Lynda Dee

How has HIV affected your life and what motivated you to become an advocate?

AIDS activism called to me when my husband and so many of my dearest friends were diagnosed with AIDS, became sick and died, some in as little as three days. I was a party girl on the disco circuit. I had loads of gay friends all over the country. Overnight people who I loved and who had cared for me and helped me were dying from AIDS in droves. I just couldn’t leave them when they needed me, and I believed that if the government was forced to allocate enough money at HIV research, my loved ones could surely be saved. I was just the girl for the job.

Truth be told, I was not completely motivated by altruism. AIDS activism also helped me to survive some of the darkest days of my life. It was much easier for me to be angry about my grief and loss than it was to be sad. My anger propelled me into the HIV research arena some 33 years ago. I was among the first wave of “treatment activists” that successfully forced government, academia and industry to change the way drugs are developed and also to make new drugs accessible to the people that needed them the most. I am proud to say that AIDS activism has been my life’s work. The accomplishments of AIDS activism have been incredible and have saved countless lives across the world as well.

What would an HIV cure mean to me and to my community?

Imagine if we had a cure for HIV. No more HIV related pain, sickness, death, grief, trauma, transmission and stigma. Just Imagine.

In the short-term, a cure for HIV means not giving up the fight. When I first became an AIDS activist in 1985, I believed that if we could send a man to the moon, we could surely find a cure for HIV. Who knew it would take unlocking the vast secrets of the human immune system before we could reach our goal. While we now have such effective treatments against HIV as a result of stellar research and development of new drugs since the 1980s, I still believe it is necessary and possible to initially achieve long-term HIV remission and eventual HIV eradication. Of course, it will take more time, political will to allocate continued funding and resources as well as partnerships among government, academia, industry and the community to achieve this goal.

HIV activism is also a long-term proposition. Sometimes we make great strides. More often, we make small advances or even just hold the line. But consider the many life-saving advances that have resulted from AIDS activism, especially in the field of HIV research that have also advanced the field in other diseases. I believe we must continue our efforts, strive for complete eradication, and never surrender the fight until we do eradicate HIV. Just Imagine the world without this heinous suffering and death. For me, it's definitely worth the fight.

What scientific and community engagement work excites me most about the DARE Collaboratory?

Throughout the first half the HIV research story, HIV research emphasized HIV virology. This approach resulted in life-saving HIV treatment advances. But now we must focus on HIV immunology which is an even harder nut to crack. I am extremely excited about DARE’s work and focus in the field of HIV immunology which I believe is the next great challenge to overcome. It is exhilarating to learn so much about cure research and to be part of a team that is trying to unlock the secrets of the human immune system in an effort to cure HIV.

My home organization, AIDS Action Baltimore, has a long tradition of educating our local AIDS community. I very much enjoy teaching others what I have learned and watching people soak up complicated knowledge right before my very eyes. Baltimore which has some of the worst HIV statistics in our country. Of course, the poorest people are the most effected by HIV. In Baltimore, that translates to African-Americans, especially gay and transgender African-Americans. It is very rewarding to me to be able to carry what I have learned from my work with DARE back to my local community, especially the African-American community which experiences so much health related disparities.

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