Executive Summary: Black America and HIV Testing

One of the most effective public health tools against AIDS is also one of the simplest: the HIV test. Yet our collective performance on HIV is disappointing, enabling the rapid spread of infection and resulting in unnecessary AIDS deaths. Our HIV testing failures have particularly dire consequences in Black America, where the country's most serious levels of HIV infection demand much higher rates of testing than have been achieved.

However, there are important signs of hope. At both the governmental and community level, a renewed push is underway to universalize HIV testing. With the aim of ensuring that this momentum is followed through, this report focuses on the challenge of making knowledge of one's HIV status a social norm in Black America.

AIDS in America: A Black Disease

Over the course of a lifetime, Black men are 6.5 times more likely to become infected than white men. These disparities are even more pronounced for Black women, who are 19 times more likely than white women to contract HIV. Outside of sub-Saharan Africa, only four countries have HIV prevalence as high as the most conservative estimate for Black America.

Although combination HIV therapy has helped drive down AIDS deaths for the United States as a whole over the last decade, much of Black America is not benefiting from the treatment revolution. AIDS remains one of the leading causes of death for Black men and women. In New York City, Black people living with HIV have an age-adjusted death rate that is twice as high as their white peers.

Black America and HIV Testing

Blacks are more likely than other racial/ethnic groups to have reported having been tested for HIV. In 2009, 52 percent of Black people surveyed reported having taken an HIV test, compared to 38 percent of Hispanics and 34 percent of whites.

But with HIV infection levels many times higher than for the country as a whole, Blacks actually need to be tested at much higher rates to ensure prompt diagnosis. Nationwide, well over 100,000 Black Americans are currently unaware that they are living with HIV. In Washington, D.C., nearly half of all Blacks surveyed said they had never taken the test. In a multi-city survey of young gay and bisexual men, two-thirds of Black men who tested HIV-positive had previously been unaware they were infected.

The high prevalence of undiagnosed HIV infection is a key reason why the epidemic is so much worse in Black America than in other parts of the U.S. Up to 70 percent of all new infections in Black America are the result of risky behavior among people who do not know they are infected. And because Black people are more likely to be diagnosed late in the course of infection, they are also more likely to die.

Although the AIDS crisis in Black America demands significantly greater testing uptake, evidence suggests that testing rates have flattened or may even be on the decline among Black people. Surveys by the Henry J. Kaiser Family Foundation found that the percentage of Black people under age 65 who reported recent testing remained stable between October 1997 (39 percent) and March 2009 (40 percent). A separate analysis of results from CDC-sponsored behavioral surveys suggests that testing rates among Blacks actually declined between 1999 and 2007.

How Traditional HIV Testing Falls Short

Oprah Winfrey takes the first HIV test January 6, 2007 at her new $40 million South African school for disadvantaged girls in Johannesburg, South Africa. Photo: AFP/Getty Images.

Throughout most of the epidemic, public health authorities have concentrated on promoting testing for people at high risk of infection, such as gay men and drug users. But this risk-based approach to testing misses the large number of Black people who become infected despite engaging in low levels of risk behavior. One study in South Carolina, where Blacks make up nearly three-quarters of all people living with HIV, found that risk-based testing would miss 79 percent of all HIV infections.

The historic use of blood-based testing technologies also limits testing uptake in Black communities. According to surveys, Blacks are more likely than other racial or ethnic groups to prefer testing of urine or oral fluids.

The Public Policy Response

In 2006, CDC announced a radical shift in national HIV testing policy. The CDC recommended that health care settings inform all patients between the ages of 13 and 64 that an HIV test will be performed unless the patient expressly declines one (or "opts out" of testing, as it's known in public health parlance). Under this new testing framework, which is today the federally-recommended standard, neither separate written consent nor prevention counseling should be required for testing in health care settings -- hospitals, clinics, doctor's offices, etc. The guidelines also recommend that individuals with high risk of HIV infection be tested at least once annually and that HIV should be incorporated into the routine panel of tests for pregnant women.

The 2006 guidelines reject the old risk-based paradigm for testing. The CDC guidelines have important implications for increasing the number of people tested in Black communities. In contrast to the U.S. as a whole, where HIV infection is heavily concentrated in particular, discrete populations, HIV is widely generalized throughout Black America. By making testing a routine part of regular medical care, the approach in the CDC guidelines would cast the testing net much more broadly in Black communities, reaching many who would be missed through risk-based testing strategies.

Although an important sign of progress, the 2006 guidelines are not a panacea. While the CDC recommends elimination of the mandate for counseling in connection with testing in medical settings, the Black AIDS Institute continues to encourage providers to capitalize on the testing encounter to talk to their patients about HIV. Moreover, while the CDC guidelines are influential, they do not have the force of law, since states have historically handled most health care regulation. At least 11 states revised their laws between 2006 and 2008 to make them consistent with CDC's recommended approach.

Why We're Not Making More Progress

Despite favorable public policy changes and improvements in HIV testing technologies, the gap between current testing rates and what is needed to meet the AIDS challenge in Black America remains enormous. There are several reasons for this.

Stigma

Although the stigma associated with HIV has lessened over the course of the epidemic, many Black Americans still avoid becoming tested out of fear that they will suffer harm if they test positive. Surveys of HIV-positive Black men and women indicate that many experience discrimination or social stigma as a result of their infection. One study of an uninsured, inner-city Black population found that stigma was among the most common reasons cited by study participants for avoiding HIV testing.

Unfortunately, the visibility of HIV awareness and anti-stigma efforts has declined; between 2004 and 2009, the percentage of Black Americans who report having heard a lot about AIDS in the previous year fell from 62% to 33%.

Written Consent

While many states have changed their laws to bring them into line with CDC's 2006 testing guidelines, many still require written informed consent before an HIV test can be performed. A study by researchers from New York University found that written consent requirements are significantly associated with a reduced likelihood of HIV testing among Blacks.

Doctors Don't Offer Tests

Notwithstanding CDC's 2006 recommendations, many health care providers still fail to offer an HIV test to their Black patients. Seventy percent of Blacks surveyed in 2009 said no doctor or health care provider had ever recommended that they be tested for HIV. Among the 80 percent of participants in the above-noted 2008 survey of Black residents of Washington, D.C., who had seen a health care provider in the previous year, nearly half (49 percent) had not been offered an HIV test. Lack of reimbursement for HIV testing and associated counseling is an important reason that many providers do not encourage their patients to be tested.

This fact may be related to a larger challenge: Extensive research has shown that Blacks receive poorer quality of care for a range of health issues. It may also be related to the fact that Blacks and Latinos are more likely to seek primary care through emergency room visits, where doctors are less likely to recommend HIV testing.

Failure to Market Testing

While the CDC and state and local health departments have allocated considerable resources for HIV testing services, substantially less support has been provided for marketing initiatives that aim to establish knowledge of HIV serostatus as a social norm in Black communities. Even as AIDS remains one of the leading killers in Black America, visible testing promotion campaigns have virtually disappeared. Where marketing efforts exist, they are often too meager to make much of an impact.

This is an important shortcoming. Studies in the U.S. and in other countries have consistently found that well-designed, well-funded marketing campaigns can increase testing rates.

The Community Mobilization for Testing

After Magic Johnson announced in 1991 that he had tested HIV-positive, testing rates among Black Americans began to increase throughout that decade. Increased testing was aided by the strong support of Black political leaders and traditional Black institutions, and by extensive community efforts.

But testing rates in Black America have stalled since the late 1990s. This reflects the fragmented, episodic and under-resourced nature of earlier initiatives to promote testing in Black communities. To recapture earlier momentum and to ensure sufficiently high testing rates to meet the AIDS challenge in Black America, efforts to promote testing will need to be stronger and more sustained.

With the technical support of the Black AIDS Institute, 14 of the most prominent national Black organizations and four historically Black colleges and universities have for the first time developed and begun to implement strategic national AIDS action plans. With the launch of its Act Against AIDS Leadership Initiative in 2009, CDC has begun to provide financial support to aid these organizations in translating their plans into action.

Black political leaders are also working to increase the visibility of testing efforts. Earlier this year, 79 members of Congress wrote the House Appropriations Committee, requesting $610 million for the Minority AIDS Initiative in FY2010, or an almost 50 percent increase in funding over FY2009. Rep. Maxine Waters has introduced bills to mandate the offer of a voluntary HIV test to all federal prisoners and to require insurers to cover HIV screening. Rep. Charles Rangel and a bipartisan group of Congress members have sponsored legislation to authorize the federal government to make grants for HIV testing initiatives in Black communities.

Recommendations: Strengthening the Fight Against AIDS in Black America Through Testing

The evidence is clear: The AIDS crisis in Black America will not be effectively addressed without substantially stronger action to encourage Black people to be tested for HIV.

Recommendations for Black America

All Black Americans should talk openly about AIDS, and every Black American should know his or her HIV status by getting tested annually -- sexually active Black men who have sex with men should get tested at least twice a year. Local community testing coalitions should be formed, and leading Black organizations should set annual testing goals for their membership and constituents. National Black organizations should offer HIV testing at their national and regional conferences and conventions.

Recommendations for President Obama

The President should deliver a high-profile speech on AIDS in Black America, placing particular emphasis on the need for all Black Americans to know their HIV status. President Obama must make good on his commitment to develop a national AIDS strategy that includes a comprehensive plan to promote HIV testing. The President should order the Centers for Medicare and Medicaid Services to provide adequate coverage for HIV testing.

Recommendations for Joint Action by Congress and the Obama Administration

The federal government should implement a well-funded, multi-year, state-of-the-art media campaign to make knowledge of HIV status a social norm in Black America. Legislative initiatives to strengthen HIV testing efforts should be swiftly enacted. Congress should also fully fund the Minority AIDS Initiative.

Recommendations for the CDC and State and Local Health Departments

The CDC should provide significantly greater funding for targeted testing promotion initiatives in Black communities. Capacity-building support should be provided to local community testing coalitions in Black communities. Significantly stronger support is required for anti-stigma efforts and for initiatives to increase HIV science literacy in Black communities. Energetic efforts should focus on full implementation of CDC's 2006 testing guidelines. A comprehensive strategy is needed to increase the ability of clinicians to diagnose early HIV infection, when the risk of further HIV transmission is most acute.

Recommendations for the Private Sector

Companies and government agencies that employ large numbers of Black workers should energetically promote HIV testing. Media companies should collaborate in developing and implementing high-profile campaigns that promote HIV testing in Black America. All professional medical groups should endorse the CDC's 2006 testing guidelines, and all insurance companies should adequately reimburse medical providers for HIV testing services.

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