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.