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Christoph.'s avatar

I went a left a comment on the X thread about the drug, "I bet it leaves no one behind regarding liver and kidney damage. But people abroad can't join the class action lawsuit against Gilead for such damage."

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El Terco's avatar

Remember that liver and kidney failure is so much more enjoyable to die from than “HIV-disease”…therefore it’s a great biomedical victory when you die of liver or kidney failure. Let’s celebrate !

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Rebecca Culshaw Smith's avatar

The sad truth is that they really believe this.

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El Terco's avatar

I'm plowing my way through Sarah Schulman's *Let the Record Show*, the 1000-page history of ACT UP. It's a brilliant book in many ways, but the "Drugs into Bodies" bias is unbelievable. The question is always "access" ...there is nothing worse than not "being treated" even if the treatment is mega-toxic and you die from it. Then it's always still presented as "buying time" against "the virus," even if the treatment fails completely. Putting "drugs into bodies" is almost like some kind of valiant fighting in a war where, if you don't take the drug, you are a coward and a traitor.

There is also a very weak understanding of science, even though certain groups within ACT UP were specifically science focused. It's always the government science.

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Rebecca Culshaw Smith's avatar

Did they block you yet? They seem to be going wild with the block button.

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KewlAid's avatar

I find it disconcerting that the government responsible for our publicly funded medical has numerous links for corporate PARTNERSHIP. The very definition of partnership means they're going to get a say especially if involves millions of dollars.

https://health.ubc.ca/what-ubc-health/ubc-health-structure/bc-health-systems-partnership

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KewlAid's avatar

Was on TDF & Raltegravir from 2011. I had only been taking Truvada once every 2 or 3 days from maybe 2018. Forgot to take it. Forgot more Raltegravir than TR. I remained undetectable but kept the missed doses to myself for 5 years.

Last April, when my GP since 2011 asked if I'd been skipping any I came clean. We had an EXCELLENT Dr/Patient relationship. He said, "I CAN'T tell you NOT to take them but it would almost be better if you didn't because you could cause resistance and immune collapse."

I wrestled with this for a month, bit the bullet and stopped.

When I returned for my follow up appointment 3 months later he was gone from the clinic. On sabbatical and leave of abscess were alternately used. After 13 years it's bizarre he wouldn't have mentioned he may be taking a break. Staff at the clinic remain tight lipped. He spearheaded it and was the team leader when it opened as an adjunct to the Immunodeficiency Clinic at St. Paul's hospital in Vancouver BC. The "Excellence in HIV" program headed by Julio Montangier (S America). Catholic hospital/Catholic countries?

100% conjecture on my part.

All references to my GP have been wiped from the net. Google returns links with a preview pic but the links return: This Page Does Not Exist.

He was replaced by an HIV researcher physician (again from South America). The majority of the clinic's top positions are occupied by professional researchers from S. America. I'm overly imaginative so I'm sure it's coincidence.

To say my emotional state became inflamed when my GP was yanked from the picture doesn't quite describe it. I see HIV as a marker of chronic inflammation. My number went to 1,000,000.

It was over 10, 000,000 when I was admitted to St Paul's hospital, ARV naive, Christmas Eve 2010, I was given a 1-2 week prognosis. Having outlived 4 sets of best friends & my mate of 25 years I had been emotionally bereft for some time, only allowing treatment for the many life-threatening infections because I promised our mother years before I'd stick around for my older sister.

There are many more details. It @RebeccaCulshawSmith wishes she can DM me. Realizing the reach of the prevailing forces I would not be surprised if this substack and commenters aren't monitored. That's what I would do if I was in charge of that agenda.

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Rebecca Culshaw Smith's avatar

I’d love to talk to you about your experience. Substack has a habit of losing DMs, so please email me at walkerpercyfan at gmail.

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Mothers Grim's avatar

Your book gets a shout out in this piece about a Gilead insider. Thank you for writing it. https://margox.substack.com/p/a-queer-radical-leather-witch?r=1kuq0

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Rebecca Culshaw Smith's avatar

Thank you! I subscribe to your substack but haven’t yet read this piece - will look at it tonight.

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R!CKYRANTS's avatar

They blocked me, too.

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Rebecca Culshaw Smith's avatar

Thank you for your service. 🙏🏻

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David Lamson's avatar

As Sharyl Attkisson always asserted, "follow the money to find the story."

I draw no conclusions, but when my browser AI was asked "Who funds the trials action group hiv science twitter page?", AI generated the following:

Gilead Sciences

Based on the provided search results, there is no direct mention of the “Trials Action Group HIV Science Twitter page” being funded by a specific entity. However, I can analyze the information related to HIV vaccine and prevention trials, which may be relevant to the Twitter page’s focus.

The search results mention:

Gilead Sciences, Inc. as the sponsor and funder of clinical trials, including the PURPOSE 1 trial for a twice-yearly injection of lenacapavir for HIV prevention.

The HIV Vaccine Trials Network (HVTN) as a publicly-funded international collaboration, primarily funded by the National Institute of Allergy and Infectious Diseases (NIAID) at the U.S. National Institutes of Health (NIH). The HVTN conducts clinical trials for HIV vaccines and prevention strategies.

It is possible that the Trials Action Group HIV Science Twitter page may be affiliated with or receive support from one or both of these organizations, but this information is not explicitly stated. Without further details or direct confirmation, it is impossible to determine the specific funding source(s) for the Twitter page.

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Rebecca Culshaw Smith's avatar

Sharyl Attkinson is one of the last real journalists.

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Tim's avatar

We had an exchange of tweets this morning. In the middle of it they blocked me and deleted all their posts.

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Rebecca Culshaw Smith's avatar

Thank you for your service. 🙏🏻

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Chris's avatar

When unresolved childhood emotional trauma is the core of one’s identity, any challenge to waking up/dismantling that trauma will be “blocked.” One possibility.

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Jerome's avatar

I would like to find decent sources of referrals to doctors who can help get us out of the medical nightmare of "treatment." I have been searching for years, with no success, although a naturalpath has been helpful. Feel free to respond directly. Thanks

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