Why the Largest AIDS Charity in the World is WRONG

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The AIDS Healthcare Foundation was established in 1987 as a place for AIDS patients to receive critical end-of-life care in a time when many hospitals refused to do anything for them. Today, they provide a wide variety of healthcare services out of clinics and pharmacies, to more than a million people in 43 different countries, and in 2016 alone they took in $372 million, making them possibly the best-funded and most powerful AIDS charity on Earth. They fund research on antiretrovirals, they support legislature that will lower drug prices (despite the fact that they make most of their money through their pharmacies), they support increased access to condoms and give away free condoms at many of their locations, and strongly encourage cheap and easily accessible STD testing.

What an amazing organization. Surely there is nothing I could say to make you think that this is in fact a terrible organization that needs to be reined in.

But I’m going to try anyway.

Michael Weinstein was one of the original founders and is today the sole CEO of The AIDS Healthcare Foundation. Usually nonprofits need to hustle to get money from grants and donors — they’re beholden to some larger group. In this case, AHF is designed to work like a private for-profit business — it’s a nonprofit but its money comes from its chain of pharmacies and its insurance business. This means that Weinstein isn’t really beholden to anyone, and so he uses the organization to do, well, whatever he wants. And Weinstein has decided to use his multi-million dollar AIDS foundation to campaign against the AIDS “pre-exposure prophylaxis” (or PReP) known by its brand name Truvada. It’s a pill that you can take once per day that reduces your chances of getting HIV by 99%.

It really does work that well — the only way to lower the success rate is to not actually take it according to the directions. This is one of Weinstein’s problems: he (and AHF) argue that no one should be encouraged to take PReP because they won’t follow directions, but they will continue to have risky, unprotected sex believing they’re still protected. That, he says, will lead to more infections of both HIV and other STDs.

It’s an interesting argument, but it has no basis in science. It’s been six years since PReP was approved for use in the US and in that time we’ve seen a stunning drop in HIV transmission among the populations that are using it. Contrary to Weinstein’s opinion, people are taking the drug properly: Kaiser Permanente tracked 5,000 patients who took PReP for one year and found that not a single one contracted HIV, while a few people who declined to take the drug did contract it.

And despite the fact that some studies suggest that yes, some people who take PReP become less likely to use condoms during sex, other STI rates are actually going down along with HIV among the people taking the drug. That’s because part of PReP healthcare includes regular STI screening, allowing doctors to catch and treat infections before they get passed on.

So Weinstein’s fears are completely unfounded, but he continues to wage a campaign against PReP. Somewhat ironically (or not, really), his actions are in effect a self-fulfilling prophecy. If the largest AIDS healthcare organization in the world tells the at-risk community that they shouldn’t bother with PReP, that will interfere with uptake. It effectively removes an important tool from the toolbox of combating HIV and AIDS.

In fact, there’s one big issue with PReP that Weinstein is right about: the lack of uptake by one of the most at-risk communities — black men who have sex with men. African Americans make up half of all new infections but account for only 10% of Truvada patients. Uptake is also low in the South, where the HIV scourge is particularly bad.

Gosh, if only we could reach out to this marginalized group somehow. If only, I don’t know, the biggest AIDS charity in the world could help educate them about the science of pre-exposure prophylaxis and then provide them with that medicine at an affordable rate. AHF has that opportunity and they’re not taking it because their CEO is an ideologue who absolutely refuses to trust the science.

I’m talking about healthcare again so you know where I’m going to end this: universal healthcare. We already know we can’t trust private industry to save us. Now you know that we also can’t expect nonprofits to do it. We need a healthcare system that treats our poorest, most marginalized, most at-risk members with the basic medicine they need. I won’t spend any time talking about how much money we’d all save if the US was to go with universal healthcare over private industry (but it would be a lot), but I will point out that giving at-risk people PReP pills would alone save us millions of dollars simply by preventing new HIV infections. One study found that giving just 13 people PReP for one year was enough to prevent one new, extremely expensive new HIV infection.

A science-based universal healthcare system is all we need to completely, finally, eliminate HIV/AIDS entirely.

Shout out to California State Senator Scott Weiner for drawing my attention to AHF this week, as he continues to fight them on their PReP denialism as well as their anti-housing initiaitives. Oh yeah, that’s a whole other thing Weinstein is doing. Go check out more on Weiner’s Twitter thread.

Rebecca Watson

Rebecca is a writer, speaker, YouTube personality, and unrepentant science nerd. In addition to founding and continuing to run Skepchick, she hosts Quiz-o-Tron, a monthly science-themed quiz show and podcast that pits comedians against nerds. There is an asteroid named in her honor. Twitter @rebeccawatson Mastodon Instagram @actuallyrebeccawatson TikTok @actuallyrebeccawatson YouTube @rebeccawatson BlueSky

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