TS: How did you become introduced to HIV denialism? Can you describe your involvement with this movement?
JS: It was during my research on HIV/AIDS that I stumbled upon the denialist information; information which is quite easy to find when doing a search for HIV on google. I was into conspiracy theories at the time and the thought of HIV being a conspiracy was something I found pretty interesting to say the least. I asked questions about the denialist information on official HIV/AIDS websites and was banned for doing so by moderators who told me that I was parroting denialst propaganda. This censorship reinforced my belief that perhaps the denialist information had some truth behind it, without knowing that the reason I was banned was because this information can be and is a danger to public health. I searched for denialst groups to attempt to make contact with these people in order to learn more and this led me to joining the Facebook group “Rethinking AIDS”. Eventually, I decided to become a vocal speaker for the denialists because I believed at the time that their information was genuine and I wanted to do the best I could to spread this information in the hopes of helping other people.
During my time with them I was advised not to speak to certain people from the “orthodox side” because they’re all lying shills and sociopaths or not take seriously scientific information on HIV because according to the denialists it’s all propaganda from the “AIDS establishment”. Once I lifted my confirmation bias and decided to disassociate myself from Rethinking AIDS and denialism in general, it caused a wave of attacks, anger, disbelief and insults with some members even alluding to the fact that I was the leader of Rethinking AIDS at the time. Of course I wasn’t and I always reminded them that I was and independent even if I was supporting their point of view regarding HIV/AIDS. You can say I was very involved with the movement; I spoke on radio shows about denialism, filmed my own youtube videos, wrote my own articles about denialism and attempted to inform every person I could about the denialist information.
TS: You mentioned the notorious HIV denialism documentary “House of Numbers” in your blog post. What did you find so compelling about that movie?
JS: The most famous denialist documentary happens to be “House of Numbers” and denialists recommend the viewing of this film to everyone they speak to because according to them, this documentary and others like it prove their allegations that HIV is a scientific fraud. It does so by attempting to show people how HIV tests are unreliable, HIV has never been isolated, HIV drugs are the cause of peoples’ illness and death, etc. I can honestly say I believed the same until I viewed the youtube series “Debunking the AIDS Denialist Movie House of Numbers” by Myles Power. His series deconstructs “House of Numbers” to show you that the film is nothing more than a biased piece of denialist propaganda. I was aware of Myles’ series when I was still a denialist and never took it seriously because for me and others, his series was nothing other than propaganda from the “AIDS establishment”. Once I disassociated from denialism and lifted my confirmation bias, I decided to give Myles’ videos another watch and this time I could see clearly how deceptive the movie “House of Numbers” is. The film contains interviews with scientists that have been edited in such a way to make people believe these scientists support the idea that HIV is a fraud, when in reality many of their statements were taken out of context and some have even released statements to clarify their real position on HIV/AIDS. People to this day are being misled into believing “House of Numbers” is proof that HIV is a fraud, when in reality it’s a cleverly designed tool of denialist propaganda.
TS: What caused you to modify your stance?
JS: During the last year with the denialists, Jessica and I had a son who was born negative for HIV because my she and my child received the appropriate treatment to avoid vertical transmission. I was still entrenched in denialism during the birth of my son and was not too happy about the doctors wanting to give AZT to my wife and newborn child but decided to do so for two reasons. The main reason was the worry that the authorities would force treatment on my son but the second reason was a thought that crossed my mind: What if I was wrong? We opted for the treatment and hoped for the best and although everything worked out fine for us; the denialists chastised us for our decision. The final blow which led to my disassociation from denialism was when months after our son’s birth, my wife Jessica fell ill with pneumocystis pneumonia again; this time so severe she almost died. Jessica restarted treatment after falling ill the first time in 2011 but only stayed on treatment until we joined the denialists; we both stopped treatment during our time with them because as they preach, we believed the medications were toxic poisons and the real cause of AIDS. Something was definitely not right here and I decided to end my time as and HIV/AIDS denialist. Fortunately Jessica recovered and we are back on treatment but this choice and our disassociation from denialism caused us to be attacked, insulted, unfriended on Facebook by many people I was associated with; something akin to being thrown out of a cult, actually.
TS: What has been the response you’ve gotten from the denialist community? How have you and your wife handled it?
JS: As I previously mentioned, we were attacked, insulted and even my son was brought into the filth they spewed against us. The president of the group “Rethinking AIDS”, David Crowe, accused me of selling my soul to the devil, many others continued to harass me and even told me that our decision to get back on treatment will result in the death of my whole family. My wife and I have pretty thick skins and while she ignores them and is happy she is doing better now, I use my knowledge to help other people avoid the same trap we fell into in the hopes that perhaps I can do some real good this time and avoid people’s suffering because they were fed and believed incorrect medical information. The best example I can make of how we were treated by the denialist community after our disassociation would be how a member of Scientology is treated once he or she decides to abandon the church. To the denialists we are nothing more than human garbage. I was called a shill and a sellout, and they accuse me of leading people to the death camps because today I promote HIV/AIDS awareness instead of pseudoscientific nonsense. The denialists in my eyes are a cult; too bad I did not see this before becoming entrenched into their dogma and becoming a voice for their agenda.
TS: How do you feel others can avoid being miseld (potentially dangerously so) by the denial movement?
JS: In the past, censorship of denialist information was the norm; pretend it doesn’t exist and hope nobody will notice. I believe that people should be informed about the dangers of eschewing necessary treatment for HIV and what can possibly happen to them if they do. I have people writing to me daily asking for help or wanting to hear my story because they got involved in denialism and are falling ill but don’t know what to do. Although I cannot and do not offer medical advice, I share my story in the hopes that they make the best choice for themselves. It’s great to also hear one of these same people write to me again down the road to thank me because their health has improved after returning on or starting treatment. Articles such as this one and many others exposing the denialist agenda are a great help and I will continue to do my part to make sure people understand the risks they are taking when getting involved with HIV/AIDS denialism. Giving people the correct information regarding HIV/AIDS, how today it is no longer a death sentence and that on treatment they should expect to live a long and healthy life comparable to a person not living with HIV is also very helpful. For now me and a few others are the only voices speaking against denialism but there should be more. In some countries it’s illegal to disseminate incorrect medical information and I believe such a law could prove to be of some benefit in this country as well. The article entitled “Can You Inoculate Against Science Denial?” is a great read and explains very well what we are facing today and how to approach this issue.
TS: What message would you pass on to others who are newly diagnosed?
JS: If you’re newly diagnosed, the treatments today can keep you healthy and living a long life comparable to a person not living with HIV and there are many people and organizations that can offer you support; you are not alone. Remember, HIV doesn’t define you, you define HIV. Being newly diagnosed is a life changing experience, but it doesn’t have to be a bad experience. By getting tested and getting into treatment, you are taking control of your health. Become informed as much as you can about HIV. Ask your doctor questions, research, reach out to support groups and if you happen to stumble upon the denialist information, make sure you know what you’re possibly getting yourself into before jumping on the bandwagon. If anyone newly diagnosed is reading this and would like to contact me for information or support, feel free to reach out.