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Passing the HIV Test for Black America

Part of Passing the Test: The Challenges and Opportunities of HIV Testing in Black America

June 2009

HIV is a complicated virus, and combating it has demanded everyone involved -- from scientists to community activists to policymakers -- to develop inventive, often complex solutions. But one of the most powerful public health tools for controlling infectious disease is also among the most straightforward: HIV screening. That is what makes our collective performance on HIV testing so disappointing. And it is what makes recent efforts at both the governmental and the community level to finally universalize HIV testing so exciting.

In the last decade, Black community leaders and federal and state policymakers alike have focused like never before on increasing the number of people who know their HIV status. In doing so, they have challenged long-held assumptions and re-examined foundational ideas about how and why HIV testing should be done. These are welcome developments, which this report will explore in detail.

But these efforts, while promising, also show signs of being unsustainable. That's because they have largely been neither coordinated nor fully resourced. Policymakers and community leaders are now working to correct both of these shortcomings; their success in doing so will determine, perhaps more than any other factor, whether America's AIDS epidemic can be brought to an end, or whether it will continue spiraling out of control.


No Doctor's Orders

Among Black Americans, individuals between 30-49 years are most likely to report that a health care provider had recommended an HIV test (36 percent), according to surveys conducted in 2009 by the Henry J. Kaiser Family Foundation. Only 28 percent of Blacks between 18-29 have been advised by a doctor to be tested, while fewer than one in four Blacks over age 50 (24 percent) received such advice.

Our HIV testing failures have particularly dire consequences in Black America. With HIV prevalence several times higher among Blacks than in the U.S. as a whole, HIV testing is a central component of health care for all Black Americans. While Black Americans are indeed more likely to report to have ever been tested than people of other races and ethnicities, current testing rates are far short of what is needed to mount an effective fight against the disease in Black America.

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 these individuals don't know of their infection, they first seek medical services for their condition only late in the course of disease, when they are at considerably higher risk of experiencing a life-threatening opportunistic illness. The late diagnosis of HIV infection is a critical reason why HIV-positive Black Americans are twice as likely to die as HIV-infected whites.

As this report explains, the CDC, state and local health departments, and professional medical groups have joined together in recent years to revolutionize the policy approach to HIV testing. Moving away from the historic "risk-based" focus of HIV testing initiatives, the public health consensus now recommends routine HIV testing in health care settings and annual testing for individuals at high risk. Yet this change in national policy has resulted in remarkably little follow-through. According to recent surveys, most Black Americans are still not offered an HIV test when they receive medical care.


Positive, but Not in Care

Although the HIV test is the gateway to proper medical care, studies indicate that too many Black people who test HIV positive do not enter medical care after being diagnosed, which increases their risk of experiencing a life-threatening opportunistic illness.

According to Lucia Torian and colleagues at the New York City Department of Health and Mental Hygiene, Black people are significantly more likely to delay entering medical care after testing positive. In 2003, newly diagnosed Black New Yorkers were nearly 24 percent less likely than their white peers to see a doctor within three months of their HIV diagnosis and more than twice as likely as whites to be without medical care one year after their positive HIV test result.

The New York study found that being diagnosed in a facility that provided medical care significantly increased the odds of seeing a doctor soon after diagnosis.

Community-based efforts to promote HIV testing follow a similar pattern -- a strong start that hasn't been sustained. Beginning with the announcement by basketball great Earvin "Magic" Johnson in 1991 that he was HIV-positive, Black leaders increasingly urged their constituents to know their HIV status. Public awareness campaigns encouraged Black Americans to get tested, and Black politicians, clergy and celebrities publicly served as role models by publicly taking an HIV test. The number of Black Americans receiving an HIV test soared as a result. In recent years, though, testing rates in Black America have flattened or even begun to decline.

This report argues that community efforts to encourage HIV testing must be dramatically intensified. Black Americans from all walks of life need to become re-engaged in promoting HIV testing -- by talking to their friends, families and neighbors; by volunteering at a community-based AIDS organization or becoming involved in a local HIV testing coalition; and by urging their political and community leaders to raise awareness of the importance of knowing one's HIV status.

The take-home message of this report is simple: Unless knowing one's HIV status becomes the norm in Black America, AIDS will continue to devastate Black communities nationwide.

AIDS in America: A Black Disease

National Testing Day

The National Association of People with AIDS was among the first major AIDS groups to begin urging widespread HIV testing. Recognizing that access to testing alone was unlikely to generate widespread HIV testing levels needed, NAPWA in 1995 launched the National HIV Testing Day campaign to raise awareness of the need for testing and local HIV testing resources. Each year, on June 27, over 10,000 AIDS organizations, state and local health departments, media outlets, faith-based organizations, and interested citizens from across the nation come together to mount high-profile, HIV awareness and testing events in their communities.

As the principal sponsor of National HIV Testing Day, NAPWA provides extensive support to build local capacity to undertake HIV awareness and testing events. Each year, NAPWA distributes thousands of print and electronic versions of HIV testing posters, tools and resources to more than 250,000 partners and works with local partners to plan and implement testing initiatives. During 2008, National HIV Testing Day generated more than 90 million print media impressions.

In concert with OraSure Technologies, NAPWA mobilizes mayors from around the country to help promote local HIV awareness and testing initiatives. In 2009, 100 cities will participate in the Mayor's Campaign Against HIV. Leaders who will lend their active support to local testing efforts on National HIV Testing Day in 2009 include prominent Black leaders: Congresswoman Maxine Waters (D-Calif.), Congresswoman Barbara Lee (D-Calif.), Congresswoman Eleanor Holmes Norton, Mayor Michael Nutter (Philadelphia) and former Mayor Johnny Ford (Tuskegee, Ala.).

AIDS in America today is a Black disease. Regardless of the lens used to study the epidemic -- gender, age, class, sexual orientation, or geography -- Black people are more heavily affected by HIV than any other group.

Black people account for 46 percent of all Americans living with HIV1 and for 45 percent of all new HIV infections2 each year, though we represent just 12 percent of the U.S. population.3 In 2006, Black people were 7.3 times more likely than whites to become newly infected with HIV.4 Over the course of a lifetime, Black men are 6.5 times more likely to become infected than white men, while Black women are more than 19 times more likely than white women to contract HIV.5

"Unless knowing one's HIV status becomes the norm in Black America, AIDS will continue to devastate Black communities nationwide."
Although HIV's burden upon the Black community has grown steadily over the course of the epidemic, the epidemic's disproportionate impact in Black America is not new. As early as the mid 1980s, when AIDS was still considered a disease relevant only to white gay men, Blacks were already logging more new HIV infections every year than whites.6

Today, Black America is experiencing what's called a generalized epidemic -- meaning it touches even individuals who engage in relatively low levels of risky behavior, like having unprotected sex or sharing needles. If Black America were a country in its own right, it would rank 16th globally in the size of its HIV-positive population. Outside of sub-Saharan Africa, only four countries have HIV prevalence as high as the most conservative estimate of HIV prevalence in Black America.7 (For more detail on the comparison between the Black American epidemic and the worst epidemics globally, read the Black AIDS Institute's 2008 report, Left Behind -- Black America: A Neglected Priority in the Global AIDS Epidemic.)

The emergence of highly active antiretroviral therapy -- known as HAART, or more popularly as "combination therapy" -- has helped drive down AIDS deaths for all of the U.S. over the last decade. Yet, much of Black America is not benefiting from the treatment revolution. Even in the era of effective HIV therapies, AIDS is still one of the leading causes of death among Black men and women.8 In New York City -- home to one in seven AIDS cases nationwide -- Black people living with HIV have an age-adjusted death rate that is twice as high as their white peers.9 Nationally, in 2006, Blacks accounted for nearly 4 in 10 AIDS deaths.10

Left: Television personality Regina King takes an HIV test on June 25, 2007 at a Test 1 Million event held in connection with the Screen Actors Guild and the American Federation of Television and Radio Artists. Right: Congresswoman Barbara Lee takes an HIV test on World AIDS Day, December 1, 2006 at the AIDS Project of the East Bay in Oakland, Calif.

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This article was provided by The Black AIDS Institute. Visit Black AIDS Institute's website to find out more about their activities and publications.