The Curious Case of Sean Strub

POZ Founder Skeptical of PrEP?

If you aren’t familiar with the name Sean Strub, allow me to introduce the man. Strub is one of the OG AIDS activists, having founded the very well-known POZ magazine. Per Wikipedia, Strub is “a pioneer expert in mass-marketed fundraising for LGBT equality.” Born in 1958, Strub is the very definition of a “long term survivor” of HIV AIDS. Formally diagnosed in 1985, he believed that he may have been symptomatic as early as 1979. He has been involved in all manner of AIDS activism since the very beginning of the epidemic, and is a strong promoter of antiretroviral drugs. Among his many endeavors, he ran for political office in New York in 1990, running for the House of Representatives for NY’s 22nd congressional district, and although he did not win, he did quite respectably, garnering 45% of the Democratic vote in the primary. He is also a long time member of ACT UP New York.

It should come as no surprise that Strub is an enthusiastic proponent of ARV therapy, given his lived experience:

In 1994, he started POZ, a magazine for the H.I.V.-positive. The idea was to give people hard facts, but realistic hope, although by 1995, his appeared to be running out. He normally was thin — 6-foot-1, 156 pounds — but by then weighed 124. The Kaposi’s sarcoma lesions, which started on his body in 1994, spread to his neck, face and, by 1995, his lungs, making him a “90-9” club member: 90 percent died within 9 months.

[…] And then in January 1996, protease inhibitors that stopped H.I.V. from replicating were approved by the Food and Drug Administration; Mr. Strub started on a daily dose of 16 pills.

In one week, he felt better. In a month, others noticed. “For the first time I thought I’d be alive in a year,” he said. “My planning window changed.” He bought a new suit, visited the dentist again.

So far, this is just another story about another AIDS patient that was miraculously saved by the paradigm-shifting protease inhibitors—so paradigm-shifting that the standard of care in “HIV” treatment took an abrupt left turn away from prescribing these medications, with their admitted severe adverse effects including lipodystrophy—unsightly fat redistribution that was often accompanied by, predictably, cardiovascular effects. In the articles I have read so far, it is unclear whether Strub is still taking PIs; however, we know from the following article that in 2010, he was taking Viread, an “anti-HIV” medication that contains TDF, or “bad Truvada.” Even worse, he may well have been a victim himself of “bad Truvada.” Check this out:

Did Gilead’s Viread Break My Ankle?

The following quote is long, but you need to read it in its entirety (emphasis added by me throughout):

On June 4, I stumbled on a sidewalk in Amsterdam, where I had been at a board meeting of the Global Network of People Living With AIDS.  I fell where a sidewalk went from smooth concrete to the rough, uneven surface of Belgian block.  That simple stumble, not unlike many I have had in my life without incident, fractured three bones in my ankle.  Happening in Amsterdam made it sound almost incriminating, as some have assumed I was drunk or high, enjoying that city’s famous reputation.  Not the case; I was stone sober.

It required surgery on both sides of the ankle, a plate, several screws (you can see two long ones on the right and one of the shorter ones on the left) [image redacted - Ed.] and a whole bunch of pins.  My newly-bionic right ankle matches my bionic left femur, which received hardware after an unfortunate incident with a motorbike in 1987.  The fracture did not come as a total surprise because two years ago, I was diagnosed with “profound” osteoporosis, attributed in some significant part to tenofovir, known as Viread, the powerful anti-retroviral drug I was taking (and which is also found in Gilead’s Truvada and Atripla).

Well, this is certainly interesting. Strub had been diagnosed with “profound” osteoporosis in 2008, a full two years before this complicated fracture occurred. Read on:

Six years ago, when I started Viread, I was told nothing of this possible side effect.  While there was already some data indicating some risk, most community clinicians and patient advocates had not been informed about it.

HIV itself, as well as a number of other anti-retroviral AIDS drugs may also contribute to bone loss, but there is growing evidence which points to tenofovir (found in Viread, Truvada and Atripla) as a particularly intense demineralizer.  

He had been told nothing about this possible side effect. Is this not an eerie foreshadowing of patient after patient involved in the Truvada lawsuits—plural—who were also not informed of the potential harmful effects of this drug to their kidneys and bones, some of whom have experienced devastating, life-altering effects? Yet Strub remains a true believer—mostly. Note how, in the second paragraph above, he has to include the caveat that “HIV” itself may contribute to bone loss. Really? Since when?

It is also interesting to note that, back in 2010, there were actually some critical voices being given prime air time regarding the potential deleterious effects on bone density of TDF. The following article by Jim Edwards appeared in the “Markets” (“MoneyWatch”) section of CBS News online in 2010, and it includes a description of Strub’s experience with his broken ankle:

Down to the Bone: Is an HIV Drug's Link to Fractures Underplayed?

Gilead (GILD)'s HIV drug Viread already carries a warning for loss of bone density, among many others, but a rash of recent studies suggests the FDA should require its much more serious "black box" warning for potential bone fractures. Such a warning could seriously damage sales of Viread, which makes $667 million a year for Gilead and is 10 percent of the company's revenues.

Talk about foreshadowing. It gets worse:

One February 2010 study shows that bone fractures are 6.4 times more likely among HIV patients, about 51 percent. In 2008, there were 160 fractures requiring hospitalization for ever 10,000 HIV patients. Among the general population there were only 25 per 10,000. A March 2010 study described how Viread (tenofovir) changes the way genes work, softening bones.

It’s interesting to see that, in 2010, a year before the official recommendation of PrEP to all “at risk” groups, the alarms were being sounded, at least in some form, about the potential problems with TDF, yet in the years between that date and when Tyreese Buchanan went public with his story in 2019, the alarms were—almost—canceled and TDF began to be full-on promoted to “HIV”-negative individuals as PrEP. However, there was one more critical article, again featuring Strub, published in 2016 in the LA Times Business section (interesting that these stories, including the recent New York Times July 2023 piece, all appear in “business” or “markets” sections of major newspapers), written by Melody Petersen:

A question of timing: A lawsuit claims Gilead Sciences could have developed a less-harmful version of its HIV treatment sooner

What we are seeing here is the birth of what would become the absolute monster of the lawsuits against Gilead Sciences for promoting TDF, or “bad Truvada,” while knowing that they had an allegedly safer alternative, TAF or “good Truvada,” waiting in the wings.

More than a decade ago, researchers at Gilead Sciences thought they had a breakthrough: a new version of the company’s key HIV medicine that was less toxic to kidneys and bones.

Clinical trials of the new compound on HIV-positive patients in Los Angeles and several other cities seemed to support their optimism. Patients needed just a fraction of the dose, creating the chance of far fewer dangerous side effects.

But in 2004, just as the Foster City biotech firm was preparing for a second and larger round of patient studies, Gilead executives stopped the research. The results of the early patient studies would go unpublished for years as the original medication – tenofovir – became one of the world’s most-prescribed drugs for HIV, with $11 billion in annual sales.

Of course, none of this is new to long time readers of this website, but I have to ask the question of what happened between 2016 and 2023 to inspire AIDS activists to attempt to censor advertisements that sought to inform patients of Gilead’s deceptive practices and the possibility that they might be entitled to compensation? What happened to convince the AIDS activists that the story needed to be buried because it was potentially harmful? (Harmful to Gilead’s bottom line, certainly.)

We all know what happened: The absolutely insane push for PrEP happened. The scientific community and the AIDS activists decided that no toxicity was great enough to stop the promotion of “anti-HIV” drugs to “HIV” negative individuals as a kind of preventative. As we have seen, the push for PrEP has only reached a fever pitch ever since, to include long-acting injectable “preventative” medication, that can even be monitored via wearable device. And this is where Strub’s story becomes even more intriguing. Check this piece—written by Strub himself—out, from 2012:

Treatment as Prevention: Not as Simple as It Sounds

Hold up—you would think that a true believer such as Strub would also be a strong proponent of PrEP. Apparently, even within the AIDS activist community, there is some thread of common sense that remains—can this be true? Let’s see what Strub has to say. Note that the editor’s note states that this piece “stems from two previous “Let’s Discuss” commentaries, both giving opposing views on West Hollywood city councilmember John Duran’s statement that ‘treatment is the best form of (HIV) prevention.’” Right off the bat, I’m disappointed but unsurprised:

For many of us, the concerns about “treatment as prevention” (using drugs before or after exposure to HIV to prevent infection by the virus as opposed to using drugs after infection to stop it from progressing) isn’t about whether or not it is effective on an individual basis in preventing HIV transmission. It is.

He has to get that plug out of the way first. I’m curious as to where he derives the conclusion that PrEP is effective, since only a handful of trials of PrEP had even been completed prior to 2011, and none showed anywhere near perfect efficacy. He cites the “HIV Prevention Trials Network’s 052 trial [that] showed a 96 percent reduction in the risk of infecting others.” Of course, we all know that these drugs perform far worse “in the wild” than in trials. So what is Strub’s objection to “treatment as prevention,” if in fact it is effective, as he claims? If it has to do with the toxicities such as the one he himself experienced, the same criticism ought to apply to ARV treatment for “HIV” positive individuals.

As it turns out, Strub has an eight point criticism of “treatment as prevention.” His eight points are long, so I will try to summarize his key points as succinctly as possible. You can read them in detail at the piece linked above.

1. PrEP risks ruining a very effective anti-retroviral by facilitating development of resistant virus, making the epidemic more complicated and more difficult to end.

2. We don’t know the long-term effect of taking these treatments and the enthusiasm for treatment as prevention likely will result in many not understanding the risks they’re taking when they take these drugs over a long period of time.

3. Treatment as prevention strategies are gutting behavioral-based HIV prevention strategies — like condom distribution, empowerment programs, etc. — in favor of a bio-medical solution, a chemical treatment to render people with HIV non-infectious.

4. I question the morality of spending scarce government resources providing treatment for those who don’t have an immediate medical need while others are dying for lack of treatment.

5. Treatment as prevention is highly effective at preventing HIV transmission, but it isn’t going to protect from syphilis, the meningitis thingy that’s now so scary or lots of other nasty pathogens that are transmitted sexually.

6. Why is there so much enthusiasm for pre-exposure prophylaxis and little discussion, in relative terms, about post-exposure prophylaxis (PEP).

7. Science has not conclusively demonstrated, with high quality evidence, whether treating people with CD4 counts greater than 500 confers a net benefit or a net harm to the individual. We know it prevents transmission, but what about the health of the person taking the treatment? Are those with high CD4 cells being told that we don’t know if this treatment will help them or if it will hurt them?

8. Finally, the very name, “treatment as prevention” is offensive to me. What about treatment for those who need it as treatment, not as prevention? It conveys a message that the prevention benefit of treatment is the priority and that’s why people with HIV should get access to treatment, to protect those who are negative, rather than to improve our own health.

I’ll try to read through these through a critical lens, all the while understanding that he is writing as a disciple of the HIV AIDS religion. From that perspective, I’m uncertain as to why we aren’t hearing more concern in the mainstream media or in the scientific literature about the potential of PrEP to drive “resistant strains” of “HIV.” The prospect of drug resistance is certainly brought up again and again as a bogeyman to scare “HIV” positive patients into “compliance”—you don’t want to develop a resistant strain! Weird how little airtime that concern gets when it comes to PrEP.

I only disagree with #2 on a technicality—we do indeed know, from the 26,000+ victims of Truvada, that there are some serious long term consequences of these medications. If one believes the HIV AIDS story unquestioningly, the gamble of taking these medications to prevent “progression to AIDS” might seem worth it, but to give them to patients with no hint of “HIV?” #3 makes sense to me too—condoms are always going to be less dangerous than daily toxic chemotherapy, latex allergies notwithstanding. And #4, as well as #5—the fact that PrEP does zilch to prevent the many other STIs—are simply common sense. It’s the last three points where things get interesting.

The point about PEP is interesting, because available evidence shows that a month-long course of PEP, which is standard after a “risk exposure,” is supposedly highly effective. We can see some hints of the establishment beginning to acknowledge this in their promotion of “PrEP on demand,” the “2-1-1” formulation that acts as a kind of “morning after pill.” If PEP is highly effective, and we know PrEP efficacy is nowhere near 99%, why on earth would we promote daily, lifelong chemotherapy to “HIV”-negative individuals? (I think we know why.)

#7 is by far the most interesting to me, because it shows a level of critical thinking and foresight not often to be found among AIDS activists. Even assuming PrEP to be highly effective, what else might it be doing to people’s bodies? Other than the patients and their doctors involved in the Truvada lawsuits, is anyone asking that question? It seems to be rather an important one.

Finally, we come to #8. Of course, I don’t believe “HIV” causes AIDS, or that these drugs provide more than some limited potential antimicrobial and anti-inflammatory protection; nor do I believe these drugs are safe or “specific to ‘HIV’.” But if one does believe these things, I can understand why Strub would take offense.

This post is already long enough, so I won’t go over Strub’s debate with Peter Staley about “treatment as prevention.” You can read that debate, which appeared online in December 2014 (and which claims PrEP efficacy to be “up to 91%,” a drop from the “96%” stated in the 2012 piece) by clicking here. I just found this to be an interesting look into the thought processes of a long time AIDS activist that, at least a few years ago, was sounding the alarm on PrEP, perhaps indicating that not all hope has been lost. What does Strub have to say about PrEP today? That, my friends, I would really love to know.