‘Enough is enough’: the HIV/AIDS epidemic among black Americans

In the United States, blacks are disproportionately affected by the HIV/AIDS epidemic. What is being done to curb this crisis?

No one statistic best illustrates the devastating impact of HIV/AIDS on the black population in the United States.

Blacks represent 12% of the population but account for 46% of Americans with HIV/AIDS, according to data from the CDC. Forty-five percent of all new HIV infections in the United States are now among blacks.

The rate of new HIV infections among black men is six times higher than it is for white men and three times higher than it is for Hispanic men. While there are fewer new infections among black women than black men, black women are far more affected by HIV than women of other races. They are 15 times more likely to contract HIV than white women and four times more likely than Hispanic women.

For this article, Infectious Disease News contacted several experts working on this health issue who agree that immediate action is needed. What remains unclear is exactly where that action should be focused.

In the United States, the most dramatic increases in the HIV/AIDS epidemic have been among black men who have sex with men. This fall, the CDC reported that 63% of new HIV infections in black men now occur among MSM. Young black men are especially impacted.

In 2006, there was a higher number of infections among black MSM aged 13 to 29 years than in any other age or racial group of MSM. Most experts cite stigma and homophobia as driving factors behind the heavy burden of HIV in this population.

Lisa Bowleg, PhD, associate professor in the department of community health and prevention at the School of Public Health at Drexel University in Philadelphia, is conducting research on the experiences of ethnic and sexual minorities. “Young black MSM live at the intersection of racism, sexism and homophobia,” she told Infectious Disease News. “When we talk to young men about these three societal pressures, we get a clear picture of a life of unrelenting stress.”

Bowleg said that such stresses can lead to chronic health problems, including obesity and hypertension, and she contends that HIV should be added to that list. She said the lives of many young MSM place them in situations conducive to HIV transmission, often on a daily basis.

Julie Scofield, executive director of the National Alliance of State and Territorial AIDS Directors, echoed this point. “You have issues of being gay and what it means in this country and how to address the needs of gay people,” she said. “Then you are addressing all of those things about being black. When you put those two together it ends up being more than a double whammy. All of this is compounded by issues of stigma and homophobia that exist in black communities. High-risk behaviors often are a natural consequence of such conditions.”

A further complication is self-stigmatization — or internalized stigmatization — that experts like Scofield have observed among black MSM. “We have seen black gay men wonder whether their lives have value,” she said. “The messages they have been raised with in the black community about what it means to be a man often tell them otherwise.”

Victoria Cargill, MD, MSCE, director of Minority Research and Clinical Studies at the Office of AIDS Research at the NIH, discussed this phenomenon. “Young black MSM absorb what they perceive to be the values around them and then use those values to beat themselves,” she said in a recent interview. “Many feel as though they are not living up to the call of being a black male, whatever that might mean.”

Identity is an issue

According to Cargill, black MSM who identify themselves primarily as homosexual are more likely to get tested for HIV, to understand HIV/AIDS protection and to be aware of risk behaviors and how to modify those behaviors.

On the other hand, Cargill said black MSM who identify themselves primarily as being black are more likely to engage in more high-risk behavior. They are more likely to have other sexually transmitted diseases, further increasing their risk of contracting HIV. Men in this group frequently hide their identity as a MSM.

With this in mind, it would be easy to infer that being black is perhaps a greater risk factor for HIV than being homosexual or bisexual among the black MSM community. Black MSM who identify themselves primarily as being homosexual, however, are also more likely to have better economic circumstances, including better living conditions. Some researchers believe that poverty and the absence of stable housing have become the strongest predictors of HIV acquisition, Cargill said.

Social determinants

David Malebranche, MD, MPH, assistant professor at the Emory University Division of General Medicine in Atlanta, discussed the shifting priorities of the fight against HIV/AIDS among black Americans. “I think the biggest challenge is moving our approach away from one that is crisis-mode and disease-first,” he said in an interview. “We need to work backward to an approach that looks at the larger structural and social conditions disproportionately impacting black Americans.” Among those conditions are poverty and inadequate housing, he said.

Bowleg, who has also done research in this area, said that many theories about HIV prevention have come from psychology. “These theories focus almost exclusively on individual behaviors at the micro level,” she said. “I think we are starting to realize that structural factors such as housing and poverty that occur at the macro level may play a much larger role in the epidemic than was previously thought.”

Kevin Fenton, MD, PhD, director of the National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention at the CDC, refers to these structural factors as “social determinants of health and disease transmission.” Fenton said that understanding these factors is as critical to HIV prevention as distributing information on condom use and injection drugs. “If we are only focusing on individual-level risk, then we do a tremendous disservice, in part because so many individual risk behaviors are a function of the social contexts in which people find themselves,” Fenton, a member of the Infectious Disease News editorial board, said. “Race itself is not a risk factor for HIV, but the lives of many black Americans can really increase their vulnerability to infection.”

Homelessness also plays a role in the HIV/AIDS epidemic among black Americans, with blacks comprising nearly half of the homeless population. Recent research has shown that HIV/AIDS rates are significantly higher among homeless people compared with the general population.

These statistics hint at cycles that have begun to emerge among blacks, especially among women. Poor socioeconomic status forces many into trading sex for money, food or shelter. Women in this situation are often not in a position to negotiate condom use, even if they are aware of the risks involved in unprotected sex. If they become infected with HIV, a lack of health care access may prevent them from getting tested. If they are diagnosed with HIV, further access issues often prevent them from receiving quality health care, according to experts.

A similar cycle has been observed among black men who have been incarcerated.

Effect of incarceration

“We know now that there is no evidence of widespread HIV transmission in prisons, but because prisons bring together such a high-risk population, it certainly provides a unique opportunity for intervention,” Fenton said. “This incidental point can have an impact not only for the prison itself but outside the walls as well.”

Inmates may engage in high-risk behaviors including forced sex, consensual sex and injection drug use. Those behaviors, along with other socioeconomic circumstances, are far more damaging to the community after the inmate is released, Fenton said.

Incarceration may destabilize communities, particularly in terms of sexual and family relationships. Divorce rates among couples where one partner is incarcerated are higher than those in the general population. When men go to prison, their wives or girlfriends often find new partners, increasing the likelihood of HIV/AIDS transmission in the community. Even among couples that stay together during incarceration, the risk of transmission increases if one or both partners has been unfaithful, Fenton said.

Economic consequences of incarceration contribute to the epidemic. Ex-prisoners have reduced earning potential, which leads to economic insecurity and difficulty maintaining stable housing, Fenton said.

With non-medical concerns playing such a large role in the epidemic, it is clear that necessary interventions have moved beyond the reach of health care professionals.

Intervention by black churches

Cargill said many black churches have taken the issue head-on by providing HIV/AIDS ministries and links to care. Others have simply provided a place for pamphlets in the church vestibule. Others grapple with the realization that the behaviors the church condemns often lead to HIV transmission. The response can vary from neighborhood to neighborhood and from congregation to congregation.

Some churches have put together toolkits that allow them to address the HIV-related needs particular to their community. These toolkits are designed to teach ministers how to pass information along to their congregations and give sermons appropriate to the subject matter, all of which stimulates further conversation about HIV/AIDS.

Cargill said that the response within the religious community is cause for hope. “We have not yet seen a completely uniform response among ministers, and we likely will not,” Cargill said. “But as more churches move toward embracing and addressing the problem, others will follow suit. We need to keep a dialogue open in which we commend the churches for the work they have done, whatever that may be, and encourage ongoing conversations about other ways to become involved.”

National strategy

President Barack Obama has emphasized the need for a national strategy to tackle AIDS in the United States, particularly among black Americans. Scofield said that community organizations — both religious and secular — could provide the backbone of a coordinated national strategy.

“There are organizations at the national and community levels that have been doing nothing but writing recommendations for the new administration,” Scofield said. “Many believe that, in a matter of weeks or months, it would be entirely possible to gather all of this information, sit down in a room and hammer out a strategy. It could be a very quick process.”

Fenton agreed. “The CDC already has prevention plans in place for a number of these population subgroups,” he said. “Should the call for a national strategy arise, it would be very easy for us to fold these current approaches into a coherent plan.”

The strategy should be comprehensive and multi-faceted. “This is a dynamic epidemic. The challenge we have is ensuring that surveillance is fit for the purpose,” Fenton said. “The continuing evolution of this epidemic has highlighted the need for frequent updating of surveillance activities. It is a constant process of review. We need to ensure that the data we are collecting are really telling us the story.”

Education needed

Education is key to fighting the HIV epidemic, Cargill said. The economic benefits are clear: Education helps people find employment that leads to stable housing and health insurance. Education is also likely to lead to better health-related decisions.

“Children begin to learn about sex and drugs almost out of nowhere at around age 13,” she said. “This is problematic. There is no background, no context. By this point, hormones already have begun raging and behavior patterns have been set.”

Cargill added that the problem is compounded when the task of teaching sex education often falls to physical education teachers who may not be comfortable navigating such delicate territory. While teaching about condom use and other protection strategies at this age is not unhelpful, HIV prevention can start much earlier. “First and foremost, we need to reach young children and tell them that their bodies are important and worth taking care of,” Cargill said. “If we are able to convey that message, the HIV prevention battle is half won, because now they have a reason to avoid high-risk behaviors.”

Such lessons of self-worth should be coupled with ones about everything from good nutrition to basic lessons about body parts. “Those lessons can then progress into helping children understand the difference between a proper touch and an improper touch,” Cargill said. “If we can drive these messages home early on, by the time they get to sex education, they have a firm grasp of the fundamental principles of good health.”

Role of physicians

Malebranche said that physicians need to do a better job of educating patients. “We all need to be better clinicians and consider the whole patient, not just the patient as disease,” he said.

Clinicians are trained to view the social history of patients in terms of broad, incomplete categories like "smoker" or "drug user." “This puts us in a position where we are working from a deficit model,” Malebranche said. “It does not embrace who our patients are or what their motivations are. Medical schools and residency programs need to develop a much more biopsychosocial model of health care and train people accordingly.”

The physician needs to be aware that the patient is not simply a black man, an injection drug user or an MSM, according to Cargill.

Fenton said that the CDC is “constantly looking for opportunities for diagnosing infections in these subgroups. We have had some concerns with surveillance systems in the way we categorize acquisition among black women.” Physicians need to be aware that black women may have acquired the disease by one of a number of transmission modes and that they should be treated in a holistic way accordingly.

Public-private partnerships needed

Most researchers believe that the efforts by community-based organizations to raise awareness about the HIV/AIDS epidemic are vital. “The PhDs are not necessarily churning out the best interventions,” Bowleg said. “There are people on the ground level who are really making things happen.”

Public-private partnerships with such organizations are mobilizing and making positive progress. “Leaders within black communities are really beginning to embrace this issue, and we are seeing mainstream institutionalized black organizations focusing on HIV/AIDS as a legitimate crisis,” Scofield said.

Private foundations also are key to finding resources to meet short-term goals of getting people tested and linking them to care.

“Over the last few years, we have had great partnerships with faith, congressional and celebrity leaders who have said, ‘enough is enough.’ They have offered to add their platform to the voice of the CDC,” Fenton said. “It is gaining traction in the community, and I think it will not be long before the hearts and minds of Americans are focused on this epidemic. Once that occurs, I believe that real solutions will be possible.” – by Rob Volansky

What aspect of the HIV/AIDS epidemic among black Americans is of particular concern to you?

For more information:

• J Health Care Poor Underserved. 2005;16:140-156.
• JANAC. 2007;18:3-5.
• AIDS Behav. 2007;11:S172-S181.
• Southern Medical Journal. 2007;100:775-781.
• J Acquir Immune Defic Syndr. 2004;35:526-536.