A Calculus of Need: Funding AIDS Research & Care

Article excerpt

When a large, cohesive, well-connected activist group decides to embrace a cause, the sociopolitical status of the cause changes. Funds are raised; the media take notice; the public reacts; politicians listen. Witness AIDS and breast cancer. Red and pink ribbons are de rigueur, feature stories are common, and with greater-than-usual ceremony, private industry pledges support and politicians announce new funding for research, treatment, and care.

Although AIDS and breast cancer share a spotlight, the reaction of a large segment of the public to those who suffer from the diseases is quite different. To many Americans, people with AIDS (PWAs) personify the degenerate state of society; yet care for PWAs is supported by public funds. Even some sympathetic individuals have become uncomfortable with what they now see as a disproportion in the financial support available to PWAs. There are rumblings of a reaction against the intense public focus on AIDS. (None of this is true of breast cancer.)

Perhaps perceiving an imminent reversal of fortune, individual AIDS advocacy groups, with divergent agendas, have begun to compete with each other for bigger slices of the funding pie. Last year, for example, Martin Delaney, a California AIDS activist, was quoted in the New York Times (November 12, 1997) condemning the "exceptional" status claimed for AIDS: "Why do people with AIDS get funding for primary medical care? There are certainly other life-threatening diseases out there. Some of them kill a lot more people than AIDS does." Delaney favored replacing separate programs for AIDS with a national (universal) health-care system. But in the meanwhile, he seriously challenged the morality of a public policy that gives special attention to AIDS, a challenge that questions the validity of at least some AIDS programs, regardless of the availability of a substitute system.

A second Times article ("New Studies Offer Hope and Caution on AIDS Therapies," November 14, 1997) highlighted new medications that seem to have turned AIDS from an inevitably fatal affliction to a manageable chronic disease. More recently, another Times article ("Wave of Laws Aimed at People with H.I.V.," September 25, 1998) noted a "backlash" among legislators across the country who have come to believe that "we have been soft on the epidemic" and that society now needs "to get tough on people with AIDS." One way of getting tough is to cut funding.

People who write about AIDS ought to begin by revealing their own qualifications, biases, and potentially gored oxen. Herewith the relevant facts of my own situation: I am neither HIV positive (the precursor of AIDS) nor a member of any HIV risk group. On the other hand, within the past year I have undergone treatments for another deadly disease prostate cancer. My medical condition apart, my strong and frequently expressed public opposition to legalized abortion, euthanasia, and homosexual practices makes me an avowed moral conservative. So conventional wisdom would seem to put me in sympathy with arguments that favor eliminating support for PWAs. I am not.

Although I do not have AIDS, it has become a significant part of my life. I volunteer on the AIDS ward of two hospitals. Frequently, the hospital visits lead to follow-up visits to nursing homes. I now spend parts of at least three and as many as six days a week with AIDS patients. I have been doing this for more than three years. During that time, I have lost to the disease people whom I truly came to care about--and grieve for. Few volunteers are able to avoid such emotional involvement. With all this baggage in hand, let me now offer a few comments.

* First: Besides AIDS, another dangerous virus plagues the land. Those whom it infects teach that because some people have advantages that the rest don't, no one should have them. In context, it translates: We spend more on AIDS than on some other deadly diseases; therefore, spend less on AIDS! …