Why We're Not Making More Progress

Despite important improvements in HIV testing technologies and the adoption of a significantly more proactive public health approach to testing, the gap between current testing rates and what is needed to meet the AIDS challenge in Black America remains enormous. As this section explains, numerous factors continue to discourage Black people from learning their HIV status. Closing the testing gap will require major additional efforts to address these critical impediments.

Stigma

While much has changed since the epidemic's early years -- when leading political commentators urged that HIV-positive people be tattooed or quarantined -- HIV continues to be associated with social stigma in many communities. A survey of young HIV-infected gay and bisexual men (45 percent of whom were Black) found considerable experience of social stigma associated with HIV infection, with particularly prominent fears associated with disclosure of HIV status.⁴³ Evidence indicates that Black women living with HIV also experience high levels of stigma as a result of their infection.⁴⁴

Studies demonstrate that HIV-positive Black people are particularly likely to perceive HIV-related stigma if they lack strong social support networks.⁴⁵ An important source of HIV stigma among Black Americans is the enduring perception that HIV is a "white gay man's disease."⁴⁶

Stigmatizing attitudes about HIV often deter Black people from seeking HIV testing services. A study of an uninsured, inner-city African-American population found that stigma was among the most common reasons cited by study participants for avoiding HIV testing.⁴⁷

In the epidemic's early years, CDC and state and local health departments invested considerable resources in efforts to reduce HIV-related stigma and discrimination. Over the years, however, as the epidemic has evolved into one that primarily affects Black people, the visibility of HIV as an issue has diminished. The percentage of Black Americans who report having heard a lot about AIDS in the previous year fell nearly by half between 2004 and 2009 -- from 62% to 33%.⁴⁸

Written Consent

Although CDC's 2006 guidelines recommend elimination of longstanding requirements for written and informed consent for HIV testing, many states have yet to align their laws with the new guidelines.

Evidence suggests that written consent requirements reduce HIV testing rates in Black America. The above-noted NYU study of testing practices, drawing from data from the CDC's Behavioral Risk Surveillance System, examined a number of state policy options to determine their effect on testing rates among Black Americans. This study found that written consent was the sole policy change in the CDC's 2006 guidelines that significantly correlated with a reduced likelihood of HIV testing among Blacks. Eliminating a requirement for written consent increased the likelihood of testing by 7 percent, according to the study.⁴⁹

Access to Quality Care

CDC has the authority to issue recommendations to health providers, but it is up to the providers themselves and to their state regulators to ensure that these recommendations are put into practice. Unfortunately, evidence suggests that many providers have yet to incorporate CDC's recommendation for routine testing into their clinical practice.

Although Black people are more than twice as likely as whites to report talking to their doctor about HIV,⁵⁰ many health care providers fail to counsel their Black patients to be tested. Seventy percent of Blacks surveyed in 2009 said no doctor or health care provider had ever recommended that they be tested for HIV.⁵¹ 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.⁵² Among Black and Hispanic men reached at Gay Pride events in nine U.S. cities in 2004-2006, 74 percent had visited a health care provider in the prior year but only 41 percent had been offered an HIV test.⁵³

Extensive research has established that Black Americans from all walks of life are less likely to get quality care, on a range of health issues, than their white peers. HIV is no different. Black Americans and Latinos are also more likely to be uninsured or underinsured, less likely to regularly see doctors and, according to physicians with large Black practices, less likely to be actively engaged in their care. All of this makes the already difficult conversation around HIV testing more complicated still. Blacks and Latinos are also more likely to depend upon the emergency room for routine health needs than their white peers. And despite high rates of HIV and STDs in emergency departments, emergency room physicians are less likely than other doctors to recommend HIV screening.⁵⁴

In 2000, only 28 percent of U.S. physicians recommended HIV screening for their patients.⁵⁵ While dozens of medical associations have endorsed the CDC's 2006 guidelines, many had yet to do so as of August 2008.⁵⁶ Surveys also indicate that lack of third-party reimbursement for HIV testing services discourages many clinical settings from offering an HIV test.⁵⁷

Silence Still Equals Death

Perhaps above all, HIV testing efforts suffer from the common assumption that merely offering such services will be sufficient to ensure widespread service utilization. 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. In a June 2009 article, the Washington Post noted "the rarity with which ... billboards or bus stop advertisements tell residents that AIDS is a major health threat in the city." According to the Post, "Despite evidence showing that advertising increases AIDS awareness, there's almost no marketing to inform District residents of the problem's magnitude."⁵⁸

Where advertising efforts exist, they are often too meager to make much of an impact. In response to evidence of extraordinarily high HIV prevalence and low rates of HIV testing, the Washington, D.C., government has committed $500,000 annually toward a five-year advertising campaign. Yet in one of the most expensive media markets in the world, it's reasonable to question whether such a campaign will make a difference.⁵⁹

Through partnerships with MTV and other networks, Henry J. Kaiser Family Foundation has pioneered innovative strategies to leverage limited resources to reach millions. Likewise, the Black AIDS Institute has forged working partnerships with Black Entertainment Television and with Black newspapers and radio stations to disseminate HIV-related messages. Without financial and technical support, however, most Black communities do not have the resources or skills to plan and implement such labor-intensive strategies to spread the word about HIV testing.

The diminished visibility of testing promotion campaigns permits fears, misconceptions and attitudes to flourish that often deter individuals from seeking an HIV test. For example, numerous studies indicate that fear of receiving a positive test result is a principal reason many people avoid HIV testing,⁶⁰ highlighting the lack of understanding among many Black Americans that life-saving therapies exist for the treatment of HIV infection.

Many Black people appear to be unaware that free testing services are easily accessible. In Washington, D.C., one out of four untested Black survey participants said they did not seek testing because they lacked money or insurance.⁶¹ Given that Blacks with undiagnosed HIV infection are quite likely to be low income, uninsured and dependent on Medicaid and other public health programs,⁶² it is critical that public campaigns emphasize that HIV testing and treatment services are available without charge.

Studies consistently find that a sizable portion of Black Americans also avoid HIV testing due to fears regarding confidentiality or privacy.⁶³ Acceptance of HIV testing increases when confidentiality protections are in place and clearly understood by the patient.⁶⁴

Significant numbers of Black Americans have misconceptions about HIV that could affect their motivation to be tested. For instance:

• 37 percent of Black people incorrectly believe that basketball star Earvin "Magic" Johnson has been "cured" of AIDS (or are unsure of the correct answer);
• 36 percent believe a vaccine is currently available to prevent HIV infection; and
• 30 percent believe drugs are available to cure HIV infection.

These rates are all notably higher than responses reported for Latino and white survey participants.⁶⁵ A survey of emergency department patients found that 28 percent believed that rapid tests were less accurate than standard antibody tests.⁶⁶

The prevalence of these sorts of misconceptions is related to the low HIV science literacy in many Black communities. The primary community-based vehicles for promoting HIV science literacy -- such as San Francisco's Project Inform or the treatment education programs housed in major AIDS service organizations -- were originally created by and for largely white gay communities. Relatively few HIV literacy initiatives specifically aim to increase understanding of HIV-related scientific concepts in Black communities. An exception is the Black AIDS Institute's AIDS Science and Treatment College, a component of the Institute's African American HIV University. This year-long capacity-building initiative includes intensive classroom instruction and supervised internships for individuals working in Black organizations.

The declining visibility of HIV as an issue in Black communities decreases the likelihood of many individuals reflecting on their individual risk. According to a recent review of the public health and behavioral literature from high-income countries, individuals are more likely to be tested when they perceive their personal risk for HIV and understand the benefits of testing.⁶⁷ This is consistent with evidence derived from experience during the first decade of HIV testing.⁶⁸ In New York City, testing rates increased by 20 percent in 2008 following the city health department's launch of a Bronx-wide campaign to promote HIV testing in the New York borough with the highest AIDS death rate.⁶⁹

Studies in the U.S. and throughout the world have consistently demonstrated that well-planned, targeted campaigns can significantly increase testing among people at risk.⁷⁰ In particular, the use of media has been documented as an effective strategy to increase testing.⁷¹ Among D.C. residents who reported seeing an HIV testing initiative in 2008, 64 percent also reported that the initiative made them want to get tested.⁷²

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