What Really Fuels the HIV/AIDS Epidemic in Black America?

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We've been bombarded with images and media attention that have blamed the "down-low brotha" -- the closeted gay man who sleeps with both men and women -- for the HIV epidemic in black America. Meanwhile, numerous studies have debunked those claims. Yes, there are closeted gay black men, but the reality is that so much more is at play when it comes to why African Americans account for only 14 percent of the U.S. population but make up almost half of all newly diagnosed HIV cases each year.

Take a look at what HIV advocates from across the country say is really worsening the epidemic in the African-American community.


Poverty

Ingrid Floyd, Executive Director, Iris House, New York

Poverty fuels the HIV epidemic due to its impact on all aspects of life, including income, housing, education, nutrition, access to health care -- and the list goes on. In the African-American communities where poverty rates are even higher, there exists a greater gap in all of these areas that fuels the inability to negotiate, feel empowered, get educated on HIV and get tested.

Let's be real: If I can't afford my next meal or next month's rent, do you think I'm going to make a big deal about using condoms? Because the man that's taking care of me is taking care of her too. No, I have too much else to deal with.

But there is hope. Many community organizations are now targeting these communities to conduct HIV testing and connect those who test positive, or are lost to care, to medical treatment. Even though we cannot always directly impact the poverty levels in these communities, we can impact the availability of testing and education resources.


Injection Drug Use

Allen Kwabena Frimpong, Movement Resource Bridger and Mobilizer, Harm Reduction Coalition, New York

According to the CDC, the number of new HIV infections among the sub-populations most affected are lowest among black males and females who inject drugs. Two factors that contribute to these relatively low numbers are: One, our white counterparts use drugs more than we do -- despite the fact that we disproportionately carry the health, social and economic costs associated with the harms from drug use and punitive drug policies.

Two, the advent of syringe exchange programs has also driven down the number of new infections among African Americans -- though we know anecdotally, and through research, that there are barriers to African Americans accessing syringe exchange programs given law enforcement practices that racially profile and target them.

We know incarceration is a driver of HIV. We know lack of employment and education drives people to participate in "street economies," and we know that participation in these economies has harmful consequences in our communities and continues a cycle that does not encourage people to be empowered enough to protect themselves and their loved ones against HIV. It's for these reasons that a harm reduction approach, and a drug policy agenda that ends the criminalization of people who use drugs, will be vital in ensuring that African-American communities don't bear the brunt of the health, social and economic costs associated with harms like HIV infection.


Stigma

Rae Lewis-Thornton, Activist, Blogger at Diva Living With AIDS, Chicago

The stigma around HIV created an enormous amount of shame for people living with HIV and their family. This stigma is embedded in American culture. In the 21st century it's become politically incorrect to talk negatively about HIV and people living with HIV openly, but the whispers float in our society just like the air we breathe. I can understand at one level the black community saying, "Not Me!" I mean who wants to admit that HIV is rampant in their community. Shoot, I kept my infection a secret for seven years because I was afraid that people would judge me. Still today, I get nasty tweets about my dating and sex life, but I tackle it head on.

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Stigma for the most part drives this disease in many ways. Let me explain. People are afraid of going to get tested for fear that they will be judged. Many private doctors will ask their patient, "Why do you think you need an HIV test?" And by doing so, their behavior has been called into question. While other doctors have gone as far as to say, "You don't need a test, you're in a monogamous relationship" or "you're married." When in fact, everyone -- including the doctor -- needs an HIV test. Other options for testing are in a HIV clinic or at a Department of Public Health and many people are afraid of being "spotted" in one of these places.

Now let's take that as our baseline: Fear of getting tested for HIV because of being judged. Now, the CDC says that 38 percent of newly infected people are infected by people who didn't know they were infected. And contrary to belief, statistics show that most people with HIV don't want to deliberately infect someone. So, it stands to reason if more people knew their HIV status, less people would be infected.


Gender Inequality

Deon Haywood, Executive Director, Women With a Vision, New Orleans

As long as we have economically repressive policies in this country, we're going to have women at risk for HIV. As we often say, HIV can affect anybody, but it's particularly hard on women who are poor.

Policies that target African-American women on welfare -- like Temporary Assistance for Needy Families, which in some states requires a negative drug test to qualify for assistance -- put women at an economic disadvantage that can leave them vulnerable to violence, and to HIV, through possibly unprotected "survival sex" and whatever other activities they need to engage in so that they and their families can survive.

In today's economy, where so many people are struggling, to target and penalize people who may have smoked marijuana, rather than providing job training, education, or even recovery services, seems a misplacing of priorities.

And when it comes to access to reproductive health care: Budget cuts routinely shut down state-run family-planning clinics, leaving women with no place to go for regular checkups, to learn about their bodies and what to do with them, how to keep themselves healthy. Furthermore, national reproductive-justice struggles often do not take into account the issues of greatest concern to poor women.


Low Health Literacy

Bethsheba Johnson, G.N.P.-B.C., A.A.H.I.V.S., Associate Medical Director, St. Hope Foundation, Houston

Health literacy is the ability to use written materials to function in health care settings and to maintain one's health and the skills needed to advocate for and request needed clarification. However, a shocking number of Americans, especially those of color, are lacking these skills. Previous research suggests that a low level of health literacy is an underlying factor that explains racial disparities in the prevalence and incidence of HIV/AIDS.

For HIV-positive individuals, it can be extremely difficult to navigate the health care system. For example, there can be difficulty in taking and refilling prescriptions, scheduling a referral, understanding test results and lifestyle modification messages, completion of forms for care, and adherence to medications. Meanwhile, I have had many patients that couldn't read at a level necessary to function. How can you refill a prescription if you can't read it? Or those persons who don't understand how to complete their ADAP or Medicaid Part D forms?

In terms of prevention, the messages we're sending to educate the community on the importance of HIV prevention must be culturally sensitive AND tailored to the health literacy level of the masses. Evidence-based messages on multimedia (Internet, social media groups, written materials, provider-patient interaction) need to be designed to reach those at highest risk for infection.


Homophobia

Kenyon Farrow, U.S. and Global Health Policy Director, Treatment Action Group, Washington, D.C.

Homophobia is a major factor that's driving HIV rates in black communities. We're told we're worthless by the churches we attend. Black LGBT youth are not getting a comprehensive sex education in schools that includes sexuality across the spectrum, so it's irrelevant to them. Twenty-five to 40 percent of homeless youth are LGBT, and a disproportionate number are black. Is it any wonder that new infections among men who have sex with men (MSM) are highest among black MSM ages 13 to 29?

But homophobia also makes straight black people vulnerable to HIV infection. As long as black women are only worried about if their boyfriends and husbands aren't bisexual, then they're less likely to consider practicing safer sex with heterosexual men, which is the overwhelming reason why black women are contracting HIV -- from heterosexual men -- but we don't hear that on black radio or in Tyler Perry movies.


Untreated and Undiagnosed STDs

Claire Simon, Communications Manager, Co-Founder/Co-Director, Young Women of Color HIV/AIDS Coalition, New York

Undiagnosed and untreated sexually transmitted diseases (STDs) are known to increase the chances of one being infected with HIV because they suppress your immune system, making you more vulnerable to seroconverting. The CDC estimates that there are approximately 19 million new STD infections each year -- almost half of them among young people 15 to 24 years of age. In a 2008 report, the CDC found that one in two African-American girls has had at least one STD.

It's also important to note that many STDs have no signs or symptoms, especially among men, and with symptoms or not, the disease can be passed on to a sex partner.

Practicing safer sex (using condoms during every sexual encounter/act each and every time), getting screened every three to six months for undiagnosed and untreated cases of HIV/STDs, and engaging in partner notification services if you are diagnosed with an STD may contribute to decreased transmission or burden of disease in the community.


Mass Incarceration

Tracie Gardner, Founder and Director, Women's Initiative to Stop HIV NY, New York

When looking at the incidence of many STDs, particularly HIV, they are concentrated in poor, segregated neighborhoods that are characterized by high rates of incarceration. Inner-city populations of African Americans and Latinos account for almost two-thirds of the 2.2 million Americans in prison nationwide, and two disturbing trends are increasingly present in these communities.

When talking about incarceration and HIV, the main myth to explain this relationship is that when men go to prison they contract HIV there and then bring it back into the community. And this is not really the case. Mass incarceration removes men from a community and the person left behind chooses another partner, who also may be sleeping with other people in the community (aka multiple concurrent sexual partnerships). When widespread, this behavior creates an efficient, effective pattern for introducing and maintaining an STD through a network of sexual relationships.

And so as we find ourselves with poverty and joblessness leading to crime, we will continue to see HIV flourish, especially with a broken health care system. HIV is a disease of LOCATION. Behavior is not enough to explain the disproportionate effect on black and Latino communities.


Lack of Comprehensive Sex Education

Kellee Terrell, News Editor, TheBody.com, New York

Thanks to former Presidents George Bush and Bill Clinton, since 1997, our federal government has invested almost 1.5 billion in abstinence-only education, while numerous studies have shown that these programs are completely ineffective in delaying sex. And in the end, what this means is that our youths have not received the crucial information that they need to protect them and ward off unwanted pregnancies and STDs, including HIV.

And despite President Obama channeling more federal funds to comprehensive sex education, this does not mean that most schools across the country are incorporating these lessons into their curriculum or that these lessons are LGBT friendly.

That's sad, because knowledge is power. You cannot protect yourself if you don't know how or understand why you need to. And while there are many factors that contribute to why HIV diagnoses are on the rise among black youth, it's clear that a lack of information is part of that complex problem. When it comes to this disease and other reproductive health issues, our young people just don't know what they need to.

We need to shift our mentality from looking at sex education as something that encourages our youths to have sex -- which it doesn't, because they are having sex anyway -- to understanding it as arming our children with what they need to fight for their health. Without it, our children pay the price with their lives.


Late Testing

David Malebranche, M.D., Associate Professor, Emory University School of Medicine, Atlanta

Late HIV testing among black Americans is a contributor to the current HIV racial disparity in America. Many believe that a lack of testing is the cause, but in fact, black Americans have the highest HIV testing rates among any racial/ethnic group in the country. The issue is not "if" we get HIV testing or not, but rather "when" this testing takes place.

Similar to other chronic disease issues such as high blood pressure, cancer screening, diabetes and heart disease, HIV testing is a byproduct of poor overall health care access. In many situations, we are much more likely to use an emergency room as our primary care provider. And this is mostly a reflection of larger societal issues such as poverty, lack of health insurance, transportation, institutional stigma, work schedules, and racism and cultural incompetency among providers.

These factors may influence our behaviors and how we choose to prioritize our health, receive medical or public health messages, and follow recommendations by medical providers.

Yes, "to test or not to test" for HIV is subject to a number of different, very specific factors such as fear of disease, discrimination and community stigma, not to mention the individual-level impact a positive HIV test may have on personal decisions of disclosure and sexual behavior with partners. But if the foundation of health care that is available to us is shaky, talking about HIV testing will be a moot point if we can't even access and have positive experiences in the settings that often provide these testing services.


Lack of Access to Quality Health Care

Hilary Beard, Author of Health First! The Black Woman's Wellness Guide, Philadelphia

Black people are disproportionately uninsured, and when you don't have insurance, it means there is no co-pay; you have to pay for that appointment out of your own pocket. And if you cannot afford insurance or don't have a job that offers any, it's a serious financial strain. You might be inclined to skip appointments, put them off and not get the necessary tests that you need, not take your meds because you cannot afford them, or split your pills in half or take them every other day. This can set into motion a whole chain of events.

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In terms of HIV, not having access to health care can mean that people are not getting tested with the frequency that they should, and if they are suffering from other chronic diseases that lower their immune system, they can even become more susceptible to becoming infected with and passing on HIV to someone else. All of which happens with people being completely unaware that they are even positive. So it's nothing malicious, or intentional or promiscuous, because HIV can happen between loving monogamous partners where someone is completely unaware that they are infected with HIV, because they haven't gotten tested.