The New York Times - June 3, 1984
JUDY GLASS

Described as an epidemic in 1981, the syndrome is causing tremendous concern in the homosexual communities of Nassau and Suffolk Counties.

It is also disrupting the lives of families who may be confronting for the first time the fact that a son, brother or husband has the disease.

Sixty-one cases of AIDS have been confirmed among Long Island residents since June 1982, when the State Health Department began recording them. Twenty-four of the 61 have been reported in the last five months.

"The number is steadily increasing," said Robert Hawkins, associate dean of the School of Allied Health Professions at the State University at Stony Brook.

AIDS, an acronym for acquired immuno-deficiency syndrome, is a usually fatal disease marked by a breakdown in the body's ability to combat infection. Patients with the disease are vulnerable to a variety of fungal, viral and malignant disorders, including Kaposi's sarcoma, a rare skin cancer, and pneumocystis carinii, a rare lung disease.

In addition to an unknown number of males considered at risk because of sexual contact, 6,000 intravenous drug users on Long Island are also considered among those at risk to contract the disease. An unknown number of others, including blood recipients and male and female sexual partners of those at risk, are also at risk.

In describing the urgency of self- help programs such as the one at Stony Brook, Mr. Hawkins stated that the current statistics are "inconclusive" because they have been kept only for the last two years and because many cases of the disease are never diagnosed.

The State Health Department receives reports primarily from hospitals on the Island. These cases have been confirmed through a diagnosis based on testing and medical history. Private physicians report the disease also, but sometimes it is misdiagnosed or Long Island residents see physicians outside the area.

"Many men on Long Island are leading dual lives," Mr. Hawkins said, "and are reluctant to be examined by family physicians."

His projections of the group at risk are based on the study "Sexual Behavior in the Human Male" published by Kinsey, Pomeroy and Martin in 1948. That study estimates that "37 percent of the male population has some homosexual experience between the beginning of adolescence and old age."

Citing statistics that show that there are at least 888,500 males over the age of 18 on Long Island and that many men refrain from homosexual contact because of the possibility of contacting AIDS, Mr. Hawkins said that a "conservative" estimate would place 20 percent of that number at risk. His estimate of intravenous drug users is based on statistics kept by drug treatment programs in Nassau and Suffolk Counties.

Calls to the hot line come from family and friends as well as those with symptoms. "The worried well," as Jane Ashe, coordinator of the hot line, calls them, are the most frequent callers. With pre-AIDS symptoms, they are often isolated on the Island.

Those whose symptoms have already been diagnosed may be seeking medical, dental or support services from professionals outside their own communities.

A 28-year-old who had been living with someone in the city for two years recently came home to his family on the South Shore with the constellation of symptoms that mark the onset of the disease. He had swollen glands, fever, diarrhea and weight loss. Weak and unable to combat the numerous infections that debilitate AIDS sufferers, he had had to quit his job. His family, who knew his life style, were supportive but no definitive diagnosis had been made, and they were requesting a referral to a physician.

In a less typical case, a married Long Island businessman who had been having homosexual relationships for years called for a referral to a physician. The father of two small children, he was a highly respected member of his professional and social communities. His wife was completely unaware of her husband's dual life. And he would not take a chance telling his family physician.

"There is no single test for AIDS yet," said Dr. Roy Steigbigel, associate professor of medicine and pathology at Stony Brook's School of Medicine and head of the Infectious Disease Group, a unit within the School of Medicine.

"If callers are worried or in need of an examination," he said, "we can refer them to doctors, dentists and counselors listed with the AIDS Community Service." If they have definite symptoms, they might be seen by a physician in the Infectious Disease Group, but there is no formal screening clinic, he said.

Leaders of the AIDS Community Service, a program within the School of Allied Health Professions at Stony Brook, have organized a task force to set up auxiliary services such as a "buddy system" for afflicted homosexuals confined to their homes, domestic services, and legal and financial counseling for those who do not have access to them.

Mr. Hawkins said that the grant made by the New York State AIDS Institute is for educational and community services. The hot line, which he called "the first priority," is one of three listed with Long Island information: 288-5888 for eastern Suffolk, 444-2437(AIDS) for western Suffolk and 789-2437 for Nassau. A state hot line, 800-462-1884, refers callers to seven other regional centers in New York.

A major objective of the new service is to enlist volunteers in the program. In what is essentially a "two- pronged approach," said Jane Ashe, the community service will give healthy homosexuals an organizational structure to tie into at the same time that it provides services to the ill.

The disease is believed to be caused by a viral agent recently discovered by scientists at the Pasteur Institute in Paris and at the National Cancer Institute. However, it is not clear whether the virus is "the chicken or the egg," Dr. Steigbigel said. The virus may initiate the breakdown of the immune system, or it may be another infection that attacks the weakened victim.

"If AIDS is one disease and the virus HTLV or LAV is the agent," Dr. Steigbigel said, "then it is likely that a blood test will be developed to identify the virus or its antibodies in the patient."

At present there is no test for it other than tests identifying lymphocyte abnormalities.

To complicate the problem, Dr. Steigbigel said, little is known about the method of contraction. Some people live with partners who die of the disease and never get it. Others have certain symptoms that never develop into the syndrome. It is generally believed that it cannot be contracted by casual social contacts, such as kissing or drinking, but homosexuals are often ostracized by members of both the homosexual and heterosexual communities.

The incubation period - the time between acquisition of the infectious agent and the onset of the disease - is thought to be from two to five years. However, in the absence of a definitive test, this too remains controversial, Dr. Steigbigel said.

"There are few infectious agents that cause disease in 100 percent of the population," he said. Other factors, the genetic makeup, nutritional states, other infectious agents that may be present and emotional factors also contribute.

"The stress is the same for anyone with AIDS or pre-AIDS symptoms," said Rose Walton, who is organizing the fund-raising and support group's efforts and is a co-chairman of the East End Gay Organization on Long Island, which says it is the largest homosexual human rights organization in New York. She said that the AIDS Community Service at Stony Brook would coordinate activities with the social, educational, cultural and political activities already in existence on the Island.

While anonymity is guaranteed to those who call the hot line, those who are isolated are being encouraged to become part of the group effort.

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