular, attributed almost superhuman abilities to Fauci in a 2022 tweet, claiming that Fauci "bought the omertà (referring to the Mafia's code of silence) among global virologists with research funding totaling $37 billion annually." This tweet received more than 26,000 likes.

The new batch of deniers also does not mind reviving old views that have long been debunked. For example, both Rogan and Kennedy have claimed that inhalants may be the cause of AIDS. "In the first thousand AIDS deaths, one hundred percent of the people were addicted to inhalants, a substance known to cause Kaposi's sarcoma in rats," Kennedy told the audience in an undated speech; recently, a video of this speech has been widely circulated. "They were a group of people living a double-headed, flaming homosexual lifestyle." (Kennedy's presidential campaign team did not respond to a request for comment.)

Even some have injected new vitality into the old forces. Duesberg, now 87 years old, is no longer active in the public eye (his wife told MIT Technology Review that his health does not allow him to be interviewed or answer questions via email). But his basic argument—blurring the causes, treatment methods, and the nature of the disease of AIDS—continues.Rogan actually invited Duesberg to his podcast in 2012, a decision that hardly attracted much attention at the time—perhaps because Rogan was not as popular then, and the United States' information misinformation crisis and the crisis of trust in healthcare were not as apparent. Rogan and Weinstein praised Duesberg in their recent conversation, claiming that he was "demonized" for his arguments about AZT. (Weinstein did not respond to requests for comment. Multiple attempts to contact Spotify through various channels were unsuccessful. Attempts to contact Rogan through a producer of his and via Spotify also received no response.)

This support seems to be mutual. Culshaw has written that even the reports criticizing Rodgers help their cause: "The more critical articles that are published, the more curious ordinary citizens—especially those who have experienced COVID—become and start to explore the issue. Once you delve into enough information, you cannot ignore the facts you see."

Culshaw and Farber have also benefited from the new ability to control their own amplifiers on the internet. For example, Farber is now mainly active on Substack, and her newsletter contains HIV-related content and general conspiracy theories. Her current work describes HIV/AIDS as a "psychological warfare operation"; she portrays herself as a long-term warrior in the war against government propaganda, and in this war, COVID is the latest offensive.

Farber said she believes her views are gradually being accepted by more people. "What's happening now is that the public is learning about the covered-up history," she wrote in a letter to MIT Technology Review. "I am always surprised by how interested people are in the 'topic' of HIV/AIDS today," she added, Kennedy's book "changed everything." She said: "I answered his questions about the history of the HIV war and was included and quoted in his book. This gave me the opportunity to become a professional writer again, writing on Substack."Culshaw expressed a similar perspective, though she is not as prominent a figure. As a mathematician and self-proclaimed HIV researcher, she published her first book in 2007, claiming to use mathematical evidence to prove that HIV does not cause AIDS.

In 2023, she published another book on AIDS denialism, which was published by Skyhorse Publishing, a publisher heavily involved in conspiracy theories and pseudoscience, and which published Kennedy's book on Fauci. When the book was distributed by the publishing giant Simon & Schuster, she gained a certain degree of notoriety, leading to protests by LGBT rights advocacy groups GLAAD and ACT UP NY outside their headquarters.

Despite Simon & Schuster seemingly continuing to distribute the book, this opposition provided a foundation for her new behavior: a rebirth after being "canceled." Last year, she produced a short memoir describing the controversy—Culshaw presents this history as a dramatic moment when the truth about AIDS was suppressed. The book is now available for free on Amazon through a Kindle Unlimited trial. (Simon & Schuster did not respond to requests for comment. A request for comment sent through Substack also went unanswered by Culshaw.)

Her narrative of being "canceled" by the scientific community has had a significant impact among online disease deniers, who are always eager to seize on any examples they believe of government suppression and censorship of "alternative" viewpoints. In May, the right-wing online magazine Chronicles supported the connection of Rodgers to a broader network of AIDS deniers, including Culshaw, Duesberg, and others—elevating them as heroic figures unfairly labeled as "conspiracy theorists" and courageously challenging medical authority, which the magazine disparages as "white coat supremacy." (A request for comment sent through a representative to Rodgers was not answered.)

Social media bansNihilism and revisionism have resurged in the fierce debate over what content should be allowed on online platforms. For instance, Spotify has explicit regulations prohibiting "claims that AIDS, COVID-19, cancer, or other serious life-threatening diseases are hoaxes or do not exist," and has specific provisions against "dangerous and misleading content," which are both well-considered and clearly expressed. However, Rogan's show seems to be exempt from these regulations or has managed to circumvent them; after all, he and Weinstein did not directly claim that AIDS is not real, but promoted some debunked ideas about its origins.

Although Amazon and Meta have some form of misinformation policies, it is clear that these policies have not prevented the sale of AIDS nihilism books or the sharing of nihilistic views. (Amazon also has content guidelines for books, prohibiting obvious hate speech, pornography, or terrorist propaganda, but does not specifically mention medical misinformation.)

Monitoring false or unverified health information on all these different platforms, regardless of its form, is very difficult. For example, in 2019, Facebook allowed the posting of misleading advertisements from personal injury lawyers claiming that PrEP (pre-exposure prophylaxis medication) would cause bone and kidney damage; it was only after continuous protests from LGBT groups that Facebook took action.

The deep-rooted nature of these situations can be seen on YouTube, where a channel originally named "Rethink AIDS" and now renamed "Question Everything" has been active for 14 years, sharing interviews related to nihilists. The channel has 16,000 subscribers, and its most popular video has over 500,000 views. Another page focuses on a conspiracy theory documentary about AIDS, which has been active since 2009, and its most popular video has nearly 300,000 views. (A YouTube spokesperson told MIT Technology Review that YouTube "has been working closely with health organizations around the world for years, continuously evolving our approach to dealing with medical misinformation," and significantly displays "content and information from high-quality health sources" in search results and recommendations related to HIV/AIDS.)

In the meantime, on platforms like Elon Musk's X, almost no content moderation occurs. The company lifted its ban on COVID misinformation in 2022, and the impact was immediate: a flood of various types of misinformation and propaganda, including AIDS nihilism. A widely circulated video shows the late biochemist Kary Mullis talking about the moment he first truly questioned the mainstream AIDS narrative.Beyond these more established platforms, there are newer and more niche platforms like Rumble and Telegram, which have no moderation policies for medical misinformation and proudly proclaim their commitment to free speech. This means they do almost nothing to address any form of misinformation, no matter how harmful it is.

Telegram is one of the most popular instant messaging applications in Russia and does have a general "verification of information" policy. The policy's statement links to a post by its CEO, Pavel Durov, in which he states that "spreading the truth is always more effective than censorship." Among the most active spreaders of misinformation on Telegram currently, discussions about HIV often compare it to COVID-19, claiming that both are "man-made" viruses. A widely circulated post by anti-vaccine activist Sherri Tenpenny claims that COVID-19 was created by "splicing" HIV into the coronavirus to "cause maximum damage," which is a ridiculous lie and also aims to reinforce the unproven view that COVID-19 was manufactured in a laboratory. Telegram is also fertile ground for sharing false HIV treatment methods; a group with 43,000 followers promoted an oil that is said to be used in Nigeria.

When YouTube intensified its crackdown on medical misinformation during the pandemic, conservative and conspiracy theory content creators turned to Rumble. The company claims to have seen a 106% increase in revenue last year and now has an average of 67 million active users per month. A segment discussing Duesberg's views on HIV by Rogan has accumulated 30,000 views over the past two years, while a key figure in the field of natural health and anti-vaccine, Joseph Mercola, had an interview with Farber on Rumble earlier this year that received more than 300,000 views.

Smith said that the concern about such misinformation is that patient groups, high-risk HIV communities, or populations that have historically been mistreated medically, such as black people and indigenous peoples, may think there might be some truth in this information and start to doubt whether they need to be tested or continue treatment. "It's like sowing seeds of doubt in the mind, or if these seeds already exist, encouraging them to grow," she added. "But when public figures with a huge influence like Rogan join the ranks, the situation is even more worrying. 'They have a huge platform, and these stories are frightening and spread quickly,' Smith said, 'Once this happens, it is difficult for scientists to counter this trend.'"

Despite the efforts of AIDS deniers to increase their numbers, Kalichman still believes that they are unlikely to make significant progress. He believes the most fundamental reason is that many people now know someone with HIV - a friend, family member, or celebrity. As a result, more people directly understand how current HIV treatments are life-changing."This is not the 90s anymore," he said, "People can live a very healthy life by just taking one pill a day. If an HIV patient smokes, and if their HIV is treated, they are more likely to die from smoking-related diseases than from HIV itself."

However, the risk does not necessarily depend on how many people believe this false information, but on who believes it. For those who have been studying AIDS denialism for decades, the biggest concern is that some public official will eventually notice these views and start to take formal action. If this happens, former Assistant Surgeon General Curran is worried that this could endanger the funding for PEPFAR (the U.S. President's Emergency Plan for AIDS Relief), a highly successful public health program that has been supporting HIV testing, prevention, and treatment in low-resource countries since the George W. Bush administration.

The current political environment further exacerbates this risk: Donald Trump has stated that if he is re-elected, he will cut federal funding for schools that implement mask or vaccine mandates, and Florida's health director Joseph Ladapo has allowed parents to continue sending their unvaccinated children to school during a measles outbreak.

Kalichman said that it only takes "someone sitting in the policy maker's position at the state health department" to take AIDS denialism arguments seriously. "This could cause a lot of damage."In addition, the same kind of denialist movement has already started in other diseases. Former gynecologist Christiane Northrup, an important figure in the field of natural health and related conspiracy theories, recently shared an old lie on Telegram that a German court ruled that the measles virus "does not exist". (Northrup did not respond to requests for comment.)

If it were just the cycle of HIV error theory, Smith said: "I might not be so worried. But in the broader context of anti-COVID, anti-vaccine, and denial of germ theory - this is what worries me."

By trying to effectively cut off the cause and effect - claiming that HIV does not cause AIDS, measles is not caused by a virus but by vitamin deficiency or by the MMR (measles, mumps, rubella) vaccine itself - these movements prevent people from treating or trying to prevent serious infectious diseases. They try to make people doubt the nature of the virus itself, which is a global gesture, showing skepticism, distrust, and contempt for the disease. Even the more peculiar and obscure "terrain theory" seems to be making a moderate comeback in alternative online spaces; this theory argues that in a person with a healthy body, thanks to vitamins, exercise, and sunlight, a "terrain" that is good, germs will not cause disease.

Smith pointed out that these false claims have resurged at a particularly inappropriate time, as the public health field is trying to prepare for the next pandemic. "We have just emerged from the emergency of the COVID pandemic and are trying to repair some of the damage to public health," she said, "while also considering the next epidemic."

When considering the lessons of the AIDS and COVID pandemics, Curran also has a larger, more fundamental concern: "The question is, if you discredit Fauci and his successors too much, when the next epidemic comes, people will say, 'Why should we trust these people?' The problem is, who should we trust?""Should we seek answers from Joe Rogan when avian influenza spreads from cattle to humans?"

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