Rod Brown has been engaged in HIV since the start of the epidemic, when he lost his best friend to AIDS. Shortly thereafter, he began attending AIDSWatch, the nation's largest HIV/AIDS advocacy event. Currently, Rod works with the Florida Department of Health, overseeing HIV testing efforts. We caught up with Rod to learn more about his work, motivations, and why HIV advocacy is still so important.
What motivated you to become an HIV advocate?
In the early '80s, my best friend starting having health trouble. When doctors finally diagnosed him with AIDS, they gave him six months to live, and he died exactly six months after that. This was incredibly upsetting to me, not only because he could have lived longer if he had had access to treatment and hope for the future.
I started educating myself about HIV and volunteering. One of the first forays was volunteering at a hospital early in the epidemic, when it was just a mysterious rare cancer. A good friend of mine's brother was ill, we went to the hospital to see him. The food was on trays outside the door because people were afraid to go see him. We started to make groups to go in and make sure that he and other patients ate and had support.
When an opportunity became available for me to work in the HIV field, I took it and have been doing this ever since!
Tell me more about your work with the Florida Department of Health.
I am the early intervention consultant, covering five counties in northeast Florida. I am responsible for all the HIV testing sites -- public, private, and state. I also conduct recertification trainings and community education.
We've come a long way, and yet there is still a long way to go. There's a great deal of stigma and misinformation that is still out there. Education is key. We need to keep ourselves and the public up to date, while lowering the stigma by making HIV testing more routine instead of more targeted.
When did you start attending AIDSWatch?
It was in the '90s. People were still dying, but there was a lot of optimism because there were a lot of new things on the horizon. There were a lot of side effects to HIV treatments in the early days -- as a friend of mine would say he was experiencing LBS (loose bowel syndrome) -- so anything that was going to add live and reduce side effects was something we were optimistic about. Being able to meet our congressional representatives to educate them on HIV and share our stories was a big plus for us.
Why does AIDSWatch continue to be important for advocates?
I think that we need to make sure that we are on the front line and letting people know that this epidemic is not over. Those of us working in the field can't end the epidemic alone -- we need our representatives to get involved. They need to learn that HIV is not a moral issue -- it's a community health issue -- and it's happening right next door in their jurisdiction.
We can stop HIV. This is 100% preventable. we can make an impact if we have the funding and political support to do so.
Thinking about HIV advocacy today, what lessons can we pull from the early years of the epidemic?
Now people are beginning to think that the epidemic is over, when it's far from over. The state of Florida has made great strides but we are far behind. This far into the epidemic, Florida has leaped from #3 to #1 in the country for new HIV infections. We realize that there is a lot of work to do.
We have to reignite the passion and the urgency. In the early days, we were fighting for our lives. We need to rekindle that fire because it's the life of someone and the health of our community and nation. We have to stand up and make people aware that HIV not going away unless we do something. We need government support, and we need to educate our communities about HIV, to bring it to the forefront.
How do you stay motivated as an HIV advocate?
Anytime I see one person get into care I get excited. An HIV diagnosis is not a death sentence, it's a call to reality, it's a life changing event. I stay motivated when I hear someone say, "HIV doesn't have me, I have HIV. I can live and not die with it and I want to pass that message on." Just earlier this week, I had a client say to me "I'm going to prepare to live, so I'm going to take care of me." That's a good way to put it.
One of the things I have enjoyed about this field is that it is always changing and evolving. There is always something new to learn. I am so excited to be able to impart that to my community.
Thank you, Rod! It was such a pleasure talking with you!
AIDSWatch is the nation's largest annual constituent-based national HIV/AIDS advocacy event, bringing together hundreds of people living with HIV and their allies to meet with Members of Congress and to educate them about the important issues at stake for people living with HIV/AIDS in the United States.
Sarah Hashmall is communications manager at AIDS United.