Notes from the drug wars
By Ernest Drucker
Aids in America, the second decade
June 5, 1991 was the tenth anniversary of the first published reports of AIDS in America. That day in 1981 the Morbidity and Mortality Weekly Report, the weekly epidemiological publication of the Federal Centres for Disease Control, told of 5 cases in Los Angeles of pneumocystis carinii - a rare form of pneumonia. All five men were young and all five were homosexual. This association led to the characterization of the underlying cause- Acquired Immune Deficiency Syndrome - as a gay disease. Later AIDS definition would expand to include drug injectors, Haitians, haemophiliacs, and blood transfusion recipients, and, most recently women and minorities.
It is now ten years and 186,000 AIDS cases later. One million Americans carry the virus and there is no end in sight. By now these figures leave us numb. But they are the hard facts of epidemiology - a science that has been called "human beings with the tears removed". In epidemiology, it is common to disaggregate data-to separate age, gender, geography and other factors known to influence virtually all health phenomena. AIDS statistics are disaggregated even further by risk factors such as sexual behaviour or drug use. Through these statistical prisms we are better able to discern the epidemic’s component parts, understand its workings and, hopefully, learn how to intervene to slow its spread.
But this approach - this fragmentation and abstraction of AIDS reality-carries with it some hazards of its own. First we can easily lose sight of the big picture - the totality of the AIDS epidemic in a real place at a specific time in history. For example in the first 10 years of the epidemic, New York City has ha over 30,000 people diagnosed with AIDS; over 20,000 deaths; and, each day now, more than 2,000 confined a city hospital bed.
And even these huge impersonal numbers are understatements of the reality of AIDS. In New York City, at least 150,000 others are infected an will almost certainly become very sic in the coming years. Indeed many are already very sick; perhaps 50,00 have seriously impaired immune functioning and are prone to lethal infections. And, despite a common belief that the epidemic has "crested many more are becoming newly infected. The CDC estimates (conservatively) that 40,000 new HIV infections are now occurring each year in the U.S. Should this rate continue for the decade, at least 400,000 additional cases of AIDS will confront us by the year 2010 beyond the million cases already anticipated from the first wave of infection in the 1 980s.
In AIDS epicentres like New York City now being referred to as "hyperendemic" regions we will probably experience a net growth in the size of the HIV infected population i.e. at least one new infection for each AIDS death. The current figure is about 10,000 per year. The effect of this on our daily lives and social institutions will be profound, extending and deepening over the next generation, barring some medical miracle.
Because of its association with intravenous drug use, AIDS in New York City is increasingly a problem of the poor. So it is the families of the inner-city that will be hardest hit. These families (almost 1 million of them) have already seen 20X000 children lose one or both parents to AIDS. The same families have seen another 50s000 children placed in foster cares frequently associated with untreated maternal drug use itself closely tied to AIDS. By the year 2000, the AIDS orphans will exceed 100,000 and nearly every family in the South Bronx, Harlem and Bushwick will have lost several members.
Such figures require us to reconsider our data on AIDS to appreciate and plan for the collective impact of this huge wave of illness and the true scale of the imminent loss facing our city. Yet local and State governments appear bankrupt, barely able to mobilize the resources needed to collect garbage or keep the bridges from collapsing, no less to mount a huge domestic Marshall plan for our cities. And many in the Federal government don’t give a damn about gays, addicts, or AIDS in New York and places like it. "AIDS", say the most cynical among them, "is the solution, not the problem!"
In the face of such a massive social upheaval, and absent outside help, it is clear that we had better find the means to care for our own. This is something poor families have always understood. If we reaggregate the data on AIDS by families, we begin to see a different picture, one that tells us clearly that the family is the place to put our best energies. One immediate measure that can make a huge difference is the provision of decent housing for all those with HIV-related illnesses.
Currently HIV infected people must wait until they are in the terminal stage of the illness with full-blown AIDS before they become eligible for housing or an adequate allowance to rent their own place. I recently heard of a young man actually "celebrating" his formal AIDS diagnosis because it meant he would no longer be homeless. Hundreds of AIDS patients occupy hospital beds at $1000 dollars per day because we cannot find or create adequate housing which would make their discharge possible.
But housing alone will not enable extended families with three or four sick members to cope with AIDS and its inevitable losses. A great deal of compassionate care is also needed. Imagine a group of adolescents from families with AIDS. Whom do they talk to? And who counsels an AIDS patient’s family about the children’s future as the 35 year old mother re-enters the hospital for what may be the last time?
The list goes on: medical care, expensive new drugs, home health aides pastoral counselling. Drug addiction, usually untreated, often lurks behind the AIDS diagnosis and is more corrosive to family life than AIDS itself. Yet we deny drug treatment to pregnant women and cannot find space in drug programs for their children.
And, of course, there is human sexuality-in all its forms a powerful and mysterious force. In the age of AIDS sex is a contested political terrain in which armies of idealogues take no prisoners, while children become parents at age 14. How may we use AIDS to become one nation when prejudice, dogmatism and discrimination are the reflexive response to the needs of "the others"?
So the task for this coming generation is to match the terrible tenacity of AIDS itself. We must redirect and organize our resources to build and maintain a covenant of responsibility: starting with families-including church and community and the other social institutions in which families exist. But starting with families.
Susan Sontag wrote that we all have "dual citizenship" in the "kingdom of the well and the kingdom of the sick." Eventually we all pick up that second passport. But we need not travel alone. This has been the great lesson taught us by the gay community. It is now time to extend that lesson to all our families.