Note: I’d like to welcome those of you visiting this site from the forums at aidsmed.com. This may be the first time that a mainstream AIDS site has referred to this blog as a “clear-eyed ‘alternative hypothesis’ site,” and I’m flattered. Given that, I hope you will look around a bit. A good place to start would be my own story here. Then read this blog post about AIDSMeds’ decision to prohibit me from posting at their site here.
Not everyone does well with the meds, and Emery’s death is not evidence that they are always the best answer for every patient.
- Jonathan Barnett
Resistance is Fruitful
When word first broke last week that Emery Taylor had died, the reaction from many of us who knew him was shock. Few of his friends on Facebook seemed to know what had happened.
Given Emery’s public identity as a person living with a positive test result for HIV and with a diagnosis of AIDS based on his CD4 count, it was inevitable that people would soon start asking about the cause of his death.
Emery walked a line between two camps in the world of AIDS: that of the Orthodox, or mainstream advocates of the generally accepted theory that HIV is the sole and sufficient cause of AIDS that can be managed by a cocktail of pharmaceutical drugs, and the Dissidents, a diverse and sometimes frustratingly divisive group of people that includes factions who question almost everything about commonly held perceptions about the disease. Orthodox AIDS defenders often dismiss such skeptics outright by referring to us as “denialists”.
Emery was known for his very visible and public stance defending his decision to not take antiretrovirals, despite being HIV-positive for twelve years and despite facing declining numbers of t-cells and a rising viral load. On his youtube video entitled UPDATE, posted a year ago, Emery quipped: “My t-cells are so low, pretty soon I’m gonna owe t-cells next time I go. I mean, I have 52. If my t-cells quadrupled, I would still have AIDS. That’s just how low my t-cells are right now (laughing). My t-cells are so low, they’re almost in the negatives.”
Emery came to the AIDS dissident community after finding himself feeling out of place, and even rejected by the mainstream support groups and AIDS service organizations. In his first youtube video, posted January 16, 2010, Emery says: “In the clinics, support groups and community organizations, honestly, I did not feel as I belonged because I was not on drugs, because I was not looking for just the next… piece of whatever, to get. I just felt as if I did not belong there. What I really needed was a support group of people who were just like me. You know, I’m not putting them down, because they’re in their own situations, and so I’m not putting them down at all, I just felt as if I did not belong.”
Emery was also a member and occasional contributor to the forums at Questioning AIDS,an online hangout for AIDS dissidents that I help moderate. His handle there was etay1207, same as his youtube channel. In one post, he relates his experience at other online forums for PWAs:
I’m constantly meeting and chatting with others who are poz. I posted this concern on poz.com and the response wasn’t too friendly. Here’s my issue. I see many people with “normal” CD4′s and undetectable viral loads getting sick with AIDS defining illnesses and other problems that are attributed to HIV. If their problems are due to HIV, shouldn’t I have their conditions so much more? Since my VL is so much higher? I have a good friend now dealing with liver issues. He is UD [has an undetectable viral load] “thanks to the meds” and his t-cells are in the 500 range “thanks to the meds”. But HIV is hiding out in his liver and causing problems. Call me stupid! My viral load is 644,000% more than his. Why is my liver healthy and his is not and they are blaming it on HIV?
Emery exercised his right and his responsibility to ask some fair questions that deserve answers, yet as I review the public record he left behind, I also see enigmas. Emery signed every post at QA, for example, with a list of his counts, which showed an overall decline in CD4 cells and a steady increase in viral load over the 12 years he lived with his diagnosis. His video reports reveal an almost flippant response to the significance of what the AIDS mainstream would describe as the chief markers of typical progression of a poz man. “I am not a numbers chaser,” Emery said, “and I never live my life as a numbers chaser, so I’m not afraid of a low t-cell count, or a high viral load. Actually, I embrace it. That’s just the way I live.”
Emery’s questions are standard fare for people, like me, who are struggling to make sense of what we observe. At the same time, despite what he told us, there is no denying that Emery was not the picture of health he wanted us all to think he was.
“I consider myself healthy,” Emery reported in one of his youtube videos. “So far I haven’t had any ill effect of the low white blood count. I haven’t seen any ill effect of the low t-cell count either.” In another video he simply states: “I have not been sick.”
Since his death, some on the Dissident side of the AIDS divide have called to have Emery held up as a martyr to the cause, while those opposed to allowing anyone to question the traditional thinking about AIDS were parading him on their blogs as proof that AIDS denialism kills, even before his church could schedule a memorial service.
Emery chose a different path, knowing it might be a short one. In one forum post he writes:
People disagree with me all the time. The number 1 question I get is “What if you’re wrong?” To which I always reply, “Then I’ll get sick!” Now my doctor and other pozzies are afraid that I will “drop dead”. Now let’s think about this. Isn’t AIDS a decline in immune function? Since when does someone who dies of AIDS are healthy one day and dead the next? As long as I’m working 80 hours a week, doing 200 pushups and 200 squats everyday Mon-Fri, running after two 5 year olds when I come home, and running up to NYC every weekend for church, you’re gonna have a hard time convincing me that I am deathly ill.
I am dissident, at the same time I respect other people’s views. My fiance is on meds and even though I refuse the medication, I fully support his decision. I will not insult his intelligence by trying to push my views upon him. Who knows, I may be wrong. I have been before. He is one of the few in my life who knows my views on HIV. All my friends know that I’m not on meds, most don’t know why. We have a few members in my church who have been poz over 10 years (one has been poz >20 years) and are not on meds. People are questioning, they just aren’t as vocal as I am about it. My pastor knows why I’m not on meds. He doesn’t agree with me not being on treatment. But he supports me in my endeavors. I also have a loving family that supports me.
I don’t mean to suggest that Emery’s death was inevitable, far from that. I am looking at the picture he left of his life, to see what the rest of us can learn from it.
Only those closest to him have any clues about what really happened to Emery, and that information has not been forthcoming, at least not on his Facebook page, which has been the primary source of information to date.
I visited with Emery’s husband Billy, about a week after Emery had died, or as Billy would say, transitioned. I wasn’t sure what to expect from our visit, but I was prepared to beg him to share more information, in order to help stop the speculation and rumors that were starting to appear online. There was no need to beg.
“I’m also [HIV] positive, and have been on the meds,” Billy tells me at the beginning of our conversation. “I came off the meds November last year.”
Billy is not your typical AIDS dissident. He does not question or dispute the existence of the human immunodeficiency virus, nor does he doubt that it causes AIDS. “I know HIV exists”, Billy said. “I know it causes AIDS.”
Still, Billy is in good company with much of the AIDS dissident community regarding his opinion that the existing drugs used to treat the immune dysfunction called AIDS are toxic and problematic for long term use. At first blush he may not seem to be a likely candidate for holding a questioner’s point of view, considering his science background and that he has worked in and around pharmacy labs for nearly 20 years. He did not come to his current point of view until fairly recently, having been on ARVs since his own diagnosis in May of 2001*. Knowing Emery has played an important role in his own path.
“We didn’t see eye to eye at first,” Billy says. “Then after talking and reading denialist information, I thought, this is amazing”. He also mentions the documentary House of Numbers as having a strong influence on him, saying it answered a lot of his own questions.
Billy seemed unaware that the term “denialist” is offensive, or that anyone would consider it a pejorative term. “Really?” he asks, “I didn’t know.” I’m thinking to myself, some of the AIDS dissidents I know are going to eat him alive if he says that to one of them!
Billy’s CD4 count is high and his viral load is low, after being on ARVs for more than 10 years. All is not good news, however, as recent labs were showing the inevitable telltale signs of long term ARV use: indications of drug toxicities in his labwork. “The drugs were messing up my kidneys,” he said. Meanwhile, Emery was the picture of health at that time. “I just decided that my husband is doing things differently and is doing well, so let’s go for it.”
The difference between their rationale however, remained. “I know the HIV was still there and needed to be suppressed, just not with toxic drugs,” Billy says.
Shortly after Billy quit his ARVs, Emery’s health took a noticeable turn for the worse. He lost a lot of weight in December. Billy talked him into visiting family, hoping that they could help him convince Emery that something was wrong. Emery protested that he had always been thin. “Not like this,” insisted his mom and other family members. They all concurred that Emery’s weight loss was quite noticeable.
He also began to experience difficulty breathing, and the chest pains he had been reporting for the last year returned, and then worsened.
The sicker he got, the more Emery balked. “No, Billy, I don’t need the drugs,” he told his concerned husband.
Eventually, Emery was hospitalized briefly, but he released himself, refusing the doctors’ requests to start AIDS drugs, or even perform any more tests for HIV. When he developed a swollen parotid gland, the doctors suspected lymphoma, but the tests came back negative for cancer. Then they suggested it could be tuberculosis, but no, Emery did not have TB. “It looked like he had a second head on his neck,” Billy tells me.
(I have to disclose here that at this point, my own mouth was dropping, because everything Billy is telling me is eerily reminiscent of what I have been through myself this past year, though I have managed to keep my CD4 count much higher than Emery did.)
Emery had been complaining of chest pains as early as December 2009, on the QA forums. He had appointments with a cardiologist in February 2010, but a battery of blood tests and workups revealed no problems with his heart. “Probably gas,” the cardiologist told him.
While Emery was in the hospital a year later, doctors did find the source of the troubling chest pains and that proved the final blow for Emery. KS. Kaposi Sarcoma. One of the original AIDS-defining diseases, was disseminated in Emery’s lungs. There was more KS on his upper thigh. Billy prefers to call it a “sort of cancer”, hence the less-than-accurate Internet reports that Emery had died of lung cancer.
Emery finally broke. He agreed to take ARVs, and the doctors prescribed Atripla, but Billy is not sure Emery took the drug regularly, if at all.
All this time, Billy had been doing his own research, for both Emery and himself, searching for evidence that there were better ways to fight the virus, without the problematic and eventually lethal adverse effects of the ARVs. He came across the Foster Health Group, a website that sells nutraceuticals, based on the research of Dr. Harold Foster.
Billy has been taking some of these natural health products since he quit his ARVs, and he was convinced that Emery could benefit from them as well, but that he would require higher doses, at least initially. With help from Emery’s mom, they also started to juice raw foods in an attempt to improve Emery’s nourishment. Despite his claims to being a healthy young man with few vices, Emery admits that his life as a trucker did not lend itself to having a healthy diet. “All I eat is steak and potatos,” he said. “I’m a truck driver, that’s what we do. There are no apples or oranges in my truck, I swear to God, there just isn’t.”
The supplements Billy ordered for Emery finally arrived from Canada. The shipment had been held up at the border, first by customs officials who then called in the FDA to conduct an investigation. FedEx handed the package to Billy nearly a week after Emery had transitioned.
“I am going to carry on his legacy,” says Billy. “I want to reach out to people with HIV who need help and who cannot or will not take toxic drugs.” Billy says he is committed to finding alternative treatments and he does not believe Emery had to die when he did. “It just wasn’t his time.”*Correction: The original post incorrectly stated 1991.