Act V: A New AIDS Advocacy Group Focuses on Treatment as Prevention

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Courtesy Leigh Blake

Leigh Blake at a care home in Jalore, India, that was funded by Keep a Child Alive, an organization that she founded and led for ten years.

In her more than 20 years as an AIDS activist, British-born, Brooklyn-based Leigh Blake has revolutionized the concept of public advocacy many times over.

Long before the era of celebrity-filled charity benefits and fashionable red ribbon campaigns, Blake — an accomplished filmmaker — was calling on her friends in the music and movie industries to help end the suffering and stigma associated with AIDS. Back in 1990, she founded the Red Hot Organization, the global multimedia initiative best known for the Red Hot + Blue charity album — the first time major pop culture figures like Bono, Annie Lennox, Madonna and Sinead O’Connor got on board to help the AIDS cause.

Just over a decade later, Blake established the Keep a Child Alive Foundation to distribute HIV medication to children in Africa. The organization now counts among its prominent supporters folks like Alicia Keys, who says Blake gave her a “sense of honor and accomplishment, of being a part of something that’s more than my own life.”

Bono calls Blake the “first Punk President of charity.” Lennox says her “efforts have literally helped to save thousands of lives both in the United States and Africa.”

But while she may have pop stars and politicians on speed dial, Blake’s most meaningful activities have been behind the scenes — raising awareness and millions of dollars for HIV prevention, treatment and education. Now Blake has turned her attention to ending AIDS for good, with the establishment of a new advocacy group called Act V. Launching on World AIDS Day, Act V wants to focus on providing treatment as prevention — the idea that the powerful drugs that treat HIV infection can be used to help protect people from getting infected in the first place. Blake believes “treatment as prevention” is the key, if not to eradicating AIDS completely, then to ending the AIDS crisis and truly containing the epidemic.

On the eve of Act V’s debut, when she will head to Washington, D.C., for Pres. Obama’s speech at a World AIDS Day panel sponsored by ONE and (RED), Blake spoke with TIME about sex, stigma and rock and roll.

TIME: Your new organization Act V aims to bring about the end of AIDS. Can that actually be accomplished?

LEIGH BLAKE: Without a vaccine, AIDS will never truly be ended. But until then, we are advocating for an end to the ‘AIDS crisis’ — which means that the disease will finally be completely under control, much like diabetes and other illnesses that are now considered manageable. We find ourselves at a historic moment where the science and knowledge are finally in place to end this crisis and save millions of lives.

TIME: ACT V’s mission is anchored in the concept of ‘treatment as prevention’ — deploying powerful antiretroviral (ARV) medications not just to treat HIV-positive patients, but also to keep negative people negative. Does this work?

L.B.: Absolutely. The effectiveness of this approach has been known for a while, but was confirmed by National Institutes of Health (NIH) [research] released back in May. According to these clinical trials, using ARVs as directed resulted in a 96% reduction rate of HIV transmission between positive and negative people. This follows a 2008 Swiss study, which stated that HIV-positive people who followed ARV regimens, and had no additional STIs, were “sexually non-infectious.”

The release of the NIH report was like waking up a sleeping beast. We can now say unqualifyingly that getting infected patients on medication as early as possible works as a prevention method.

TIME: But aren’t condoms the best protection against HIV? Seems to me that’s been the main HIV-prevention message for decades now.

L.B.: Condoms do work, particularly in the West where they, of course, also prevent pregnancy. But even though people have the intelligence to protect themselves through condom usage, in [some] parts of the world that is not always possible.

People may not have access to condoms or be able to afford them. Women are often not empowered in sexual relationships. There can be cases of sexual abuse or exploitation. In all of these instances, condom use may not be an option. This is why it’s critical that the maximum number of people get on HIV medication as early as possible.

TIME: And what about a vaccine? After 30 years and millions — if not billions — of dollars worth of research, do we simply give up on finding a vaccine?

L.B.: Absolutely not. Treatment as prevention is not a cure — and until a cure for HIV is discovered we still need to find a vaccine. Ultimately a vaccine will be cheaper; it will be that proverbial ‘magic bullet.’ But the truth is that we don’t have a vaccine yet, but we do have the ability to keep children alive, to keep mothers alive, to keep families intact.

TIME: While the cost of annual ARV regimens has been reduced from thousands to hundreds of dollars, medication is still expensive. Especially compared to condoms. Does ‘treatment as prevention’ make economic sense?

L.B.: We could fund this entire effort with what the U.S. military spends in two or three days on its budget — or with the amount of money Americans spend annually on cupcakes. Treatment as prevention makes complete economic sense because it avoids the long-term costs associated with treating million of potential new infections, the costs of caring for AIDS orphans, and the cost of reduced growth in the developing world where AIDS is still hitting hardest. This process also works against the distrust and hatred people in the developing world often feel when the West fails to help.

TIME: A year of cupcakes does not seem like a lot, but with both the American and global economies ailing — not to mention the Global Fund running out of grant money until 2014 — finding new funds is tough right now. Where might this money come from?

L.B.: We are not asking for new money, but simply asking that funds already committed by the U.S. through the President’s Emergency Plan for AIDS Relief (PEPFAR) be reallocated for treatment-specific programs. Based on the science at hand, we’re asking Pres. Obama to focus specifically on treatment-as-prevention programs rather than the larger, more diverse ‘prevention’ arena. We think it’s far better to use taxpayer money not for wars to kill people — but to save people.

TIME: PEPFAR is a legacy of George W. Bush, whose global HIV programs were very progressive. How do you think Obama’s HIV policies compare?

L.B.: After 20 years of living in the United States, I became an American citizen specifically in order to vote for Obama. And it pains me greatly to say he has not lived up to his predecessor. Candidate Obama made AIDS and HIV a major component of his campaign, but his actions [on AIDS spending] so far have been disappointing. Obama admittedly came into office dealing with a hornet’s nest of AIDS-related challenges dating back to the Reagan era. Now, as we look for continued PEPFAR funding, Pres. Obama has a historic opportunity on World AIDS Day to completely redeem himself and we certainly hope that he will. The President can do something to truly be remembered for — saving millions from deaths that are totally unnecessary.

TIME: Back in the fall of 2009, just before that year’s World AIDS Day, out-lesbian Rep. Tammy Baldwin (D-Wis.) released a videotaped message imploring the LGBT community to support Pres. Obama’s then highly contested health care reform plan. Despite the persistently disproportionate number of HIV cases among gay men, Rep. Baldwin never once mentioned HIV or AIDS in her message. Do you think examples like this suggest that the gay community has forgotten about AIDS?

L.B.: Perhaps it is time for the gay community to retake a stronger sense of ownership around AIDS, but then again, this could apply to everyone. And yes, within the gay community, there has emerged a sense of laxness around preventing the spread of HIV in terms of sexual behavior. But every gay man I know — whether in the Western or developing worlds — remains deeply committed to the fight against HIV and we must always remember that the gay community can take the credit for teaching the world how to create a movement against injustice during those early days of this disease. Groups like ACT UP and its founder, Larry Kramer, are truly my heroes.

TIME: Part of Act V’s mandate is to reshape the conversation around AIDS/HIV — to ‘rebrand’ it in a sense. What does this mean exactly?

L.B.: From the beginning of the AIDS crisis, there has been a certain amount of morality surrounding this topic and we want to change that. By making AIDS-related information very clear, very simple, we want people to focus on HIV simply as a disease — just like any other disease — and remove the moral turpitude from this entire topic. AIDS is associated with sex, which becomes very disconcerting to people.

TIME: But AIDS has much to do with sex, no?

L.B.: Yes, and therein lies the contradiction and the irony, because we are living in perhaps the most sexualized culture on the planet. Sex is used for everything — on MTV, in hip-hop, to sell products to young girls. Yet when it comes to AIDS and sex, everyone seems to just go into the closet. We have to get people to see AIDS as just a virus — one that really has nothing to do with supposed immoral behavior. Science now allows us the ability to throw morality out the window and reinvent ourselves, rebrand AIDS, get people into treatment and bolster entire health systems in the process.

TIME: Much of the HIV prevention/treatment focus is on the developing world, but what about the situation right here in America — where 850,000 HIV-positive patients are on waiting lists for medication.

L.B.: That number is truly shocking and reflects the same kinds of social conditions that are currently causing a revolution on streets all over America. We have let insurance companies and bureaucrats decide what drugs we can and cannot have access to, and this simply comes down to money. If you have money in America, you can do whatever you want — even speak to the President at a fund-raiser. But if you do not have money, there is no social mattress to fall back upon. What you see with Occupy Wall Street is this desire to no longer live under a system so utterly inauthentic and so clearly controlled by corporations and those with money. Act V is a similar kind of ‘people’s’ movement.

TIME: You were an early recruiter of celebrities to give a public voice to the AIDS crisis. What was this process like two decades ago and how is it today?

L.B.: It has never been easy working with celebrities, but it was easier because I was dealing with the music industry. Even early on when there was such a stigma surrounding AIDS, I think musicians were better able to enter into this dialogue because music has always revolved around sex, drugs and rock and roll.

Celebrities today are necessary because movements must use every tool available to generate publicity and cultivate public engagement. It has become far harder to gain access to celebrities today, but I feel that the artists themselves — people who give their art to the world — are actually pretty funky people, especially in America.

TIME: After 30 years and 30 million worldwide deaths, what do you believe remains the biggest misconception around HIV/AIDS?

L.B.: There is this notion that there is nothing we can do to truly make a difference in the developing/impoverished world, that people are too poor or too desperate for actions to really matter. This is simply not true. People in the developing world are some of the most mobilized folks around, who’ve been able to maintain their humanity despite the incredibly difficult circumstances around them. This is why treatment matters, because treatment can change everything for these communities. ARVs provide them with the chance to return to work, to raise their children — they literally give sick patients their lives back.

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