Enough Is Enough! In the Face of Drug Gouging, Noted AIDS Activists Remobilize

Winnie McCroy READ TIME: 4 MIN.

Last fall, AIDS activists were in an uproar after "Pharma Bro" Martin Shkreli, the 32-year-old CEO of Turing Pharmaceuticals, boosted the price of the lifesaving drug Daraprim 5,000 percent -- from $13.5 per pill to $750. His promise to lower the price was a hollow one. Soon after, the FBI took down this new poster boy for corporate greed over securities fraud. But it was hardly the end of pharmaceutical price gouging.

"The enormous, overnight price increase for Daraprim is just the latest in a long list of skyrocketing price increases for certain critical medications," said Sen. Bernie Sanders and Rep. Elijah Cummings in a statement to the Washington Post. "Americans should not have to live in fear that they will die or go bankrupt because they cannot afford to take the life-saving medication they need."

Democratic presidential candidate Hillary Clinton called the pricing "outrageous" and promised to take action on it, and the Infectious Diseases Society of America said the price increase was "unjustifiable for the medically vulnerable population" and "unsustainable for the health care system."

This was hardly the first price hike for Daraprim, a drug that prevents toxoplasmosis in people with HIV/AIDS. After CorePharma sold the marketing rights to the lifesaving drug in 2015, its price jumped from $1 per pill. At that time, there were about 12,700 scripts for total sales of $667,000. By 2014, the number of scripts had dropped to 8,821, but the sales of the drug totaled $9.9 million.

As much as people want to believe that villains like Shkreli are the exception, pharmaceutical price gouging is commonplace. Currently in AIDS activists' crosshairs is the pharmaceutical giant Gilead, which they allege is profiteering on the success of Truvada, now widely used for pre-exposure prophylaxis, or PrEP.

With a functional cure for AIDS now within reach, it's more important than ever to keep the drug pipeline open with a steady stream of lifesaving drugs at an affordable price.

In December, a group of noted AIDS activists who first tackled the issue of HIV drug price gouging back in the '90s issued a statement calling out pharmaceutical giant Gilead. The group, which included Peter Staley and Larry Kramer, slammed the makers of PrEP drug Truvada and called for the profiteering to end.

"We are fed up with Gilead's abusive pricing of its near monopolies in drugs that treat and prevent HIV," they wrote in a statement published on Peter Staley's Facebook. "Truvada as PrEP was not their idea, and came to market based on research they didn't pay for. Gilead's PrEP profiteering must end. Full access to lifesaving drugs has been a hallmark of our movement, and we will join with AIDS activists across America and around the world to double-down on this push for health equity."

Staley and Kramer were joined by James Krellenstein, Jim Eigo, and Matt Ebert to make AIDS history, reuniting in the same place where GMHC was first formed decades ago. And as they did in the early days of Act Up, these activists bonded together for the greater good of the community.

"Although we may not see eye-to-eye on every issue we debated tonight, we all agree that Pre-Exposure Prophylaxis (PrEP) is highly effective at protecting a person from HIV infection," wrote Staley. "While PrEP isn't for everyone, any individual who thinks they are at risk of getting HIV should have easy access to it, without judgment. PrEP, along with condoms, TasP (Treatment as Prevention), and better access to healthcare, are now essential public health tools in lowering HIV infections among gay men and trans women. We must use every tool necessary to help them -- and to help all those at risk -- stop this virus, once and for all."

The statement seems to be a reversal on Kramer's earlier position on PrEP.

"Anybody who voluntarily takes an antiviral every day has got to have rocks in their heads," Kramer told the New York Times in 2014. "There's something to me cowardly about taking Truvada instead of using a condom. You're taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything."

Regardless of one's moral convictions, the fact is that Truvada has proven extremely effective in preventing new HIV infections. And many now are calling on the government to order Gilead to drastically reduce the price of Truvada, as PrEP could bring them 200 million new patients.

Preventing new HIV infections is much cheaper than extended antiretroviral therapy and could drastically affect the epidemic, making the end of AIDS a realistic goal. But recent statistics show that there are many doctors who aren't even aware of the efficacy of PrEP and are missing opportunities to encourage safer sex by prescribing it.

When the AIDS epidemic began in the '80s, the LGBT community banded together to force drug companies to fast-track potential treatments. Thirty years later, we are very much in the same predicament. Only now, we have reached the light at the end of the tunnel. New drugs like PrEP with Truvada can prevent people from contracting HIV, and our current arsenal of antiretroviral therapies can give those living with HIV/AIDS an undetectable viral load.

As Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, notes: "It is often said that we were slow to recognize the seriousness of the emerging HIV pandemic during the early 1980s. At the time, our ability to fight its spread was meager. Today, we have the tools to end this modern-day plague. We must not squander the opportunity. History will judge us harshly if we do."


by Winnie McCroy , EDGE Editor

Winnie McCroy is the Women on the EDGE Editor, HIV/Health Editor, and Assistant Entertainment Editor for EDGE Media Network, handling all women's news, HIV health stories and theater reviews throughout the U.S. She has contributed to other publications, including The Village Voice, Gay City News, Chelsea Now and The Advocate, and lives in Brooklyn, New York.

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