The New York Times - June 4, 1983
Sam Roberts
Dr. Thomas arrived at the Bronx hospital's intensive-care unit armed with a 20-page questionnaire and the perspective of dozens of similar interviews as a badge-carrying officer of the United States Public Health Service's Epidemic Intelligence Service.
The sanitation worker, who was not identified, had told his doctors that, unlike the vast majority of AIDS victims, he had not taken drugs intravenously and he was not a homosexual. Hospital personnel feared that before the weekend was over, they would be unable to question him further because he would require a respirator to help him breathe.
"My hope," Dr. Thomas said, "is that if it doesn't come from the laboratory, the clue to the epidemic will come from these unusual cases."
Dr. Thomas, a physician, is a soft-spoken 31-year-old medical detective assigned full time to the city's Health Department by the Centers for Disease Control in Atlanta to help investigate unusual problems such as outbreaks of food poisoning. She has now found herself at what has been described as the epicenter of an epidemic that has grown increasingly deadly since it was first publicly diagnosed two years ago.
Her job demands not just a broad range of medical expertise, but also an ability to develop rapport with patients in order to persuade them to reveal intimate details of their lives. Her work, like that of her colleagues working on the AIDS epidemic at Health Department headquarters at 125 Worth Street, can be tedious and frustrating. And sometimes it can be inconclusive.
From an original list of 28 patients in the city, the sanitation worker remains one of only five cases that, officially at least, still fall outside what doctors have identified as the high-risk groups of potential AIDS victims. Those groups are homosexuals, intravenous drug users and Haitians.
Because he is still too ill with pneumocystic pneumonia, which is one of the infections that has been linked to intravenous drug users whose defenses against disease have been destroyed by AIDS, the sanitation worker is one of two patients awaiting follow-up interviews. Three other cases remain even more of a mystery. After all the interviews, the Health Department has been unable to link them to any of the risk groups.
More than half the 1,450 AIDS cases recorded nationwide have been diagnosed in New York City and 10 times as many cases based on population have been reported in New York and San Francisco, where there are large homosexual populations, than in the rest of the country. The caseload is increasing in New York City by one or two a day. Of the 722 AIDS victims reported here since 1978, 262 have died.
Although AIDS has occurred in some people not identified as being in the high-risk groups, Dr. David J. Sencer, the city's Health Commissioner and before that the director of the Centers for Disease Control, said that if AIDS were spreading beyond the high-risk groups "we would be seeing it out there more than we have now."
And despite evidence that AIDS is being transmitted as a result of sexual intimacy or sharing of needles by drug users, representatives of correction and police officers, sanitation workers, workers in city shelters and hospital employes have expressed concern. "One hospital began to get labor problems, but the people cooled off after a meeting," Dr. Sencer said. "When you're dealing with the complete unknown, there's always nervousness.
Also, Dr. Thomas said, "a lot of hospitals in New York are overreacting with isolation" and routinely requiring masks, gowns and gloves beyond the standard recommended precautions, similar to those for cases of hepatitis B, for any visitors. "It makes the interviews more difficult," she said. "How's the patient going to trust me when he can't even see my face?" Declared Health Priority
Dr. Sencer added: "The thing that makes this more difficult a disease to investigate is the fact that it does involve primarily people who have an alternative life style or an illicit situation."
Last week, AIDS was declared the top priority of the United States Public Health Service, which operates the Centers for Disease Control, and the city's Board of Health ordered local hospitals to report regularly the number of AIDS patients in residence. An estimated 100 AIDS victims are patients in city hospitals. According to a preliminary study by Bellevue Hospital Center, they remain hospitalized an average of 47 days, compared to a typical 7-day hospital stay.
Dr. Roger Enlow, director of the Health Department's new Office of Gay and Lesbian Health, said the city's role should be to "get the most accurate profile and to direct appropriate resources to those institutions most capable of using them."
Dr. Sencer has convened monthly meetings of hospital personnel and AIDS investigators - some of whom have been competing for Federal grants - to share research and pinpoint the direction of the disease. Victims Remain Anonymous
The city's detective team includes Dr. Thomas, her colleague, Dr. Mary Chamberland, and five others whose salaries are paid with a $125,000 grant from the Centers for Disease Control. About a dozen others on the team are paid by the city.
The team's new computerized "active surveillance" program includes up to 20 hospitals where most cases have been reported. Codes are used instead of names to protect patients' identities, health officials said. But some private physicians have refused to report their AIDS patients for fear that confidentiality will be breached.
"I see no need to report," said Dr. Joseph A. Sonnabend, who practices in Greenwich Village, "because I'm not assured of patient protection."
Health Department officials insisted that efforts are continuing with leaders of the homosexual community to make sure that records and even blood samples are kept confidential. The officials said that while detailed interviews with patients were sent to researchers in Atlanta, the names of those patients were not included.
"We may not be keeping track of all the cases but we know that what we're keeping track of are full-blown cases," Dr. Thomas said, meaning the cases require hospitalization. AIDS Diagnosis Common
There is, however, no test for AIDS. As a result, Dr. Thomas said, patients between 15 and 60 in New York City who develop certain rare diseases for which there is no other apparent cause are often presumed to have AIDS.
Once a patient suspected to have AIDS is hospitalized, a nurse usually telephones the results of a four-page questionnaire to the Health Department. Only those AIDS victims who cannot be classified immediately in the high-risk categories are interviewed by Dr. Thomas and her colleagues.
The patients interviewed further are then asked more than 70 complex questions from a standardized form to chart an intimate 10-year medical and life-style history. The questions include: Did the patient ever have a tattoo? Did he or she ever use any of 12 name brands of amyl nitrite or butyl nitrite, known as "poppers," inhaled to enhance sexual experiences? Did the patient ever engage in one or more of 10 specific types of sexual activity? Did he or she ever accept payment for sex? Has the patient shared razors with anyone other than a spouse?
AIDS victims, their sex partners and families are interviewed only after the patients sign a consent form. Several victims, mainly drug users, have refused, Dr. Thomas said. Fourteen AIDS patients died before they could be interviewed. 'A Fishing Expedition'
The additional interview takes 45 minutes. Interpreters are used when necessary. "It is sort of a fishing expedition," Dr. Thomas said. "People may be willing to tell you they used drugs five years ago but aren't willing to tell that they still use them occasionally."
"One woman," she added, "said her sex partner for the past five years is straight. Then we go interview him and the most common thing is that he has used intravenous drugs, 'but not for 10 years, and please don't tell my girlfriend.' "
Unlike television versions of medical detective work, when dogged investigations always produce results before the program ends, Dr. Thomas and her colleagues said they do not interrogate neighbors and co-workers of AIDS patients. The investigators said they glean virtually all the information they need from interviews with the patients themselves.
The sanitation worker, whose collection route took him through slum neighborhoods where intravenous drug use is common, said he had handled discarded syringes but said he could not recall being jabbed by used needles. Doctors hope to be able to interview him again.
Often, Dr. Thomas said, "a patient will think of things we didn't even think to ask. We think that maybe by these interviews, they'll help us find the cause."
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