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Reclaiming Individual and Community Power

By James Learned

November 2002

Long-time AIDS activists, advocates and educators have witnessed and often contributed to a subtle but significant shift in the way that people living with HIV/AIDS (PLWHAs) are viewed. In the early days of the epidemic, as a reaction to the term "victim," people with AIDS established a self-empowerment movement by fighting to be referred to as just that -- people. These days, even the most sensitive service providers and clinicians are likely to refer to PLWHAs as clients or patients. The difference isn't just semantic. The possessive "my client" or "my patient" implies ownership. It informs the way that power is distributed and the degree to which each individual is allowed to participate in the course of his or her own care.

Providing community-based treatment education is, by its very nature, a somewhat subversive act. Historically, discussion of medical information has been in the domain of doctors and other healthcare providers. As lay people -- those of us without formal medical training -- became empowered to offer each other information about biology, disease progression, medication, treatment strategy, and even nutrition and alternative therapies, it has threatened many providers, public health officials, and even some of our peers. Although many clinicians welcomed and understood community-based treatment education as an integral part of healthcare -- and healthcare as an integral part of life -- others were uncomfortable with what they felt was an usurpation of their authority.

After about 1996, when combination therapy began to result in dramatic drops in opportunistic infections and deaths, many AIDS service organizations started to develop formal treatment education programs designed to help their clients sort through the information and make informed treatment decisions. Funding soon became available from pharmaceutical and government sources, and many, perhaps most, of these treatment education efforts turned into well-intentioned treatment adherence programs. Before long, the focus of many community-based programs became compliance, often at the expense of a respect for the person that had been central to the PLWHA self-empowerment movement. Helping people on treatment develop adherence strategies is important, of course, but an individual is more than the drugs he or she takes.

This reversal in the balance of power continues. Community-based organizations are supposed to serve people with HIV, not the interests of the pharmaceutical industry, the healthcare system or any other authoritative body. Yet sadly, many organizations increasingly infantilize positive clients, treating them like dangerous children who need protection from medical information that could be upsetting or confusing. At some infectious disease clinics, medical providers on staff provide all treatment education -- community educators are no longer welcome. Client workshops are often conducted in busy cafeterias, full of distractions, or in windowless rooms without chairs or fresh air. The disrespect is astonishing. There's a pervasive and unsettling assumption that PLWHAs are incapable of understanding treatment information and making informed decisions. This may be purposeful. Ignorant clients are, after all, easy clients.

This is where the committed treatment educator comes in. Effective treatment educators recognize the whole person. Those of us working and volunteering at the community level can offer true help to people who are confronted by the complexities of HIV treatment decision-making by allowing people to acknowledge and discuss the complicated emotional issues that underlie treatment decisions. Through ongoing examination of available data, we offer individuals a supportive space where they can explore their fears, beliefs and understanding of HIV, the medications, and the healthcare system.

Many researchers, medical providers, and even some government officials understand and support the PLWHA self-empowerment movement. They understand there's plenty of power to go around. They recognize that effective community-based treatment education offers people the tools they need to negotiate the healthcare system, promote their own best interest and gain the power to make informed treatment decisions.

PLWHA self-empowerment has become an overused and much-appropriated phrase. But the power to regain its original, bold meaning is ours. True commitment to community-based treatment education is part of that power.

James Learned is Director of Treatment Education at ACRIA and Editor of ACRIA Update.


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