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.
This is amazing, Tara (and John). Thank you so much for sharing this.
Thank you and thank you also for your great work exposing HIV denialism in your videos, c0nc0rdance!
Thank you for speaking up, John. I am glad that you and your family are doing well now.
Great interview, Tara. I used to argue with John on-line when he espoused denialist views. Now we communicate as friends via email and facebook and I know what he has gone through. He has downplayed the vehemence and verbal violence he and Jess have suffered from the deniers who once considered him a friend, all because he changed his opinion. It really is a testament to sites like yours and Myles Power and Seth Kalichman's Denying AIDS that people like John can get proper information about the tactics of AIDS Denialists. I have also contributed to the downfall of a specific denialist organization, the HIV Innocence Group with my own site. But not before I was sued in TX Federal Court...and won! If we all keep up the good fight, hopefully many more people and families like John, Jess and baby Dominic will be saved.
While Crowe, Duesberg, RA and company may be retarded, it doesn't change the fact that HIV along with all then other viruses have never been isolated.
Actually the human immunodeficiency virus has been isolated. Just because you say it hasn't doesn't make it true.
Even Dr. Duesberg, the Father and Guru of AIDS Denialists claims that HIV has been isolated by the most rigorous scientific standards. Duesberg also claims that HIV has been molecularly cloned.
You're assuming I agree with that fool Duesberg(a man who will never critique virology as such)
The only virus isolation I accept is the EM method of non debris purification. This was attempted in 1997 by a Franco-German team. It failed miserably showing only microvesicle debris.
Also Todd, those methods are based on unspecific, indirect means. Not exactly rigorous.
"The only virus isolation I accept is the EM method of non debris purification."
I don't think anyone cares about what you will and won't accept, Claus.
HA, you think I'm your old online sparing partner huh, Nick.
Anyway, it's not just me that thinks that the EM method is the only unambiguous way of showing the ACTUAL(not inferred), directly verifiable existence of viruses.
all then other viruses have never been isolated.
When virus particles are present in large enough numbers to form opal-like arrays and change the colour of their insect host, that's pretty verifiable.
None of the above info is directly verified herr. I'm looking for isolation and purification. 'Pretty' will not do. The changes in the
insect could be down to endogenous biochemical reasons not down to a non verified virus.
I am 29 and HIV positiv eas well and have a similar story except my first acceptance as an AIDS denialist was during the last 8 months from when I tested positive. (I tested positive 1.5 years ago). I wasn't into the movement persay and didn't establish connections with any of them really, just had faith in believing what they said. I say this because it was during the first 1.5 years and getting diagnosed with HIV isn't something you want to accept fully right away. It's easier to pretend its not there for peace of mind. Additionally, I had always been into natural therapies, which I still think work to manage disease and side effects, and after seeing the negative effects of presciption drug abuse in my mom (who died from it eventually) and all of my family, I have always had a very deep mistrust for the medical establishment and pharmaceutical drugs. I had managed my own health for the past 10 years without a doctor fine so I took my HIV into my own hands. The things I tried helped for sure but I never developed a regimen to ensure they were being impactful in the long term and they weren't curing anything. I only discovered the AIDs denialst movement 8 months ago and did a lot of research on them and since I am anti-establishment what they said made sense to me and while I didn't quite believe it 100% I wanted to and had some faith in it.
I had a hospital scare where I had a near death experience with PCP and CMV, both are AIDs related diseases. I had a CD4 count of 207 yikes! At below 207 they say you have actual AIDs. This all happened in less than 2 years and all the information stated it takes 5-10 years so it took me by suprise.
After getting my blood work back from an HIV doctor and having a long talk with my Dad about how the reasoning of my arguments were faulty I decided to start the medications. My bloodwork showed I had a lower CD4 count of 157 and a viral load of 4 million which is a TON of the virus. I have been on the medications for 4 days now and so far no side effects, but I do know there are long term side effects which I plan to take using herbs, provided they do not interfere with my medications. I continue to abstain from sex since I was tested positive and have been eating healthier and quit smoking in general (hookah and medical marijuana) due to my past lung issues.
Now that I have accepted 110% I have this disease and that it is a consequence of a past self destructive lifestyle, I have to accept this and move on and I finally have taken responsibility for it and am doing something about it.
There are unfortunately a lot of AIDs denialists still out there. I did research on them again after hearing other AIDs websites debunk their theories which made much more sense to me. All the authors are the same in the denialist movement the same few doctors and they represent a very small faction of the community. I could have died because I refused the meds for so long, but luckily, by the grace of God I am alive to tell my story.