SCHWARZWALDER: AIDS programs help bureaucrats, not victims

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A few years ago, while serving as chief of staff to a congressman, I met with three people I likely will never forget. One was an adult male who had become infected by AIDS as a result of behavioral choices. The second was a little boy whose father had injected him with the AIDS virus so that, as a baby, he would die quickly, and the father could obtain the boy’s insurance money. The third person in the meeting was the boy’s weeping mother.

They had come to petition the member of Congress I served to support AIDS treatment. He spent roughly one hour with them before having to leave for other commitments, and I stayed with them for about an hour more. We listened to their stories and saw their pain, even desperation.

No one facing these broken people could be unmoved. AIDS is real: Close to 1.1 million Americans have the disease, and another 1.1 million are infected with HIV. With such staggering figures it is easy to lose sight of the fact that these numbers are composed of individuals - people with names, families, aspirations, jobs and communities, each with an inherent dignity and right to life. Like all fearsome diseases, AIDS is a story told one life at a time.

Yet, true to form, the federal government has created a vast bureaucracy to address HIV/AIDS research and treatment, one so extensive that it invites skepticism about its effectiveness, let alone fiscal efficiency. In tallying the various federal efforts listed on the official government home page (www.aids.gov), there are no fewer than 45 distinct research initiatives, departmental programs and Web sites devoted to HIV and AIDS.

The Department of Health and Human Services boasts 18 individual initiatives through the National Institutes of Health; an Office of HIV/AIDS within the office of the secretary, and individual offices for civil rights, minority health and women’s health.

HHS’s Substance Abuse and Mental Health Services Administration, Health Resources and Services Administration and Indian Health Services Administration all have their own programs. The FDA has four programs, and the Centers for Disease Control and Prevention has four as well.

Not to be outdone, both the State Department and Veterans Administration have two programs, and the White House has not only an Office of AIDS Policy, but also a formal Presidential Advisory Committee on AIDS.

In fiscal year 2005, total federal spending on all of its AIDS programs was $19.7 billion. Yet a mere four years later, President Obama requested nearly $26 billion for federal AIDS funding - a jump of more than 25 percent. This includes funds for the President’s Emergency Plan for AIDS Relief (PEPFAR), “the largest commitment by any nation to combat a single disease in history.”

These numbers do not include the state HIV/AIDS programs: All 50 states have their own HIV/AIDS offices, and there is even a National Alliance of State and Territorial AIDS Directors.

The private sector does its part, as well. Through such groups as the Gates Foundation and through the generosity of pharmaceutical companies (remember, they are not compelled to give away anything), millions of people at home and abroad are now receiving life-sustaining medications developed over the last 25 years.

In sum, the United States is spending a huge amount of money fighting HIV/AIDS through myriad programs, platforms and bureaucratic structures. The question that the federal AIDS bureaucracy invites, however, is why is it so large, distributed among so many departments and agencies and how much money could be saved and directed toward actual people if the programs were better coordinated and streamlined?

Consolidation might sound like a rather sterile word when one is considering the nature of the human suffering caused by AIDS. Yet by eliminating multiple programs that address the same problem, is it not self-apparent that we save funds on overhead that could be better devoted to research and treatment?

Some examples: Why does the Department of Labor’s Bureau of International Labor Affairs have an HIV/AIDS program when the Department of State has both a U.S. Global AIDS coordinator and a program within USAID to “oversee HIV/AIDS programs for the Department of State in over 100 countries”?

Why is there an AIDS programs within the FDA Office of Women’s Health, the HHS Office of Women’s Health and the National Women’s Health Information Center? Just how many women’s health AIDS programs do we need?

Why are there offices of AIDS policy in the White House and the Department of Health and Human Services?

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