While at the Positive Women's Network Speak Up! Summit, I was able to participate in many wonderful sessions.
One session that really resonated with me was in regard to treatment advocacy. Treatment advocacy focuses on optimizing the quality of care and treatment, as well as increasing access to care and treatment for people living with HIV. Treatment advocacy can occur on several levels, including individual, community and national.
I had always considered myself successful at individual advocacy. I have a great relationship with my medical provider, attend each of my appointments and adhere to my medication. I have also recently gotten more involved in advocacy at the community level. I joined the Community Advisory Board at my local hospital to learn more about upcoming HIV studies. I am also taking on a new role with the local health department's Ryan White Planning Council. But I had never considered treatment advocacy at the national level. However, as I listened to this session, I was intrigued. There is a serious gap for women.
In clinical trials, only 1 of 10 patients studied is a woman. As a result, most information on effectiveness and safety of HIV drugs is based on research conducted on men. This astonished me considering 1 in 4 people living with HIV in the U.S. are women. However, this did encourage me to become more involved in treatment advocacy at a national level. I'm not quite sure how I will do this yet. But our voices need to be heard! As I heard many times throughout the Speak Up! Summit, "Nothing about us, without us!"
