HIV Treatment Education in 2002

My involvement in the field of HIV/AIDS treatment is the result of a gradual personal evolution. Over time, I overcame mistrust of the medical establishment to accept information about HIV treatment. This ongoing process of accessing, personalizing, and acting on information enabled me to make healthy lifestyle changes and save my own life. In turn, I now pass on this process-oriented approach to empower others living with HIV/AIDS.

I had originally seen AIDS as a major conspiracy to get rid of minorities and swell the pockets of drug companies. I refused antiretroviral medications because I felt I was being used as a guinea pig. My first experience with overcoming my fear and mistrust came from a woman at a methadone treatment program I was attending. Her shared experiences about living with HIV/AIDS and overcoming battles with substance use gave me hope and allowed me to make some healthy decisions about my life. I was able to work through my fear of treatment and begin to trust in the medical establishment. Another valuable decision I made was to develop a relationship with my primary care physician, someone who was understanding, compassionate, giving of her time and who met me where I was at, not where she thought I should be. In 1996, I made a decision to stop using illicit drugs and start treatment for HIV. To this day, I have the same primary care physician, and I have not looked back.

I also decided to educate myself about HIV and its treatments. I was diagnosed in 1988, so I had a lot of catching up to do. Even though I had started treatment and was beginning to trust my doctor, fear still lingered. Trials that had gone bad, such as Tuskegee, and the early treatments for HIV were still in my mind. Education was the answer. My search for information led me to attend HIV conferences, symposiums, lectures, peer training programs and community forums. I started to read everything I could get my hands on. Treatment newsletters like NATAP Reports, ACRIA Update and POZ magazine were valuable sources of information for me and continue to be to this day.

I started getting involved in the HIV/AIDS community. In 1997, I became a member of the Community Advisory Board (CAB) at Harlem Hospital Center. It was here that I was able to learn and share about HIV/AIDS clinical trials. Soon I was nominated and elected chairperson of the CAB. Being a member of this body, I provided valuable input into the development of clinical trials. I learned about the Community Programs for Clinical Research on AIDS (CPCRA), a federally funded research network conducting HIV/AIDS clinical research at clinic-based hospitals. Harlem Hospital's infectious disease clinic was one of the national CPCRA sites. I was asked to represent the CAB on the CPCRA's Community Constituency Group (CCG). My involvement as a CCG member empowered me to become a strong advocate for my community. Along the way, other programs and support groups at Harlem Hospital empowered me to seek out information and understand treatment options.

In 1998, I was asked to participate in an adherence study being conducted at Harlem Hospital Center to evaluate the effectiveness of using peer health educators, case managers, social workers and health educators to help people adhere to antiretroviral medications. I was trained as an adherence peer worker with the Harlem Adherence to Treatment Study (HATS). I learned about all aspects of HIV, its treatments, clinical trials, and how to work effectively with clients living with HIV/AIDS. As a peer worker, I was able to share my personal experiences and knowledge. My commitment to treatment education grew as I learned about all aspects of treatment, from clinical research to adherence skills.

Today, through my education efforts and my commitment to treatment, I am able to give back to my community. As a trained case manager for HATS, I have new skills with which to advocate for better quality of care, more effective treatment, and better management of long-term side effects.

Harry Dohnert is a Case Manager, Columbia University, Harlem Adherence to Treatment Study (HATS), Harlem Hospital Center, CPCRA Community Constituency Group, New York, NY.