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A Journey Through New Treatment Options

April/May 1998

Protease inhibitors ... Combination therapy ... Viral load ... Cocktails ... When I first started to hear these terms in the newspapers and on the evening news I thought, "Here we go again." As time passed and it became clearer that our health care system may in fact have some new strategies for combating the virus, I started to take things more seriously. As Director of Education and Outreach at Bronx AIDS Services, I felt it important for me to begin reading and talking with people concerning these new developments. "Okay, so now they've come up with this new thing called protease. Protease, if I understand this right, is supposed to lower viral load." I began trying to put the pieces together. "And viral load can tell me how much HIV I have in my body." The pieces were beginning to fall into place. But the information came fast and furious and seemed to change just as quickly. "Okay, protease works but it has crazy side-effects. What's this cross-resistance stuff? Cross-resistant to what? HIV? AIDS? T-cells?" That's when frustration started to set in. "In six months we'll be talking about some new stuff, so why bother."

I went back to doing my workshops and reports at the office, while passively keeping an ear or eye out for any conversations, papers, articles, or conferences on protease inhibitors, or other new information related to treatments.

One week later, the question was asked. "Mr. Quiñones, what's this protease stuff I keep hearing about?" The person wanted to know everything. I expected to be asked this question, eventually. What I didn't anticipate was the reaction of the class. People who had been nodding suddenly awakened, annoying cross-coversations abruptly ended, nobody needed to smoke or go to the bathroom. This was my fifteen minutes of fame. All eyes were on me. I cleared my throat and said, "Yes, I heard it in the news too. From what I've heard it's supposed to help fight the virus." Seven years of working in the field, and that was the best I could do?

The first thing I did was start to read anything and everything I could get my hands on. I talked with my co-workers, trying to learn as much as I could. Finally, I came across something from the PWA Health Group. I called, and we scheduled a date for a workshop. They came; we learned. The most significant thing we learned was that we needed to learn more. Also, if we (the management) of an AIDS organization were struggling to make sense of all this new information, how were clients, case managers, and other line staff coping? Could they define a combination cocktail, or a viral load, or an antiretroviral? Could they pronounce Crixivan?

We pooled all our collective knowledge. Anyone with an understanding about protease inhibitors became a resident "expert" on it.

We tried to keep our treatment education project, and our goals for it, simple. We focused on the fundamentals like vocabulary (antiretrovirus, viral load), treatment strategies (low viral load and high T-cell count = good; high viral load and low T-cell count = bad), and communication. We sought to demystify the medical jargon, to make the information accessible, to target specific populations (people living with HIV or AIDS), and to include service providers.

Using a four-day training module titled "HIV Test Counselor Training," we conducted staff presentations and used a variation of this training to design a curriculum for clients that would address all relevant treatment education options. Ideally, we want our presentions to accomplish the following:

  • Increase literacy about treatment options and strategies available to HIV-positive people.

  • Increase awareness about the relationship between opportunistic infections and viral progression, and the importance of preventing opportunistic infections.

  • Provide participants with tools for communicating with a health care provider.

Underlying these objectives was our desire to change "standard" treatment models. Traditionally, most of us are conditioned to defer to the evaluations, assessments and prognosis of the medical establishment. HIV is different. Many doctors are still learning about the virus and it's modus operandi. Consequently, HIV has created a situation where the patient is, in some cases, as knowledgeable as their primary care provider. This change in the doctor-patient relationship begs the question: Who's in charge? Is it the doctor or the patient? The answer is as startling as it is logical: the patient. After all, the patient has lived with his or her body longer than the doctor may have studied medicine. They are the ones who have to live with the pills, unpleasant side effects, and possible setbacks. They are the ones who have to live with HIV. People living with HIV must be encouraged to take ownership of their own bodies, and this is what our treatment education programs discovered and support.

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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