This post originally appeared on and can be read in its entirety at The Well Project

Hi all, as an aging member of our community I have seen and dealt with a lot of issues.

Yesterday during a group conference call regarding health and aging with HIV, I learned that a drug I took for my HIV back 20 years ago was the probable cause for my bout with Dementia.

While I understand that the drug manufacturers are pushing these drugs out with FDA clinical trials that don’t run for many years, and I am grateful for drugs that have kept me alive, it’s not the whole picture. My quality of life is.

I am angry and sad that when they discovered this drug causes side effects that damaged my brain they didn’t reach out to me or my provider and do the right thing. I am now, 20 years after the dementia started and 10 years after they supposedly discovered this major side effect, just hearing about it from a study nurse. I lost several years of life due to this drug. I had to go on disability, couldn’t even read a child’s book, couldn’t drive, lost my independence and then my marriage. Continue reading…

The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. Visit their website,, to access fact sheets (English and Spanish), blogs, and advocacy tools, and to join a global community of women living with HIV.