Towards an HIV/AIDS Health Education Movement

What is treatment education, really? Seminars, peer education, workshops, "one-on-ones," adherence counseling, training programs? Pamphlets, articles, interactive exercises, pens with drug company logos, occasional trips and free lunches? Military metaphors, biology lessons, tearful confessions, and cultural clashes? Struggling rural programs, industry-sponsored inspirational speakers, small armies of underpaid urban peer educators? Certainly it involves health, hope, fear, controversy, elephants-in-the-room, conflict, doubt, and lest we forget, illness, disability and death.

What we now call treatment education began to bloom when life-and-death AIDS activism born in the 1980s collided with the downpour of Federal and pharmaceutical funding that opened up after truly effective therapies became available in the mid-'90s. To me, activism means working together to question conventional wisdom, and working to change systems, as well as individual situations, through strategic analysis and action. Treatment education started out as, and often remains, an offshoot of activism. At a time when there were no good options, people with HIV and their loved ones fought for scraps of information on any promising therapy. And when they saw promise, they fought for access to those options.

These days, treatment educators may be self-trained people with or without HIV, community organizers and activists, people with social work degrees, street-smart current or former drug users, church folks, and occasionally, people with scientific or medical backgrounds.

So we're a mixed bag using mixed resources, but we're almost always overworked and overwhelmed by the challenges. On the one hand, we need to know our content cold -- from drug interactions to how to get through to stubborn doctors. On the other hand, we need the skills to swim and not sink in the world of people's real lives, where lack of information can pale in comparison to the lack of food, safe housing, emotional stability, or even, in the case of an increasing number of incarcerated people with HIV fighting for their lives behind bars, lack of freedom.

With all these demands, there's little time or room to take a step back and look at both hands at once, to grapple with the multiplicity of issues, to learn from other educators' experiences, and check-in on the many emotional, logistical, financial and ethical challenges of dispensing unbiased information that may prove to be wrong a few years later. Throw in the need to deal with the structure, funding, and politics of our programs, and the race to keep up with an ever-changing, complicated realm of scientific and social data that can save or change lives, and our stress is understandable. Treatment educators may not always agree on methods or even message, but there is one commonality: we all seem to share a passion for the work -- maybe because it's just too difficult to do without being driven by passion.

Why Treatment?

The Fall 2002 issue of ACRIA Update is admirably dedicated to telling the stories and strategies of a diverse group of 14 treatment educators (www.acria.org). The issue is prefaced by a moving analysis written by editor and long-time treatment educator and activist James Learned, on the troubling transformation of treatment education from an initiative carried out by a community for itself, to a client-focused service that is performed for patients. He writes:

"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 [people with AIDS] 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."

What does it mean as treatment education becomes increasingly professionalized and formalized? What does it mean as the work is carried forward by a new generation of people who may be very capable but did not live through the early years when information and education were inextricably intertwined with advocacy and activism? For one, it may make us particularly vulnerable to fetishizing antiretroviral therapy as the core concern around which all other educational topics must orbit. Learned continues:

"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 because healthcare providers and public health officials couldn't imagine that patients could understand Highly Active AntiRetroviral Therapy (HAART) and the attendant diagnostics. ... 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."

I wonder if we should ask, does our definition of ourselves -- treatment educators doing the treatment education thing -- help prioritize treatment as the be-all and end-all of decision-making and living with HIV? Could we adopt something more neutral? A friend recently suggested the bold move of reframing what we do as simply "HIV/AIDS education."

At a time when a list of potential drug side effects or toxicities can look strikingly similar to the risk factors for heart disease, it seems unwise to not invest in combating the other risk factors -- like smoking -- that have not necessarily been within our area of expertise but have a profound effect on the health of people living with HIV. But treatment education is too often disconnected from mental health education and care, and we are rarely trained to understand our role in working with people with moderate or severe mental health conditions. I have yet to hear of an HIV/AIDS organization with a systematic plan or resources to address the very high prevalence of smoking among people with HIV.

Hard Core Curricula

We have all seen industry-produced materials that offer easy-to-grasp explanations of antiretroviral resistance or handy tips for adherence -- and sometimes they are very good. But they almost always come with subtle or not-so-subtle biases and omissions. Not surprisingly, the basic message is often to "start consuming drugs and don't stop."

So here's a challenge: where is the community's stylish kit of reality-based information for treatment educators working with groups and individuals? There are many great resources out there at varying reading levels and formats, like some of the fact sheet series that are rigorously reviewed and frequently updated, or articles from treatment activist journals such as this one. But these are not the same as a set of sexy materials with a teaching guide ready for use by an overworked "adherence counselor" in a busy urban hospital. Or by a community volunteer running a support group in a rural area who can't quite figure out how to lead a useful discussion on the contradictory information floating around about structured treatment interruptions or lipodystrophy.

Lately, I have been talking to just about anyone who would listen about my desire to see a core curriculum developed that's been shaped by treatment activists and designed by the kind of cool people who know how to make educational materials interactive and fun. The curricula would offer treatment educators a starting point that could be adapted for our many and varied efforts. Imagine bringing together a group of treatment activists and educators to brainstorm a set of core curricula that is absolutely accurate, doesn't gloss over the real contradictions and controversies, and offers engaging ways for individuals and groups to struggle with this information rather than passively receive a lecture. Of course, a good set of core curricula would cover the basics in a way that is not overly reductive and would remain infused with a spirit of community activism and history (and, I'd hope, is not too dependent on military metaphors). The writers would also recognize that many people do not read at a high level of literacy or may not be accustomed to relying on written information when making major life decisions.

I also think it's time we talked about the working conditions endured by members of the "profession" of treatment education. I have met with dozens, if not hundreds, of peer educators throughout the years who are doing the Lord's work for a stipend or maybe just public transit tokens -- with no sick time or vacation pay, no chance of switching to the agency's benefits rather than relying on Medicaid, no emotional or professional support given the intensity of the work, and no possibility of advancement to full-time. And it's no picnic either for the folks with full-time jobs, who do hundreds of presentations a year to people with often overwhelming needs for additional information, support and interventions with medical providers.

So let's keep writing and talking and educating ourselves and those we work for, not worrying if we are getting it perfect, but striving to get a little further along in the constant struggle with this lousy epidemic in our less-than-perfect world.