Treatment Issues: Newsletter of Experimental AIDS Therapies - Volume 16, Number 11, November 2002
Julie Davids and Val Sowell,
Project TEACH, Philadelphia FIGHT

History of Project TEACH
Project TEACH stands for Treatment Education Activists Combatting HIV. TEACH was initiated in Philadelphia in 1995 by Julie Davids and Jeff Maskovsky, two members of ACT UP Philadelphia, working in collaboration with two local organizations, Philadelphia FIGHT and We the People Living with HIV/AIDS, Inc.

Philadelphia FIGHT brought together people living with HIV and other AIDS activists, clinicians, and researchers to sustain a community research initiative and bring cutting-edge treatment and research information to the impacted communities of Philadelphia. Today it is the largest provider of HIV/AIDS medical care in the region. We the People, a groundbreaking PWA coalition primarily led by people of color, was a central force for effective community mobilization in struggles for housing, benefits and inclusion of people with HIV in decision-making processes.

As treatment activists and organizations rooted in the day-to-day experiences of people with HIV in Philadelphia, the initiators of Project TEACH designed the program to move towards the stated goals of people most impacted by HIV in the mid-1990s — current and former drug users, people of color, and women. They felt that crucial medical and HIV-specific information was not reaching their communities, and that they did not have meaningful participation in debates and decisions that impacted their communities. They felt that people were dying because they did not have information that would have saved or prolonged their lives.

Thus, the initial goals of Project TEACH were to ensure that people living with HIV had adequate information to make informed decisions about their health care, had continuing access to information as standards-of-care changed, and could participate in the community advocacy and mobilizations that have shaped the development of HIV/AIDS treatment and care. In order to meet these goals, TEACH has developed a hybrid model of training and support rooted in HIV/AIDS activism, harm reduction, and community building.

Since its inception, Project TEACH has recognized that the potential impact of HIV/AIDS treatment education in hard-hit and underserved communities can be best realized through a process of community building and interactive learning. The initial curriculum was determined by local HIV+ leaders, the majority of whom were African American people of all sexual orientations who were current or former drug users.

What is Project TEACH?
Project TEACH began as a 30-hour, 10-session training. Today, the course has expanded to 17 sessions over a two-month period, meeting twice a week, with two semesters each year offering a choice of day or night classes. In general, these are secondary prevention trainings, focusing on how people living with HIV can stay as healthy as possible for as long as possible by preventing opportunistic infections or other complications of HIV as well as preventing the transmission of HIV to others.

The focus of this instructors' handbook is on the basic principles and beliefs of our program, and how we actualize them in the planning, implementation and follow-up of our trainings. For those outside of our region, it may provide an interesting document for comparison with local programs or spark conversation on new initiatives. If so, we would love to hear your thoughts and ideas.

Overview of Project TEACH Curriculum
Of course, there is no way we could cover all the information someone needs for an optimal life with HIV. Our curriculum is designed to provide:

• An encouraging environment in which everyone learns something and learns that they can continue to learn more once the class is over
  
• A link between community health beliefs and common misperceptions about HIV and its treatment that values community experiences while providing absolutely accurate information at our current level of knowledge
  
• A variety of levels of sophistication of information in key areas, so that people who know very little will not be lost while those who enter class knowing more will not be bored
  
• Teaching strategies and interactive exercises to decrease competition between individuals and to emphasize the importance of people with HIV supporting one another as a community
  
• An analysis of subjects such as prisoners with HIV, needle exchange, and pain management as issues rather than problems. Issues, when used in the context of community organizing, refers to the potential solutions to problems, in which ordinary people play a role in campaigns large and small to change the conditions that impact their lives.

In order to achieve these goals while shoehorning everything into the hours available, we structure our curriculum around four main subject areas: Treatment, Living with HIV, Communication Skills, and Issues and Resources. It should be recognized that in each of these areas, participants learn as much or more from fellow class members as from the lead instructor or guest speaker; each area includes interactive times, work in small groups and pairs, and time for discussion.

Goals within each subject area include:

Treatment

• To gain or share the basic knowledge base on the medical aspects of HIV/AIDS and current standards of care that are needed to participate effectively in decisions about your own treatment.
  
• To recognize that different people have different priorities about treating HIV and will choose from a range of treatment options or strategies, and to recognize the need for people with HIV to support peers whose decisions are different than theirs may be.
  
• To gain or share perspectives on progression of HIV, including monitoring, lab tests and clinical symptoms, while dealing with the frustration of not being able to fully predict what may happen to yourself or other people over time.
  
• To discuss current controversies and debates about HIV treatment — such as superinfection, when to start treatment, or structured treatment interruption — in order to participate in discussions, understand the range of perspectives of care providers, and to gain information for making your own decisions.
  
• To understand the history of AIDS treatment activism, how it has influenced current treatment options and strategies, and how to participate in ongoing treatment activist issues and campaigns.

Living with HIV

• Learning and sharing the balance between living life fully and being cautious in order to preserve or prolong health.
  
• Understanding key symptoms or indications that call for immediate care or going to the hospital.
  
• Discussing the benefits and challenges of disclosure, including the recognition that it is each individual's right to determine the level of disclosure that works best.
  
• Managing the anxiety and stress of dealing with the ins-and-outs of this disease.
  
• Managing the stress of this curriculum — learning new information about "what could go wrong" or "what we're not really sure about" is stressful.
  
• Coping with the often confusing or frustrating information obtained from doctors and other service providers, including learning from people who have handled similar situations.
  
• Discussing the advantages of working together as a community rather than as isolated individuals.
  
• Exploring next steps as an activist, recognizing that everyone has qualities that are useful and can develop new skills to help change conditions that impact yourself and your communities.
  
• To continue learning and developing as individuals and communities by identifying future directions to explore after the course ends.

Communication Skills

• To learn how to communicate your needs effectively.
  
• To learn and improve skills for communicating with care providers and gatekeepers that can stand between you and what you want or need.
  
• To strategize how to enhance and/or change your relationships with doctors, health professionals, service providers, family members, other people with HIV and community members you might come into contact with.
  
• To learn how to hear people who make us uncomfortable and to find ways to respectfully discuss topics that bring up strong feelings.
  
• To learn, practice and improve listening, understanding and responding skills.
  
• To recognize the potential problems with giving advice or assuming that other people with HIV will benefit if they do exactly what you did.

Issues and Resources

• To expand understanding of HIV/AIDS as not just a medical condition but something that is political, social, and economic in its personal, community and societal implications.
• To review key moments in AIDS activism and community mobilization, often integrated into the curricula based on the gains of these movements (such as the expansion of the definition of HIV/AIDS to include conditions prevalent in women or injection drug users.)
• To learn when and how to access area services, by learning key resources and strategies for accessing services, rather than simply reviewing long lists of AIDS and support organizations.
• To recognize that people may not respond in the same ways to controversial issues as you do, and to deal with that respectfully.
• To agitate for your needs if you are not getting the health care or services you deserve, and how to advocate for people with HIV in the hospital, prison, or other controlled settings.

Priorities of our curriculum are:

Self-determination: People have a right to know what's going on with their bodies, and to understand what their doctors are recommending and why. Each person should be able to make decisions about their health care that take into account their health beliefs, priorities, and goals.

Social and political realities: HIV/AIDS is a political condition — people with HIV in the United States are often from politically marginalized groups, such as people of color, drug users and queer people, that have not controlled major resources in our society. Thus, individual, community and societal opinions and treatment of HIV/AIDS is affected by the racism, sexism, homophobia and class bias that is pervasive in our nation. Our curriculum and standards reflect the lived experiences of people impacted by HIV — we do not gloss over the impact of bias, stereotypes and neglect that have shaped our society's response/lack-of-response to the epidemic. In addition, we talk explicitly about the possibility of bias, the impact of stereotypes, and horizontal hostility (when people act more aggressively towards members of their own peer or racial group) in the classroom, and ask people to actively resist these pervasive ways of relating to one another.

Power: Power is the ability to make things happen, and is present in all levels of dealing with HIV. People who go through Project TEACH are encouraged to use their power to participate in their health care and have a voice in decisions that impact themselves and their communities. If their doctor does not want them to participate in their health care, we ensure that they have the skills to access a better provider. We also take people through a process of recognizing that the skills they have developed in their daily lives — as a church member, a mother, or if they are "out there" using — can be potent tools for increasing the collective power of people with HIV and their communities and to win meaningful change in their lives.

Community Solidarity and Mobilization: People living with HIV are not victims, and the course of this epidemic has been actively altered by the mobilization of people living with HIV and their loved ones. We seek to embody in our curriculum, pedagogy and policies a spirit of collaboration rather than competition, and encourage people to participate in community mobilization on issues they care about.

Learnable materials: The activists who became experts in HIV treatment were self-taught. Although many well-known leaders in treatment education and activism had the benefit of advanced education that has not been within reach of most TEACH members, we have seen that TEACH members can, and wish, to learn sophisticated treatment information. We emphasize concepts and philosophies of treatment, rather than going through the dosages, side effects and details of each drug, in order to help members develop a framework of understanding into which they can add new information from fact sheets, articles and workshops as our knowledge base extends.

In addition, we work to make information understandable without "dumbing it down," by trying to use accurate, clear, non-technical language and by repeating key concepts and information at multiple points in the course. Homework readings and interactive exercises give additional opportunities to learn essential information.

Spreading the word: On the first day of class, each Project TEACH student is given the goal: "Each 1 TEACH 10." People need to take this lifesaving information back to their communities, their families and friends and to their networks. They can reach people that TEACH or Philadelphia FIGHT never will.

Themes Articulated by Project TEACH Instructors

The curriculum of Project TEACH was developed over the years by people rooted in the experiences of living with HIV and/or participation in AIDS activist struggles. Thus, our materials and approach show the results of a dynamic process that is not based in traditional education methods. We have found it useful to analyze our curriculum based on what we have ended up with, rather than methodically working to develop materials to meet well-defined goals and objectives. We have found that we tend to emphasize several overarching themes throughout the term. Some of these themes find their way into formal curricula; others exist more as oral histories of the matters that have been most important to hundreds of class participants.

Living Well with HIV

• Unnecessary suffering is unnecessary. You should have a good life. You can't pay back past behavior that you are not proud of through suffering today.
• Honor people who've had deep health challenges.
• Really early, address the tyranny of the healthy. There will be people who've been HIV+ for years and are healthy now, and sometimes they have a tendency to castigate people who are sicker, saying, "You just need to take care of yourself and you'll be okay." Don't let it happen in the class.
• Everybody's body is different. Find new ways to say that.

Activism and Empowerment

You should stick up for yourself (in the doc's office, in the community, within ACT UP), and there are many skills you can learn to help you do that. It's up to you to decide what works best for you.

But it's important to recognize that what you face is not simply a struggle to get what you need in a confusing but basically fair system. Often the system is not fair. Sometimes, those in power make bad policies intentionally, either because they would rather hurt people with HIV and their communities than alienate their campaign funders, or because they have personal beliefs that further stigmatize or discriminate against people with HIV, people who are gay/lesbian/bi/queer and/or transgendered, and against poor people or people of color.

HIV is political, and often there are political decisions that impact people's health. We need to fight for what people need as individuals, but remember that we have also successfully fought to change the larger systems that create these barriers to individuals getting what they need — and that is why we continue to need activism and organizing and education.

This is not a complete set of curricula. We have not produced a stand-alone training manual for use as curricula, although we have included several interactive exercises as examples in a longer document. In fact, we support the proposal for treatment activists and treatment educators to produce an independent set of core treatment curricula in the public domain, and would eagerly participate in that process. However, our existing curricula is available if you contact us — in general, we prefer to have technical assistance agreements with organizations when we share our full set of curricula.

For more information, contact:
Val Sowell, Project TEACH Coordinator:
vsowell@fight.org
(215) 985-4448 x163

20021110
GM161102

Copyright © 2002 - Treatment Issues. Reproduced with permission. Treatment Issues is published twelve times yearly by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. GMHC Treatment Issues, The Tisch Building, 119 West 24th Street, New York, NY 10011  fredg@gmhc.org  http://www.gmhc.org

AEGiS is made possible through unrestricted grants from Boehringer Ingelheim, iMetrikus, Inc., the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 2002. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2002. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content.