Report calls for immediate action on AIDS among black Americans

Comprehensive strategies are needed to combat the epidemic.

Issue: September 2008

A conservative estimate of the HIV infection rate among black Americans is 2%. This alarming statistic is perhaps matched only by the apathetic response of government and public leaders to the situation, according to the authors of a recent report, “Left Behind: Black America: A neglected priority in the global AIDS epidemic.”

The report addresses the web of medical, social, cultural and economic issues involved in what many believe to be an emergency situation. Using the President’s Emergency Plan for AIDS Relief (PEPFAR) as a benchmark, contrasts between the response to the epidemic in black America and the response in PEPFAR focus countries have been drawn. If black America were a country on its own, it would elicit extensive resistance from the U.S. government, according to the authors.

Although PEPFAR countries are required to have a national strategy in place to receive assistance, there is no such strategy in America and certainly not for the specific needs of this population. However, there is no doubt that the degree of need in black America warrants swift and aggressive action, the authors state.

Statistically speaking

Although it is agreed that the epidemic is too complex for any one researcher or activist to completely understand, the authors nonetheless attempted to quantify the problem by compiling statistical information. Then they created a model in which the black population in America was considered an independent country. The report includes some sobering statistics based on this model:

There are more black Americans with HIV than in seven of the 15 PEPFAR focus countries.
Black America would rank 16th in the world in the number of people with HIV.
Black America would rank 105th in the world in life expectancy.
Black America would rank 88th in the world in infant mortality.
Only three countries in the world have more incarcerated people than black America.

According to the report, the HIV/AIDS-related disparities between black America and other populations within the United States are equally telling. Though there are six times as many whites as blacks living in America, the cumulative death toll from HIV between the two races is almost equal. Approximately 218,000 blacks have died of AIDS, compared with 239,529 whites. In 2006, the rate of HIV/AIDS infection per 100,000 adults was 85.6 in blacks, 33.7 in Latinos and 9.6 in whites.

The numbers become even more shocking when the country is broken down into states, counties and even ZIP codes.

Alabama is 26% black, but blacks represented 69% of all new HIV/AIDS cases in the state in 2006.
There is a 3.3% infection rate in blacks in New York City.
Nine ZIP codes in Detroit have experienced an infection rate of 5% or greater.
To compare national capitals, the prevalence of HIV in Washington, D.C. is greater than that of Port-au-Prince, Haiti. More than 80% of the cases of HIV in Washington, D.C. are among blacks.

Community action

There is little debate that the numbers accurately reflect the urgency of the situation and that the response of the government has not been satisfactory, according to the report. There is little debate, even, that community-based and unconventional strategies are needed to combat the infection. However, the form that those strategies may take has yet to be determined.

Victoria Cargill, MD, MSCE, director of Minority Research and Clinical Studies at the Office of AIDS Research at the NIH, addressed this issue: “First off, there needs to be a paradigm shift in the way we approach the epidemic,” she told Infectious Disease News. “The nature of black communities is such that top-down research does not work. The silo approach does not work. We should not be afraid to use behavioral strategies that might not have an extensive theoretical basis but are effective. This starts with the creation of private and public partnerships.”

Cargill said these partnerships should include people from all backgrounds, including religious and business leaders, media personalities and celebrities, as well as people within the affected communities. Mobilized communities need to focus on fighting the stigma of HIV infection, to overcome prejudices and to encourage solidarity across social and economic lines, according to the authors of the report.

Cargill cited programs such as Family Talk in a neighborhood in New York City. The agency involved employs facilitators who bring families together to engage in a conversation about all forms of social and sexual behavior, from first kisses to condom use.

Risks and difficulties

It is these nuances within both the epidemic and the black community that make research so difficult. One point that has been raised by many in the field is that of risk for HIV.

Paul Volberding, MD, professor and the vice chair of the University of California San Francisco Department of Medicine and an Infectious Disease News editorial board member, agreed that more needs to be done to address the HIV/AIDS epidemic among black Americans. “We are trying to move away from focusing on this notion of high-risk behavior,” he said in an interview.

Research has shown that the risk for HIV in the black community is high, even for people who do not engage in risky behavior. Also, focusing only on these behaviors is ineffective in preventing transmission. “This can lead to a false sense of security,” Volberding said. “People avoid risky behavior and think that they are safe when this is not the case at all.”

Cargill offered some possible explanations for this paradox. “Social and sexual networks in the black community are distinct in that people enter them and do not leave. We have asked people in black communities if they know people in their network who have HIV. They do. They know six, eight, 10 people who are infected, but yet they do not perceive themselves as being at risk,” she said.

Education is key in redefining these perceptions and in dispelling often shocking misinformation about HIV. For example, almost one-third of individuals surveyed in a housing project in Harlem, New York,d thought that the infection could be transmitted by mosquitoes. Education also can be helpful in reducing the problem of stigma.

Starting points

Combating attitudes and misinformation are just two small parts of this epidemic. The authors wrote that “it is a human rights issue. It is an urban renewal issue. The fight against HIV and AIDS is actually a broader fight against an environment in which poverty, homelessness, unemployment, incarceration, marginalization, homophobia and violence exacerbate the risk black people face daily.”

Further complicating matters is the issue of government involvement, which brings the discussion back to the disparities between the PEPFAR program and the program in the United States. But many feel that these disparities should not necessarily lead to conflict.

“I think it is a good idea for us to avoid getting into an either/or dialogue,” Volberding said. “You can be interested in AIDS in Africa and be interested in AIDS in Oakland, Calif. There does not have to be a choice. The fact that there seems to be a choice reflects the unfortunate priorities of our health care system. I am convinced that there are resources to pay more attention to the epidemic here without cutting into the leadership role this country has taken internationally.”

Despite the perceived economic constraints and perceived conflicts between PEPFAR and the domestic epidemic, there is hope that the tide can turn.

“I think we can learn a great deal from our colleagues who work internationally,” Cargill said. “We can also learn by not looking at AIDS as the only disease that has come along to impact our community. It is certainly challenging and fractious largely because of the mode of transmission. But we have survived challenges and epidemics before and we no doubt will survive this one.” – by Rob Volansky

For more information:

Additional information is available online at www.blackaids.org. The report, “Left behind: Black America: a neglected priority in the global AIDS epidemic” can be accessed on this website.