HIV Treatment Education in 2002
I began learning about HIV and AIDS in memory of a friend who died from this deadly virus. His death left me confused, sad and angry, pensively wondering for days what could have been done to help him stay alive. As a result, I am now a community-based HIV treatment educator. I started to do this work a year ago with ACRIA. My focus is to educate people living with HIV and AIDS in New York City's underserved communities. I do workshops about current HIV medications, how to manage drug side effects, opportunistic infections, and hepatitis C.
Among other things, I make hundreds of calls a month to community-based organizations in an effort to schedule free group workshops, individual treatment counseling, and offer up-to-date literature about treatment issues and resource listings. Unfortunately, not every organization accepts the offer even when their clients want the information.
The people I educate are from low-income neighborhoods similar to the one I grew up in. Many are caught up in, or recovering from, the vicious cycle of poverty, crime, and substance abuse, which usually also means having a difficult time meeting basic needs like food, clothing, shelter -- and medical care. They often experience little communal life, struggle with a lack of direction, face discrimination, and, not surprisingly, have a difficult time trusting people.
Trying to educate people about HIV treatment issues and hepatitis C has been challenging for me. My main obstacle during this first year has been trying to rid myself of rigid presentation habits, focusing more on my audience instead of the information, and setting realistic expectations for myself.
When I encounter these challenges, I often think of Sherlock. He died while we were together in prison. I recall both of us being 23 years old, talking about Puerto Rican history and politics in an effort to make up for the loss of college programs within the New York State prison system. Our efforts symbolized our conscious willingness to survive within the "belly of the beast." Over a short period of time, this struggle created a bond between us. A couple of days later, Sherlock died from PCP. All I can think of is how young he was, how strong he was, and where he died.
One of my new ways to survive inside was to learn about HIV and AIDS. Eventually, I began giving basic presentations on HIV treatments and the immune system as a member of the Prisoners for AIDS Counseling & Education (P.A.C.E.) program at Sing Sing until I was released.
Ridding myself of the presentation habits that I had developed with P.A.C.E. was my first challenge when I began working with ACRIA. My audience changed, so I had to change. When I was with P.A.C.E., I gave basic lecture presentations to an audience that was consistently present, attentive, and had time to deal with personal issues. So when I lectured about the immune system, my dry talk about T-cells, B-cells and antibodies ruled. There were almost never any disruptions or questions.
When I did my first ACRIA workshop, I immediately knew that the simple presentation style had to go. There was too much going on in the lives of my audience. I saw anger, sadness, depression, and fear on people's faces, which made me feel obligated to learn and understand ACRIA's approach to being interactive with the audience. I began to meet the participants' level of interest and knowledge and allow the discussion to develop at their pace. I tried to engage them with questions and hoped to motivate them to consult with their doctors about beginning, changing, or stopping HIV medications. For the most part, I accomplished this, but I found it hard to accept that some of my audience did not want to deal with doctors at all. I literally wanted to push them into a doctor's office, but I realized that was beyond my control.
After a few months of doing workshops, I thought that I was doing a good job because I was developing an understanding of some of the best approaches to the work. I was so wrong. Yeah, the information I shared was clear, accurate, engaging and more practical, but there were plenty of times I enjoyed listening to myself speak. It felt good because I was developing a better grasp of the information. I would talk about the prognosis of untreated HCV while proudly drawing a pie chart. I would talk about wild-type virus, get into DNA and RNA, and try out newly learned analogies because it was interesting to me. That's when I lost my audience. Eventually, interjected questions stopped me dead in my tracks. "Where do I fit into what you're saying, Carlos?" I felt so irresponsible when I first heard something like this. That's when I realized that I can lose an audience without intending to.
Rebounding from my missteps while conducting workshops is easier than rebounding from missteps while providing individual counseling. Lately I've noticed that I feel as though I am not doing enough for those clients who have a hard time learning and applying HIV treatment information. I'm also not giving myself enough credit for the work I've done with the clients who make it easy for me to assist them. For example, Jane (not her real name) always calls me just before every doctor's appointment to review her situation, informs me about new medications she is taking, change of diet, and inquires about any new information related to her situation. Since the work with her is a breeze and I haven't felt my efforts, I feel as though I've done nothing. On the other hand, here is Mr. John whose hoarse voice makes it hard for him to speak. He never remembers his T-cell and viral load counts, he is always difficult to contact, and misses most of his medical appointments. What do I do? I become emotionally involved and feel as though I haven't done anything for him no matter how many times I call or write to him. Meanwhile, the truth is that there is no way for me to know the exact reasons Mr. John is having problems taking his medications.
The other truth I have to accept more often is that some things are beyond my control. This, of course, means that I have to move forward with my work as an educator. It's not always easy to notice unless someone else points it out to me. But once I do recognize this problem, I can move forward. I am quite sure if Sherlock were here, he would agree.
Carlos Santiago is a Treatment Educator, ACRIA, New York, New York.
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.