And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (58 page)

The following day, the Centers for Disease Control reported that 1,676 people had been diagnosed with AIDS in the United States, of whom 750 had died.

July 1983

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The baby girl, Diana, was brought to Arye Rubinstein’s pediatric immunology clinic with all the classic symptoms of infant AIDS. Although only a few months old, Diana had never experienced the growth typical of infants in their first weeks of life. The parental profile was familiar too. Both the mother and father were intravenous drug users; the mother suffered from immune abnormalities such as swollen lymph nodes. Diana had an older brother with the same wasting syndrome. Dr. Rubinstein hospitalized the child for tests in Jacobi Hospital.

At first, the mother visited Diana and her brother occasionally. Then she disappeared, abandoning her two children to the care of the nurses and doctors; the white brick hospital complex in the Bronx became Diana’s new home.

The scenario was repeated in the early summer months of 1983. Although AIDS may have made its splashiest debut among gay men, the disease also had taken root among the junkies of the ghettos, where shared hypodermic needles proved a remarkably efficient transmission route. The epidemic was creating its new class of victims among the children of women who were infected either through their own drug use or sexual contact with the babies’ addict fathers. Abandoned or orphaned, the children were left homeless, living in municipal hospitals.

Arye Rubinstein despaired over the babies but soon arrived at a plan that might give them the semblance of a home while avoiding immense and unnecessary hospital bills. Foster parents were available for the children, Rubinstein knew, but they tended to be working people who could not care for the babies during the day. With a small day-care center, however, Rubinstein figured he could monitor the infants’ medical conditions while foster parents worked. The city would save nearly $500 per day per child in medical costs.

The plan seemed both humane and cost-efficient, so Rubinstein approached city officials. Everybody was very sympathetic and praised his efforts, but nobody was interested in putting money into Rubinstein’s center. This was when Rubinstein learned what gay leaders had known for two years: New York City’s government had every intention of getting through the epidemic spending the least amount of money that was politically possible. Rubinstein warned that, given the projected increases of AIDS cases, such babies would be in the wards of all the city’s hospitals if some plan were not instituted now. Rubinstein was dismissed as a fabulist. The doctor was shuffled from agency to agency, official to official.

New York City’s reaction toward the epidemic was marked by the utter absence of any policy at all. Both state and city officials minimized the importance of the epidemic, thereby justifying their inaction. In late June, City Health Commissioner Dr. David Sencer had reported a “leveling off of cases” and proposed that gay men might be “getting immune” to the disease and that AIDS was perhaps “not as infectious as we may have thought.” The chairman of the city’s Human Rights Commission, Isaiah Robinson, flatly told the
Daily News,
“There is no epidemic.” His calculations stemmed from the fact that 1,600 AIDS cases in a nation of 200 million meant only 1 in 100,000 Americans had contracted the disease. “One ten-thousandth of one percent is not an epidemic,” he said.

In Albany, Governor Mario Cuomo was proof that official disinterest in AIDS knew no party lines. On fiscal grounds, the liberal Democrat had taken a strong stand against the Republican-dominated state senate’s push to appropriate $4.5 million for AIDS research and $700,000 for education and prevention programs. The state senate voted unanimously to allocate the funds, but Cuomo threatened a veto. “It’s a very good bill if you have the $5 million,” Cuomo said. “I don’t have the $5 million.” Before a legislative investigations committee on the epidemic, Cuomo’s state Health Commissioner David Axelrod dismissed criticism by saying hypertension was a more important state health issue in New York.

The vastly different political mechanics of San Francisco and New York ensured that few eastern gay leaders would launch any attacks on the officialdom. On the West Coast, gay political power was a grass-roots movement with mainstream politicians aware that their positions rested in part with their ability to please gay voters. In New York, gay power tended toward a top-down paradigm. Little evidence of a grass-roots movement existed, and gay political leaders thrived more on the favors of public officials. Though Democrats were sensitive to gay concerns, they were not as beholden to gay leaders as much as gay leaders were beholden to them. The result was tepid gay protest against official inertia, when protest existed at all.

Had gay leaders wanted to protest, there was little evidence that they could find a credible forum for their concerns. In late June, gay organizers had met with the vice-chairman of
The New York Times
in an effort to gain coverage of the community and the epidemic. Though the newspaper followed medical developments in the AIDS story, mention of the epidemic rarely appeared in the Metro section or national news reporting. Even the
Times’s
recalcitrant executive editor Abe Rosenthal had sent “my regrets” to the Gay Men’s Health Crisis for not covering the Madison Square Garden circus, attributing the neglect to “human error” still, in the meeting with gay politicos, the
Times
vice-chairman had insisted the newspaper would continue to use the word “homosexual” rather than “gay” in its news coverage. The word “gay” implied happy to most people, the executive had maintained, even as he used the word in its twentieth-century meaning throughout the negotiations. After the talking was over, the amiable homosexual leaders thought they had made progress and told gay papers so. This evaluation was rebuffed by the executive’s later appraisal that, “I didn’t say the
Times
is open to criticism. I said it is open to suggestions.”

New York City’s languor staggered Dr. Mathilde Krim when she started pushing for more city services in the epidemic. In June, Dr. Krim and a number of gay doctors had organized the AIDS Medical Foundation, a group designed to spur medical interest in the disease. Soon, Krim found herself lobbying on municipal health issues, if for no other reason than few other people seemed willing to do it.

The fifty-six-year-old cancer researcher was first drawn to AIDS work in 1981 because of her work at the Memorial Sloan-Kettering Cancer Center, where she was popularly known as the “interferon queen.” She had been scouting for a skin cancer with which to measure interferon’s effectiveness on cancer. The mysterious appearance of KS intrigued her; tumors on the skin could be measured, providing a far more accurate appraisal of interferon’s performance as a cancer-fighting agent.

As Mathilde Krim stepped up her own AIDS research in early 1983, she was surprised at the lack of coordination of services in New York City. Hospitals shied away from a leading role in facilitating an orderly response to the epidemic. The city’s hospitals were petrified of being identified as an “AIDS hospital,” which would surely lose them patients in the atmosphere of AIDS hysteria, so no institution wanted to be identified with this disease. Individual gay doctors built their files and collected data, but there were no AIDS clinics or wards even on the drawing boards in New York. In San Francisco, where studies were coordinated through the UCSF and San Francisco General clinics, interferon was having some effect on patients with early KS; in New York, less improvement was seen. The difference, Krim believed, was that by the time KS patients were treated at Sloan-Kettering, their condition had so deteriorated that they could hardly offer an accurate measure of the drug’s effectiveness. They were already half-dead by the time they walked into the hospital.

The long-term implications of the lack of much official interest in AIDS also occurred to the researcher. Because the city had no outpatient clinics for AIDS patients, they were being needlessly hospitalized for problems that could be handled in a specialized ambulatory care facility. Lack of any home care or hospice beds also would exacerbate the problem of unnecessary institutionalization of AIDS patients, Krim saw. The cost would bear down most heavily on the city; because many patients lose their health insurance after losing their jobs, they would be forced into public hospitals. Given the projections of the spread of AIDS cases, the city faced a terrible expense. And the lack of any education programs only guaranteed that the long-incubating virus was creating fat AIDS caseloads for years to come.

By now, Krim had heard about Larry Kramer’s fights with the city and had decided Kramer was right. Indignation was an entirely justified response, she thought. The city of New York was completely irresponsible.

Fortunately, Mathilde Krim carried more credentials than Larry Kramer, the angry writer who had dropped from the scene after his split with the gay group. Born to a German-speaking mother, Krim had a thick European accent that made her sound like an eminent researcher. She was married to Arthur Krim, the board chairman for Orion Pictures and an all-around mover and shaker in the powerful New York-Los Angeles circuit of high finance. With social connections and scientific prominence, Krim seemed a godsend to epidemic-fighters, who still lacked anyone of star quality.

None of this, she quickly discovered, made much difference.

Krim called a number of personal friends who ran prestigious medical and scientific foundations.

“AIDS is a local problem,” they told her. “We deal with the big picture here.”

When she started contacting city officials about lack of services, she heard, “Let’s wait and see how it develops.”

“If one waits and sees, it’s going to be too late,” Krim argued. “It will be totally out of hand and you won’t have the programs to deal with it.”

When pleading with Health Commissioner David Sencer yielded no results, Dr. Krim sought an appointment with Mayor Koch. Given the doctor’s social connections, that proved to be no problem. The problem still was Koch.

“What should I do?” he asked at first. “The gay community doesn’t like me. Everybody says I’m gay, and I’m not. I don’t know what they want me to do.”

Krim outlined a coordinated program of ambulatory care clinics, a home-care program, and a hospice, stressing the fiscal benefits of the plan.

“We want to see a document with numbers and proof that what you say is correct,” Koch said.

When Mathilde Krim said she could provide such a document, the mayor seemed to soften.

“Okay, Mathilde, I’ll make you the head of my task force on AIDS,” he said.

Krim left the office feeling she had accomplished something, at last.

She never heard from Mayor Koch again.

Later compilation of AIDS diagnoses showed that during the month of July 1983, the city’s AIDS caseload topped 1,000 patients. By July 30, 1,003 New Yorkers were stricken with the deadly ailment, more than had existed in the entire nation just a few months before.