Back to Basics: Making HIV Testing Routine
In the aftermath, state and local governments passed laws that made HIV testing a special case, requiring that patients sign an extraordinary informed consent document before they could be tested. Though government and private organizations may have encouraged individuals to seek testing, such burdens meant that HIV tests never became a routine part of clinical care in the United States.2
Sixteen years after Bush's ill-fated speech, the U.S. government has again announced plans to make HIV testing a standard procedure. An HIV prevention initiative announced on April 18, 2003, by the U.S. Centers for Disease Control and Prevention (CDC):
... emphasizes the use of proven public health approaches to reducing the incidence and spread of disease. As with other sexually transmitted diseases (STDs) or any other public health problem, principles commonly applied to prevent disease and its spread will be used, including appropriate routine screening, identification of new cases, partner notification, and increased availability of sustained treatment and prevention services for those infected.3
Given the history of controversy that has surrounded HIV testing, one might suspect that talk of "routine screening" and handling AIDS like "any other public health problem" would have activists marching in the streets. But the CDC's new strategy has been met with little outright objection. While there have been concerns voiced about particular aspects of the plan, and some fear that focusing more funding and effort on HIV-infected individuals will undercut programs working with seronegative people, most commentators are praising the plan to make HIV testing routine and approach the epidemic with a more traditional public health strategy.4-6
What are we to make of this? One interpretation is that science is finally winning out over politics. "AIDS exceptionalism" -- through which activists and civil libertarians tie the hands of public health experts and the government by playing up fears of discrimination and invasion of personal privacy -- is starting to wane.
Subscribing to this way of thinking, the head of a Texas-based sexual health policy organization wrote in a recent op-ed that the CDC's new strategy is "a first step toward treating HIV/AIDS like a public health challenge, not a political issue."7 Other recent accounts of the history of AIDS and the response to it would agree.8, 9
This view is correct in the sense that the CDC's shift represents a closer approximation of science-based disease control and standard public health practice. It is inaccurate, however, to the extent that it paints the change as a victory over misplaced concerns for rights and freedoms. That it is now possible to approach HIV with a strategy that employs the proven methods of public health management with little fear of resultant discrimination speaks to medical and technical advances -- and to victories for the causes of human rights and social equality. It is wrong to see it as the overcoming of obstacles inappropriately raised in the name of these ideals.
Though some details remain to be seen, the answer to that question appears to be "yes." Current strategies are simply not lowering infection rates and reducing unsafe sexual behavior. Additionally, there is a great deal to be gained by employing new technology to make testing more routine and efficient.
After the virtual elimination in the United States of the risk of spreading HIV through blood donations and in clinical settings, and the great reduction of perinatal HIV transmission, the main modes of HIV transmission in the United States became sharing syringes in intravenous drug use and unprotected sex. Partly because testing has been so controversial, and because programs to provide clean syringes to drug users are wrongly banned from receiving federal funding, government HIV prevention at the national, state, and local levels has focused on bringing "safer sex" messages to HIV-negative people -- particularly those seen to be "at risk" for infection.
It has been pointed out that measuring the efficacy of such programs is very difficult. The safer sex message reaches millions and one cannot be sure, it is argued, how many of these people might have become infected were it not for learning how to protect themselves. There may be some truth to these assertions, but the numbers that we do have point quite clearly to an overall strategy of AIDS prevention that is simply not working.
While the total estimated number of new infections appears to have stagnated in the early 1990s at around 40,000 per year, reliable evidence shows an increase in the last several years. From 1999 through 2001, in the 25 states where laws have allowed hospitals and clinics to report newly diagnosed cases of HIV infection since 1994, the number of infections increased by 14 percent among men who have sex with men and 10 percent among heterosexuals.10 More recent data from individual states and urban areas point to a distinct rise in other sexually transmitted infections -- a trend that bespeaks more people having unsafe sex and putting themselves at risk for HIV infection.11-15 (It is particularly disturbing that a higher percentage increase would be seen among gay males because they are precisely the group that has been most targeted for safer sex programming.)
At the same time that existing programs do not appear to be inspiring behavior change and adequately preventing HIV infection, there is an unmet need among at-risk populations for greater knowledge of personal infection status. A recent report, which confirmed the findings of previous studies, presented data showing that a majority of urban HIV-infected males who are young, gay, and sexually active did not know they were infected. Fully 91 percent of African Americans in this group were unaware of their seropositivity status and 60 percent of white males were unaware of it. These data, drawn from studies in urban areas, are particularly disturbing. But the total estimate of Americans who do not know they are living with HIV is also shocking: as many as 280,000 of the nearly 1 million Americans who are HIV-infected are unaware of it -- approximately 25 percent of the total.16
There is good reason to believe that many new infections could be prevented if more HIV-infected people were made aware of their status and targeted with safe sex messages. Several studies have shown, for example, that the majority of people surveyed adopt safer sexual behavior after learning of their infection and beginning treatment.17 If the approximately 25 percent of infected Americans who do not know their status could be tested and brought into treatment, we could greatly reduce the number of potentially HIV-transmitting sex acts.
There will be further benefit in making HIV testing a more routine part of care in all clinical settings because data show that the many sexually active gay men who do not disclose their sexual orientation avoid testing locations that are associated with the homosexual community. This is especially true of minority men who have sex with men and it is doubly significant in light of the fact that minorities are over-represented among new HIV diagnoses.18
Another major hurdle preventing HIV-infected people from being made aware of their status is overcome by the CDC's adopting the new OraQuick testing technology that can determine within 20 minutes the presence of antibodies that indicate HIV infection. Older HIV tests required one to two weeks for processing, and a significant percentage of people who were tested would simply not return to retrieve the results. Unpublished CDC data show that 31 percent of people who tested positive for HIV in 2000 did not return to the testing site to learn of their infection.3 Experienced HIV test providers estimate that number is actually as high as 50 percent in some regions of the country.19 With results prepared while the individual waits, there is no danger of his or her not returning to learn them.
Again, such new methods as more portable tests may be better able to reach minority populations and other groups that do not have a community association with existing prevention centers.20
There are copious data showing that programs providing intravenous drug users with clean syringes reduce the spread of HIV and do not increase the use of illicit drugs. In other areas of the world, and in some U.S. urban areas, there has been some success with helping commercial sex workers to reduce their risk by using condoms. The CDC would do well to fund these strategies. (Though, in fairness, doing so would require a political wind change at federal, state, and local levels that might be far beyond anything that one CDC administration could bring about.)
Second, even if the data indicate that existing programs focusing on people who do not have HIV are not effective enough, it would be wise to hedge our bets, so to speak, and ensure that these programs are not entirely cut off from federal funding.
Robert Janssen, Director of the CDC's Division of HIV/AIDS Prevention, made this case in an article published in July 2001.21 After the April 2003 announcement of the new CDC strategy, he held a conference call with prevention advocates and informed them of the shift in priorities away from safer sex programming for people uninfected with HIV.22 At this writing, the new plan is only now taking effect, with rollout beginning June 27, 2003, for co-sponsored promotion of increased testing among the population as a whole. How exactly prevention money will be spent, then, remains to be seen. It would be inadvisable to change course entirely and leave out all other forms of HIV prevention.
Third, it is unfortunate that the plan is not being implemented as part of a general increase in federal support for HIV prevention, care, and treatment efforts. If thousands more individuals are to be made aware of their HIV infection and brought into treatment, there should be more money available to pay for that treatment. But the federal budget includes only a minimal increase, one that will not cover the increased need, for state AIDS Drug Assistance Programs.
It must be made clear that this is not simply a long delayed public health victory, a matter of sound policy finally trumping political quibbling. Rather, this policy shift was made possible by a series of medical advances, legal developments, and changes to society's attitudes. Understanding this confluence of forces can help us to build on them in the United States and should be applicable in other contexts as well.
The medical advancements that have taken place to engender the routinization of HIV testing are the most obvious. Nine years after the development of HAART, we must not lose sight of the fact that an HIV diagnosis once meant nothing to the diagnosed but a painful death (as it still does in much of the developing world). When there is no effective treatment, and there are, as we shall see, significant psychosocial drawbacks to a positive diagnosis, routine testing or screening is far more an imposition on the individual, regardless of any gains to the community at large. It is a step that should be taken more carefully and one that will be made less effective through resistance from individuals and affected groups.23
State of the art HIV treatment is still far from perfect, but it has advanced a great deal in the last two decades, and its effect is increased when it is implemented before a patient is symptomatic for AIDS. These facts, considered alongside the development of extremely accurate HIV tests that can be performed by a physician, allied healthcare professional, or trained volunteer, without lab work, have altered the scales. The potential benefit to any individual of learning his or her serostatus has increased relative to the potential harm.
Other changes to the balance of benefits and harms are to be seen in the area of legal and policy changes. In 1987, a representative for National Gay Rights Advocates explained the gay community's fears to a Los Angeles Times reporter: "All those who test positive are going to get their insurance canceled and go on Medicaid, possibly lose their jobs, their apartment."24
These were not irrational concerns at the time, and they contributed to an understanding of HIV as an extraordinary disease, not to be treated with the same disease control approaches as would be employed to fight other infections.
This from a 1989 article in the American Journal of Public Health:
HIV infection is not like any other clinical conditions, even those that are potentially lethal. It carries not only great psychological burdens but the possibility of severe stigma and discrimination, including rejection or avoidance by healthcare workers and poor-quality treatment.25
This is the era, it should be remembered, when hemophilic children in the United States who tested positive for HIV were being banned from attending public schools. Internationally, countries were officially outlawing people with HIV or those who belonged to potential risk groups, such as homosexuals and commercial sex workers.26
Since then, many states have written methods to prevent such discrimination into their laws, eliminating a major impetus for the public -- particularly the already marginalized groups who were most at risk for AIDS -- to resist routine testing. By creating government programs that pay for treatment of HIV-infected patients while they remain in the asymptomatic stage of disease progression, the government also added a benefit to early detection of HIV-positive status.2
Outside of the United States, Jonathan Mann deserved a good deal of credit for preventing the legal discrimination of patients with HIV/AIDS. He organized the agreement of 150 nations to swear off such practices and convinced the World Health Organization to prioritize human rights within its response to the pandemic.27
As U.S. Supreme Court Justice Sandra Day O'Connor remarked in a recent collection of essays, "rare indeed is the legal victory -- in court or legislature -- that is not a careful byproduct of an emerging social consensus."28 The outlawing of discrimination against HIV-infected individuals in U.S. law and government policy indicates a general shift in attitudes toward those who test positive and the groups seen to be at high risk for testing positive.
Such cultural changes are nebulous. It is more difficult than is the case with medical and legal advancements to point to them, establish a record of how they came about, and elucidate their effects. But they are nonetheless real, and they have had an impact on what approaches to HIV public health are acceptable.
Continuing on a trajectory that began in the late 1960s, gays and lesbians in the United States have become more accepted within society as a whole. This can be seen in everything from pop culture (where they are characters on hit television shows -- inconceivable a decade ago) to national jurisprudence and the U.S. Supreme Court decision to disallow laws banning gay sex -- a ban the court upheld in 1986.
Stanford University legal scholar Pamela Karlan describes how during the 17 intervening years between hearings on these so-called "sodomy laws," the justices' attitudes, and therefore their ultimate decision, were influenced by a growing familiarity with and acceptance of gays. In 1986, according to Karlan, U.S. Supreme Court Justice Lewis F. Powell remarked to a gay clerk that he did not know any homosexual people. In 2003, justices, along with much of American society, were aware that many of their friends and co-workers identified as gay.29 And because being gay was normalized and familiar, discriminatory practices focused on some largely imagined "other" were no longer possible.
A brief example in the realm of federal HIV policy is instructive. In 1991, President George H.W. Bush was famously advised that a good HIV prevention strategy would be to steer public opinion toward collectively deeming gay sex "unacceptable."30 Though he considers himself a social conservative, and is not willing to endorse full acceptance of the homosexual lifestyle, it is unthinkable that the younger Bush (elected less than a decade later) would entertain such policy ideas. (He has also appointed two openly gay men, Joseph O'Neill and Scott Evertz to serve as Director of the White House Office on AIDS -- a move that would have been political suicide during his father's term in office.)
True, gays do not yet enjoy full approval in American society, and prejudice against other groups at increased risk for HIV (intravenous drug users, commercial sex workers, minorities, immigrants) has not been reduced in the same way it has for gays. It is nonetheless important to realize that the threat of discriminatory practices toward gays has been lessened by their increased acceptance in U.S. society and this, in turn, has improved the applicability and effectiveness of traditional public health strategies. We can learn from how this process of de-stigmatization has altered the possibilities for public health and apply the lessons elsewhere.
Having reached this point, U.S. HIV/AIDS advocates should recognize the current possibilities for employing proven public health strategies more broadly in the fight against HIV. While remaining wary of sliding back into discrimination, and advocating for increased funding for treatment and prevention, they would also do well to encourage local and state authorities to reduce barriers to practices such as routine testing, confidential partner notification, and national reporting of incidence and prevalence rates.
The U.S. experience also shines light on steps for improving prevention efforts that could be applicable elsewhere, particularly in the developing world. If we are to routinize testing in these settings, access to effective treatment and accurate testing should be improved; laws and public policy should be altered to reflect anti-discrimination positions; and efforts should be made to de-marginalize HIV-infected people and those seen to be at high risk for infection.
Most clearly, we need to move beyond the notion of a dichotomy that separates public health from human rights. When individuals and groups have reason to fear the effects of disease control measures, they will resist them -- and forcing such measures on the populace is both morally questionable and impractical. In light of this, society's interest in fighting infectious diseases should be seen as cause to protect the rights of infected individuals and implement strategies that encourage their cooperation in public health interventions.
Mark D. Wagner is Director of Communications of the International Association of Physicians in AIDS Care (IAPAC).
This article was provided by International Association of Physicians in AIDS Care. It is a part of the publication IAPAC Monthly.