"Nothing for us without us!"
When PrEP4All co-founders James Krellenstein and Nick Faust shouted these words at Centers for Disease Control and Prevention (CDC) Director Robert Redfield, M.D., at AIDSWatch in Washington, D.C., on April 1, it was like they planned it all along.
"We funded it! You can get us a seat at the table," Krellenstein yelled. "We watch our friends get infected because they can't afford a drug that costs six dollars to produce, and they [Gilead] charge two thousand dollars [for] it!"
"We pay for it, you own it! Release the patents!" Faust shouted.
Redfield scratched his head and struggled to respond. The face-off seemed to make him uncomfortable. Some said the action was reminiscent of old ACT UP days, and it was inspiring and delicious to watch.
What Krellenstein and Faust were shedding a light on is their argument -- echoed by many other HIV activists -- that Gilead Sciences, the pharmaceutical company that makes the HIV treatment and prevention drug Truvada (FTC/tenofovir disoproxil fumarate), has inflated the price of the drug so exorbitantly that despite copay cards and assistance programs, the red tape involved in accessing it may make it harder to get or stay on for many who need it. Since pre-exposure prophylaxis (PrEP) became approved in 2012, activists have been fighting not only Gilead on the price, but also challenging insurers, which use various cost-containment measures like monthly prior authorization and forcing patients to use their mail-order specialty pharmacies.
According to AIDSVu, less than 10% of the people who are vulnerable to new HIV infection are using PrEP. Moreover, The Washington Post reported that the U.S. government, not Gilead, owns the patents for Truvada as PrEP. If the government enforced the patents and collected the taxpayer's share of profits, it could provide a funding stream for the CDC to possibly fund a universal PrEP program. The CDC could also use the patents to make the price of Truvada more affordable.
"We weren't originally planning on a direct confrontation with the CDC director," Krellenstein said.
That changed when it was announced that Redfield would be speaking to the advocates at AIDSWatch, a large annual HIV community advocacy event in Washington, D.C., which took place on April 1 and 2. "It was literally like two or three days beforehand," Faust said, "at which point James and I were like, we have to be there no matter what."
"One of the things we wanted to get done at AIDSWatch before we knew that Robert Redfield was going to be there was on-the-ground community outreach to different organizations from across the country," Faust said. PrEP4All had known about the CDC patents since August 2018, but the information didn't come out publicly until The Washington Post published an article in late March.
"We spent a lot of time enlisting people up at Yale Law School and Yale School of Public Health to analyze the patents, which took a couple of months," Krellenstein explained. "We also had some other i's that we had to dot and t's that had to be crossed before we were ready to go public [with the information]. So we weren't talking about it."
"One of the reasons why we had to wait so long to talk about it," Faust said, "was that the government shutdown pushed us back a few months. We were doing some Freedom of Information requests to get all the necessary information, and we really got pushed back."
Krellenstein explained that they were very eager to tell the world but knew that the story about the CDC patents would be more impactful as an exclusive from a major news outlet. "Maybe, in fact, our screaming [at AIDSWatch] was sort of the eruption of excitement and frustration," he said.
At that AIDSWatch meeting of more than 500 advocates, the two distributed documents to the advocates that outlined PrEP4All's demands to the CDC, including the enforcement of the patents, the call to dramatically reduce the price of Truvada to a maximum of $15 per month, and the need to create a national PrEP access program. "The Trump administration says it wants to end the HIV epidemic by 2030. That will not be possible without affordable PrEP for all," one of the documents states.
"We have to give a big shout out to the People Living with HIV Caucus. They had our back all the way," Faust said. "They had made signs beforehand and really grouped up with us beforehand to have this confrontation."
Krellenstein noted that it was a nerve-wracking morning and described it evocatively as that feeling "when you first sit down at one of those things and it seems sort of formal, and everybody's eating breakfast, and you know that you're going to have to be up there screaming at some point."
Redfield's talk did start rather formally. But the crowd broke the ice once Redfield referred to people living with HIV as "infected," which has long been viewed by advocates as a stigmatizing term.
"Before we were screaming, other people were screaming," Krellenstein said. "The idea that you're referring to people living with HIV as 'infected' is a really dangerous -- it's stupid. It's really, really stupid. It shows a level of ignorance and indifference that is extraordinarily upsetting."
Once the protesting began, it was difficult for Redfield to keep the crowd interested in hearing his planned talk. Though he is a scientist who has worked in HIV for decades, he apologized, saying, "I'm still learning."
Faust said, "The fact that Redfield's making such basic errors shows a lack of community concern."
"I think it goes straight to [why] we ended up interrupting him and disrupting," Krellenstein said, "over the idea that somehow he believes that he has the right to make decisions regarding the American people's intellectual property on a lifesaving drug without any input from impacted communities -- [it] is incredibly undemocratic and incredibly disturbing."
On the second day of AIDSWatch, when advocates met with representatives on Capitol Hill, Krellenstein and Faust met with staffers from the offices of both New York Senator Kirsten Gillibrand and New York Congressmember Alexandria Ocasio-Cortez, as well as Texas Representative Lloyd Doggett and members of the House Energy and Commerce Committee.
"We are letting them know that we are not letting this go quietly," Faust said. "We're providing a lot of information to Congress for the oversight committee. We're not going to let them brush this under the rug."
A growing number of community groups are coming together with PrEP4All. "Since AIDSWatch, we're on outreach calls like every 30 minutes," Krellenstein said. "They want to support us and they want to sign on, and everyone understands the need for a national HIV prevention program."
But even as they move forward with their efforts, the leaders of PrEP4All appreciate how inspiring the moment was in which they directly challenged the leader of the CDC.
"One of the greatest things about it was that this was [a group] all in it together across the so-called sero divide," Krellenstein said. "It was people living with HIV standing side by side with people vulnerable to HIV. And that was a really moving thing to see."