Overcoming Political Impediments to Effective AIDS Policy

The policy messages of this report are not startling new findings. The call for preventing infections among people most likely to contract and spread the virus is a reiteration of arguments for the control of the sexually transmitted diseases that were already recognized 20 years ago (Brandt 1987). The warning that subsidizing AIDS treatment more generously than, say, cancer treatment endangers the quality and accessibility of health care for everyone is familiar from discussions of health sector reform (World Bank 1993c). The finding that the poorest households are most vulnerable to the shock of an AIDS death is consistent with previous work demonstrating that poor households have difficulty weathering other kinds of shocks. The conclusion that “survivor assistance” provided by the government or NGOs should be targeted to the poorest AIDS-affected households follows logically. The advantages of decentralizing and privatizing government service programs are well established. At the level of international public goods, the need for better knowledge and technology for developing countries has been glaringly apparent for years.

If these messages are familiar, why are they not being followed in countries around the world? The answers clearly lie outside the technical discussions that have occupied this book so far and fall instead into the domain of political science, a less-developed discipline than either epidemiology or economics, with fewer guiding principles. However, the examples of countries that have achieved modest success in confronting AIDS suggest some lessons.

Interest Groups and AIDS Policy

Many groups with divergent interests affect the design and implementation of HIV/AIDS policy, and the mix of groups and their relative strength changes over the course of the epidemic. At the outset, few groups are concerned. However, as the epidemic progresses, the number of interest groups increases and the politics of AIDS becomes ever more complex.

Early in the epidemic, physicians and medical suppliers have an interest in learning how to treat AIDS and how to protect the safety of health care workers from needle sticks and other accidental infection on the job. A group that emerges at about the same time is people infected with HIV. Although the number of these individuals is initially small, and they may at the outset lack political influence, they are often highly motivated to lobby government, since their very lives may depend on persuading the government to subsidize AIDS treatment and care. As the epidemic spreads, the size of this group and its potential to influence government policy increase. Often overlapping with this group are individuals who practice high-risk behavior but who are not infected—or hope they are not infected. Although these people have a strong interest in government-subsidized prevention for themselves, in the early stages of the epidemic they are rarely well organized enough to lobby on their own behalf. Yet increasingly the AIDS epidemic has induced people with the highest risk behavior to organize in order to promote their interests. Furthermore, NGOs working on HIV prevention and AIDS care become advocates for the populations they serve. Finally, as the number of AIDS cases increases, insurance providers and employers will become concerned about rising health care costs and increased sickness and death among employees.

At all stages of the epidemic, the largest interest group is the one least motivated to learn about the issues or lobby on its own behalf: the general public of HIV-negative individuals who rarely practice risky behavior. Like most of those with riskier behavior, these people at low risk have an interest in marriage, in conceiving and raising healthy children, and in seeing them married, all without the risk of HIV infection. Although not themselves suffering from AIDS, in a generalized epidemic these people find that the price of health care has greatly increased because of higher demand and increased costs. Some of these people are the poor who have never suffered an HIV infection or death but nevertheless need help in order to escape poverty. Some suffer dangerous chronic diseases other than HIV, such as cancer, kidney disease or diabetes, and cannot afford the treatment to keep themselves alive.

To be truly democratic, a society must find ways—for example, opinion polls or elections—for the many with a small interest in an issue to express their views inexpensively and influence the course of events. Politicians facing a ballot box have an incentive to seek the opinions of ordinary people and consider these together with the views of smaller, more vocal interest groups. A government that is responsive to the nation’s political leadership will follow suit.

However, in the case of HIV/AIDS, the policies that will best protect the average citizen are not necessarily popular. Politicians and government officials, who may themselves be unsure of the best policies for confronting the epidemic, have the difficult task of explaining to the public why taxes should be spent subsidizing condoms and STD treatment for prostitutes and clean needles for injecting drug users. Conservative social and religious groups, perhaps not fully appreciating the great harm that can arise from failing to prevent the spread of HIV, may oppose efforts to reduce the risks involved in commercial sex or injecting drug use, or to encourage condom use generally, out of concern that these efforts will encourage behavior they regard as immoral. Business interests, having immediate profits in mind, may apply the kind of pressure to government that was dramatized in Henrik Ibsen’s 1883 play An Enemy of the People: a physician who discovers that his Norwegian town’s polluted public baths are a threat to tourists’ health is pressured to keep silent by the democratically elected mayor and his supporters, and ultimately declared to be an “enemy of the people” himself.

Mexico and Thailand offer two dramatic examples of AIDS policymaking in the midst of all these conflicting pressures. The former coordinator of Mexico’s National Committee for the Prevention and Control of AIDS (CONASIDA), Dr. Jaime Sepulveda, has summarized the responses of government, NGOs and mass media during three periods from 1985 to 1992 (Sepulveda 1992). As shown in table 5.3, the government response evolved from “erratic and medicalized” in 1985–86 to “reactive and participatory” in 1989–92. Strikingly, organizations of homosexual and bisexual men and liberal NGOs were initially silent and then actively opposed to the AIDS control program. Through continued efforts to engage these interest groups, government policymakers eventually won them over; by the third period they were active participants in carrying out prevention programs. Meanwhile, Pro-Vida, a conservative religious group, and other right-wing organizations became increasingly outspoken, if ultimately ineffective, in their opposition.

Sepulveda includes the mass media among the actors in the shaping of Mexican AIDS policy, but he describes their role as only occasionally helpful. As late as 1992 he characterizes media coverage as continuing to focus on the number of AIDS cases, while neglecting other crucial information about the disease: “In spite of the constant presence of information about AIDS in the mass media, specific aspects of the disease are not addressed so that collective accurate knowledge about AIDS is not generated nor is participatory discussion promoted.” He points out that television and radio do a somewhat better job than print media, sometimes using live programs with interviews, phone-in questions, and audience participation to generate discussion (Sepulveda 1992, p. 143). However, he concludes that, by the third period covered in the table, the media have passed from “alarm” to “fatigue” without ever providing the information that the public needs to understand the epidemic.

An authoritative case study of Thailand highlights other political problems that can arise in designing and implementing an effective response. In the second half of the 1980s, as evidence that HIV was spreading rapidly among Thai sex workers and injecting drug users accumulated, a government official insisted that the situation was under control: “The general public need not be alarmed. Thai-to-Thai transmission is not in evidence.” In keeping with this sanguine view, the government spent only $180,000 on HIV prevention in 1988 (the GPA committed $500,000 to Thailand that same year). The study suggests that during this period of democratic rule, in a pattern reminiscent of that described by Ibsen in Norway 100 years before, “high-level cabinet pressure was brought to bear on the ministry of public health not to publicize the emergence of increasing HIV in the population” (Porapakkham and others 1996, p. 8).

Although Thai national funding increased to $2.6 million by 1990 (and donor funding reached $3.4 million), the government did not initiate a high-profile, aggressive campaign to control HIV until 1991–92, when the country was led by Premier Anand Panyarachun, who had been appointed by the leaders of a military coup. The new prime minister took several important steps that have since been credited with helping to slow and perhaps reverse the epidemic in Thailand. First, he shifted control of the AIDS control program out of the Ministry of Public Health to the Office of the Prime Minister, giving it added political clout. Second, he increased the budget almost 20-fold, to $44 million in 1993. Perhaps most important, he initiated the “100 percent condom program” focused on brothels, as described in chapter 3. Since then Thai funding to AIDS control has continued to increase, reaching more than $80 million in 1996, a sum equivalent to more than one-quarter of the entire international donor commitment to AIDS control in developing countries that year.

The high-profile campaign was initially unpopular with the influential tourism industry, and tourism indeed temporarily declined. However, once AIDS had a prominent place on the national agenda, opposition to the measures gradually faded—and support increased. “There were too many vested interests in maintaining the high status of the national AIDS program to make a policy reversal,” the case study noted. “In particular, the enormous budget allocated to the HIV/AIDS prevention and control campaign was vigorously coveted by a wide-range of participants” (Porapakkham and others 1996, p. 17). Thus, the policy situation in Thailand had come full circle, from one in which special interest groups used their influence to oppose a vigorous prevention policy, to one in which the participants in the prevention program assumed the role of vested interests in sustaining it. Since all programs that involve significant public expenditure develop their own constituencies, policymakers must be careful at the outset to initiate programs that are in the interest of the general public, as appears to have been the case in Mexico and Thailand.

Donor Assistance and Public Consensus

Although the politics of AIDS will differ greatly across countries, bilateral donors and multilateral organizations can help to encourage public consensus on effective, low-cost responses to HIV through direct funding and through a judicious use of encouragement and conditionality. For countries that are still in the nascent stage, where citizens are not sufficiently aware of the epidemic to support funding activities from public revenue, donor funding can be critical in gathering surveillance data or establishing a demonstration project. Sometimes donors can require certain actions as a condition of the receipt of an aid package. However, the leverage afforded by conditionality is often quite limited and may depend on all donors agreeing to the desirability of a given condition. Conditionality is more likely to work if the government (or important elements of it) intends to carry out the action in any case but has not yet made it high enough priority to get it accomplished.

One example of the effective application of conditionality occurred during negotiations of the $84 million World Bank loan to India. In 1991 the government’s initial posture was that there was no need for specific interventions with sex workers and their clients in Indian cities. One influential government figure asserted that “in India AIDS is not sexually transmitted.” As a result of a position taken jointly by GPA and the World Bank, the government of India agreed to double the size of its proposed AIDS program to include interventions with those most likely to contract and spread HIV, to be implemented by NGOs. Since then the extent of the sexually transmitted AIDS epidemic in India has become obvious to the highest levels of government, as evidenced in a 1997 speech by Prime Minister Deva Gowda. Attention has turned from whether interventions with those who practice the riskiest behavior are necessary to how best to implement them.

These instances suggest that donors can significantly improve the timing and quality of country-level responses to HIV/AIDS. However, the evidence cited in chapter 3 and earlier in this chapter suggests that donors have often waited until AIDS has moved beyond the nascent stage before providing support. Although the data suggest that multilateral institutions are more likely than bilateral donors to direct resources to countries at the concentrated stage of the epidemic, neither supports countries sufficiently at the nascent stage, when the largest benefits can be achieved with the smallest expenditure. We return to this issue in the policy recommendations in chapter 6.

Individuals Who Make a Difference

Although this chapter, and indeed most of the book, has focused almost exclusively on national governments, donors, or groups, sometimes a courageous individual changes the way an entire nation or society thinks about HIV/AIDS, opening the way for a more effective and compassionate response. These individuals may be national political leaders or other well-known figures, such as athletes or movie stars, who are not themselves infected. Or they may be individuals, famous or not, who are infected with HIV and summon the strength and courage to serve as advocates for a sound national response.

Examples of such individuals in the industrial countries are known worldwide. Actress Elizabeth Taylor has made fundraising for AIDS a nearly full-time occupation. Others, such as the late Princess Diana of Britain, have reduced prejudice and fear simply by being photographed embracing a child with AIDS. Among U.S. athletes, diver Greg Louganis, the late tennis star Arthur Ashe, and basketball’s Magic Johnson have each helped to raise awareness of the disease by coming forward with the news of their infection.

But while these figures are widely known and often admired around the world, the fact that they are from industrial countries means that their high-profile activities have only a limited ability to overcome denial in developing countries. People in a poor country learning that a movie star or athlete in a rich country has become infected may continue to think, “It can’t happen here”—even though 90 percent of HIV infections occur in developing countries. Because of this, every country and all societies need local individuals with the courage to advocate an effective response to HIV/AIDS. Where such individuals have stepped forward, their efforts have often had a significant positive impact on public awareness and attitudes.

Fortunately, as the understanding of the epidemic increases, a growing number of individuals in developing countries are demonstrating such leadership. To mention just three examples: the speech by Indian Prime Minister Deve Gowda naming HIV/AIDS as a national health problem helped to overcome the idea that India was somehow not threatened by the virus. Zambian President Kenneth Kaunda, in acknowledging publicly that his son had died of AIDS, helped to energize his country’s response to the ravages of a widespread epidemic. Finally, Marina Mahathir, daughter of Malaysian Prime Minister Mahathir Mohamad and the president of the Malaysian AIDS Council, a nongovernmental organization, has spoken out in her own country and internationally for greater political commitment to mobilizing the resources necessary for effective prevention.

Some of the most compelling advocates of an effective response to the epidemic are people who are themselves infected with HIV. Philly Lutaaya, an enormously popular Ugandan singer and songwriter, became the first prominent African to acknowledge that he was infected with HIV. He spent his remaining healthy time writing songs about his battle with AIDS and touring churches and schools throughout Uganda to spread a message of prevention and hope. After Lutaaya’s death at age 38, the Philly Lutaaya Initiative continued his work. With assistance from UNICEF, the Initiative sponsors lectures in schools and communities across Uganda highlighting personal testimonials of hundreds of people infected with HIV. A 90-minute television documentary on Lutaaya’s struggle with AIDS released in 1990 reached millions of television viewers around the world (Graham 1990, Kogan 1990, McBrier 1995).

But a person need not be a celebrity prior to infection for personal testimony to have a powerful impact. Perhaps the most courageous individuals are otherwise ordinary people who, after becoming infected, step forward to acknowledge their disease and, in the face of discrimination and persecution and with very limited personal financial resources to draw upon, speak out for a more effective public response. All these individuals serve as a powerful example to those who meet them, a few become nationally known. Box 5.5 describes how one such individual, a factory watchman, raised awareness about HIV/AIDS in Thailand.

This chapter has analyzed the roles of governments, donors, and NGOs in financing and implementing effective policy responses to HIV. It has argued that each of these types of organizations has particular strengths and that for an effective global response to HIV/AIDS, all of these groups, plus countless exemplary individuals, must work toward a common goal of overcoming the epidemic.

As the chapter relates, much has already been done; yet the analysis also identified some key shortcomings. Governments have the unique responsibility for coordinating their country’s overall response to the epidemic. As part of that responsibility, many governments, especially in developing countries, should take on greater responsibility for basic epidemiological surveillance and prevention activities. NGOs have often played an important role in prodding governments into action; governments that select appropriate NGO partners can often greatly increase their reach, especially in working with marginalized groups to help people who practice the riskiest behavior to protect themselves and others. Donors and the multilateral institutions they support have provided significant financing and other assistance for all of these efforts. But donors need to do a better job of focusing attention and resources on countries where the epidemic has yet to attract policymakers’ attention, especially countries with nascent epidemics, where prevention is most cost-effective. Moreover, international donors have the unique ability to mobilize financing and other support for international public goods, such as evaluation of alternative approaches to preventing HIV and mitigating the impact of AIDS, as well as research on a vaccine that would work in developing countries. Such efforts are in the donors’ own best interest, as well as the interest of developing countries, and deserve much greater attention and support. Finally, donors have the responsibility to coordinate their activities at the country level, both among themselves and with the national government.

Although there are no easy solutions to the technical and political problems posed by the HIV/AIDS epidemic, examples from countries around the world offer hope that people of good will, working together, can overcome this global epidemic.

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