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Money-hungry pharmaceutical companies and PrEP
Apr 22, 2014

This time of yea is always distressing for me cus I hate thinking about warm weather coming up. I don't know how to explain being covered up in 90 degree weather and the stress is making me age prematurely.

I'm thoroughly disgusted that there is advocation of HIV negative people taking PrEP. I have been living with HIV for 20 years and these medications have made my life a living hell. Not sure why I chose to keep taking them after the first signs of lipodystrophy, but it is too late to wonder now. I guess I was hoping that someone would figure out what went wrong with the medications and could fix them or provide something that reversed this or maybe it was because they were giving me a longer life.

I can't understand this new thing tho. Knowing that the drugs, and not HIV, is the cause of lipodystrophy why would anyone advocate someone who is not positive take them. It's just another greedy scheme so the pharma. companies can make more money. It's disgusting. Why don't the pharma. companies show photos of people who have lipodystrophy in their ads instead of these models who probably don't have this god-awful thing.

When will we have a cure for this shit???? And to tell you the truth, the passive-agressive answers i read on here disgust me at times too.

Response from Mr. Vergel

I share your frustration about not having a good treatment to reverse lipodystrophy (either fat gain deep inside the abdomen or fat loss under the skin). Egrifta, the only product approved for belly fat, works too slowly and not on everyone. It is also expensive, requires daily injections and there are supply issues at the moment. For facial lipoatrophy we have 2 products (Sculptra and Radiesse) with hardly any reimbursement and durability. Fortunately, avoiding Zerit and AZT has helped to prevent facial lipoatrophy in people not exposed to them. But long term survivors like us were exposed to these drugs with irreversible consequences.

Here is a press release my non profit sent out years ago that unfortunately still reflects our frustration today. Read the survey results so that you know you are not alone in feeling the way you do:

PoWeR Releases Groundbreaking Lipodystrophy Resources for HIV-Positive People

A few activists are now trying to advocate for studies using leptin to treat HIV lipodystrophy. It has been approved for diabetes related lipodystrophy: Leptin

Fortunately, tenofovir plus emtriva (the drugs included in Truvada) have not been associated with lipodystrophy when used for prevention of HIV. Using it has been shown to be highly effective in people who take it every day in preventing infection.

Yes, Truvada is expensive and hard to access for the regular person with or without insurance for prevention. Its use is highly stigmatized by the community and doctors who call people who take it "Truvada whores". The perception is that its use increases unsafe sex practices. This perception has been proven wrong in a study, however.

Truvada's Efficacy as PrEP Reaffirmed

Pre-exposure prophylaxis fact sheet and patient assistace

In health,

Nelson



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