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Articles tagged with: AIDS

Oct22

PrEP wars: The demonization of people using Truvada for prevention has backfired

Wednesday, 22 October 2014 Written by // Guest Authors - Revolving Door Categories // Dating, As Prevention , Gay Men, Features and Interviews, Sexual Health, Health, International , Treatment, Lifestyle, Opinion Pieces, Population Specific , Revolving Door, Guest Authors

Poz AIDS activist Jim Pickett says hard-core PrEP opponents “distrust and mischaracterize science – either due to true misunderstanding or to cynical manipulation. They are stuck in a mind-set that posits condoms as the only valid form of HIV prevention."

PrEP wars: The demonization of people using Truvada for prevention has backfired

This interview with Jim Pickett, Director of Prevention Advocacy and Gay Men’s Health at AIDS Foundation of Chicago was originally published by The Warning, a Francophone LGBT health organization, here. (version française ici 

About Jim Pickett: A gay man living with HIV since 1995, Jim Pickett is Director of Prevention Advocacy and Gay Men’s Health at AIDS Foundation of Chicago (AFC). His new prevention technology portfolio consists of projects addressing ARV-based prevention, including PrEP and microbicides, and he leads the global advocacy efforts of IRMA – International Rectal Microbicide Advocates. He has long advocated for a holistic, assets-based approach to gay men’s health. POZ Magazine honored his efforts in 2010, 2011 and 2012 by including him in the magazine’s “Top 100” lists, calling him a “soldier... instrumental in fighting for much-needed new prevention methods and undeterred by subjects many would prefer to ignore." In 2005 he was inducted into Chicago’s Gay and Lesbian Hall of Fame by Mayor Richard M. Daley and has run multiple full and half marathons to raise money for HIV/AIDS prevention and care programs. With marathons in his past, Jim mostly runs for the train, and at the mention of cookies or cake.

Hi Jim. Recently, 142 leading HIV/AIDS and health organizations hailed and supported new HIV PrEP guidelines from the US Centers for Disease Control and Prevention (CDC). Why such an endorsement?

Jim : My organization helped to spearhead this effort, and was one of the originating signers. We thought it was important to demonstrate the broad support for PrEP among AIDS service organizations and other allied groups in the United States. We wanted to communicate the depth and breadth of support for PrEP nationally to communities at elevated risk for HIV, to the general public, and to the media.

What are the challenges for PrEP access in the USA? Would you say that PrEP is still a difficult fight in the USA?

We continue to face challenges with PrEP access in the United States. There are indeed difficulties. First, we have providers who are not aware of PrEP, who are misinformed about PrEP, or who are reacting to this intervention in judgmental, moralistic ways. HIV-negative individuals are going to their health care providers and asking for PrEP, and in many instances, these health care providers have no experience with HIV, with prescribing HIV meds, testing for HIV and other STDs, or talking about sex. So many of these folks are just not trained or culturally competent enough to provide PrEP at this point – which, of course, is much more than a prescription and includes regular testing, monitoring, and counseling.

The second major challenge we are facing is access to health care. On the plus side, we now have the Affordable Care Act which has made health insurance available to many millions of Americans who previously did not have access. About half the states expanded their Medicaid programs – which is public health insurance for low income people. Those are great strides forward, and because of them, we have people who are able to get health care and PrEP. But, half the states did not expand Medicaid – many of them in the South, where HIV is a particularly acute problem. Even for people who have insurance, the cost-sharing attributes of many plans make Truvada too expensive to access – even with the drug maker Gilead’s programs that are designed to ease access. In the United States, we do not have access to generic versions of Truvada – the retail cost of this drug is approximately $15,000 a year. The cost of this drug is definitely a barrier.

Finally, we still have communities that are hard-hit by HIV who don’t know about PrEP, or don’t have correct, unbiased information.

Layered over all of this is a response from some that positions Truvada as a shameful choice, a choice made by “reckless, careless” people who “should just use condoms.” The discussion often sounds like the battles we have had for going on 50 years around oral contraception – in which women are “slut shamed” for choosing that method of preventing conception. Interestingly, and sadly, most of the shaming, finger wagging, and hysteria we are seeing around Truvada is coming from gay men and directed towards other gay men – the population bearing the brunt of the epidemic, the only U.S. population in which HIV rates are rising.

Who are the PrEP opponents? What do they say? Would you see them as homogenous?

I am not sure that PrEP opponents are homogenous. But the hard-core opponents do have some things in common in my opinion. They distrust and mischaracterize science – either due to true misunderstanding or to cynical manipulation. They are stuck in a mind-set that posits condoms as the only valid form of HIV prevention – despite decades of data, and millions of infections across the planet – that indicate condoms are not universally acceptable and not universally used. They seem to fantasize that the FDA, the CDC, the WHO, and scores of ASOs and advocates in every corner of the world are all in bed with big pharma and don’t really care about helping people stay HIV negative, but are more interested in helping to shill a pill. I call BS on that.

If condoms were such a fantastic option for everyone, we wouldn’t be having this conversation. If condoms were doing the trick, our country would not have spent many billions of dollars over the years working to develop vaccines and other new prevention technologies. Hard-core opponents also seem to yearn for the days of terror that characterized the epidemic before the advent of highly active antiretroviral therapy. This terror was useful, at the time, to encourage people to “keep in line” and use condoms consistently and correctly. It is somehow a bad thing that, going into the 4th decade of the epidemic, most people are no longer resonating with fear and scare tactics. I call BS on that.

All this said, I think there are lots of smart, thoughtful people who have reservations about PrEP – regarding cost, long term toxicities, potential resistance, and figuring out how to get it to the people most in need of this intervention. These folks also express concern about our field’s overall priorities for prevention, and worry that we are focusing too much on a pill and ignoring other behavioral interventions, and the myriad structural problems that provide the kindling for HIV. I don’t see them as opponents. I see them as allies, and their cautionary voices are helpful and needed. The true opponents are not, in my view, in the least bit thoughtful. Apparently, they’d rather keep doing the same thing over and over and over and over….

How did you react about the David Duran article on the Huffington Post "Truvada Whores"?

What I love here is that “Truvada Whore” has been taken, re-appropriated into a movement with t-shirts and hashtags, and helped ignite and propel an advocacy movement among HIV negative gay men who are interested in, and excited by, the promise of PrEP. The demonization of people using Truvada for prevention has backfired – and I couldn’t be more delighted. In all my years, I’ve never seen this extraordinary level of enthusiasm and engagement around HIV prevention from HIV negative gay men. This domain had, up until recently, always been dominated by HIV positive folks (like me.) I must say I am thrilled to welcome this incredible energy and creativity and passion into the movement.

Does being a sophisticated and expensive technology play a role in its condemnation?

I do think there is a distrust of science and technology among some. I also think there is simply the fear and reticence around the new. Changing paradigms are challenging for a lot of people – it takes many of us a while to come around to anything new. Only a small number of people are early adapters – most of us tend to hang back a bit and just begin to dip our toes into the water a couple of years after a new technology is launched.

Moreover we can analyze from the dimension of responsibility: who has the power (in terms of prevention) with PrEP? Is it different compared with condom use?

There are a couple of things about PrEP that are brilliant. One – it puts the power of prevention into the hands of the receptive partner. It is the very first prevention intervention for the sexual acquisition of HIV which does not require negotiation with a partner. This puts bottoms of all genders in control – and I love that. Another really powerful thing about PrEP is that it is divorced from the direct act of sex. Taking this pill doesn’t happen when your hormones are raging and your hands are sticky.

PrEP is now available in Chicago, the city where you live and work, can you briefly describe the process of accessing it ? Is PrEP an easy word that can be used in a bar conversation/flirt? Some anecdotes?

In Chicago, like many cities in our country, people are accessing PrEP through their private doctors, through community health organizations, through the public health system, and in some cases, through research activities.

I don’t have many direct anecdotes as I don’t go to bars – but I think overall awareness is increasing. There has been a lot of coverage and discussion about PrEP in the media and on social platforms like Facebook and Grindr which has helped to educate people and begin to normalize it. We still have a lot of work to do, but things are improving. We have programs and doctors that are seeing more and more individuals who want PrEP.

What are the current issues of PrEP in terms of HIV/AIDS organizing? 

I am very excited about how the Affordable Care Act and PrEP are getting us to think about developing a continuum of care for HIV negative people. We all have, for several years now, been focusing on the “treatment cascade” for HIV-positive people. We rightly want to get people to know their status and link them into appropriate, quality care and treatment, and then retain them in care and treatment. We should be doing the same for our populations at elevated risk for HIV. When these individuals come for testing and receive a negative result – we should be linking them into health care, and PrEP could be a component of that for some folks who aren’t able to use condoms. We need a “care cascade” for HIV negative people.

There is significant movement for this idea nationally, being led by Treatment Action Group and amfAR, with enthusiastic support from many other organizations, including AIDS Foundation of Chicago.

The CDC want to put 500,000 US citizens on PrEP. Is it really feasible?

I am not sure if it is feasible, or if that number is the right number. What I do know is that we need to be making this available to populations where HIV is wreaking havoc – and in the U.S., that is particularly young gay black men. I want to be clear that not all gay men are at risk for HIV, and not all gay men need PrEP to help them prevention contracting HIV.

How are the different communities reacting to the new CDC guidelines that recommend daily PrEP for those at substantial risk of HIV infection? E.g. the Gay communities or other people and groups concerned by HIV, and doctors?

The CDC Guidelines have put PrEP on the radar of many health care providers for the first time. For other health care providers who have known about PrEP but were still hesitant, the guidelines gave PrEP a stamp of approval AND a clear set of instructions for the provision of this intervention. There has been similar effects among communities. When the world’s foremost health authority comes out with a comprehensive set of guidelines about something – people pay attention. And if they didn’t take it seriously before, the guidelines get them to re-examine that stance.

Countries with different healthcare system, because of the cost, have difficulties in implementing PrEP. What do you think of a global group to promote access to PrEP and make it more widely available in developing countries?

PrEP trials were conducted in communities in all parts of the world. And there are advocates in the Global North and South who are keen to have this new intervention at their disposal – because we can’t simply treat our way out of this epidemic, and we need choices for HIV prevention. The WHO guidelines are a step in the right direction, but this is going to take continued smart, strategic, sustained advocacy on the ground. People at risk for HIV should have access to PrEP, regardless of where they live. In much of the developing world, the cost is under $200 a year for Truvada – which is quite a good investment I’d say if you compare it with the cost of lifetime care and treatment.

What’s the next step for you?

I will continue to fight for PrEP access in Chicago, my country, and in solidarity with my friends and colleagues across the world. I will also continue to push for other new prevention technologies, such as rectal and vaginal microbicides, vaccines, and improved HIV diagnostics and viral load technologies.

As the chair of IRMA – International Rectal Microbicide Advocates – I am especially excited about a Phase II safety and acceptability trial in the field, testing a “booty friendly” version of Tenofovir gel, among gay men and transgender women in Thailand, South Africa, Peru, and the United States. I hope this trial goes well, and that we will have a Phase III efficacy trial underway in multiple countries in the next few years.

Thank you Jim.

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