Being Alive - July, 1999
Walt Senterfitt
The federal Centers for Disease Control and Prevention (CDC) is about to release nearly $3 million that have been awarded to Los Angeles County for a series of demonstration projects relating to "Prevention for HIV-Infected Persons." The acronym "PHIP" is already being applied, though few people understand the concepts behind this initiative as yet. The funds will be administered by the County's Office of AIDS Programs and Policy (OAPP).
"Why talk about prevention for positives?" some folks ask, "It's too late. We already have it." "Is this all just another attempt to blame us for the epidemic?" "Are you saying we are the only ones responsible to prevent new infections?" Some uninfected leaders in Los Angeles say, "Why are you positives now grabbing 'our' prevention money? You have the Ryan White CARE Act and loads of special privileges and programs. We have little enough as it is and it should all go to keeping negatives negative!"
These are understandable questions, but reflect confusion and misunderstanding of what this new focus is about, and why Being Alive has strongly adopted it (see Juan Ledesma's "From the Executive Director" column in the May 1999 issue).
Prevention is hardly a new topic for those who are positive. We have been talking about it ever since two positives first got together! We talk about what our responsibilities are to our partners. We talk about when and how to disclose our status to our partners. We talk about rejection from negative partners or people we meet, or the fear of that rejection. We talk about our assumptions, and whether or not it is okay to assume that anyone we meet in a bath house or sex club or "Vaseline Alley" is positive (especially if they say nothing about condoms and beg to be fucked!).
Some of us have repeated for years the mantra, "In every new HIV infection, one partner is positive." Yet almost every single dollar and message spent on HIV prevention in this country is directed at uninfected, negative folks. It as though public health has been trying to fight the spread of HIV with one hand tied behind its back.
Yes, the point is to end the epidemic by preventing any more uninfected persons from getting HIV (as well as curing those of us who are), but the means of achieving this needs to include separate and differing messages for positives and negatives. So the CDC and local health authorities and researchers have begun to realize that it is a very smart and useful idea to devote a portion of prevention funds and some special research and attention to developing effective, acceptable prevention programs aimed at HIV-infected folks.
The new initiative in Los Angeles was developed by HIV+ members and advisors to the Prevention Planning Committee, a body of community members (actively recruiting new members right now, by the way) charged with setting the priorities about how CDC, State and County prevention dollars are used. The CDC announced a competition for $4 million or this new PHIP initiative; the top five states or big cities in the competition were to split these funds. Los Angeles County's proposal, conceived and written by infected people, ranked first in the national competition and was awarded $1 million a year for five years. Because our proposal was so strong, the CDC later found an additional $1.2 million in one-time-only funds and awarded $1 million of it to LA County. Because the funds are only just now being released, the $1 million from 1998 is being combined with the $1 million for 1999 and the one-time-only funds for a total of $3 million. Most of these funds will in turn be awarded to local community-based organizations by competitive bidding, to carry out programs specified in the CDC application.
These programs are divided into three categories: programs to help increase the number of positive persons who know they are infected, and can thus choose to access services; programs to help facilitate the entry into care, any needed social services and emotional support or peer self-help for people who are positive; and support for reducing one's risk of giving HIV to someone else. Together, the programs offer support for living well while playing and loving safely.
The first goal will be addressed by two types of programs. One kind, based on the successful experience of Dr. Wilbert Jordan at the Oasis Clinic, will be to approach current HIV+ clinic or support services clients and ask them to refer or bring in friends and acquaintances who might be positive and should be tested and get some information. The client and the person doing the referring each get a couple of movie tickets as a small reimbursement for their effort, but mostly it is a convenient way for positive folks to tap their social networks for other "likely suspects" without anyone having to say anything about exactly how they relate to each other.
The second program will be to introduce voluntary, anonymous HIV testing and counseling/referral services into gay bathhouses and sex clubs. Exploratory interviewing in these commercial sex environments found that over half the men asked said they would like to have HIV testing available on site and would use it if it were there.
The second category will involve two programs: a 24-hour referral resource to make next-day appointments at an HIV care clinic and/or service organization and to facilitate transportation and accompaniment to get there. Whether a test counselor is giving a positive result to someone who might fall between the cracks if left to deal with everything alone, or whether someone calls who has known about his/her HIV status for awhile but is now prepared "to deal," this pilot project would bring action closer to impulse. The other part of this program would be to create a Positive Buddies program, so that anyone getting a positive test result or reaching the point of action can be linked up with another positive buddy volunteer as an ongoing resource.
A healthy sex life is an important part of "quality of life" for most of us, yet many medical and public health officials would really prefer if we would all just stop having sex upon finding out we are positive. For most positives, it is important to protect others from infection, and it is important to have intimacy and sex. "Just say no" approaches won't cut it.
Therefore, the risk reduction parts of the PHIP initiative combine the issues we all deal with everyday-maintaining medication and wellness regimens, dealing with work or school or retirement, finding intimacy and community and sex-and doing it all safely. One small part of the program will be for what is known as "prevention case management," or assigning someone with multiple life problems that affect their behavior and well-being to a specialized case manager. This is an expensive and rather paternalistic intervention, and is meant for a small number of particular people.
Another part will be weekend retreats, dealing with themes like "Staying Healthy," "Acting Safe" and "Being Together," followed by weekly support/discussion groups for those who want to continue to meet together after the retreat. This idea, expanding on the Shanti PLUS, Afro-Centric PLUS and Vidas Positivas workshops, is to talk about prevention issues within the context of everything that goes into living well with HIV. It is also an opportunity to bond with some other folk, if desired, and make new friendships, support systems and social opportunities.
The third part is a peer-centered program-where PWA-led agencies like Women Alive and Being Alive and Take Action South Central (TASC) can offer drop-in groups that focus on sex and intimacy issues and create alternative ways for positive people to find compatible other positive people for intimacy, friendship and sex. This could include things like Sunday Socials and other social events, "Positive Nights at the Baths" or roller rinks or dance clubs, or drag show bars, Connect!-type personal ads newsletters, special phone sex or date lines, and other creative ideas.
All of these programs, and this whole initiative, have many unanswered questions and some dangers. Will people come to any of these programs? Or are most people now just into forgetting HIV and-crammed with bodybuilding steroids, testosterone patches and Viagra-just heading for the parties and raves and dance bars? Should some of the money be spent on flashy ad campaigns that target those positives who would never come to a special program, in order to help change community norms more fully toward protection? Will this initiative cause some folks to rebel because they feel blamed or shamed? Will Jesse Helms and local right-wingers and anti-positive preventionists attack these programs as "condoning and supporting outrageous behavior?"
For these and other reasons, people with AIDS/HIV must be in the lead on the design, operation and oversight of all of these projects. Hopefully, PWA-led organizations will apply for and win some of the contracts. Beyond that, there will be a Community Advisory Board that will be open to anyone in the community who wishes to help influence and watch over these projects.
Positives just received a hard lesson in how much opposition to prevention for positives there is among prevention arenas in Los Angeles. The Positive Images program is about to be interrupted (or even end) just after it worked through its bumpy start-up period and has begun to involve over 1100 positive people in some form of interaction about sex, intimacy and prevention.
Being Alive's Executive Director, Juan Ledesma, originally conceived Positive Images when he worked at the Gay and Lesbian Center and served on Being Alive's Board of Directors. It is based on telephone chat rooms and peer support groups run by Being Alive, Women Alive, the Gay and Lesbian Center and three other community organizations. People are able to call in anonymously and engage in moderated discussion of issues related to being safe and yet finding sex and love. Many, especially among the women, have then gone on to regular support or discussion groups.
The City of Los Angeles, through the AIDS coordinator's office headed by Ferd Eggan, funded this program for two years. This year, the City cut its prevention budget substantially, and the project could not be renewed. However, it is the County government that has by far the most resources for HIV and is the designated health department. When Positive Images approached the County for funds to continue the project, it met with at best a chilly reception, and outright hostility by some people. The bottom line is that no County funds have been allocated as yet, and this promising project faces shutdown.
On issues like these funding decisions and resource allocations, we will not get a fair shake and a fair share until more positive people start showing up at community planning meetings, get seats on the planning bodies and/or come speak out for programs we need, and that can help stop the epidemic. You can find out more about the Prevention Planning Committee by calling 213.351.8133.
We, meaning all HIV+ folks together, do have the power to end the epidemic. If we use the various strategies available to us (from always using condoms to fucking only other positives to abstinence to stop using risk-enhancing party drugs to paying very special attention to how we act while high, if we use them, etc.) we can ensure that the epidemic stops growing. It is not only our responsibility and opportunity, but it is ours. As the billboards around town have told kids having sex about the risk of pregnancy, "It is 100% our responsibility and 100% the responsibility of our partners." If we build norms within our community, both among positives and between positives and negatives, that promote safety, discourage stigma and rejection and enhance intimacy, we can have fun and full lives while protecting our partners, loved ones and community. It is not simple, but it is a choice. It is ours.
For more information about these programs and issues, contact Walt or Juan.
990701
BA990701
ÆGIS is made possible through unrestricted grants from Roxane Laboratories, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.
Copyright © 1999 - Being Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069 TEL: 310.289.2551; FAX: 310.289.9866; Email: BeiAlive@aol.com http://www.beingalivela.org/
This information is designed to support, not replace, the relationship that exists between you and your doctor.