Being Alive Newsletter - April 1999
Juan Carlos Ledesma

There are really two answers to the question. The short one is that Being Alive has developed a focus on what services it is best qualified to provide in the future, which is the focus of this article. The long one is that we have to take the next few weeks to develop a mechanism by which our members, staff and Board help us refine that focus.

Herein, then, are our initial ideas for the three areas of expertise which Being Alive will continue to focus on and partner with our community colleagues on:

1. Advocacy

As an organization of, by and for people with HIV and AIDS, Being Alive is uniquely qualified to bring a face to the policy discussions and debates currently facing our community. As an independent consumer voice, Being Alive's perspective is something that has been increasingly absent from the public policy landscape in Los Angeles-and we need to remedy that. Our advocacy work needs to occur on both an individual and an organizational level. Individually, we must continue to educate people with HIV about their treatment options and their rights as consumers of HIV services.

Organizationally, we must continue to articulate our community's needs before legislators and policy makers that make decisions about our future by establishing laws and funding priorities which impact our lives. Our work in the policy arena is Herculean in scope. It is not something which will or can be accomplished by a handful of individuals but rather by the mobilization of people living with and impacted by HIV disease. For example, as I write this, a community debate about HIV surveillance and names reporting stands to divide our provider community. Curiously, the perspective of people living with HIV has been largely absent or silenced in the discussion, which has been treated as more of a public health issue than as an issue which has the potential to deter countless thousands of individuals from testing and treatment, regardless of the public health community's assertions to the contrary. As an infected community we need to ensure that our real-life perspective is part of the equation-and I mean all people living with HIV, especially those at the greatest service disadvantage-so that our feelings in favor or against a certain type of surveillance system is considered.

This is only one issue, but I point it out because it is a clear example of how these things can tear our community apart when we should be joining together to fight the greater battles around equality to access to care and the self-determination of people living with HIV.

Being Alive hopes to be able to create opportunities for community dialogue on issues like this in the coming months. More importantly, we hope to develop our role as the consumer voice of people with HIV in Los Angeles by arming people with information about their treatment choices and options. How do you find a good provider? What are my rights as a patient? We hope that Being Alive will be a source of information and empowerment to you around these and other types of questions.

2. Quality of Life

OK, so people are telling us we're going to live longer-but what exactly will that life be like? While the term quality of life often seems overly vague and broad to me, it nevertheless encapsulates an area of peer-led programming which continues to be at the heart of what Being Alive is known for. Our peer-led support groups, our Sunday Socials, our activities-all of these are geared towards improving an individual's quality of life by breaking through the isolation which is so common and can be so devastating.

I also believe that being well-informed can improve your quality of life by arming you with information that helps you make informed choices. To this end, our medical updates, and this Newsletter will continue to serve the dual purpose of education and improving quality of life.

3. Positive Leadership in HIV Prevention

Let's be clear-half of every new infection is a positive person. Amazingly, in spite of the millions of dollars that have been spent on preventing the spread of HIV, little has been targeted at helping people already infected to build the skills, indeed the leadership, to help themselves prevent new infections. Instead of being encouraged to develop self-disclosure and communication skills, we've been depicted as careless or even criminal. Worse yet, the prevention movement has seen us as a lost cause since we're already infected.

We at Being Alive know that this is a thorny issue. Yet as a community of infected individuals, we know that we have a role, and an important one at that, in preventing the escalation of the epidemic. Our goal is to create environments where discussions around issues of self-disclosure, post-HIV sexuality, post-HIV self-image, etc. are the norm and not the exception. There is enormous room for growth in this area and we intend to play a vital role.

In the coming months, we'll be providing more specific information about our work in each of these three areas. I encourage all of you in the community, positive and negative, to share your views with us. We can't do any of it alone, but with your help, we can accomplish miracles!

See you in May!

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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/