NOTE from the Editor: The Well Project is thrilled to be working together with AIDS United as a part of their "Access2Care" initiative to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C. The A Girl Like Me blog posts on access to treatment will be cross posted on the AIDS United blog here.
"What are some of the barriers to accessing HIV care have you experienced in the place you are from?"
The insurance company assigned an infectious disease specialist (IDS) as soon as I was diagnosed. My husband and I requested that we went to a doctor that wasn’t near our house. At our first appointment, my doctor told us that we had about 2 years to live. I left the office and got a new doctor. It wasn’t necessarily the barrier to access it was the stigma of going to a doctor in my town. We lived in a small town of 17,000. My husband and I went back to our primary care doctor and asked him to follow our case. He monitored our lab work every three months—which was more like six months. When we were diagnosed we didn’t have any symptoms so I didn’t see the need to see him more often. We still drove 80 miles one way to see a doctor.
It wasn’t until I got pregnant with my youngest child that I saw a IDS. I still drove 80 miles one way to see this doctor.
"How have you overcome those barriers?"
After over 10 years of traveling to go to my doctor I looked for specialists in a nearby town. This town was half of the distance and my insurance company agreed to cover this doctor even though they were out of our plan coverage. I talked to my husband and told him that this doctor’s office was attached to other offices and not only to infectious disease, he agreed to go. (I think he was tired of the drive too).
Since we made the move to the new doctor I have been more compliant with my laboratory work and doctor visits. I am not afraid of running into people we know, and if we do there are many other doctors in the building.
"What made you want to start learning more about/taking action in the fight against the HIV epidemic?"
I was not fighting this epidemic; I was surviving it by ignoring that it existed. I would get up every day and live my life. I kept myself busy with my children’s sports activities (I wouldn’t just attend, I coached and became a board member for 10 years), my work, my schooling. Even though I was extremely busy, I felt so alone. I couldn’t talk to anyone about this disease in fear I would alienate myself and my family. I finally needed to reach out and looked online to find others like myself. I just knew there had to be other women I could talk to. I never thought of myself as an activist in the fight against HIV. I was in this for myself, this was self-preservation. I didn’t know there were other people like myself. I needed to connect with others so I didn’t feel so alone. (See Jae's blog: Hello! I have HIV!!)
“What were you expecting to learn about today that you didn’t know before you came to IAC?”
I really had no expectations from this conference. I really didn’t know what to expect. I was surprised. I met some really strong women that had the courage to stand up and speak openly about HIV. I met Ms. Plus America (Michelle Anderson); she is living and surviving with HIV. She is an inspiration to me. She is making a difference in so many lives and I hope I will be able to make a difference too.
“What did you actually learn from your experiences at IAC?"
I am not alone. I am one many. We have jobs, kids, and lives. Life doesn’t stop because you are HIV+. Sometimes it’s nice to know you have a friend that truly understands you.
“How will you apply what you have learned to your day to day life and/or in your community?"
I am going to go back and speak to the youth groups at my son’s high school. I will also be going to contact the local AIDS Organization and attend some of their open forums, to see what they are actually doing for women in our community.
Jae
