In the 1980s, AIDS activists demanded action from the U.S. government in a dramatic way, and got results. Now, they have a new goal: more affordable access to an HIV prevention pill.

ARI SHAPIRO, HOST:

In the 1980s and ’90s, a group of AIDS activists called ACT UP demanded action from the U.S. government in a dramatic way.

(SOUNDBITE OF PROTEST)

UNIDENTIFIED PEOPLE: Act up. Fight back. Fight AIDS.

SHAPIRO: This was 1988. AIDS was a national crisis. Activists swarmed the Food and Drug Administration in Rockville, Md. They laid down beside paper gravestones.

(SOUNDBITE OF PROTEST)

UNIDENTIFIED PERSON #1: You’re killing us. You’re killing us.

SHAPIRO: And they got results, including price reductions on HIV drugs that save lives. Now AIDS activists have a new goal – more affordable access to an HIV prevention pill. The pill is called TRUVADA, or PrEP. It’s made by Gilead Sciences and can cost up to $1,800 a month. NPR’s Selena Simmons-Duffin has the story.

SELENA SIMMONS-DUFFIN, BYLINE: A few weeks back at the AIDSWatch conference, Dr. Robert Redfield, who directs the Centers for Disease Control and Prevention, spoke.

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ROBERT REDFIELD: In this initiative…

SIMMONS-DUFFIN: He was selling the Trump administration’s plan to end HIV in America by 2030.

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UNIDENTIFIED PERSON #2: People can’t afford it because you don’t enforce it.

SIMMONS-DUFFIN: Things got hectic.

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UNIDENTIFIED PERSON #3: The medication we need…

SIMMONS-DUFFIN: Then earlier this month at the Gilead shareholders meeting…

EMILY SANDERSON: Gilead, your price-gouging is killing people.

SIMMONS-DUFFIN: A video shows a 20-something woman in the room facing men in suits who exchange looks.

SANDERSON: I’m disgusted by the fact that you would put profiteering ahead of the lives of people like me.

SIMMONS-DUFFIN: The group behind these disruptions is called PrEP4All, an offshoot of ACT UP. They’re out in force now because of the activity around the government’s HIV 2030 plan. That goal can only be reached if more people get on PrEP, which stands for pre-exposure prophylaxis. Only a fraction of the 1 million people at risk for HIV are on it.

PrEP4All wants that $1,800 a month for PrEP way lower, more like the $5 a month it costs in other countries. They have two approaches – shame Gilead into voluntarily lowering the price and pressure the government into challenging Gilead’s patent so generic competition forces the price down. Let’s start with Gilead.

SANDERSON: Our goal is to get Gilead Sciences to release the patent on TRUVADA, or PrEP.

SIMMONS-DUFFIN: Emily Sanderson is a co-founder of PrEP4All. You heard her confronting Gilead shareholders.

SANDERSON: Gilead has the power to make PrEP available right now for everybody, and they’re not doing it.

SIMMONS-DUFFIN: In a statement, the company told NPR it, quote, “respects the work of HIV advocates and has been engaged with the advocate community for decades.” But that price tag remains.

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DANIEL O’DAY: The current list price is $1,780 in the United States.

SIMMONS-DUFFIN: That’s CEO Daniel O’Day testifying about this issue on Capitol Hill a few weeks ago. Gilead is the only company making this drug in the U.S. right now. It’s under patent for a limited time, and shareholders want to see profits.

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O’DAY: The pricing as set in the United States takes into account the innovation it brings, the cost of the health care of treating an HIV patient, the ability to invest back in research and development and then also to make sure our access programs are effective.

SIMMONS-DUFFIN: Gilead argues the price isn’t the problem. Lack of awareness, stigma and homophobia are the problems. And they say few pay the full list price. Gilead provides the drug at a discount to government programs. They just donated drugs to the CDC to cover some uninsured patients. And people with high deductibles can use its copay assistance program. PrEP4All activists are dismissive of these efforts, in Jake Powell’s case, because of personal experience.

JAKE POWELL: Gilead’s copay assistance program for the first year paid out the full cost of those first few months to the point that my insurance then kicked in.

SIMMONS-DUFFIN: And paid full price for TRUVADA. The next year, Powell’s insurer stopped counting Gilead’s payments towards the $5,000 deductible. Powell would have had to pay out of pocket.

POWELL: I was off it for about six months because I couldn’t afford it. It was really frustrating. I was definitely scared in a way that I was used to not having to be scared.

SIMMONS-DUFFIN: PrEP4All says to Gilead, you’ve made billions already; just lower the cost of the drug. To the government, PrEP4All says…

SANDERSON: The CDC can come in and reduce the cost of PrEP and provide it at an affordable price.

SIMMONS-DUFFIN: That’s Emily Sanderson again. Activists make two points – that the CDC has its own patents for PrEP the agency could be enforcing, something Gilead disputes, and that taxpayer money was used in the studies underlying Gilead’s TRUVADA patent. The government has the power under the Bayh–Dole Act of 1980, they argue, to march in and break Gilead’s patent in the name of public health and let generic competition bring the price down.

SANDERSON: This PrEP pricing issue is a fixable problem. And we can get PrEP to everyone who needs it.

SIMMONS-DUFFIN: Neither the CDC nor Gilead have shown signs of being moved by these arguments. If the activists don’t convince them to act, the 1 million people at risk for HIV will have to wait until Gilead’s TRUVADA patent expires next fall and then wait again for generic competition to possibly lower the price closer to that $5 a month people get in the rest of the world. Selena Simmons-Duffin, NPR News.

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