Autism & the anti-vax movement: Autism ONE, Suramin drug trials & pseudoscience marketing
Part 3 in a series about the vaccine/autism myth & the pseudoscience of chelation for autism.
Jump to Part 1
Several groups spun out of the antivaccine media hype stoked by McCarthy, RFK Jr., Wakefield and Autism Speaks. McCarthy became a spokesperson for the group Generation Rescue, which promoted the autism-MMR myth. Its co-founder, J.B. Handley, told PBS’s Frontline that he’d learned about the vaccine-autism hypothesis from a Yahoo parent group, which led him further into special diets such as Rimland’s Defeat Autism Now program. (See pt 1 of this series.)
“Well, the theory of DAN! is that the behaviors that we have chosen to call autism are a manifestation of misalignments within the body, and those misalignments can be everything from a gut that’s been turned upside down, to foods that are coming into the system that aren’t well tolerated to viruses, bacteria and heavy metals that are overloading the system. [I]f you bring down the toxic load…the behaviors that you call autism will start to disappear as you fix the body.”
Like Handley, McCarthy had a media platform, from Oprah Winfrey and Larry King, who gave her prime television exposure. Oprah even offered McCarthy her own show (however, McCarthy ditched Oprah for an NBC offer). In 2008, with Generation Rescue, McCarthy also organized a Washington, DC march entitled Green Our Vaccines.
Autism One, antivax & the suramin protocol
One of the biggest organizations promoting the autism-MMR vaccines theory has been Autism One, a conference that platforms bogus autism treatments such as chelation, which proponents believe can detoxify children from a vaccine injury. Former speakers at Autism One include Wakefield, McCarthy and “bleach queen” Kerry Rivera, who sells bleach (MMS) as an autism treatment and was currently in hiding from authorities as of early 2024. As Steven Salzberg, writing for Forbes in 2012, described it, Autism One is:
“…a nexus for anti-vaccinationists, who run special seminars educating parents about how to get vaccine exemptions so that they can enroll their unvaccinated children in public schools.”
It could be argued that Autism One is where once-respected researchers who develop quirky autism theories go to re-invent themselves (or to lose all credibility, depending on your perspective). Salzberg gave the example of Autism One speaker Luc Montagnier, who in years past had co-discovered the link between the HIV virus and AIDS, but who in recent years has pushed a therapy of long-term antibiotic treatment for autistic children.[1] Montagnier claimed to have found, within autistic children:
“DNA sequences that emit, in certain conditions, electromagnetic waves. The analysis by molecular biology techniques allows us to identify these electromagnetic waves as coming from … bacterial species.”
Salzberg described the response from the scientific community:
“Montagnier hasn't been able to publish this [hypothesis] in a proper journal, for a very good reason: it's nonsense. He claims that quantum field theory - an area of physics in which he has no qualifications - explains how electromagnetic waves emanating from DNA can explain not only autism, but also Alzheimer's disease, Parkinson's disease, multiple sclerosis, Lyme disease, and rheumatoid arthritis. Montagnier makes these claims and more in a self-published paper. He's also endorsed homeopathy, another quack treatment.”
In a 2021 press release, Autism One described itself as “a parent-founded, parent-driven 501(c)3 non-profit charity organization that exists to help children and their families achieve improvement and recovery from an autism diagnosis; restoring health and skills and enhancing safety and happiness.”( Interestingly, its founder, Ed Arranga started the organization after meeting with Bernard Rimland.)
Also a presence at Autism One was Judy Mikovitz, who later was to be featured in the Covid-era conspiracy theory based film Plandemic. Mikovitz had been an advocate for using Suramin, a 100-year-old drug for sleeping sickness, to cure autism. The drug Suramin was patented as a treatment for trypanosomiasis (also known as African sleeping sickness) and onchocerciasis (also known as river blindness). More than a century later, it was being promoted as an autism cure.
In 2016, Susan Swedo, an MD with a background at the National Institute of Mental Health, also spoke at Autism One. In addition to attempting to link autism with strep throat, Swedo has also promoted the antivaccine hypothesis that heavy metals from vaccines caused autism, advocating chelation as a potential autism treatment. In 2006, Swedo sought funding from the National Institute of Health for chelation trials on autistic children, which were approved then abruptly canceled. (More on this below.)
An unsafe product, clinically trialed with children
Whether purchased in an evergreen dropper bottle on the internet or administered by a naturopath, Suramin is not safe for children. Studies on the use of Suramin with HIV-AIDS-ARC patients were banned in the US due to the number of fatal adverse events. Severe side effects of Suramin include cardiac events and death, low blood pressure, kidney problems, low blood cell counts and decreased levels of consciousness. Common side effects include nausea, vomiting, diarrhea, headache, skin tingling, weakness, sore palms of the hands and soles of the feet, trouble seeing, fever and abdominal pain.
Mikovitz, who has spoken in QAnon venues as well as at Autism One, is a former professor at University of Nevada-Reno whose papers were retracted for fraud before she was prosecuted for theft of proprietary items from the University of Nevada campus in Reno. Later, during the pandemic, when asked what people should take to “heal” from the COVID-19 vaccine, Mikovits told the interviewer:
“There’s an antidote. Because these people wouldn’t be injecting people unless they knew the answer. SURAMIN [ S-U-R-A-M-I-N]. This is the most important antidote. It’s 100-year-old essential medicine, WHO (World Health Organization) essential medicine for African Sleeping Sickness. You can inoculate the tiniest amount of Suramin, and reverse autism.”
A press release related to Autism One starts with a classic, question-based headline: “Is Suramin the Answer the Autism Community Has Been Waiting For?” It seems designed to lend an air of credibility to Mikovitz’s hypothesis that retroviruses in today’s biological therapeutics, including vaccines, are contributing to diseases like cancer and conditions like autism. Off-label Suramin marketers state that the drug could reverse the effects of the retroviruses they claim cause autism.
The Suramin squad also recruited UC-Davis professor Dr. Robert Naviaux, adding the legitimacy of a university’s brand to their hype. Naviaux ran a 2017 study on 10 children that he claimed showed positive results for the 5 children who were given Suramin. However, since study results were based on parents’ subjective observations of their children’s behaviour and parents are prone the placebo-by-proxy effect (wishing to see results in their children’s behaviour based on their hope the treatment will work), combined with the small sample size 5 children, Naviaux’s study wasn’t much to go on.
Nonetheless, Naviaux went on to serve on the advisory board of Pax Medica, a clinical-stage biopharmaceutical company. PaxMedica posited that autism could be related to a “cell danger response (CDR)” and that the company’s work was to test this hypothesis.
Another near-recruit to Suramin was Mark Cavitt, a medical director of pediatric psychiatry services at the Johns Hopkins All Children’s Hospital, who tempered the optimism, telling Reuters that Suramin had shown “some promise [but]…will need to proceed through FDA stage II and III trials with many hundreds of patients enrolled to be adequately tested for safety and efficacy.”
In contrast, James McPartland, a professor of child psychiatry and psychology at the Yale Child Study Center told Reuters that “Suramin would not be considered a research-supported treatment for autism at all.” He pointed out that the 2017 study on suramin “has not been replicated in an adequately sized group of children.” In the same interview, McPartland noted that there is “a long history of unrealistic claims for the potential benefit of untested treatments for autism, and some can be harmful.”
McPartland’s warnings (and the skeptical approach of the broader research community) did hinder Naviaux and the PaxMedica corporation’s efforts. In 2021, the company published results of a trial in South Africa, with 52 children with an average age of 8, being given a product they called “Pax-101”. Study success was measured in the same way Naviaux’s study was: by parent and researchers’ observational reporting on whether the young children’s behaviour had changed, through filling out a subjective checklist that was prone to bias and didn’t consider confounding factors in child development.
How safe was Suramin for the children forced to undertake the experiments? In the PaxMedica study, one child suffered a “serious adverse event” from Suramin and was withdrawn from the study and several others suffered “mild to moderate” adverse events. As the team wrote: “The most common treatment-emergent adverse events in drug treated patients were rash, upper respiratory infection and vomiting.” While in its press release, PaxMedica stressed that “The safety and tolerability of suramin has been well characterized in the treatment of other illnesses,” it is cold comfort when one considers that children did suffer in these trials.
The traumatic impact of being trial participants was not measured.
Was suramin another case of an imagined autism cause (inflammation) and a correlative “cure”? PaxMedica stated:
“PAX-101, an antipurinergic agent delivered as an IV infusion, has also been shown to have significant anti-inflammatory properties based on non-purine receptor pathways in multiple disease models. The mechanism of the drug’s action in a condition like ASD is not fully understood and has been postulated to act through…the reduction of neuro inflammation in this population.”
The company’s press release also included a quote from Alice Mao, Medical Director of Memorial Park Psychiatry Adult, Adolescent and Child Psychiatry in Houston. (Although not mentioned in the press release, Mao was also on the advisory board of PaxMedica.) “This is an exciting step forward for the Autism community,” said Mao. “The results from this clinical trial clearly show promise for advancing this novel treatment into the next phase of development.”
In addition to PAX-101, the company noted, they hoped to develop PAX-102, “a proprietary intranasal formulation of suramin for less severe forms of ASD.”
In 2023, PaxMedica applied for a US patent for Suramin for its original uses (sleeping sickness and river sickness), noting in its patent application that it hoped to market the drug as well for autism, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long Covid.
The social media marketing of Suramin continues as well. A Facebook post from February 5, 2023, advertising Suramin for $19.99 USD, promised “The Cure for Autism is SURAMIN!” It was removed by Facebook shortly after with the statement covering the ad copy: “False information. Checked by independent fact-checkers”. But some Suramin disinfo also stayed on Facebook; in June of 2023, The Brain Institute, a bottomless source of autism misinformation on the platform, posted a video entitled “SURAMIN FOR AUTISM” with this message.
“We are delighted to share that the recorded video of our event [SURAMIN FOR AUTISM] has now been uploaded. Due to unprecedented demand we have decided to make this video publicly available, so feel free to share.”
Shortly after, some Suramin sellers migrated to Telegram, an unregulated platform where they could make any claim, with no independent fact-checkers to shut them down.
Dr. Bob Sears, autism fears & vaccine hesitancy
Distant (yet occasionally adjacent) to the world of Autism One and the suramin scene was the work of Dr. Bob Sears, son of the authors of the famous Baby Book, which had guided parents through holistic parenthood since it was first published in 1993. Dr. Bob, as he came to be known, authored The Vaccine Book, a different kind of guide, which advised parents they could vaccinate their children with some or all vaccines, but follow a longer, staggered schedule that contradicted the recommendations of pediatric groups and the American Medical Association.
Spacing out vaccines over a longer period was a reassuring concept that gave parents a sense of control over vaccinations, while hitting a middle ground between vaccinating along the schedule versus not vaccinating at all. However, the new approach did not come without risks, including that babies and toddlers could fall ill from diseases they hadn’t yet been vaccinated for.
Regarding autism and the MMR, Sears claimed that “the truth of the matter is somewhere between causality and coincidence,” (cited in Biss, 107). Sears also seemed to be releasing parents from a sense of social duty in vaccinating, empathising with individual parents who refuse the MMR vaccine for their kids, stating they are blameless for “putting the health of their child ahead of that of kids around him.” Sears even warned parents not to share their decision against vaccinating with friends and neighbours, “because if too many people avoid the MMR, we will likely see the disease increase significantly.”
The individual decisions, whether to stagger or completely avoid the MMR, have had epidemiological impact, as the past decade’s outbreaks of measles make clear.
The myth that children were toxified and made autistic by the MMR had also slowly enabled a slew of products like oral and IV chelation (which Rimland had endorsed), whose dealers claim the process will remove the various ingredients they claim cause autism. These products are readily available not only online, but from some MDs who prescribe them off-label, violating their ethical responsibilities for the care of vulnerable patients. Some, like Swedo, even attempted to run clinical trials of chelation on autistic children. (More on that in the next section.)
In Canada as late as 2021, regulators refused to take action on a complaint, allowing the doctor to continue to offer off-label chelation as an autism treatment to children based on his claim that vaccines were associated with autism. The autism-chelation project exploited fears of a toxic world, a topic I explore in the next part of this series.
Jump to Part 1
[1] See: https://www.science.org/content/blog-post/luc-montagnier-not-losing-luc-montagnier-has-lost