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Treatment Information: How It Becomes Power

April/May 1998

Since the beginning of the AIDS crisis, education has had an important role: first in the dissemination of information on safer sex practices, and then in the efforts to teach people living with HIV about preventable opportunistic infections, nutrition, and alternative therapies, just to mention a few topics. Later on, in the early nineties, we had to face the fact that, despite our most sincere efforts, education wasn't enough if we wanted to have long-term success in preventing new HIV infections among the young, and making a dent in the incidence of opportunistic infections among underserved populations living with HIV. The goal of effective HIV/AIDS education had to go beyond what had been traditionally considered the educational sphere, and reach from the psychological and psychosocial into the economic, cultural, and even linguistic.

Since 1996, Australia, Canada, some Western European countries, and the U.S. have seen what amounts to be a true paradigm shift in treatment options and standard of care available to many people living with HIV. Nonetheless, treatment educators (a term which, by the way, was not commonly used before 1996) are only starting to make the connection between what had been learned in pre-combination therapy HIV/AIDS education (that information was not enough) and the task ahead of us, that treatment information is necessary, but by no means sufficient.

Information Overload

An overabundance of information can be quite problematic for a variety of reasons. Anyone involved in simply getting acquainted with the basics of all new developments is bound to feel overwhelmed. We need to talk about very complex and complicated issues when most of us are not used to medical jargon. Every time a new medication becomes available (via clinical trials, expanded access or FDA approval), there is an exponential growth of information, since antiretroviral agents should be used in combination.

Despite the fact we have a lot of information, paradoxically, we don't have enough information about resistance and cross resistance, the feasibility of HIV eradication, and especially about adherence. Although adherence is a vital issue for those who are considering or currently taking available HIV therapies, adherence is not enough, but as it stands now, it is all we have.

Recently released scientific data seem to suggest that there is much more cross resistance among all protease inhibitors than was first thought, and that if a first combination therapy fails, the second will probably not be as potent as the first. On the one hand, this raises the stakes for adherence considerably; on the other hand, taking into account how difficult it is to have long term adherence to such complex regimens, it also points to the fact that we actually need better and more forgiving therapies.

You've Got It. What Do You Do With It?

Body Positive's Treatment Education Project provides ongoing classes on a variety of topics ranging from the Basics of HIV Disease to the Importance of Adherence, and is committed to being both modest and ambitious in its goals. It is modest in terms of the amount of information it provides, and ambitious because we believe that we can be partners in helping consumers be informed decisionmakers.

In our Treatment Education Project, specific basic treatment information is covered (e.g. protease inhibitors, viral load, etc.) but the participatory aspect, coupled with the cultivation of critical thinking skills is particularly central. Our program is instrumental in nature: it's focused on providing tools for decision making.

In today's world, the Internet makes it possible to access information at incredible rates of speed (please see the article on Body Positive's Electronic Treatment Education Program); however, how quickly this information is accessed means very little if one can not critically evaluate whether a given piece of scientific data is relevant to one's personal circumstances. This is key to improving one's quality of life and making effective decisions concerning treatment matters. It is in moments of crisis (e.g., when switching HIV therapies) that critical decisions are made. Interestingly enough, both "crisis" and "critical" are related to the Greek word for "to judge or make a decision." Our treatment education aims at reuniting these two words into action by enabling consumers to make critical decisions in moments of crisis, based on sound judgment and solid information. Hey, isn't that enough?

Back to the April/May 1998 Issue of Body Positive Magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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