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Introductions To AIDS Agencies

Autumn '93

There are 93,247 AIDS organizations in the United States. Where is the average HIV positive person or PWA supposed to turn for help and information?

Being Alive

My first experience with "Being Alive" was through the Newsletter. I discovered the wide range and depth of information . I wrote a couple of articles which, to my great delight, were published. As a result, I was invited to attend one of the early meetings of the women's newsletter-and that's how I got involved. I became a member and a volunteer with the organization.

One thing that sets Being Alive PWA coalition apart from all the other organizations is that Being Alive runs on the efforts of volunteers who have HIV/AIDS. This includes the Board of Directors, newsletter team, office operations, and programs.

For a long time I thought that Being Alive was only a publication. I never knew the full extent of services that Being Alive, "the organization," has to offer.

The membership is comprised exclusively of people who actually have the virus. Associate members are volunteers who are immediately affected by the AIDS pandemic, that is, they have a lover, family member, or close friend who is living with HIV or has died from AIDS. We are a multi-cultural group ranging in class from the very privileged and educated to the unfortunate and homeless. The common bond that enables us to work together is that we are all living with AIDS.


Being Alive was founded in 1984 by a group of gay men who had AIDS, for emotional support and empowerment. It was the first organization of people with AIDS helping people with AIDS.

Support groups are the core program. That's what a lot of people come for. Others come for medical information, as well as for support in negotiating treatment strategies with their doctor.

The support groups at Being Alive are not therapy groups. They are what is called "peer support groups." Of course a peer is defined as someone who is in the same situation as others in the group, in this case a person with AIDS or HIV infection. Being Alive believes that, in general, the therapeutic value of one person with HIV/AIDS helping another far surpasses that of professional therapy.

The support groups are run by trained peer facilitators. Most groups are open "drop-in" groups. A women's group meets on the first Sunday of every month from 1:00 pm to 2:00 pm. Call the Being Alive office if you are interested in joining this group.

Studies have shown that a good emotional support system sustains and prolongs the lives of people living with HIV/AIDS. The bottom line at Being Alive is that we prolong our own lives and improve the quality of our lives.

Peer Counseling

Support at Being Alive is available in a variety of ways. From 11 am to 6 pm Monday though Friday and 12 noon to 4 pm on Saturdays there are volunteers answering the phones. They can also be reached for immediate questions and concerns, or be called on a regular basis for peer counseling. This happens both on a phone-in and walk-in basis. Currently, Being Alive is making a serious effort to get women involved in the office as peer counselors. It's important because more and more women are beginning to call the office. They call with a variety of concerns: "I'm 6 months pregnant and I just found out I'm HIV positive", or "My boyfriend has AIDS, I tested positive last week", "I have a vaginal discharge that won't go away, does that mean I have HIV?". When they call, they want to talk to another woman. The volunteers are always very compassionate, but, it's hard for the woman on the other end of the phone to talk about her pregnancy or her vaginal discharge to a man. If a woman calls while neither of the two HIV positive women volunteers are in, she's not really getting the full benefit of "peer" counseling. The ideal situation would be to have an HIV+ woman on every shift during office hours. The morning shift is from 11:00 am to 2:30 pm and the afternoon shift is from 2:30 pm to 6:00 pm. If you are a woman with AIDS or HIV and if you are isolating, perhaps you could benefit from volunteering your time to help others like yourself.


The original Being Alive Newsletter started in 1984. The women's newsletter grew out of the Women's Issues section of that newsletter.

The newsletter does two jobs. It gives information to people who need it. And it helps to connect people to each other and to things going on in the community. The regular Being Alive Newsletter is published monthly. The Women Being Alive Newsletter is published quarterly. Subscriptions are free to people with AIDS who can't afford to pay.

Social Events

The newest regular event at Being Alive is the Women's Socials for HIV positive women, women with AIDS, and their female friends. These are held on the first Sunday of every month from 11:30 am to 3:00 pm at the Being Alive office in Los Angeles. It's an excellent, safe opportunity for women to meet each other. Plus, this event is totally catered to women. We offer transportation. Children are welcome. We provide food and drinks. We want to make it easy for women to attend.

Being Alive hosts several social events and parties throughout the year. Probably the best attended event is the holiday party which will be on December 23rd this year. Events are always listed in the monthly newsletter.

Speaker's Bureau

The Speaker's Bureau is a group of 30 to 40 people who go out and speak wherever, and for whoever requests them. It's a pretty tight cadre of people. They meet regularly. And they have a lot of training so that they are able to answer questions on anything about AIDS. The Speakers Bureau welcomes the participation of women.

Medical Update

Every month Being Alive sponsors the Medical Update, presented by Dr. Mark Katz. It's held the 4th Monday of every month, 7:00 pm at Plummer Park in West Hollywood. Dr. Katz always starts with the most current general medical information. Then he has a guest who focuses on a particular subject, such as skin problems, gynecological symptoms, treatments, mental health, and so forth.

The medical update is videotaped for broadcast. It airs on several public access stations. The schedule is listed on the back of the Being Alive Newsletter. It is also broadcast in five other cites besides Los Angeles These are: West Hollywood, Long Beach, Santa Monica, Van Nuys, and Hollywood. Tapes are also available from the Being Alive library.


Being Alive maintains a library which is staffed by a team of volunteers. They organize the information which comes into the office, in addition to soliciting information. The library has books, newsletters, pamphlets, literature, video tapes, and current information on clinical trials. They also are connected to the Computer AIDS Network, commonly known as CANE. This is a computer based system containing archives of information on all aspects of the pandemic. If people can't locate the information they need in the Library, they can request a search on CANE.


One of Being Alive's original functions was advocacy for AIDS patients. It remains an important part of the organization to this day. Currently, Being Alive maintains an advocacy committee that monitors public policies, and initiates projects which provide assistance and support.

The Advocacy Committee is working on several projects. Currently, they are trying to launch a group called "People with County", modeled after the existing "People with Kaiser." This will provide on-site peer counseling at the Los Angeles County AIDS Clinic at County USC, better known as 5P21. They are raising funds to provide individual phone service for every patient in the AIDS ward at County USC. Up until now, the patients have only had access to a pay phone. Hopefully, the phone project will soon be realized.


Finding a mate, or even a date, when you're HIV positive is at best difficult, at worst impossible. Connect was created to help HIV+ people do exactly that-connect. It is another way for people with HIV to meet each other outside of a support group setting.

It's a personals "rag" with mostly local listings. There's a heterosexual section, a section for women seeking women, and men seeking men. It takes the edge off the inevitable questions -"When do I tell? Do I tell? How do I tell?" It eliminates a situation which causes many people with HIV a lot of agony.

Getting Connect is easy. People can call, write, or drop-in the Being Alive office for an application. You simply fill out the application which includes writing a little blurb about yourself. (There are samples included for those of us who are modest and not quite sure how to put ourselves into words.) You list either your address and/or your phone number so that other people who are also listed can contact you.

No samples of Connect are given out. The listings are strictly confidential. You must be a subscribing member of Connect to receive a copy of the publication. Subscribers pay a donation of ten dollars for three months. (Not bad to find a potential partner, I think.) And, yes, there have been many success stories.


Women are the fastest growing segment of the population who are being infected. Being Alive sees the needs of women and is trying to help us and encourage us to help ourselves. The first women's programs, the social and the newsletter, are a huge success.

The model of Being Alive and the premise on which the organization is based works very well. We think that this model will also work for women. The women don't have their own organization, but, we do have this newsletter and a monthly Sunday social as a means of connecting with each other. The women want to be a part of it, they want to contribute. We believe that it is vital for women with HIV/AIDS to meet other women in the same situation so they can form nurturing and supportive relationships.

Being Alive is very much and has been since the beginning an "in process" organization. It's very fluid. There's room for people to start in new directions. But, worthwhile results take time. It can be difficult to get volunteers, until they realize, "Hey, this is going to help me too." We want to stress to women that we want them to take an ownership in this organization. Women should utilize it to their advantage. It's here, and it's up to the women PWAs to shape it in the ways that will benefit them the most. Being Alive is a place where you take out, what you put in, and that's what keeps it going.

Being Alive is located at 3626 Sunset Blvd., Los Angeles, California 90026. Office hours are 11am-6 pm-Monday through Friday, and Noon to 4 pm on Saturday. The phone number is (213)667-3262.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.