Interview: Kellee Terrell on Aids

According to US statistics, gay/bisexual men account for over 50 per cent of those diagnosed with HIV [GALLO/GETTY]

Al Jazeera’s Azad Essa interviews Kellee Terrell, a HIV/Aids blogger with the Huffington Post and News editor for TheBody.com, one of the premier online sources of HIV/Aids information and support, about the changing perceptions of HIV/Aids in the United States.

Al Jazeera: HIV/Aids is no longer regarded as “the gay man’s disease”. Are we shedding the stereotypes?

I wouldn’t say that we are necessarily shedding stereotypes because the face of the pandemic has evolved from the days when HIV was called GRID. I think what has happened over the past 30 years, is that we have broadened the scope of who can contract HIV, which clearly was necessary once we saw that women, intravenous drug users, African-Americans, haemophiliacs, people living in poverty and other people of color were contracting this disease at alarming rates.

But that wasn’t until years later because unfortunately, so many doctors, researchers, prevention people and the media missed the boat on these populations because homophobia blinded them.

The true way to shed stereotypes is to convince people that HIV/Aids is not a moral issue; it is a public health crisis that affects everyone. And we have yet to truly accomplish that.

But I want to emphasize, that it is very dangerous to no longer regard HIV/Aids as a “gay men’s disease.” Look at the stats in the United States. The Centers for Disease Control and Prevention estimates that while gay and bisexual men account for only 2 per cent of the US population, they accounted for over 50 per cent of all people who are newly diagnosed with HIV. Clearly this is still a gay man’s issue.

What is sad is that the mainstream Lesbian Gay Bisexual and Transgender (LGBT) organizations here in the United States, the ones who that have the most money, influence and visibility, continue to play the game of respectability politics making marriage equality and Don’t Ask Don’t Tell their platform issues all the while mostly ignoring the HIV epidemic because it doesn’t play into their agenda or the image they want to put out about the LGBT community.

And while I understand that the stigma of the early days has helped shape people’s own homophobia and misconceptions about gay people, at some point, these LGBT groups need to re-own this epidemic as if it was 1985. Too many lives are at stake not to.

Is HIV/Aids receiving enough coverage in the media?

No, nowhere are we close to having enough stories about HIV present in our media – that ship sailed in the 90s, when protease inhibitors were created and HIV became a manageable disease. Aids went from being the disease du jour, to an afterthought. And not say that there has not been some amazing Aids coverage over the years, because there has been.

But those stories are few and far in-between and when Aids is tackled in the American media, it mostly focused on the developing world (which is important for a range of reasons), but that coverage lacks any real analysis or attention to what is going here in the States. By not talking about the domestic crisis, the media is pretending as if Aids is not really happening here. Hence it is falling off people’s radars.

On the other hand, when the media does tackle domestic issues, too many stories borrow from Fox News play book – riddled with sensationalism, mistruths and one-sided narratives.  It’s disheartening to see article after article that blame “the down-low” for the Aids epidemic in black America or portray people living with HIV as bitter and dangerous criminals who go around purposely infecting “innocent” people. These types of stories only fuel stigma and play into the lack of compassion that Americans have for people living with HIV.

What we need to be seeing are stories about people living with HIV telling their own stories. Show them raising their families; addressing stigma; dealing with the difficulties of treatment adherence, side effects and the reality of drug resistance; overcoming addiction; battling housing and economic stability issues; dealing with dating, sex and love; navigating homophobia, racism, and gender issues. We need more stories about safer sex practices, sexual health and STD and HIV prevention.

One step into getting people refocused on Aids, means that more newsrooms, magazines and journalists have to make a commitment to refocus their publications and programs back to the epidemic. And that isn’t going to be easy, because that would require a green light from the higher-ups like the Rupert Murdochs of the world. And these are men who are the least affected by this disease and most likely care the least.

So it’s going to be an uphill battle, but it isn’t impossible.

As a prominent writer and activist, what do you think is biggest obstacle to winning the battle against HIV/Aids?

Clearly, the lack of universal access to treatment and overall funding for Aids on a global and domestic level are huge obstacles. But I have to say this is a really tough question to answer because there are so many obstacles in place that make the battle against HIV/Aids seem like a losing one at times.

I could say well if we could just deal with homophobia, that could make a difference, but it wouldn’t. Because then what about gender oppression, racism, poverty and everything else that falls under that umbrella? With a single-dimension approach, what happens if someone is a transgender woman, poor and black? Too many times, she falls through the cracks.

I think if there is an issue that is halting real progress that doesn’t get talked about enough, it is the difficulty for some of the people who run the NGOs, the policy makers and the doctors/researchers to check their own privilege at the door and begin listening to the advocates who work in the field who are actually doing transformative work.

These are the people who been screaming for years that this epidemic is and always will be a symptom of what happens when systems fail.

Aids preys on the most vulnerable, the most marginalised, the most deeply impacted by oppression and those who have the least amount of power. And don’t get me wrong, there is this great work being done around the world that understands all of those caveats, but it needs more money, more attention and more support.

But to be open to this work, that would take a complete and utter paradigm shift, and that isn’t an easy task. Not to mention a lot of work to be able to better the lives of all people in order for them to have more power. Power means an education, better health care, the ability to have sexual autonomy, to not feel threatened that you are going to get killed or attacked for being gay and the cycle of poverty ending with your parents.

It means opportunity, safety and addressing and admitting the wrongs of the past. Just the thought of how it all relates to HIV/Aids, condom negotiation, testing, treatment and vulnerability can be utterly exhausting.

I think this is why so many people are just hoping and praying for a cure or a vaccine, or some other biomedical band-aid, because that’s a much easier fix.

Most exciting developments of the past year regarding the struggle?

This is another really hard question. Because there are so many things that people are getting excited about, such as the PeEP study that just came out last week, the CAPRISA study from the summer, and The Obama Administration announcing the first ever National HIV/Aids Strategy, not to mention a slew of amazing underreported studies that were released during the International AIDS Conference in Vienna.

But, there have been some serious concerns raised about some of these major developments as well.

Will PrEP make people resistant to Aids meds if taken for a long period of time? And if it does, what are the consequences of that?

Will there ever be enough funding for microbocides and how will we get women to adhere to using the gel every day?

Is the US government really going to increase the Aids funding they promised to give during the next few years? And is their plan to decrease new infections in the US by 25 per cent over the next five years too lofty of a goal given the resources and current approaches that we have?

I have always been a cautiously optimistic person, so very rarely do I allow myself to get too excited about new developments.

For me it is about falling back and seeing how all of this is going to play out in 2011. Only time will show us the successes and the failures, and, what is truly improving.

Kellee Terrell, is a HIV/Aids blogger with The Huffington Post and News Editor for TheBody.com, one of the premier online sources of HIV/Aids information and support.