Filmmaker Nicholas Feustel has launched a unique documentary about the PROUD HIV prevention study, in a two-part feature series, KaleidoScot discusses the film, its importance and interviews participants and experts.
In the first part of the interview we speak with Feustel, and documentary participants, Gus Cairns and Greg Mitchell.
The PROUD study showed that Pre-exposure Prophylaxis (PrEP) – taking a pill daily that is usually used to treat HIV – is highly effective at protecting people from being infected with HIV.
The documentary explores why new HIV prevention approaches are needed in the UK, and how the PROUD study was able to answer the question.
It features interviews with people who took part in the trial, doctors, scientists, public health experts and community advocates.
The film explores what the study found, both on HIV prevention, and what effect it had on other sexually transmitted infections.
The documentary also interviewed some of the participants in the study and asked what being on PrEP meant for them. It also discussed the future of PrEP in the UK as part of prevention.
KaleidoScot first spoke with Feustel, asking him about the documentary and why he decided to make it.
KaleidoScot: What motivated you to make this documentary? Is there a personal story as well?
“I have been following PrEP research since 2010, and – as a gay man – was very excited about the early results, showing that PrEP works if you take it. So I was even more excited when I got the opportunity to do the video documentary on the PROUD Study, which showed that PrEP also works as a public health intervention for gay men.
“I see a lot of opportunities in implementing PrEP. Finally, after years and years of the rate of new HIV infections not going down, we now have a tool that could make this happen. That’s why I’m advocating for getting access to PrEP. I’m not even sure that I would take it, but I know a lot of my friends could benefit from PrEP.”
KaleidoScot: Do you see yourself as an activist and filmmaker?
Yes, both. Nearly all of my films are around HIV. And so, I guess my work is always a combination of the two.
KaleidoScot: How did that influence the documentary?
I was really glad that the MRC Clinical Trials Unit at UCL, who commissioned me to do the documentary, didn’t want it to be only about the study data. They also wanted to highlight the social science findings and the implications of the results. So I could include all that in the documentary.
KaleidoScot: What do you hope this documentary will achieve?
I think this film will be very useful to disseminate knowledge around PrEP to a wider audience, including the gay communities and public health experts across Europe. Access to PrEP will be an issue for many European countries in the coming years. This film will help people understand that PrEP is not just about taking pills. If implemented properly, PrEP will be part of a comprehensive health package that can positively impact HIV-negative gay men’s sexual and mental health, as well as HIV stigma, in a way we haven’t seen before in the past three decades of our response to HIV.
KaleidoScot also interviewed Gus Cairns, an openly HIV positive gay man, who was expert an participant in the documentary as wel as AIDSmap Editor.
KaleidoScot: What was important to you about the documentary?
“Getting PrEP widely available will involve many small, incremental steps and many small changes of mind in people resistant to the idea. Nicholas’s docuentary is a good start in terms of presenting the facts about PrEP, and the experience of users, in a more media-friendly way and one that may attract a wider audience.
“I liked the fact that its style is quite minimal and simple: it lets the facts, and the participants, speak for themselves. I think that here in England, at least, the important people in the government agencies are now convinced of the potential usefulness of PrEP: the arguing now is all about money, responsibility and process: who it should be (initially) offered to, who should pay for it, and which agencies should be doing what to roll it out as a part of standard practice in STI medicine.”
“There is still concern about the effects on behaviour change, STIs and gay men’s sexual health, but I think we’ve reached the limits of what computer models can tell us and can only find out by doing implementation research as we provide PrEP.”
KaleidoScot: What is so important about PrEP to you and the general public?
“My commitment to PrEP, as I have expressed to audience before, comes both from an understanding of the science but also from the fact that I was very much a young high-risk gay man too, and someone who might have stayed HIV-negative had PrEP been around, specifically in my case, between about 1977 (when I hit the London gay scene) and 1985 (when I entered a monogamous relationship with someone who himself died of AIDS in 1990). He could have been protected too had PrEP been around from about 1976 in San Francisco.
“HIV in gay men cannot right now be managed by treatment alone and its lingering negative effects – stigma, anxiety, the knowledge that you have a choice between lifetime treatment and lingering decline and death – in my opinion make it imperative that we develop prevention methods that centre on stopping people getting HIV rather than just treating them once they have it – though that is important too.”
Activist, writer and study participant, Greg Mitchell, also spoke with KaleidoScot about the film.
KaleidoScot: What do you think is the most important message of the study and this film?
“The good news we need to get out there is that PrEP allows us to take control of our own sexual health. PrEP can eliminate the difference between positive and negative and we can become a community that is no longer split by our HIV status.
KaleidoScot: What impact did PrEP have on you?
“The point about PrEP. It puts me in control. I don’t have to worry about whether a partner is telling me the truth about their status. I take my pill every day and I know I’m protected. Just as women know when they take their contraceptive pill that they won’t become pregnant. It puts them in control.”
In the next article, KaleidoScot will examine the importance of the film to Scotland, meanwhile please watch the documentary here: