The New York Times - November 14, 1986
Philip S. Gutis

The growth in the number of people with AIDS in the suburban communities is straining already thin resources. the officials said. And suburban residents' fear and denial that the disease is spreading in their communities has slowed development of the kind of resources to help AIDS victims that have long been in place in cities, they added.

But one of the most disturbing aspects of the situation, the officials said, is that the number of suburban people with AIDS is widely believed to be much greater than officially reported. AIDS Victims Returning to Suburbs

This is so, they said, because increasing numbers of people contract the disease in urban areas and, unable to support themselves, return home to their families in the suburbs. Those people are in addition to the growing number of AIDS cases contracted in the suburbs.

Some officials said the disparity between actual and reported cases was allowing suburban communities to continue to deny that AIDS was a problem for them, thereby slowing the delivery of care and education.

"People in the suburbs don't want to be touched by things like homosexuality, like substance abuse," said the executive director of the Mid-Hudson Valley AIDS Task Force in White Plains, John E. Egan. "And people protect themselves from things that are threatening them by denying that they exist. People are afraid of this. They don't want AIDS in the community. But unfortunately, they don't have a choice."

Statistics from several suburban counties in New York, New Jersey and Connecticut show a substantial increase since the early 1980's in the number of people diagnosed as Bergen County in New Jersey, for example, the total number of AIDS cases has risen from 7 in June 1983 to the current figure of 100. In Fairfield County in Connecticut, 96 cases have been reported since 1980.

#308 Cases Reported on L.I.

Long Island, with 308 reported cases, is the nonurban area with the largest group of people with AIDS in the country.

The Robert Wood Johnson Foundation of Princeton, N.J., which recently pledged more than $17.2 million for AIDS care and education, has recognized the need for increased care for AIDS patients in the suburbs, said the director of the Foundation's AIDS Health Services Program, Dr. Mervyn F. Silverman.

The foundation awarded a $1.6 million grant to a consortium of Long Island groups - the only suburban group to share in the program - to improve the delivery of AIDS services and to foster the development of a "national suburban model" for AIDS care. The foundation also awared money to New York City and made a joint award for Newark and Jersey City.

"Suburbia is unique because it is unsuspecting," Dr. Silverman said.

'We Have to Teach People'

"We have to get people to understand that it could happen to them," said Gail Barouh, executive director of the Long Island Association for AIDS Care, which is based in Huntington. "We have to teach people that it is a problem that can affect everybody."

Though the majority of AIDS patients around the country continue to be homosexual or bisexual men and intravenous drug users, health officials warn that the disease is beginning to affect other groups, including heterosexual women. In the United States, AIDS, or acquired immune deficiency syndrome, is believed spread primarily through anal intercourse and through shared needles by drug users.

Health care professionals and sociologists said the intensity of the AIDS problem was recognized in the cities long ago. But they said such recognition has been lacking in the suburbs, largely because most people are unaware of how many people with AIDS actually live in their communities.

In the mid-Hudson area, including Westchester, Rockland, Orange, Putnam, Ulster, Dutchess and Sullivan Counties, more than 150 AIDS cases have been reported since 1981, said Mr. Egan. "But the actual number of cases in the area is at least twice that much," he said. "Perhaps it's even 10 times as many."

In addition to the disparity in numbers, "there is a great reluctance to believe the scientific information," said a professor of science, technology and society at Cornell University, Dr. Dorothy Nelkin, who is a member of a Federal panel of that studied AIDS. "People are afraid, they are less familiar with the problem."

Even when forced to deal with the problem, families in the suburbs are often overwhelmed with fear that their neighbors, co-workers or even other family members will learn of their situation. This differs from many cities, where tightly knit homosexual communities often support and care for people with AIDS, their partners and families.

Ms. Barouh of the Long Island association recounted a recent experience she had in a bereavement group with six families whose children had died of AIDS. The group - which she called a good representation of the AIDS cases the organization must handle - included the parents of a woman who contracted the disease through heterosexual sexual relations, two parents of male homosexuals, one brother of a homosexual, and parents of male and female drug abusers.

"They all turned to me and said they were unhappy with how AIDS is being treated in the suburbs," Ms. Barouh said. Her response was harsh.

Group Faced With AIDS Issues

"Only two of you count in Long Island statistics, the rest of your chidren came from the city or California," she recalled saying. "And none of you will admit publicly that one of your loved ones even died from AIDS."

"Why should it be any different until you stand up," she continued. "Each one of them just looked at me and said, 'I'm really scared.' "

Dealing with that fear can make providing AIDS care extremely difficult. "It leads to difficulty in getting widespread community support for AIDS programs," Mr. Egan said. "There are no medical or social services, no housing. It's been very difficult to provide services to our clients. It's been an uphill battle."

In New Jersey, where more than half the AIDS cases have been attributed to intravenous drug use, primarily in urban areas, the state "has really been very derelict in providing services for AIDS," said Margaret E. Nichols, the executive director of the Hyacinth Foundation, a group that recently received a contract from the New Jersey Department of Health to provide services to people with AIDS.

Intravenous Drug Users

New Jersey is the only state in the country where more than half of its AIDS patients are intravenous drug users, But recently the state has experienced a growing problem in its suburbs, particularly in the northern counties of Bergen and Essex. In those areas, "70 to 80 percent of the cases involve gay men," Dr. Nichols said. "In that way, the demographics are much more like the rest of the country."

Richard J. Russo, an assistant commissioner in the State Department of Health, agreed that more AIDS services were needed throughout New Jersey, but he said the state was beginning to succeed in "setting up a continuum of care for AIDS patients."

"But we have a unique situation in developing community-based care," he said. "IV drug users do not have a community buddy system, they are more street people."

Dr. Nichols is blunt in assessing New Jersey's record with AIDS patients, especially those in the suburbs. "If you have AIDS," she said, "you are better off if you don't live in New Jersey."

But New Jersey is certainly not alone in having problems working with AIDS patients in the suburbs, where community-based care is much more difficult to develop than in the cities.

Such community-based care plays the major role in the "national suburban model" envisioned by the Long Island Association for AIDS Care and the Robert Wood Johnson Foundation.

The model - according to Ms. Barouh and Dr. Bruce D. Agins, director of the AIDS program at the Nassau County Medical Center - would include the hiring of a visiting physician and full-time housing, education and volunteer coordinators.

The volunteer program, which has been used effectively in New York City and San Francisco, involves finding people to serve as buddies or companions for people with AIDS, to work the AIDS hotlines or to handle support groups. The Long Island association now has 85 volunteers, Ms. Barouh said, a substantially increased and continually growing number.

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