From its inception, the AIDS pandemic has generated extraordinary expressions of sadness and anger. The sadness is easy to understand. The disease kills young men and women and the newborns of infected parents. Some of the poorest and most vulnerable people have become infected and then infected friends and strangers. The anger, too, was there from the start. It could be heard in the chants and demands of ACT UP protesters as they picketed the FDA; it could be seen in the faces of dying mothers who did not have kin to care for their children about to be orphaned. As the numbers of people infected with the disease continues to rise, the sadness and the anger persist.
Science has not lived up to our grandiose expectations. Although combinations of antiretroviral drugs now extend the lives of many people with AIDS, we still lack treatments that would eliminate the virus and an effective vaccine that would protect against the disease. But whatever the shortcomings of science, they are more than matched by those of public health officials and policy-makers. Strategies to alter behavior to prevent the spread of the disease have proved only sporadically effective. Decades later, millions of people who are HIV-positive do not have access to treatment and do not know how to protect themselves; many are not even aware they are carriers of the disease.
Starting from these dismal facts in their new books on the AIDS crisis, Jacob Levenson, Greg Behrman and Lawrence Gostin all try to explain why, despite its considerable resources and expertise, the United States has done such a poor job of containing and treating the disease both at home and abroad. Levenson, a freelance journalist and grantee of the Open Society Institute, wants to understand why so many black Americans are dying of AIDS. Behrman, a staff member of the Council on Foreign Relations, wants to understand why we have not been able to devise and “implement a comprehensive global response that would reduce the death rate from AIDS in the developing world.” Gostin, a professor of law and public health who has written for almost twenty years on AIDS policy, has brought together his many essays in an effort to understand past failures and future possibilities. The United States, the authors believe, has the skills and the resources to meet the challenge of AIDS and to extend the lives of the world’s poorest and most vulnerable citizens. That we have not done so, they argue, reflects our selfishness and prejudices–a charge that cannot be easily dismissed.
Levenson’s Secret Epidemic investigates why a disease initially identified with gay white men is now devastating minority communities. Blacks were always disproportionately represented among people with AIDS, but never to the current degree. Blacks are ten times more likely to die of AIDS than whites. In 2002, 54 percent of all new HIV cases were African-Americans; 58 percent of all women with AIDS and 59 percent of all children with AIDS were African-Americans. AIDS is the leading cause of death among African-American men between the ages of 25 and 44.
Levenson initially sought his answers from policy-makers and epidemiologists. When he found their responses “abstract, tired and far away,” he decided to adopt a more intimate approach, that is, to understand the causes and implications of the rising incidence by capturing “the inner experience of the black AIDS epidemic.” But then he worried that this perspective might lead him to write “more about race than disease.” As he saw it, the concept of “race is confusing,” and he did not want to ascribe to racism the many policy failures that affect black Americans with HIV/AIDS. So he went out and conducted extensive interviews with people afflicted with AIDS, both in urban centers (Harlem, San Francisco) and rural areas (especially Alabama). He spoke to families, social workers, black gay activists and public health researchers to understand how the epidemiology of the disease interacted with poverty and social inequality.
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Levenson’s conversations with public health physicians and AIDS activists make clear that whites and blacks were both ambivalent about earmarking special funds for minority AIDS programs, fearful of identifying such groups with a stigmatized and deadly disease. Levenson is at his best when he illuminates an unrecognized aspect of the pandemic, namely the South’s emergence as “the new frontier of AIDS in America.” With the help of a social worker whose job it is to identify HIV-positive Alabamians and to assist them in getting medications, Levenson met two African-American teenagers who lived with their own mother and their baby sons in a trailer in rural Alabama. The girls, who were still in school, learned that they had the disease from perfunctory letters sent by the health department. Their blood donations were not accepted because they were “contaminated with HIV.”
The social worker did manage to get them some antiretrovirals–Levenson saw many bottles of pills in the cabinet–but they were sealed. Left to their own devices, the girls made up their own regimen. They hoarded the medications because it seemed easier to get drugs when they were pregnant than afterward. They shared pills (it is unclear precisely how or why). They gave some to their boyfriends “just to be safe.” Their regimen may appear pragmatic, but it is an infectious-disease expert’s nightmare, certain to increase drug resistance and decrease efficacy. Along with the public policies of Alabama’s Department of Health, it helps explain why the epidemic has proliferated in the South.
Rural Alabama has become a “tinderbox for an AIDS epidemic,” writes Levenson. The state has very high rates of sexually transmitted diseases, of teenage pregnancies and of crack use. Small-town residents are also prone to share sexual partners. All the while, treatment is a sometime thing. The state’s combination of strict eligibility criteria for Medicaid and its restrictions in funding for AIDS care means that in Alabama, more than in most states, a primitive healthcare delivery system goes along with poor monitoring and haphazard delivery of essential medicines. Some of the poorest and most vulnerable residents are on lengthy waiting lists for HIV/AIDS drugs and may die before treatment begins.
As deplorable as the plight of HIV-positive blacks in Alabama is, the situation is far from unique. Of the almost 1 million Americans who have HIV/AIDS, roughly 50 percent are not receiving medical care. Although the majority of those diagnosed with HIV/AIDS are covered by insurance (more often Medicaid than private insurance), another 20 percent are uninsured or have only very limited coverage. To be sure, the 1990 federal Ryan White CARE Act tried to create a safety net, and the AIDS Drug Assistance Programs (ADAP) sought to get drugs to the uninsured. But the ADAP has a limited budget and has not been able to negotiate deep-enough discounts from pharmaceutical companies. The result is that 1,500 people are on state waiting lists.
Levenson effectively traces the impact of the epidemic on the most vulnerable people, but he does not offer anything in the way of policy recommendations. Others do. An Institute of Medicine report incorporated the findings of a report by the Kaiser Family Foundation that described our current financing of HIV/AIDS care as “a quilt with many holes.” To fill these holes, the Institute of Medicine, a private nonprofit associated with the National Academy of Sciences, proposed that Washington create a federally funded, state-administered, comprehensive care program. Whether anyone will begin to advocate effectively for these changes now that more victims are black rural Americans remains to be seen.
Given our dismal record in controlling the national epidemic, it’s not surprising that we have also failed to provide international leadership. Greg Behrman’s Invisible People explores why the United States has not implemented comprehensive policies to contain the global disease. His subtitle reflects his anger and frustration: How the U.S. Has Slept Through the Global AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time. Behrman, too, relies on interviews, turning to officials at the Centers for Disease Control and Prevention (CDC) and United States Agency for International Development (USAID), political figures in the former Clinton Administration, key ambassadors and leaders in the World Health Organization. The roster is something of a who’s who of AIDS policy-makers, and Behrman makes effective use of his sources.
He starts with the CDC. If an epidemic occurs in the developing world, the CDC investigates it, because “it behooved the U.S. scientific community to know about it so that they would be…able to protect the U.S. population at home and abroad.” But since the CDC has no “international surveillance responsibility,” intervention is “not a mandatory responsibility.” It will investigate a sudden outbreak of a disease (Legionnaire’s in the United States, Ebola in Africa), track the agent and propose prevention and treatment strategies (quarantine, water-tank purification, etc.). Indeed, the CDC was among the first to grasp the threat of AIDS to Africa and gave technical assistance to colleagues there. But it is not in a position to implement prevention policies, let alone deliver treatment.
Behrman looks next at USAID. In 1986 the agency established a division of HIV/AIDS to consider global policies. But its cautious leaders kept a low profile, owing to a less than hospitable climate in Washington. The tone was set by President Reagan, who was reluctant to use the very term “AIDS” and wanted to prevent foreigners with AIDS from entering the country. As former Surgeon General C. Everett Koop explained to Behrman, Republican officials in the first decade of the pandemic viewed global AIDS as “something over there.” According to Koop, the prevailing sentiment was: “If we’re not going to worry about it in this country, why should we worry about a bunch of black people over there who have the same thing?” Thus, when USAID funded nongovernmental agencies that distributed condoms, it did not publicize the information; it was equally discreet about its support of gay not-for-profits in Latin America, which “would have curled conservatives’ hair.”
During the Clinton Administration the FDA speeded up approval of AIDS drugs and worked to make antiretrovirals more available in urban areas, but that Administration, too, was primarily concerned with containing the domestic epidemic, and it was under little pressure to change. It was not pressed either by domestic NGOs or leaders in the developing world. “With rare exception,” Behrman writes, the Administration “oscillated between denial and the ‘ostrich’ approach.”
Behrman predicts that the United States will assume a leadership role. He cites the 2003 initiative of the Bush Administration, which authorized the government to spend up to $15 billion for the prevention and treatment of global AIDS. But his optimism may be misplaced. Some money is being spent, but the initiative is moving very slowly. At least part of the reason is US pharmaceutical companies. They worry, for example, that were government funds to be used to buy fixed-dose antiretroviral drugs manufactured in Brazil or India–which would be in the best interest of African patients–their intellectual property rights and profits might suffer. Their role notwithstanding, it is difficult to imagine that an Administration so inept at global alliances is going to take a lead in fighting a global disease.
Lawrence Gostin reaches a similarly bleak set of conclusions in The AIDS Pandemic, a collection of essays on the legal, ethical and political controversies raised by the disease. The history of AIDS policy, he writes, has moved from “denial, blame and punishment” to “complacency, injustice and unfulfilled expectations.” The only hopeful elements emerge in Gostin’s discussion of a few exemplary individuals, notably the late Jonathan Mann. In 1986 Mann founded the World Health Organization’s Global Program on AIDS. He was among the first to recognize that because the pandemic was affecting vulnerable populations, a comprehensive health policy had to be based on human rights principles. Mann resisted taking one side or the other in the classic public health dilemma of how to at once police for the public health and protect individual rights. Instead, Mann sought to advance both ends. “We live in a world threatened by unlimited destructive force,” he declared in 1988, “yet we share a vision of creative potential…. AIDS shows us once again that silence, exclusion, and isolation of individuals, groups, or nations, creates a danger for all us.” He argued that AIDS had to be openly discussed, even in countries with no tradition of free expression; at the same time, he insisted that the privacy of HIV-positive individuals, their right to work and live in the community, had to be protected. Mann’s goal, which Gostin shares, was to promote nondiscriminatory and transparent AIDS policies. We have yet to realize this agenda.
Some important efforts are under way. The persistent unwillingness of the United States to assume leadership has created a vacuum that a few national and international organizations are trying to fill. The Access to Essential Medicines Campaign, organized in 1999 by Médecins Sans Frontières (Doctors Without Borders), is providing a new approach premised on global interdependence. It has spearheaded a coalition to fight intellectual property laws by focusing on the provision that patent rights can be overridden in times of health emergencies. It has also collaborated with Indian pharmaceutical companies to deliver generic medicines to South African patients and is promoting the use of a three-in-one pill. It is devising methods to deliver medicines to patients when infectious-disease specialists are not to be found. When I visited its clinic in Cape Town’s Kayalisha township, I was handed a twenty-page booklet with elaborate protocols that would enable nurses to monitor delivery and care of complex antiretroviral drug regimens.
The premises of this global approach have begun to influence US foundations, if not public policy. The Bill and Melinda Gates Foundation and the Clinton Foundation have both assisted in the effort to provide essential medicines to populations that are at greatest risk. Their example may well have forced President Bush to pledge $15 billion. Perhaps their performance will compel him to pay less attention to the interests of US pharmaceutical companies and conservative opponents of condom distribution so that the funds may be used most effectively.