HIV Treatment Education in 2002
Reclaiming Individual and Community Power
Long-time AIDS activists, advocates and/or educators have witnessed and often contributed to a subtle but significant shift in the way that people with HIV/AIDS (PWAs) are viewed. Early in the epidemic -- until the mid-'90s -- people with HIV usually referred to themselves as just that -- people. Now, even the most dedicated and sensitive service providers and clinicians are more likely to refer to PWAs as their 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 PWA is expected and, sometimes, allowed to participate in and decide the course of his or her own care.
Each contributor to this issue of ACRIA Update offers distinct ideas of what constitutes effective treatment education, but the commonality among their perspectives is striking. Avoiding the temptation to reduce individuals to a CD4 count and viral load result, they recognize that each person with HIV is a distinct human being with different needs and desires who makes different choices depending on his or her personal experience and circumstances. Class, race, ethnicity, gender, economics, life experience, and a host of other factors inform an individual's treatment decision-making process as much as -- often more than -- information about HIV and treatment. In their varied ways, these educators challenge a power structure that prefers to pigeonhole people with HIV as one faceless mass, to be dealt with in pretty much the same way regardless of huge individual differences.
Long before the phrase "treatment education" was used, communities devastated by AIDS challenged power to save the lives of themselves and those they loved. Early in the epidemic, PWAs and their colleagues took their cues from the women's health movement, learning everything they could about the virus and the mysterious, deadly opportunistic infections that were occurring. People who had understood nothing of basic biology in school educated themselves about the intricacies of the immune system, read and critiqued the results of clinical trials, and shared what they learned with their community. With some notable exceptions, those in power -- people within the healthcare system, private industry, and government, including public health -- showed little interest in ending an epidemic that affected "expendable" communities -- queers and junkies.
With little support, desperate PWAs looked into any and every treatment with even a hint of potential. In hindsight, some of these treatments seem ridiculous, even harmful. But as we continue to learn more about HIV, some currently accepted treatment strategies might, in the future, seem equally ridiculous. We can only know as much as we know. Our current understanding will evolve. We've made enormous progress over the past two decades, largely thanks to self-taught community members' involvement in the research and education process. As treatment educators, realizing the limitations of our knowledge can be humbling. The trick is to not allow intimidation to keep us from studying, questioning, learning and sharing treatment information within our communities.
1996 was a pivotal year in the history of HIV treatment. The approval of protease inhibitors, the relatively uncritical acceptance of the hit hard, hit early treatment model, the hopeful theory of viral eradication, and optimism about the promise of combination therapy suddenly made treatment issues both clearer and more complicated. In many respects, ownership of HIV disease was taken from PWAs and claimed by the medical establishment. Previously, treatment information was disseminated to the community mainly by the community -- through PWA coalitions, buyers' clubs, ACT UP chapters, newsletters like AIDS Treatment News, and organizations such as Project Inform, Treatment Action Group and many others.
With the complexities of combination therapy, AIDS was redefined as almost exclusively a medical issue. The medical model took hold as healthcare providers and public health officials couldn't imagine that patients could understand Highly Active AntiRetroviral Therapy (HAART) and the attendant diagnostics. There were lots more drugs, with difficult-to-pronounce names. Too difficult for your average PWA. The goal was to convince people with HIV to get on -- and stay on -- combination therapy. The focus became compliance, as though compliance was the only variable in the success of treatment for each individual -- and as though treatment was necessarily the best choice for everyone.
As combination therapy resulted in dramatic drops in opportunistic infections and deaths, various organizations developed formal treatment education programs to help 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 programs turned into well-intentioned treatment adherence programs. Now, the focus of many community-based programs was also compliance, often at the expense of the whole person philosophy that had been integral to the PWA self-empowerment movement of the 1980s and early '90s. Helping people on treatment develop adherence strategies is important, of course, but an individual is more than the drugs he or she takes.
The dramatic shift in the balance of power continues. The power that the PWA community fought for and gained over so many years rests again primarily with the healthcare system, private industry, and government. This isn't to say that we haven't gained allies within these powerful entities. Many researchers, medical providers, and even some government officials understand and support the PWA self-empowerment movement. Power is not finite. There's plenty to go around. 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. Treatment education isn't about specific treatment courses that a person should follow. We can't know what's best for a specific individual. We offer information and support shaped directly by the needs of the individual, not those of the healthcare system. The ideal goal of treatment education is an empowered, informed individual.
Providing community-based treatment education is, by its very nature, a somewhat subversive act. Historically, discussions of medical information have been the province of doctors and other healthcare providers. When lay people -- those of us without formal medical training -- offer information about biology, disease progression, medications, treatment strategies, even nutrition and alternative therapies, it threatens many healthcare providers, public health officials, and even some of our peers. Although many clinicians welcome and understand community-based treatment education as an integral part of healthcare, others are uncomfortable with what they feel is a usurpation of their authority. After all, ignorant patients are easy patients. You tell them what to do and they don't ask pesky questions or make demands.
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. While agency employees at some AIDS service organizations meet in comfortable conference rooms, client workshops are conducted in busy cafeterias, full of distractions, or in windowless rooms without chairs or circulation. The disrespect is astonishing. There's a pervasive and unsettling assumption that PWAs are not worthy of basic, human respect, incapable of understanding treatment information and making informed decisions. This may be purposeful. Ignorant clients are, after all, easy clients. Again, no pesky questions or demands.
This is where the committed treatment educator comes in. Clinicians and people working within traditional social services can be our partners in offering whole-person care. 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. Ideally, we allow people to acknowledge and discuss the complicated emotional issues that underlie treatment decisions. Our work is based on a firm belief in survival and deep respect for every individual's decision-making process. Through ongoing examination of available data, we offer individuals a supportive space where they can explore their fears, beliefs and understanding of HIV, medications, and the healthcare system.
PWA self-empowerment has become an overused and 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 and Editor of ACRIA Update.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.