AIDS Group Puts Living at Top of Its Agenda

By the time he was diagnosed as having AIDS, Ron Rose had lost his job because he had been sick so much.

His roommate wanted him to move out, so he had no place to live.

And when he joined a support group, it seemed that other AIDS patients were just sitting around waiting to die.

But this is not another sad tale about a victim of acquired immune deficiency syndrome, because the 35-year-old Rose decided to “concentrate on being alive.” About two years ago, he founded an organization called just that: Being Alive.

The first Los Angeles group started by and run by people with AIDS, for people with AIDS, Being Alive was initially a social group, aimed at getting “people that were being isolated back out doing things,” Rose said at a recent meeting.

Being Alive now has 175 members. At this meeting, no one used the words patient or victim .

As he and others noticed gaps in services for people with either AIDS or AIDS-related complex, Rose said, Being Alive became more activist-oriented and expanded late last year into the Being Alive-People With AIDS Action Coalition.

They helped found two Spanish-speaking support groups in Los Angeles, now serving 19 participants, after realizing there were no such forums for Latinos with AIDS.

They started a roommate referral service to match up people who can no longer afford their rental payments. Using two members’ private phones since December, the service has helped 60 people.

Most important, gay activist and Los Angeles County Human Relations Commissioner Morris Kight said, they help bring a “peer consciousness” of the AIDS condition to those with the disease, professionals in the field and the public.

Although other groups may have people with AIDS on their staff or boards of directors, Kight said, “This was the first that was independent, autonomous, organized by persons with AIDS.”

They bring a needed perspective, he said, because “people with AIDS know more about AIDS than anyone else. It is they who should be initiating the dialogue about the needs of persons with AIDS. They’re the ones that should say: ‘Here’s what you do, here’s what you don’t do.’ ”

Being Alive holds monthly meetings for people with AIDS, publishes a newsletter and offers a speakers bureau, and on May 29 it is sponsoring an AIDS candlelight walk and vigil in West Hollywood. It runs on a shoestring budget, Rose said, with expenses shared by coalition members and outside donors.

Frustrations Voiced

Coalition speakers try to bring the frustrations of being an AIDS patient to the attention of the public. “We’re angry at the local, state and federal governments for their lack of response to AIDS,” Rose said, “from lack of local hospice programs to lack of state and federal funding for medications.”

Given the experimental nature of current treatments, “we’re actually being used as guinea pigs,” Rose said, “and yet we’re asked to pay anywhere between $800 and $1,000 a month for medication. We think medication should be supplied free.”

The three men sitting in a West Hollywood office to talk about the Being Alive coalition looked healthy. Rose, who is short and blond with large, expressive eyes, used to be a hotel customer service representative.

In Medical School

Scott Barry, 29, was a fourth-year medical student before he was diagnosed as having the disease last July. He now devotes most of his time to the coalition. Rick Ewing, 34, is a writer, also with AIDS, who does the same.

Still, the image of those with AIDS is of weak, debilitated people, Rose said. The group’s goal is to change that automatic perception.

“Although our lives may be shorter, they can still be quality lives and productive,” Barry said.

They have to fit coalition work and other activities around their medical treatments, he said, adding, however, that “there are times we have to stay in bed, and there will come a time when we’ll go to the hospital, and we’ll die, too. We’re saying, just because one has the AIDS diagnosis does not mean that you have to concentrate all the time on death.”

‘Ain’t It Awful’

“Most support groups are sitting around playing ‘God, ain’t it awful,’ week after week,” Ewing said. “There’s not enough concentration on coping skills, getting on with life. It’s like wallowing in your problem.”

“A lot of people don’t put their energy toward helping people with AIDS because they figure they’re going to die anyway,” Rose said. “What we’re trying to show is that there are a lot of people with AIDS who are well enough that services need to go on.”

“Because of the introduction of drugs like AZT (azidothymidine, recently approved by the U.S. Food and Drug Administration),” Ewing said, “the amount of time is increasing. . . . We may not die.”