A calculus of need: funding AIDS research & care.

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! Even my disease is a bigger killer than AIDS. Prostate cancer kills forty thousand men every year in the United States. Currently, these deaths exceed deaths from AIDS by more than a third. Should I now lobby for less money for AIDS? Were I to do so, then according to the principles of traditional Roman Catholicism to which I subscribe, I would be guilty of the capital sin of envy, which "wishes grave harm to a neighbor [on account of] displeasure caused by his prosperity" (see the Catechism of the Catholic Church). But then one need not be a Catholic to recognize how mortally and morally perverse this political virus really is.

Of course, not everyone who argues for reductions in AIDS funding and programs is ill-motivated. Some genuinely believe that the money may better be spent elsewhere for what they perceive to be a greater need. But anyone familiar with welfare programs knows that things don't work that way. Money cut from a program typically is not diverted elsewhere. It simply becomes a politically advantageous "cut in spending." Even if it were diverted, it would more likely follow greater influence than greater need. Besides, a triage system of funding would not seem to be a salutary approach to conquering deadly diseases.

Also to be distinguished from the envious are those who advocate a national health-care system that would fairly and adequately encompass all diseases. Whether or not such a system is feasible or desirable is not at issue here. What is at issue is the cynicism of those who campaign for it by creating resentment against special programs for PWAs. They may not be among the envious, but they feed the envy of others.

* Second: If, as some say, AIDS is not "exceptional," it is at least different. AIDS is a virus, an infectious plague. (I did not "catch" prostate cancer.) Viral plagues require focused attention because viruses have a way of circumventing the defenses we erect against them. And AIDS is particularly complex. I may die of metastasizing cancer. PWAs do not die of AIDS; they die of one or more of the twenty-six opportunistic diseases--ranging from cancer to pneumonia to multidrug-resistant WB--that take advantage of damaged immune systems. And those who die are young. In 1995, two-thirds of those who died of AIDs-related infections were under forty years of age. Ninety percent were under fifty. AIDS infections kill more African-Americans between the ages of twenty-five and forty-four than any other disease.

* Third: Families and friends typically rally around people with conventional diseases. They often abandon PWAs. Many in society stigmatize AIDS patients, a number of whom react with feelings of guilt. The subverted self-esteem, isolation, and depression of many PWAs may be as much a part of AIDS as the lymphomas that kill so many of them. These patients, together with the homeless for whom AIDS is a particular problem, require special support services.

Of course, it is possible to argue that PWAs do not deserve support because all but a small percentage of them have become infected through immoral conduct, usually by sharing a contaminated needle to inject an illegal drug or by engaging in illicit sexual activity with someone who is already infected. This identifies the sinner with the sin. But here the bishops of the United States, in their 1981 statement on health and health care, and Pope John Paul II, in his 1995 encyclical Evangelium vitae, make relevant observations. According to the bishops: "[Jesus] relieved suffering and `cured all who were afflicted' (Matt. 8:16). He demonstrated that illness could be an occasion to prove God's love for his people and not the sin of punishment" [italics mine]. The pope specifically mentions "relief centers for AIDS patients" as one of the "eloquent expressions of what charity is able to devise in order to give everyone new reasons for hope and practical possibilities for life." Nowhere in the Gospels is there a record of Jesus having conditioned a cure upon the cause of the illness.

* Fourth: It is true that the new medications have effected an overall decrease in AIDS deaths, but PWAs are still dying, and the rate of infection--which is highest among minority groups--has not decreased significantly. (The fear is that as infections and deaths decrease among the white middle class, PWAs will lose their strongest advocates.) More than 50 percent of PWAs are resistant to the new life-extending medications. This figure includes not only people whose resistance was built up by older medications, but also those who were never warned that the virus would learn to resist the new medications if there were a substantial interruption in taking them--because no one knew of that problem. It also includes street people who cannot or will not maintain a medication regimen that may require taking more than twenty pills every day, at rigidly set intervals, and other pills and/or IV infusions at other times during the week. My own and others' admittedly anecdotal experiences seem to indicate that there has been a recent increase in deaths among long-term patients who fall into the medication-resistant groups. The larger number of PWAs remain in peril.

That peril would seem to render irrelevant the objection that the special funding/publicity status of AIDS is primarily the result of organized pressure. True as that may be, it pales into insignificance in the face of the real and urgent needs of the imperiled--needs that would not be met except for the special funding/publicity status of AIDS.

Even those who are now benefiting from the new medications continue to need financial assistance and moral support. Unless cheaper medications are developed, these people face a lifetime of exorbitantly expensive treatment. Many remain disabled by long-term, chronic infections that the new medications have not helped to cure. Likewise, the medications do not cure the isolation and depression characteristic of the lives of so many PWAs.

* Finally: I can hardly claim to be anything special, either as a volunteer on the AIDS wards (many others do far more than I) or as a veteran of prostate cancer (many others have far worse prognoses than I). I want a cure for prostate cancer; I don't want to die of it. I want a cure for AIDS; I don't want people to die of AIDS infections. Those who would turn us against each other in pursuit of some other agenda are wrong. Not only do they fail to serve us and all the diseased, they also undermine the determination of a nation to see to it that cure and care are somehow available where cure and care are needed. Resentment, envy, and cynicism divide; they do not conquer. Downsizing assistance will hurt PWAs; it will help no one.

Robert M. Byrn, professor emeritus, held the Leonard F. Manning Distinguished Professorship at the Fordham University School of Law.