Rob Johnston, AIDS Reappraiser

Published at RedFlagsWeekly.com – April 10, 2003
David Crowe

[Update! Rob Johnston was posthumously awarded a SARA in the Activist category on March 1, 2004 by the Alberta Reappraising AIDS Society]

Rob Johnston contributed enormously to the AIDS “Reappraisal” movement (also called ‘dissidence’ or ‘denialism’ by those who are offended by it). He died of liver failure completely unrelated to AIDS on April 3, 2003 in Toronto, and will be missed by many because of his commitment, knowledge, intelligence and plain old friendship.

I can only speak of Rob’s involvement in alternative explorations of HIV and AIDS over the past 5 years, not other aspects of his life such as a love for orchids and time visiting with and advocating for the Lacandon Indians and their culture in Chiapas, Mexico.

When I first met Rob in mid-1998 (most of our meetings were by telephone and email, so I use the term ‘met’ loosely) he was trying to get permission for HEAL Toronto, the organization he had helped found, to have meetings in the 519 Community Centre in Toronto. Although it was very open to AIDS organizations, it was closed to those that dared to question the HIV=AIDS=Death model. Rob revealed his sense of humour after he had been called a ‘Holocaust Denier’ by one opponent, by suggesting that he should rename himself Zunderella (after Ernst Zundel, Canada’s most famous Holocaust denialist, recently deported from a US jail to a Canadian jail).

He spent quite a bit of time ‘tweaking’ the local AIDS establishment. When they started a major advertising campaign in 2001 claiming that AIDS was on the rise again in Toronto, Rob pointed out that they had merely misinterpreted their own statistics, confusing prevalence (the estimated total number of cases) with incidence (the number of new cases over the past year). He was able to show that, in fact, HIV/AIDS cases in Toronto were occurring at the same slow rate as in previous years. It must have been frustrating that the AIDS Committee of Toronto (ACT) had a budget to purchase billboard space but he had to rely on the HEAL Toronto website, and an article in a Toronto magazine by Sky Gilbert.

Rob was not just involved in local issues. Later in 1998 he copied me on a lengthy correspondence with the US CDC over the issue of whether HIV had ever been found in hemophiliac Factor VIII. It is often noted that HIV cannot live very long in fresh blood, yet it is claimed that it has no problem surviving the freezing/thawing/drying/heating process to produce this clotting factor. As so many who have communicated with the CDC have found, you get answers to lots of questions that you didn’t ask, but never a direct answer to the questions you did ask.

This was another characteristic of Rob, he had a wider interest in HIV and AIDS than in just its impact on his community of gay men. His concern was in the flaws in the basic science as well as its impact on a variety of so-called ‘risk groups’. He had seen the devastating effects of belief in HIV and AIDS in his community. Many heterosexuals have a hard time seeing homosexuals as just simply people like them. Rob did not return this disfavour, as he was just as concerned about the effects on people regardless of the ‘risk group’ they were pigeonholed in.

An example of this was his concern over proposals to make HIV testing mandatory for pregnant women. Not only did he see this as a violation of their human rights, but that it would inevitably lead to the prescription of highly toxic drugs that would damage the health not only of the women taking them, but also of their babies while in the womb.

When Sophie Brassard, a single, HIV-positive woman in Montreal asked for support in her battle to prevent the forced medication of her two HIV-positive sons with antiretroviral drugs, Rob Johnston and a handful of like-minded gay men were the first to come to her assistance and stick with her through multiple court battles and her life as a fugitive. Being HIV-positive and opposed to medication made her a pariah with many other groups that should have come to her assistance, but failed to do so. Rob and Sophie were about as unlike as any two people could be. Sophie was highly emotional, often alternating between deep despair and vitriolic outbursts against the people harassing her. Rob was much more level-headed, and strategic in his thinking. This was a tragic story, that I have told elsewhere, but I will always remember Rob’s humanity, understanding and patience in the most trying of times. I also appreciated his level-head when the temptation to panic was overwhelming.

Where I learned to respect Rob the most was in his desire and ability to assimilate and communicate alternative views of the mass of scientific and non-scientific information and misinformation on HIV and AIDS. Although Rob had not had a scientific education, he had educated himself on these issues through sheer persistence and hard work. He had an incredible knowledge of the minutiae (but important minutiae) of virus culturing, antibody tests, drug side effects, and many other areas. He also had a desire to make the information accessible, often through the HEAL Toronto website.

One of the communication projects that Rob took on was a rebuttal to the “Durban Declaration” of 2000. This declaration, the Nicene Creed of HIV/AIDS, was in response to the embarrassing problem of holding the world AIDS conference that year in a country where the President (Thabo Mbeki) had publicly questioned the connection between HIV and AIDS. Rob, and many other AIDS reappraisers were offended by this tactic of imposing a dogma by sheer numbers (5,000 signatories). A letter from Simon Wain-Hobson of the Pasteur Institute noted that it was mandatory to have “major university qualifications” to sign, but it was not necessary to be an expert on HIV and AIDS, just enough to “understand the association’ (but not necessarily enough to understand the difference between ‘association’ and ‘causation’). Rob got fired up by this and decided that this could not go unchallenged. Carl Strygg quickly obtained a URL and Rob set to work to analyze the text, and prepare counter arguments. Matt Irwin and I were also drafted, but the project never would have been started, nor completed, without Rob’s drive and leadership.

Rob could have easily just have written a polemic, setting up his position against that of the ‘establishment’. However, to achieve his goals of communicating the process of reappraising, not just the end result, he integrated the original Durban Declaration text with rebuttals to each portion. This allows readers to consider the original statements, consider the arguments against them, and make up their own mind.

The Durban Declaration was just a skirmish. The big battle to be fought was against the US NIH/NAIAD website paper entitled “The Evidence that HIV causes AIDS”. This anonymous article, that has not been peer-reviewed, and that offers no forum for response, represents the only comprehensive argument against the position that HIV is not the cause of AIDS. Reappraisers have long wanted to tackle it, and some had tried, but none had gotten very far due to its sheer enormity.

Rob had a few false starts, but eventually decided that it was practical if only the most critical portions of it were tackled, particularly those related to the issue of causation. He got started late in 2002, found his health problems getting in the way, but managed to start again. He drafted Matt Irwin and me to help him, but again it was Rob who managed the project and did most of the writing. Rob had trouble getting the revisions completed because of worsening health, but on March 21, 2003 he wrote to the National Institutes of Health asking them to list the rebuttal on their website. He knew that they would refuse his request (or, more likely, ignore it entirely) but he could not resist the temptation to cause them a little grief. On March 22^nd he sent an email around announcing the formal release of the rebuttal. I thought that, at the time, it was a sign that his health was improving, but now I fear that he knew that the end was near, and that this was one project he was damned well going to finish. That was the last time I heard from him.

Another of Rob’s favourite topics was documenting the perfidy of Robert Gallo, the man that the general public believes was first to discover ‘HIV’. After I managed a US government whistle blower’s personal website containing the complete US House of Congress Ways and Means committee staff report on Robert Gallo, Rob offered to host the whole enormous package on the HEAL Toronto website along other supporting information. This report was never officially released by the congressional committee because the committee had not approved it before the Democrats lost control of the house to the Republicans led by Newt Gingrich. The report is a damning indictment of Gallo, who Rob referred to as the Pinochet of AIDS. The information in the report features in the 2002 book “Science Fictions: The Dark Legacy of Robert Gallo” by John Crewdson. Rob knew the importance of keeping this information public, and thought that having it only on one personal website was dangerous. And it was good that he did, because shortly afterwards, the original website disappeared.

After I had got to know Rob quite well by email and phone calls I had to spend a few days in Toronto and suggested that Rob and I get together for dinner. Rob took it upon himself to prepare a gourmet vegetarian feast for about a dozen members of HEAL Toronto, including the sprite-like and always effervescent Carl Strygg, the playwright Sky Gilbert resplendent in black leather and the poet Ian Young. I had also invited Frank de Jong, leader of the Green Party of Ontario, to educate him about alternative approaches to topics of personal health. I know the food was wonderful, but the conversation outshone it, with a stunning range of topics from sex to literature to virology. I have a hard time remembering details of the conversation, because it bounced from person to person and topic to topic so quickly that I was simply dazzled, and had to struggle to be able to keep up with the flow and interject my own opinions. There was no distinction between fun and thought or between happiness and seriousness that night.

Rob seemed so healthy then. His life seemed to revolve around epic bike trips through the Mexican jungles. I did not realize at the time that this was related to his interest in the Lacandon Indians, but as a fellow bike-rider, I was enormously impressed by the stamina that must have been required, especially considering the heat and humidity that he must have battled.

But, by September 2001, Rob’s health had declined to the point where he had to send an email to his friends explaining how he was trying to deal with the increasingly severe symptoms of Parkinson’s disease. After years of refusing antiviral therapy for HIV, and retaining his health, he was now hit with this blow.

He addressed that challenge with a mixture of conventional and unconventional medicine, but the symptoms continued to worsen. As if this wasn’t bad enough, about a year later he developed a large lump on his face, a lymphoma. Again, deciding how to deal with this was difficult, particularly given his skeptical views of modern medicine. But, it could not be ignored, and he eventually decided that chemotherapy was the best course of action.

Rob started on 6 rounds of CHOP therapy (oncologists have a black sense of humor, another favorite remedy is abbreviated as 5FU, often called ‘five feet under’ ha ha). His ‘lump’ (as Rob referred to it) started to shrink, almost miraculously. Unfortunately, his use of chemo was also associated with many of the signs of severe immuno-suppression, including persistent anemia, major swelling of his arms (cellulites), and mouth sores. Rob joked to Carl Strygg that he went into the hospital to have his cancer cured and came out with AIDS. Some of the symptoms he was experiencing would have been AIDS-defining, if it hadn’t been know that there was another cause for them. The chemotherapy also worsened his Parkinson’s. After three rounds of therapy, Rob decided that, with the lump gone, he would not be continuing with the remainder. He did not think that his body could take it.

Every time an AIDS reappraiser dies, people are anxious to know whether it was AIDS. Those who support the dominant paradigm are hopeful that, if it was, it will cause all the other ‘denialists’ to smarten up and get on drug therapy right away. Dissidents, on the other hand, often still have a sense of insecurity. Every time one of their number dies of AIDS they are forced to confront the possibility that they have been living a delusion. Somehow one person dying from symptoms that would not be called AIDS in non-HIV-negative people is proof that the HIV-positive person really was killed by the virus.

Rob’s father, Bob Johnston summed it up: “The chemotherapy he had between November and January for the tumour on his cheek gave him very serious side effects which were then treated with an avalanche of drugs which we are sure put more pressure on his liver. The final straw was the reaction to codeine which he was taking for pain from his Parkinson's disease (hardly an AIDS related disease). I hope the dissidents will not take Rob's passing as in any way weakening their serious questioning of the now ‘traditional’ way of dealing with HIV. If Rob had taken AZT we are convinced he would not have lived for the past 18 years (during nearly all of which he lived a healthy and active life - and rode his bicycle for thousands of kilometers in Mexico while working to help save the Lacandon Indians’ culture).”

There were two major ironies in Rob’s death, and I am pretty sure he would have chuckled over them. The first was that after 18 years of being warned about the consequences of ignoring his HIV status, it was something completed unrelated that proved fatal to him. The second was that his last few days were spent in virtual isolation in a hospital because of the SARS epidemic (or panic, depending on your perspective). Only when the doctors decided that his condition was fatal were even his parents allowed to visit. After years of trying to avoid being trapped by HIV and AIDS he ended up trapped by a disease that had nothing to do with him at all.

Rob will be missed by his family and his many friends. Many people were able to find new hope through the information that he provided, and to realize that the decision over whether or not to start AIDS medications was theirs to decide, and was not a simple choice between ‘acceptance’ or ‘denial’.

Michael Ellner, President of the founding HEAL chapter in New York City said “Rob’s passing is a huge loss for the HEAL Network and every one with ‘HIV/AIDS’-related fears and conditions. Rob was a dynamic educator and activist. He made a profound contribution toward exposing the overwhelming lack of evidence for HIV being the cause of AIDS and challenging ‘HIV’-related treatments. He was one of those rare people who inspired a lighthearted approach to life’s most serious challenges and he will be deeply missed.”