New York City Council Speaker Corey Johnson Calls For Breaking The Patent On HIV Prevention Drugs11:06
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New York City Council Speaker Corey Johnson speaks on July 23, 2018 at City Hall in New York City. (Drew Angerer/Getty Images)
New York City Council Speaker Corey Johnson speaks on July 23, 2018 at City Hall in New York City. (Drew Angerer/Getty Images)

New York City Council speaker Corey Johnson has joined the campaign #breakthepatent, which is calling on the federal government to break the patent Gilead Sciences has for the HIV-prevention drug Truvada, also known as PrEP.

Ending the patent would allow other companies to make and market the drug, lowering its price and making it more accessible. Truvada prevents HIV almost 99 percent of the time, but it is much more expensive in the U.S., Johnson (@NYCSpeakerCoJo) tells Here & Now's Jeremy Hobson.

“In other countries around the world, Truvada costs about $100 a year for a patient. In the United States, it's almost $20,000 a year for the same exact medicine,” Johnson says. “And so the case we're making is that given that American taxpayers and the [National Institutes of Health] have funded this research, the patent should be broken so that more people can get access to it, to prevent anyone from becoming HIV positive.”

For Johnson, this campaign is personal. The 36-year-old council speaker was diagnosed with HIV at 22 before PrEP was created. He is one of few openly HIV-positive elected officials in the U.S.

“I feel like I'm doing this and all the activists are doing this really on the shoulders of all of those that came before us,” Johnson says. “People who are part of ACT UP and Queer Nation, people that shut down the New York Stock Exchange in the 1980s and 1990s and marched and put their lives and bodies on the line at the height of the AIDS epidemic.

“AIDS isn't on the front page of newspapers anymore,” he says, “but it is still an epidemic in the United States.”

Interview Highlights

On how the government could legally break the patent on Truvada

"There has been a coalition of activists who have been advocating for breaking this patent that Gilead has right now, the company that has manufactured PrEP, and saying that the NIH should march in, which is a technical term, and actually break the patent. 

"The NIH has the ability to do this. They have never before used their march-in rights, and the march-in rights come from a law passed by Congress called the Bayh-Dole Act in 1980, which allows these patents to be broken in certain cases that involve research that resulted from federal funds. Given how broken, I believe, our health care system is nationally, I'm not entirely optimistic, but there is a first time for everything, and I think in this instance, it's important. President Trump, I don't think he's done much for the LGBT community, but he did say in his State of the Union address a couple of weeks ago that he wanted to end the AIDS epidemic in the United States of America. And this could be a good way to start down that path."

"It's really a matter of resources and leadership. It's not a matter of science and getting it right. We know what to do to prevent people from getting HIV."

Corey Johnson

On why Truvada is cheaper in other countries 

"Because in other countries where the health care system is different and where big pharmaceutical companies aren't able to inflate the cost of drugs, people can get this at an affordable price or generic versions of the drug. In the United States, the U.S. government doesn't regulate the prices of these drugs and bring them down to what the cost is, which is why you see Americans, whether they're someone that has diabetes or needs to take PrEP or has cancer, the price of the medication they need could be wildly expensive, and that's why, I think, we need to break the patent in this instance."

On the rate of HIV transmission being at an all-time low in New York City 

"I think PrEP is an important variable in that number. One of the things I'm really proud of is before I was speaker of the council, I was chair of the health committee in the city council, and over the last six years, we've gotten New York City and New York State both to put in tens of millions of new dollars on preventing people from being infected. That just hasn't included greater access to Truvada and to PrEP. It's included a whole host of things in making sure that people who currently are HIV positive remain undetectable, so they can't pass along HIV to anyone else. The number ... shows the lowest infection rate from two years ago that's ever been recorded since the start of the epidemic. It's really a matter of resources and leadership. It's not a matter of science and getting it right. We know what to do to prevent people from getting HIV."

On Gilead's response to the #breakthepatent movement

"Well, Gilead, of course, has been resistant to this. They have said that they have discount programs. They help people who don't currently have insurance or have insurance that may not cover it to be able to get it at a more affordable rate. But that doesn't open up the doors and the windows for access to all of the folks that really really need it.

"I feel like so much of my ability to run for office and to be speaker of the city council and to do it as an openly gay, openly HIV-positive man is really because of all of the activists that came before me."

Corey Johnson

On his position as one of the few openly HIV-positive elected officials 

"It's really kind of crazy because in 2004 as I said when I found out I was HIV positive, I was despondent. I was depressed. I was ashamed. I wasn't sure I could ever talk about this, and to go from that moment as a scared and vulnerable and isolated 22-year-old to now being the speaker of the New York City Council and one of the highest-ranking elected officials in the country who is openly HIV positive, it's sort of amazing my own journey, and at the same time, I see it as a real responsibility to fight for others who may not have this position of influence to ensure that everyone gets access to the care that they need.

"And we're coming up on the 50th anniversary of Stonewall in June of this year, and I feel like so much of my ability to run for office and to be speaker of the city council and to do it as an openly gay, openly HIV-positive man is really because of all of the activists that came before me, many people who I don't know. And so I really do this on their shoulders and in their names continuing to fight for LGBT people and vulnerable people as all of the activists did before I ever even realized I was gay, which allowed me to run for office and be in this position today."

On how stigma prevents the country and the world from eliminating HIV and AIDS

"Well, it's clearly a big issue, but also there are some, I guess, interesting things that we know now because of Truvada and PrEP, which is if you're on Truvada and PrEP, again you [have a] 99 percent chance you're not going to become infected. And if you're someone who's HIV positive like myself and who takes medicine every single day — I am what's called undetectable, which means I can't transmit HIV to another person — because of those two things it has become easier for folks to actually talk about being HIV positive.

"The vast majority, not all but many many of the new infections that occur, are people that don't know they're HIV positive. They don't know what their status is because they haven't gotten tested, and then because they don't know it, they end up transmitting HIV to someone else. And so it's really really important to talk about HIV, talk about being HIV positive yourself. You know again, I couldn't imagine that 15 years ago when I found out that I was HIV positive that I would be on a radio show talking about my status. And it shows the importance of breaking down the stigma so that there isn't shame and fear associated with this because that's what contributes to this epidemic. And it's what has contributed to the epidemic from the very early days of it."

On President Trump's declaration to end HIV in 10 years 

"It was interesting to watch the State of the Union and to hear him say those words because over the last two years, his administration has been one that has sought to cut funding at the federal level for all sorts of medical research. A lot of the folks that he's appointed to key positions in his administration are vocal opponents of LGBT rights and people. And so it was nice to hear it, but words, I guess, don't really matter at this point. It's really about actually actions and doing the right thing. And I think those of us who work on these issues would really love to see leadership at the federal level, but I'm I'm really skeptical at this point."


Julia Corcoran produced and edited this interview for broadcast with Kathleen McKenna. Samantha Raphelson adapted it for the web. 

This segment aired on March 4, 2019.

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Jeremy Hobson Twitter Co-Host, Here & Now
Before coming to WBUR to co-host Here & Now, Jeremy Hobson hosted the Marketplace Morning Report, a daily business news program with an audience of more than six million.

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