<<previous  |  index  |  next>>

Expanding Resources, Narrowing Approaches: Moralizing the Epidemic (2000-2005)

In June 2001, a historic U.N. General Assembly Special Session (UNGASS) on HIV/AIDS for the first time generated global acknowledgement of the pandemic as not only a public health crisis but also a threat to societies and international security. The special session put virtually all of the world’s leaders on record as endorsing a set of specific global targets in combating HIV/AIDS, while its formal declaration explicitly underscored the links between poverty, underdevelopment, and illiteracy to the spread and impact of HIV/AIDS. It also recognized that stigma, silence, discrimination, and lack of confidentiality undermined prevention and care efforts, and that gender equality and the empowerment of women and girls were fundamental to reducing vulnerability. The Declaration affirmed that access to medication in the context of pandemics such as HIV/AIDS was fundamental to the realization of the right to health.

Specifically, governments pledged: “by 2003, to enact, strengthen or enforce as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against, and to ensure the full enjoyment of all human rights and fundamental freedoms by people living with HIV/AIDS and members of vulnerable groups, in particular to ensure their access to, inter alia, education, inheritance, employment, health care, social and health services, prevention, support and treatment, information and legal protection, while respecting their privacy and confidentiality; and develop strategies to combat stigma and social exclusion connected with the epidemic.”4

While this effort arguably increased the political will to address HIV/AIDS, the most important change in this era was perhaps the increased allocation of resources committed to fighting the epidemic. In 2001, the Global Fund to fight HIV/AIDS, TB and Malaria was created. Three years later, the United States Leadership against AIDS, Tuberculosis and Malaria Act of 2003 (the U.S. Global AIDS Act) and the U.S. President’s Emergency Plan for AIDS Relief (commonly known as PEPFAR) were enacted. The same year, a revitalized WHO announced an ambitious plan to get three million people on anti-retroviral treatment by the end of 2005.

But these declarations and commitments of new resources, while seeming to recognize the central importance of combating the human rights violations underlying the epidemic, have addressed them in only limited ways. The integration of prevention and treatment programs has splintered. Science-based prevention programs increasingly are being replaced by conservative, moralistic sexual abstinence campaigns that stigmatize those living with AIDS and deny people information about condoms. Treatment programs have made some headway but still do not reach many affected populations and still do not recognize critical obstacles that rights-based approaches would help overcome. In 2003, one-half of all governments in sub-Saharan Africa had yet to adopt legislation specifically outlawing discrimination against people living with HIV/AIDS and only one-third of countries worldwide had adopted legal measures specifically outlawing discrimination against populations especially vulnerable to HIV/AIDS.

Throughout the 1990s the dominant approach to HIV prevention among young people was comprehensive sex education, which teaches abstinence as a healthy choice for young people but also provides information about condoms and safer sex. As a part of the PEPFAR program, comprehensive sex education programs are being replaced by programs that emphasize “abstinence only” until marriage, which censor or distort information about condoms and safer sex. The U.S. Global AIDS Act requires that 33 percent of HIV prevention spending go to “abstinence-until-marriage” programs.5 Abstinence-only proponents commonly rely on fear-based messages, making unsubstantiated claims about the psychological effects of pre-marital sex and exaggerating the failure rate of condoms. These programs often suggest that condoms are appropriate only for those who “fail” at abstinence or marital fidelity and “choose to engage in high-risk sex”—contributing to an environment of shame and stigma which discourages the use of condoms even for sexually active youth and among adults with multiple, concurrent partners.6

Another example of HIV/AIDS policies turning their back on proven, evidence-based approaches that respect human rights is the restriction in the U.S. Global AIDS Act requiring that organizations receiving U.S. anti-AIDS funding have a policy “explicitly opposing prostitution” and barring the use of funds to “promote or advocate the legalization or practice of prostitution.”7 This approach recalls the efforts by Senator Jesse Helms in 1987 to block federal HIV/AIDS education funding to groups that “promote” homosexuality.

The U.S. requirements not only coerce organizations into adopting a particular ideology as a condition of receiving HIV/AIDS funding, but also negate the ability of outreach organizations to approach sex workers with the non-judgmental and non-moralistic attitude that has been shown to be effective with these communities. Empowering women marginalized in prostitution to participate in public life and to challenge the rights abuses that impede their struggle against HIV/AIDS has been a documented success in the efforts against AIDS. Far from addressing the harms associated with sex work, the U.S. requirements are likely to alienate sex workers and to fuel public opprobrium against them, further driving sex workers underground and away from life-saving services. In addition, the lack of guidance from the U.S. government regarding just what it means to “oppose prostitution” casts a shadow of uncertainty over HIV prevention programs and places a chilling effect on organizations wishing to conduct outreach and HIV prevention with sex workers in a respectful, non-judgmental manner.8

U.S. restrictions on needle exchange and other “harm reduction” programs and U.S. law enforcement interference with grassroots HIV prevention work are additional examples of the disastrous effect of replacing science-based approaches with narrowly defined moralistic ones.9 The sharing of hypodermic syringes accounts for the majority of new HIV infections in much of Eastern Europe, Central and Southeast Asia, and Latin America: needle exchange programs are a matter of life and death. Needle exchange programs, moreover, are perhaps the best studied HIV prevention intervention in the world. Rigorous evaluations consistently show that providing sterile syringes and information about sterile drug injection to people who use drugs reduces HIV risk without increasing rates of drug use.10 Although the effectiveness of sterile syringe programs has been endorsed by the World Health Organization, the Joint United Nations Program on HIV/AIDS, the U.S. National Institutes of Health, the U.S. Institute of Medicine, and other leading public health bodies,11 the United States remains the only country in the world to ban the use of federal funds for needle exchange. Recently, it has begun to aggressively export this standard internationally.

The U.S. has blocked resolutions at the United Nations that would recognize the human rights of injection drug users;12 sought to obstruct the work of UNAIDS and the U.N. Office on Drugs and Crime in promoting harm reduction and needle exchange in countries hard-hit by HIV/AIDS;13 and encouraged national governments to adopt criminal law approaches to drug use rather than recognizing that epidemics of drug addiction and HIV/AIDS are public health threats requiring humane, rights-based responses.14

With the expanded resources now available for HIV/AIDS, it is finally possible to imagine HIV treatment programs joining HIV prevention efforts in an integrated, rights-respecting continuum of services. Unfortunately, moralistic approaches to HIV prevention which place new obstacles in the way of reaching populations that most need information and services hinder such a comprehensive approach. Restrictive and moralistic U.S. policies also endanger one of the most ardently promoted and potentially life-saving approaches to HIV prevention and treatment: expanded HIV testing.

Expanding access to HIV testing is a critically important step in improving responses to the epidemic. When accompanied by effective counseling and accessible post-test services—including comprehensive prevention (information and condoms) and treatment and care—expanded HIV testing can encourage more people to protect themselves and their partners, and to seek care which can prolong their lives.

Expanded HIV testing can take many forms, however. It is all too common for HIV testing to be mandatory for certain populations—prisoners and military recruits, for example. In many countries, moreover, even HIV testing outside such institutional settings is sometimes conducted without consent and test results sometimes are not given to the person who was tested.

In medical settings, two different approaches have recently been promoted: “routine offer” HIV testing—with an “opt-in” emphasis—proposes that every individual in the health care setting be offered an HIV test. By contrast, “opt-out” HIV testing attempts to increase the number of individuals consenting to an HIV test by requiring that individuals be tested unless they specifically decline the test. In some settings, protocols require individuals to decline the test three times before their refusal is accepted, and before they are entitled to receive medical care.

The newest approach to expanded HIV testing, however, goes beyond these approaches by seeking to bring HIV tests out of the medical setting and into communities. On December 1, 2005, the Ministry of Health of Lesotho and the WHO announced an unprecedented effort in the fight against HIV/AIDS: a village-to-village campaign to test every Mosotho (resident of Lesotho) aged twelve and older for HIV by the end of 2007.15 This program was launched in Lesotho because it has one of the highest HIV prevalence rates in the world, with approximately one in three adults infected. With Lesotho facing a projected massive population loss from migration as well as mortality and a decrease in life expectancy from fifty-two to thirty-four years between 2000 and 2005, observers fear that Lesotho will collapse and fail—the first country to “die” of AIDS.

Village-to-village HIV testing recalls the great public health campaigns of thirty years ago, such as the worldwide eradication of smallpox through case detection, isolation, and mass vaccination. Because of the inextricable link between HIV/AIDS and human rights abuse, however, this method of HIV testing also carries the potential for spreading stigma and, with it, discrimination and other human rights violations. HIV/AIDS, a disease with a long and silent incubation period, with transmission caused by intensely personal behaviors (sex, childbirth, drug use), and with disproportionate prevalence among the most marginalized populations in society, is strikingly different from smallpox, and must be treated as such.

Historically, the largest concerns around HIV testing were ensuring that testing was voluntary, that it was confidential, and that adequate counseling was provided. These concerns were of primary importance in a context where few resources existed for people who tested positive, and where people believed to be living with HIV/AIDS faced serious and often life-threatening violence and abuse (women facing domestic violence as well as MSM and marginalized populations generally). It was hoped that if individuals learned their HIV serostatus, they would adopt behaviors that would either reduce their risk of infection if they were HIV-negative, or reduce the risk that they would transmit the virus to others if they were HIV-positive. In some cases, where counseling was adequate, and decisions were truly voluntary, these programs were shown to work.16

In the past few years, as significant resources have been committed to expanding access to anti-retroviral drugs throughout the world, treatment that can alleviate suffering and postpone death has become a real possibility for hundreds of thousands of people living with AIDS. In this context, HIV testing has become increasingly critical to expanding access to treatment, and, in turn, is helping to transform HIV/AIDS from a death sentence to a manageable chronic disease. These changes have led to a justified re-evaluation of HIV testing principles, and have led many people in the public health community to push for a different approach.17 Specifically, they emphasize the “right” to know one’s HIV serostatus and have called for dramatic increases in the numbers of people tested.

But much of the call for this type of expanded approach rests upon two assumptions: 1) that mass HIV testing will lead to positive changes as people change their behaviors and seek treatment; and 2) that few human rights abuses will result from this approach. There is little evidence to support these assumptions.

Studies in sub-Saharan Africa have found between 3.5 percent and 14.6 percent of women report abuse following the disclosure of their HIV test result. The highest rates of negative outcomes have been reported by women tested in antenatal clinics, and the lowest rates by women tested at voluntary counseling and testing sites. Women who are tested at antenatal clinic sites do not have a chance to think about testing or prepare themselves or their partners for testing. Therefore they are both less likely to disclose results to their partners and also are more likely to be victims of violence when they do.

The Lesotho operational plan for universal access to HIV testing states that “every household will be offered an HIV test” and that “communities will choose how HIV testing and counseling will be carried out for [their] members.” Independent oversight “to guarantee the rights of community members” will be provided by a three-person committee in each health center catchment area, with each center providing “at least a biannual written report.” The government is also creating a national telephone hotline.18

Public health officials argue that it is unfair to criticize the lack of evidence in support of village-to-village testing in light of the public health crisis facing Lesotho. That argument would be justified if this were the only approach available. But it is not. The other available alternative—concerted, large-scale promotion of voluntary HIV counseling and testing—has not been tried.

The Lesotho plan will only be as successful as the government’s ability to get people to participate, as well as its ability to provide comprehensive HIV prevention information and necessary medicines. However, without better protections for human rights and without concerted efforts to reduce the stigma of HIV/AIDS within Lesotho, there is little hope for widespread, truly voluntary participation. Even if large numbers of people are tested, the Lesotho plan allocates only 3,000 Maloti (U.S.$465) out of a total of 75,593,250 Maloti (U.S.$11.7 million) to support post-test referrals and services.19

The Lesotho plan, like many calls for expanded HIV testing, focuses almost exclusively on individual behavior change and does not adequately take into account the structural barriers—violence, abuse, and interference with lifesaving information and services—that prevent individuals most vulnerable to infection from taking measures to reduce their HIV risk.

Efforts to expand HIV testing should not put public health experts on one side and human rights proponents on the other. Both recognize that people have a right of access to HIV testing as part of the broader right to health care enshrined in the International Covenant on Economic, Social, and Cultural Rights. Informed consent and confidentiality requirements, protections against violence and discrimination, and measures to combat stigma need not be barriers to expanded HIV testing.

The 1984 Siracusa Principles on the Limitation and Derogation of Principles in the International Covenant on Civil and Political Rights, moreover, illustrate that, where there is a perceived conflict between critical public health needs and human rights imperatives, governments should proceed rationally and deliberately. Public health policies can infringe rights if they are sanctioned by law, serve a legitimate public health goal, are necessary to achieve that goal, are no more intrusive or restrictive than necessary, and are non-discriminatory in application. The International Guidelines on HIV/AIDS and Human Rights, issued as non-binding policy guidance to governments by the Office of the High Commissioner for Human Rights (OHCHR) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) in 1996, affirm that HIV testing of individuals “should only be performed with the specific informed consent of that individual” except where specific judicial authorization is granted to perform a mandatory test.

Too often, expanded HIV testing programs forget their goal is not simply to get a large number of people tested once. “Knowing your HIV status” is a dynamic issue with repeat testing required, as adolescents become adults, as an individual’s behavior (and risk) changes, or (as is especially true for women and girls in many parts of the world) as their own behavior stays the same but their partner’s behavior changes. Mass HIV testing programs may be able to test large numbers of people once, but only programs that protect individual rights will encourage people to seek follow-up treatment services and help people reduce their risk behaviors and their vulnerability to HIV infection over time.

<<previous  |  index  |  next>>January 2006