Prep / IPERGAY AIDS Prevention Interview with participant, Tom Craig
A drug already approved for treatment of AIDS might one day be approved for prevention of the deadly disease in individuals at high risk. Pre-exposure prophylaxis, or PrEP, participant Tom Craig, gives his thoughts.
Preps / IPERGAY Interview Notes, Tom Craig 7/2012
Question: Why would you want to be part of the study?
TC - Because I'm angry. Angry at the fact of new infections of HIV in France, which are not only not diminished, but, they increase. And with in all the information on the problem-prevention advertisements, posters, brochures, etc.. that are always available in all gay bars, and elsewhere, and programs, (such as, the Sidaction, Solidays, 1st December ..). After thirty years, I think we are worse off in 2012.
The decision I took was not only for myself. I agree with the other participants that I know in the study, we do it for others as well, especially, all those in our own Gay community. We really need to do something. It is urgent. In France, there are 1/5 HIV Positive queers in Paris, and 1/5 of fags do not know that he is poz because they are not tested. There are 7,000 new infections each year. In the gay community it represents 3,500 cases, in 2011 (for example). It is almost ten fags a day. And, worse, it increases every year, so "business as usual" is not enough.
Question: How did you know about the Ipergay the study?
TC/ I'm an activist against AIDS during 24 years. And I followed all the news about the epidemic in the media. I found information about the study, on Facebook, on the YAGG. page (a FrenchLGBT Community media website) When I saw it, I told myself, that this is really made for me. I was among the first to sign the protocol. But it was not an easy decision to make. I was very partial about joining. The study is not without controversy. And I wanted to explore more about it. So, after I already left the association, Act Up Paris for about 5-6 years, I recently joined.
Part of the controversy is concerned about the existence of the Placebo arm, where some participants take the true anti-viral, and some do not take them. We do not know who does what. But after talking to Professor Molina about it, (on the chat dicussion on www.yagg.com) I feel comfortable with the fact that it was decided in advance that if too many new infections occur during testing, it will be analyzed by a committee of independent experts and, if necessary, can be stopped. As individuals in the study, we have absolutely no constraints. We can leave the study for any reason, without giving any explanation;
Another point very disturbing, is the cost of the study, and the cost of the drug being in the study. Some activists wonder, would it not be better to invest money for prevention programs to benefit, which encourages the use of condoms ? Then there is the question of what will happen after the study? How can it be presented to the public? How will it be paid for? Will similar intense monitoring of participants, as is the case today in the study be installed? Today, for example, when I go to the hospital for my monthly visits, I have five health professionals and two NGOs assistants to help me. The visit takes about 2 hours, mostly spent talking. This cannot be spent with our general practitioners, where we spend like five minutes with him, the time to make a prescription and send us awayr, in the spirit, "bear it!" There is no monitoring care now. So, is there going to be the financing of health clinics, intended for testing and supervision of participants, especially for LGBT, and sex workers, where there will be access to non-judgmental health care, as the 190 Center, or the Info Kiosk AIDS, or to the premises of the Association of AIDS? We absolutely need a good framework for this treatment. This is not just drugs to swallow. It was in the study, for example, the "Focus Group" where participants share their experienced, experiences, etc.. It is also a place to talk about prevention in a non-judgmental space (it's just us).
What do you test for yourself, your partners, the gay community?
I hope we can find another tool for the prevention of AIDS. Because today prevention does not work as well. I know what I do, and I know that is done by others. I spoke with many people (my partners, friends, other activists ...) The problem of Condom use is always mentioned. This is not because we do not know, or are not using them. However, for various reasons, this is a problem. And we should discuss all of this to find a solution. Antivirals are not a panacea to the problem of prevention of AIDS. But, with this study, may be that we don't know where we're going, but at least one thing is sure, we're on the right path, or I hope!