NEW YORK (Jun. 6)
One decade ago this week, when a mysterious new disease was first reported to have incapacitated five gay men in Los Angeles, the American Jewish community knew little about what would later come to be called acquired immune deficiency syndrome.
Today, the Jewish community knows a whole lot more about the deadly disease, but according to one leading Jewish AIDS activist, it could be doing much more to help people touched by it.
While AIDS has been on the communal agenda for the last five or six years, it has never been a priority, says Andrew Rose, a social worker who set up the first AIDS program in the country sponsored by a Jewish federation.
And now, he said sadly in an interview this week, it has been relegated to the bottom of the list of communal concerns.
“The Jewish community’s attention has shifted so much to Soviet Jewish immigration, in terms of funds and everything else. The issues that are not strong priorities really fall off in times like this,” he said.
“In the past year or so, the response has slowed down,” Rose said. “People feel overwhelmed by it, they are tired of hearing about it and want it to go away. And the white middle class feels less and less directly affected by it as it becomes more of an inner-city epidemic.
“There is a pulling back from a response that was never adequate, never generous, to begin with,” he said.
While that impacts the thousands of Jewish people with AIDS in this country, Rose said, the lack of Jewish programs is even more of a problem for their families.
‘NO LONGER JUST MOURNING PEOPLE’
People with AIDS can turn to AIDS service organizations for support. But it is their parents, siblings and other loved ones who suffer the most without the support of the Jewish community, Rose said.
The stigma of AIDS has not significantly diminished in 10 years, and many Jews continue to think it is not a problem that affects them, he pointed out.
“Even in 1991, and this is unbelievable to me, there are many Jewish communities which believe that this has not happened to them,” he said. “That reflects the level of denial, and of the really sad stories which never get told because people feel too stigmatized to tell them.
“The biological families of people with AIDS feel the social and emotional costs of disclosing the truth are too high, too much for them in the midst of their pain,” he said.
Now that people with AIDS are surviving longer, with the help of new treatments, “there is more need for people to have their spirits strengthened by everyone, including the Jewish community,” Rose said.
“It’s no longer just mourning people who we’ve lost and preparing people to die,” he said. “It’s sustaining people in life, and that can be, and has been, one of the strongest and best aspects of the Jewish community.”
There is little hard data available about how many Jews have AIDS or are infected with HIV, the virus that causes the chronic immune deficiency, since public health statistics do not include information about religion.
But extrapolating from what information is available, some 4,500 Jews are believed to have been diagnosed with AIDS to date, and 2,500 to 3,000 American Jews are believed to have died of complications from the disease.
JEWISH AWARENESS BEGAN IN 1985
The overwhelming majority of Jewish people with AIDS are gay or bisexual men, Rose said, though there are some Jewish women and children with AIDS as well.
Rose first heard about AIDS while he was studying for a double masters degree in Jewish communal service and social work from Hebrew Union College and the University of Southern California in Los Angeles.
Rose, now 37, went to work for Jewish Family Services in Los Angeles after finishing his studies, and in 1985, began working at AIDS Project Los Angeles, a service, education and advocacy organization.
It was the same month that the real cause of Rock Hudson’s death became public, Rose recalled, a watershed month in which many more people became aware of the disease, and the fear level rose substantially.
It was also the summer that the Jewish community first went on record about AIDS, when the Reform movement’s Union of American Hebrew Congregations passed a resolution at its biennial convention calling for outreach to people with AIDS and their families, and for raising the level of AIDS education.
“Some rabbis began to talk about AIDS from the pulpit, and in some of the cities that were hardest hit by HIV, there were some stirrings of a response,” Rose remembered. “A little later, some of the youth organizations began looking at this as an important issue to educate teen-agers about, about safe sex and condoms.
“Before then,” he said, “there had been only some response from the predominantly gay and lesbian congregations and havurot.”
In December 1986, Rose went to work at San Francisco Family and Children’s Services, as director of its AIDS project, the Jewish community’s first full-time and comprehensive AIDS program anywhere in the country.
FUNDING PROBLEMS FOR NATIONAL PROJECT
It was not until 1987 that a wider range of Jewish organizations began dealing with the reality that AIDS was not someone else’s problem, according to Rose.
At the end of 1989, after moving from San Francisco to Baltimore, Rose tried to revive the National Jewish AIDS Project, which had been started in 1986 but immediately ran into problems because of a lack of funding.
For a year and a half, he has worked at raising the money needed to sustain the project, a national clearinghouse of information about AIDS and the Jewish community for legislators, educators, synagogues and other groups.
But Rose has been able to raise only about $40,000 of the $100,000 needed annually to keep its doors open full time, and has recently had to take another job, unable, any longer, to run the project without getting paid.
Rose now works as a social worker with the Baltimore City Health Department. He is now spending his workweek helping mainly black people with AIDS, rather than Jews.