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Hope overshadowed – the US PrEP Summit
Gus Cairns, 2017-01-31 12:30:00

The US National HIV PrEP Summit, which took place in early December in San Francisco, was one of the most extraordinary HIV meetings I have ever been to.

This first-ever gathering of 600 people involved in PrEP (pre-exposure prophylaxis) provision in the USA (plus 25 non-US scholarship recipients, mainly from Europe) was already designed to be something different from the standard HIV ‘discover-test-treat’ conference. But fate then intervened to make it happen at an extraordinary time – in between the US election and Donald Trump’s inauguration. The election result totally changed the conference’s atmosphere and meaning.

The PrEP summit was designed as an event of celebration and hope. Its structure, its speakers, even the way the plenary room was designed and the way the speakers dressed, all conveyed one message: we are all in this together, and PrEP really is the game-changer we have been looking for.

Plenary talks were given in the round, from a low stage in the centre of the room. So were panels, with discussants sitting in white designer chairs. Slides were shown, but in the corners of the room behind our heads, so people looked at the speaker instead.

The atmosphere was more akin to gay men’s prevention conferences in the 1990s than treatment conferences. There was little sense of hierarchy or experts-versus-learners. One prominent presenter came out as having just started PrEP, to warm applause. Workers for stern-sounding federal bureaus were hard to tell from community spokespeople. Discussions were facilitated by an ‘MC’, the activist Ken Williams, better known as the blogger ‘Ken Like Barbie’, who has no federal job to lose.

The conference audience was also notably different. A majority of attendees were women, about 50% were black, and flamboyant rather than conservative gayness was much on show. There was also a large, conspicuous and involved trans* contingent, mainly women but some men.

So, had Hillary Clinton won, this meeting would have been a celebration of the success of a new HIV prevention paradigm and a showcase of projects to make PrEP work better and extend it to more people.

Instead, the predominant feeling was one of trepidation. The most obvious sign of this was that media were not allowed entry. I got in as a PrEP advocate but colleagues from the community press were told there would be no media presence. Although tweeting from the meeting was allowed, it was requested that no presenter working for any federal agency should be quoted directly. Originally, presentations were to be published online and some were. Now all have been taken down, leaving only the programme.

The result in my case is that this can’t be written as the usual Aidsmap-style summary. I can only rely on the presentations I did manage to salvage and fragmentary notes and tweets taken at the time.

The summit’s convenor, Paul Kawata of the National Minority AIDS Council (NMAC), gave a long, impassioned and off-the-cuff opening speech where he described the anxiety of the current moment and the big unknowns of the Trump administration.

“The HIV sector has been good at working with Democratic administrations,” he said. “But we’re not so good at making friends with Republican ones.”

It is clear they can be related to and influenced; otherwise, one of the most important initiatives in the whole history of HIV, PEPFAR (The President's Emergency Plan for AIDS Relief), would never have been started by George W Bush. But whether Donald Trump will be as persuadable or well-disposed to an intervention with as much built-in controversy as PrEP remains to be seen. One possible chink of light is that Vice-President Mike Pence, as Indiana State Governor, was the person forced to permit needle and syringe exchange when confronted by an HIV outbreak among white, rural heroin users. But the signs are few that he or his president will be as well disposed to urban blacks, and Trump has already drastically cut federal agency jobs.

The difference that the Obama administration and the Affordable Care Act (‘Obamacare’) brought to the HIV sector in the USA was underlined dramatically by the head of an HIV/STI programme for one of the Southern states. The ACA had led to the proportion of people in the state who had no health insurance falling from 18 to 12%, but there was a much more dramatic difference for people with HIV: the proportion of people in the state’s AIDS Drugs Assistance Programme (ADAP) who had no health insurance had shrunk from 70% in 2012 to 27% in 2016. As a result, the percentage of HIV-positive people who were virally suppressed on antiretroviral therapy had risen from 70% to 82%. How much of this gain could be lost under the new administration?