Truvada activists were shocked when vocal critic Larry Kramer changed his tune. However, with gobsmacking prices set by Gilead, and a lack of campaigns for people other than lesbian humen, there is a long way to go.
James Krellenstein and boyfriend Matt Ebert were stuck in traffic on Highway 17 on the way in to New York City, with boeuf bourguignon and butternut squash soup cooling in the back seat, when Krellenstein, a 24 -year-old HIV activist, texted friend Peter Staley: I am freaking out.
After all, Krellenstein and Ebert werent only heading in for dinner. Krellenstein had planned a showdown with Act up and Gay Mens Health Crisis cofounder Larry Kramer. And Kramer has been clear about how he feels about Truvada, an HIV drug that they are able prevent HIV-negative people from acquiring the virus. Famously, he has declared that those who take Truvada when condoms are accessible are cowardly, and said they must have boulders in their heads. Krellenstein, who is one of those people, as well as a staunch Truvada advocate, was determined to convince Kramer to sign a prepared statement in support of the prevention approach, known as pre-exposure prophylaxis( PrEP ). He said he spent the week before the dinner tracking down every study, every fact that supported PrEPs use.
468, 000 straight girls are said to be good candidates for the drugjust 24,000 less than lesbian humen .
It turned out, he neednt have worried.
It wasnt even an debate, told Krellenstein. I was shocked.
Indeed, on Monday night, Dec. 7, writer and activist Larry Kramer set down the saber, picked up the pen, and signed whats being “ve called the” PrEP Dinner statement. It immediately went viral Tuesday morning when Staley posted it to Facebook. Headlines blared, Larry Kramer has changed his mind about PrEP. Now, the only high-profile PrEP opponent left is Michael Weinstein, president of the AIDS service organization the AIDS Healthcare Foundation, whom some have begun to call a PrEP denialist.( Full disclosure: Including me .)
Its been a banner year for Truvada. An ex of Charlie Sheens recently uncovered she used the pill to prevent HIV when she was dating Sheen. Dr. Anthony Fauci, director of the National Institute for Allergy and Infectious Disease at the National Institutes of Health, declared at the recent National HIV Prevention Conference that the debate is over for PrEP. If you use it, it works. Truvada use for prevention has skyrocketed, from 1,274 people in 2012 to as many as 30,000 people today, and it seems to be especially popular among those who could benefit from it most.
And now, this. Signers of the statement hope Kramers endorsement will spur wider adoption, especially among gay men and trans girls, groups whose HIV rates far outstrip their demographic significance.
We think it was a bit of history, told Staley, founder of the Treatment Action Group, a longtime member of Act up, and member of New York Gov. Andrew Cuomos Aiming the Epidemic Task Force. He and Ebert were the ones who arranged the dinner, to bring Krellenstein and Kramer together in one room. According to Krellenstein, Staley told him, You need to talk about the issues face to face. As fun as insulting people on Facebook is, it doesnt do anything.
The PrEP Dinner Accord
The conversation did, indeed, start on Facebookor, rather, the fight did. Starting in March and continuing on Facebook through last month, Krellenstein has posted Kramers remarks to his timeline and on an Act up Facebook group with palpable vitriol. Of Kramers interview in The Advocate in March, Krellenstein referred to Kramer as a man who managed to debase his own internalized homophobia into a narrative that would stifle HIV prevention for decades.
For his part, Kramer called Krellensteins remarks just rude.
But Krellenstein said he wasnt only venting. He was worried that Kramers negativity toward PrEP could influence his peers, who are acquiring HIV at alarming rates.
When you live in a country where three gay humen an hour get infected with HIV, this epidemic is not stopping , not slowing downand he called us all cowards, Krellenstein told. I was fucking furious. I was I was beyond angry. Im still kind of amazed I sat down and had dinner with him.
But he did, and Kramer did. And the fighting terms dissolved. Kramer was on board.
What went of it was a public accordthree short paragraph, heavy on the historical importance( WeAIDS activists, new and old, aged 24 to 80 have just violated bread in the same apartment where GMHC was formed .). It built three main points: One, that the activists agree that Truvada is effective in warding off HIV infection in lesbian men and trans girls. Two, that Gilead Science, the California-based company that stimulates the medication, must end its PrEP profiteering and construct the medication available at a reasonable cost. And three, that its going to take more than only PrEP to end HIV.
PrEP, along with condoms, TasP( Treatment as Prevention ), and better access to healthcare, are now essential public health tools in lowering HIV infections among lesbian men and trans girls, the statement told, in part. We must use every tool necessary to help themand to assist all those at riskstop this virus, once and for all.
A Power Bottom Move
For Maria Mejia-Laing of Miami reading the statement was like dj vubut not in a good way. It reminded her of earlier this year, when she attended the Conference on Retroviruses and Opportunistic Infections. Shes been HIV positive for 27 years.
Every seminar, every symposium, it was all about men who have sex with humen, told Mejia-Laing, who runs two Facebook groups for people with HIV, one in Spanish and one in English, with a combined membership of 60,000 people worldwide. I always came to the front and ask the same thing: What about womentrans girls as well? Women are get infected, as well. I believe in that dinnerand a lot of people mentioned it online as well, it was the same faces, the faces of white gay men.
As girls, we are invisible, she told. To Mejia-Laing, the omission matters, she told, because Kramer matters. She called him our role model.
Indeed, new calculates from the CDC say 1.2 million Americans could benefit from Truvada as PrEP. Nearly 500,000 of this really is lesbian humen. Another 115,000 are injection drug users as well as an additional 157,000 straight men who would be good candidates, according to the CDC. As for straight girls( not counting trans girls )? Four hundred and sixty-eight thousand straight girls are said to be good candidates for the drugjust 24,000 less than gay men.
They can change[ the statement ], she told. And they should.
Mejia-Laing was glad the statement included trans girls, even though some activists have bristled at trans girls being lumped in with gay humen again. Trans activists fought hard to stop researchers from categorizing trans girls as men who have sex with humen in their PrEP studies. According to a meta-analysis of 29 published studies, nearly one in three trans girls have been diagnosed with HIV, and their HIV infection danger is nearly 50 periods as high as for other adults, regardless of gender.
Thats why Staley fought hard to include them in the statement. But Krellenstein told, in retrospect, he would rewrite the statement to include everyone. After all, straight girls( whether trans or not) and gay men who are the receptive partners are in the same positionthey have an increased risk of HIV, and rarely have the power to control whether the top( or man) wears a condom. As Staley told, Truvada is a power bottom move.
Thats not the only criticism the statement generated. As soon as the statement “re coming out”, people started calling on Kramer to publicly apologize and repeal his past statements against PrEPsomething Kramer said he wont do.
I have nothing to apologize for, he told The Daily Beast. With what was known, or rather, unknown at the time, my views, subjects of concern and fears were perfectly valid. Some of them still are.
Indeed, Kramer recurred a statement he made to the New York Times that Truvada is chemotherapy. Its not aspirin, he added. There are side effects.
Those side effects can include kidney injury and bone loss though in so far kidney trouble has rarely been reported among HIV negative patients( its more common among people who take Truvada for HIV treatment ). Thats why people taking the medication must have quarterly doctors visits, and lab work for kidney function, bone mineral density, HIV and other sexually transmitted diseases.
But Kramer added that he has been swayed by recent real-world studies that have found it effective, safe and not associated with any new cases of HIV among those taking it.
Two years ago, we just didnt have the facts and figures that we have now, which are impressive, he told. Theres more real-world experience. We also have a statement out of NIAD that everyone should be taking it. Thats where we are now, and its not a bad place to be, but its still a complicated place.
One of those complications is cost. At $13,000 a year without insurance, Truvadas sticker price has caused more than one person to question whether the option is out of reach.
Thats where Kramer comes in. Hes the one that added the PrEP profiteering piece to the statement.
With PrEP, we have delivered to Gilead a huge patient population, a huge customer population, and all theyre doing is milking us dry, Kramer told. If Congress isnt going to do anything about controlling the unruly pharmaceutical companies from charging whatever they want, we need to act up and construct our voices heard again.
In this, Kramer and his group are not alone. Since the FDA approved Truvada for prevention in 2012, PrEP activists around the country have been pressuring Gilead to increase its patient assistance program and copay assistance programs to construct them more accessible, as well as working with nation and government agencies to get around the drugs high cost. So far, theyve been effective in increasing the amount Gilead will pay for copays to $300 a month, and now the medication company permits patients to use the full amount of the annual copay rebate $3,600 up front, to cover high deductible health plans.
The next step, told Staley, is to collect enough narratives of PrEP users maxxing out their $3,600 assistance and still struggling to afford Truvada, to push Gilead to increase the overall benefit.
Kramer wants the cost fell, period.
It will be an uphill climb. This is the drug company, after all, that Congress investigated for 18 months over the pricing of its new hepatitis C drugs, Havroni and Sovaldi. Sovaldi, famously, was initially priced at $84,000 for a course of treatment, or $1,000 a pill. The report, released Dec. 1, found a pricing and marketing strategy designed to maximize revenue with little concern for access or affordability. Havroni had a sticker price even higher.
And thats complicated by the fact that, by law, neither Medicare, which incorporates seniors, or Medicaid, which incorporates the poor, pregnant, and incapacitated, are allowed to negotiate with medication manufacturers on price.
Gilead knew these prices would set treatment out of the reach of millions and cause extraordinary problems for Medicare and Medicaid, but still the company went ahead, Sen. Ron Wyden( D-Oregon ), said in a prepared statement. If Gileads approach to pricing is the future of how blockbuster drugs are launched, it will cost billions and billions of dollars to treat only a fraction of patients.
Lynda Dee, co-chair of watchdog group The Fair Pricing Coalition, isnt astonished. Shes worked with Gilead almost since its formation, and compared the companys altered in approach to something out of Treasure of the Sierra Madre.
Did you ever should be noted that movie? They go up into the mountains for gold and they all go crazy with greed, she told. Ive worked with people from Gilead since it started. They were nice people, sane people. But the more theyre criticized, the more they come out swinging.
They were a little more conciliatory when The Daily Beast contacted them, pointing out the accommodations theyve built with their assistance programs since Truvada was approved for PrEP.
Still, they said, We stand behind the pricing of our therapies because of the benefit they bring to patients and the significant value they represent to payers, providers, and our entire healthcare system.
For her portion, Dee said shed be surprised if Gilead significantly changed the price of Truvada before its patent expires in 2021. But, she added, Kramer can only help.
Love him or dislike him, he is effective at procuring attention to whatever he endorses, she told. I greet his fighting spirit to this effort. Peoples lives are literally at stake.
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