Leading Black AIDS Activist Says Knowledge and Testing Are Key to Beating HIV

Q+A with Gary Bell, Executive Director of BEBASHI

What do you focus on in your HIV/AIDS advocacy work?

BEBASHI [Blacked Educating Blacks About Sexual Health]'s focus has always been more on low-income African Americans because they're disproportionately impacted. It's just harder for them. There are more barriers to reaching them with education and prevention because many are transient. There are more barriers to getting them tested and treated because many are un- or underinsured.

And speaking of barriers, the greatest one agencies like BEBASHI face is not having enough money. Part of it is that African Americans don't want to think about AIDS, talk about AIDS, have anything to do with AIDS -- and consequently avoid anything having anything to do with AIDS, including giving support of all kinds to African-American AIDS agencies.

BEBASHI mainly gets its money through different government entities. There's federal funding to prevent the spread of HIV and to provide services and treatment to those with HIV, for instance. If we had to depend on donations, we wouldn't be around very long.

What is the most critical issue facing the African-American community with HIV/AIDS?

Early detection -- we continue to see many African Americans who find out they're HIV positive only when they get sick. There needs to be an increased emphasis on testing, on people knowing their status, on understanding that you can have HIV -- and transmit it -- for years and years before you experience symptoms. Now many people wait -- they think if they're relatively healthy, they're okay. But that's not true.

Why do you think many African Americans tend to wait until they have symptoms of the disease to get tested?

The African-American community is so homophobic that heterosexuals still don't believe they are at risk. And many of us haven't been very consistent about our health care, especially preventative medical care. Part of it is because we are disproportionately underserved in terms of medical insurance. So it's a hassle because you have to go to the clinic all day.

Our relationship with modern medicine isn't a very strong one. Ongoing screening of a lot of serious illnesses isn't done -- cholesterol levels, diabetes, prostate cancer. So it doesn't surprise me that, with the stigma associated with HIV, we avoid getting tested.

How would you best address that?

Information, information, information. Someone once said to me, "We can convince someone to spend $70,000 on a Toyota by calling it a Lexus," so if we can do that, we have a vast, powerful, influential social marketing entity in this country. We can be in people's faces when we want to be. We need to bring some of those resources to bear on HIV, not making it something that we hear about only on World AIDS Day. Not everyone is Internet savvy or even has access to a computer. But people do listen to the radio and watch television.

Where do you think the most progress is being made in combating the epidemic in the black community?

In general, it's in the treatment. We do have access, in this country at least, to very good treatment. Unfortunately, since African Americans tend to get tested later, many don't always get the same high level of care as whites. So we die faster.

What are the top myths about HIV that you encounter?

That it's a gay disease. In this country, HIV seems to have started in the gay community. But as it has grown, and particularly as it has spread around the world, it's apparent that the vast majority of people who have HIV are heterosexual. But because African Americans tend not to be involved in our own health care very much, we don't pay attention to that information. The media has also let us down by doing a poor job of focusing on HIV -- you can go months without seeing any new coverage. It's just not on our radar screens. So we don't choose to dispel that myth because we're not actively looking for the information and it's not staring us in the face.

How can homophobia be addressed to reduce HIV risk?

One of the key forces is the church. Homophobia is unfortunately what we hear when we go to church. Even African Americans who don't frequent the church but think of themselves as believing in God also believe that homosexuality is an abomination. Since the church plays a major role in keeping homophobia going, it could also be part of the solution, by expounding a more inclusive message: that Jesus loves all of us, that we're all equal in his eyes, or her eyes, whatever you believe in.

What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?

I expect the numbers of younger people becoming infected to go up because we are seeing record numbers being infected with other sexually transmitted diseases like chlamydia and gonorrhea. People are apparently having unprotected sex; and there are still so many stubborn myths about HIV.

Another concern is the time that was wasted over the last eight years. Time is very valuable when fighting a pandemic. We have lost valuable ground that we can never recover. As a result, we are seeing HIV in the African-American community escalate to an incidence level rivaling some African countries. A case in point is our nation's capital, Washington D.C., where 4 percent of African Americans are HIV infected.

At the same time I am optimistic that, with a renewed commitment to increasing access to health care for most people, we may begin to make progress in slowing down the rising incidence. I just don't know if we will have the resources anytime soon to do it.

Can you recommend one action that we all should take to end the epidemic?

To get tested. Everyone -- all adults. With getting tested and getting to know your status, you're also getting counseling and an opportunity to learn about HIV. You hear what the statistics are, what treatment is about, what the risk factors are. So you know your status but you are also getting that information in such a way that you wouldn't normally get it. Information is power.

Updated May 2009

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Gary Bell

About Gary Bell

This year marks Bell's 14th as the executive director of the Philadelphia-based BEBASHI (Blacks Educating Blacks About Sexual Health), founded in 1985 as the nation's first AIDS organization serving African Americans with HIV. Bell has been widely praised, not only for increasing funding and accountability at a time when HIV donations have plummeted, but also for launching such innovative programs as a women's initiative, prison-discharge planning, and, most recently, a diabetes intervention.

Read Gary Bell's Blog

Updated May 2009