HIV Treatment Education in 2002
My interest in treatment for HIV started in 1986, when I decided to do something about this thing called AIDS that was ravaging my life. My friends and my community were being hit hard. I got involved with the Gay Men's Health Crisis and quickly became co-captain of the New Jersey Team. HIV devastated me, causing me to throw myself into the work of advocacy. So much was not available in those early years. It was a fight to get even the most basic service. We've come a long way since then, and it has been personally fulfilling to see what one person can do to make change happen.
From the beginning of my personal journey in this work, my interest was always in how to get people treatment. Like many others, I was desperate, looking for anything that could even remotely help. I researched alternative healing, visualizations, nutrition, herbs, and vitamins. I involved myself with underground meetings with advocates and a few scientists to discuss treatments that were being used in Europe and how to get those drugs here in the US. I attended the first meeting of the newly formed ACT UP. I looked for anything to get help regarding treatment.
Today, I work for the Hyacinth AIDS Foundation in New Jersey as a treatment advocate/educator. I include the word advocate along with education because I have found the combination necessary to see clients achieve their goals of understanding their options and receiving better treatment. I hold educational forums, have small group interventions and do one-on-one counseling with clients -- all aimed at informing them about HIV and treatment options so that they can achieve overall better health.
I am a person with AIDS. This has proved to be valuable in this work. It instills a sense of confidence when clients know that I've been where they are and can relate to their lives. With that comes the responsibility to offer clients current information and not my own personal experience. Many people come to me because they know I'm a long-term survivor. Thinking I have the magic formula, they often ask, "What are you taking?" I let them know that my particular success was in taking the medications as prescribed and having a good partnership with my doctor, which allowed me to discuss what was happening to my body and adjust my treatment. I tell them that this is also possible for them.
What I find works most effectively is providing information in a way that is easily understood and meeting a client where they are -- their language, their life situation, their needs first, not mine. An example: A client is referred to me because he needs to begin new medications and wants information about side effects. When I meet with him, I learn that he has just gone through a break-up with his life partner. He's crying and totally distraught. My goal was to talk about side effects, but if I were to do that and not address his immediate need to talk about the break-up, what will I have gained? I will have accomplished nothing. I will have lost his trust, and the client will have walked away with nothing. Handling the immediate problem first allows learning to happen.
Another important tool is repeat visits. A one-time intervention is just that. What really works is follow-up calls or sessions that continually reinforce treatment goals. Treatment is constantly evolving over time. Clients need to be able to discuss these issues with us -- and we need to be available.
HIV treatment works and it is complex. People need to understand what is or may be happening to their bodies. Only then can they make informed decisions that lead to long-term treatment success.
When clients "get it" you know your work is good. The feeling that you get is so positive. Giving people what they need to better their lives and live well is entirely rewarding to me. Seeing people go from being very sick to health or never getting sick from HIV -- wow! I was around when that was not the case. We have the tools to see people live with HIV. It is our duty -- our joy -- to do this important work.
Anthony Salandra, C.S.W. is a Treatment Advocate/Educator, Hyacinth AIDS Foundation, Fort Lee, New Jersey.
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.