The Public Policy Response

Public health policy regarding HIV testing has a long and contentious history. HIV was the first major infectious disease to emerge in the post-World War II era of human rights. So laws regulating HIV testing have reflected policy makers' efforts to balance traditional public health concerns with our national values of privacy and confidentiality.³¹

Beginning in the 1980s, every state, as well as the District of Columbia, adopted HIV-specific legislation to guide public health's response to the epidemic. Such laws typically regulated who could administer an HIV test, mandated pre- and post-test counseling, and required the individual's specific, written and informed consent before an HIV test could be performed.³² Federal guidelines buttressed these state regulations by encouraging public health authorities to cast a narrow net with its tests. The 1987 guidelines recommended that HIV testing focus on individuals who engaged in "high-risk behaviors" or sought treatment for a sexually transmitted disease.³³

In addition to emphasizing a risk-group focus for testing services, public policy in the epidemic's first decade also placed little emphasis on repeat testing for individuals at risk. On the contrary, many public health authorities used such pejorative terms as the "worried well" to refer to individuals who had previously tested HIV-negative but desired another test. Implicit in the early public health approach was the assumption that a negative HIV test, combined with pre- and post-test counseling, would be sufficient to ensure that HIV-negative individuals would refrain from taking future risks that could cause them to acquire HIV.

Moreover, AIDS advocates in the epidemic's first decade displayed a consistent and unrelenting resistance to most testing initiatives. That's because two difficult realities made testing seem like it presented high risks with few benefits. No treatment options had demonstrated effectiveness in prolonging life, and at the same time, no national law ensured access to health care or protected against HIV-related discrimination.³⁴ So why get tested and open yourself to potential bias? The Reagan administration's ostrich-like approach to the epidemic didn't help. Rather than funding HIV prevention, treatment and research, the administration imposed punitive, mandatory HIV testing regimens in a number of federal programs.

Two major developments in the 1990s pushed new thinking about the HIV test. First, in 1992, Congress passed, and President George H.W. Bush signed into law, the Americans with Disabilities Act. It was the first national law that broadly banned discrimination on the basis of an individual's HIV status. Second, the FDA approval of a new class of antiretroviral compounds, called protease inhibitors, ushered in the era of Highly Active Antiretroviral Therapy. As evidence from clinical trials and the real world demonstrated the striking effectiveness of HAART in preventing HIV-related illness and death, the thinking on HIV testing radically shifted.

A New Approach to HIV Testing

CDC first began to move away from risk-based targeting of HIV testing in 1993, when it issued guidelines recommending routine, voluntary testing and counseling for patients in hospitals where HIV prevalence in the surrounding community was 1 percent or greater.³⁵

A number of studies have demonstrated that most patients in emergency rooms and other settings are willing to be tested for HIV during the course of medical care.³⁶

But the major shift didn't come until more than a decade later. In 2006, CDC announced a sharp departure from prior national HIV testing policy. 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.³⁷

The 2006 guidelines represent a dramatic departure from prior practice for several reasons. The CDC's new approach recognizes that, as discussed above, the historic focus of testing initiatives on high-risk populations misses substantial numbers of people who are, in fact, at high risk of infection, particularly in the Black community.³⁸ The 2006 recommendations also reconsider the relative import of public health interests and privacy concerns, concluding that the public health interest in lowering AIDS deaths and preventing new HIV infections may override the more protective instincts reflected in earlier approaches to testing. CDC's recommendations appear to signal that many public health watchers believe the stigma associated with a positive HIV test result, while still real, has significantly diminished since the epidemic's early years.

The approach reflected in the 2006 guidelines has important implications for increasing the number of people in Black communities who know their HIV status. As discussed above, the Black epidemic is a "generalized" one, and a testing policy that is equally broad-based is far more likely to identify Black HIV infections in real time -- rather than years after the fact, when it is often too late. According to one study, broad-based screening of Black men significantly reduced the percentage of missed diagnoses when compared to risk-based screening.³⁹

CDC has also rightly noted that broad-based HIV testing can help reduce stigma associated with HIV, by disentangling it from specific groups of people or behaviors that create the most risk for HIV transmission. President Obama's newly appointed CDC director, Dr. Thomas Frieden, says that's one reason he has been among the nation's most outspoken proponents of broad-based testing. As he explained on World AIDS Day 2005, while serving as New York City's health commissioner, "Our outdated approach to HIV screening means that we not only fail to identify infected patients promptly and thus allow the epidemic to continue to spread, but we may also perpetuate HIV-related stigma by targeting screening only to those perceived to be at risk."

Although the CDC guidelines recommend elimination of the mandate for counseling for HIV testing in health care settings, the Black AIDS Institute continues to encourage providers to capitalize on the testing encounter to talk to their patients about HIV. Black America's literacy about and understanding of HIV remains remarkably, disturbingly low. The testing moment offers an ideal place to begin the education process through meaningful counseling, both before and after the test itself. Testing can be more than a chance to learn your status; it is also an opportunity to learn about the virus and, thereby, combat stigma as well.

There are other limitations to the new testing framework. While CDC recommendations are influential, they do not have the force of law, since states have historically handled most regulation of public health. And many state regulatory regimes, adopted earlier in the epidemic, are inconsistent with various elements of the 2006 CDC recommendations.⁴⁰ In particular, many state laws continue to mandate prevention counseling and written informed consent for an HIV test to be performed.⁴¹ At least 11 states have revised their laws between 2006 to 2008 to make them consistent with CDC's new approach, but substantial inconsistencies remain in many states.⁴²

Moreover, even state regulatory regimes do not always determine what occurs in clinical settings. At the end of the day, health care providers determine which medical tests to recommend to their patients. Factors that may influence provider decisions include the availability of third-party reimbursement for particular procedures, the prospect of incurring legal liability, or the provider's awareness of the most up-to-date standards in a particular clinical field.

HIV at Its Most Infectious Stage The likelihood of HIV transmission is strongly associated with the infected individual's viral load. When an individual first becomes infected, viral load spikes until reaching a peak about three weeks after infection. This is called the "acute" stage of infection. Individuals with acute HIV infection can play a significant role in the rapid spread of HIV within social networks. Not only are individuals with recent infection highly infectious, but since they are unaware of their infection, they are likely to continue the risky behaviors that resulted in their own infection -- thereby placing their sex and/or needle-sharing partners at considerable risk of acquiring HIV, too. For half or more of individuals who become infected, flu-like symptoms accompany seroconversion. However, diagnosis of HIV seroconversion is complicated by the fact that the symptoms associated with acute HIV infection are difficult to distinguish from many common ailments. The role of acute infection in the rapid spread of HIV underscores the importance of prompt diagnosis. Health education programs are urgently needed to alert clinicians to the signs and symptoms of acute infection. As antibody tests are often unable to identify HIV infection soon after exposure, clinicians should prescribe PCR testing for patients who show signs of possible early HIV infection. Many clinicians also believe that early initiation of antiretroviral therapy during acute HIV infection may confer long-term clinical benefit by minimizing the explosion of viral activity that accompanies early infection. However, this hypothesis has not been validated by clinical studies. Studies have demonstrated the feasibility of targeted testing for acute infection that focus on high-incidence clinical and geographic settings.

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