Tell me part of your story of living with HIV?

My journey with HIV began at the age of 18 — I was a high school dropout, living on the NYC streets for just over a year, and addicted to Heroin. After my boyfriend died from a drug-related health problem, I sought help in long-term residential drug rehab where I tested HIV positive. It was 1988 and I was told that I likely only had a few years to live.

Not fully grasping the gravity of my diagnosis, I just focused on getting off heroin and getting on with my life. But I also knew if I left the drug program, that I would surely die, especially now that I had HIV — and I wanted to live so I stayed in rehab, which was really hard at times.

Over the next few years my CD4 cells continued to drop, I eventually received an AIDS diagnosis, and also learned I had Hepatitis C.  Fortunately, I was alive when we finally had effective HIV treatment, which I started in 1998.  I was cured of Hepatitis C around 2005.

Despite my early challenges in life, I always set goals to accomplish. I turn 55 in August. Since testing positive, I quit heroin and went from GED to PhD; I am now a Professor of Sociology at Indiana University-Indianapolis. I have been fortunate to travel all over the world to places like Bolivia, Jordan, and Kenya.  Early on, I thought HIV had robbed me of motherhood, so you can imagine how ecstatic I was to become Sami’s mom — I adopted him at 3 months old from a Jordanian orphanage in 2003.

I am also an activist for people living with HIV (PLWH) and work hard to end discriminatory policies, especially HIV criminal laws. I helped found and lead the HIV Modernization Movement-Indiana which is a grassroots network of PLWH and allies working to end the criminalization of PLWH.

I am now aging with HIV and dealing with normal older age health issues like anyone else my age. I manage well and live a good and rewarding life. It’s kind of ironic when I think back on my diagnosis decades ago.  As being diagnosed with a life-threatening illness gave me the motivation to truly start living and finding my purpose in life through becoming a mom, scholarship and activism. I am truly grateful.

To read more about my story, visit:

What would ending the HIV Epidemic mean to you?

I live an incredibly rewarding and meaningful life.  I expect to live just as long as anyone without HIV. I am also no different from anyone else in terms of what I can do and the kinds of relationships I have. HIV hasn’t stopped me from pursuing love, motherhood, and all my dreams and shouldn’t stop anyone else who has HIV. But it still is a health condition that has no cure and still carries a lot of stigma which is harmful. So, it would be wonderful to end the epidemic so no one else has to live in fear of contracting HIV or live with a life-long health condition, and the stigma that still persist around this disease, no matter how manageable it becomes. It’s still better to live in a world where the HIV epidemic is a thing of the past.  This is something within our grasps as we have both the treatment and prevention tools to end it.

What does U=U mean to you? How does it affect your life?

I tested HIV+ in 1988, a time of great fear and stigma. U=U means freedom from that fear and stigma. It is also a major victory in helping to reform HIV criminal laws that treat us as dangerous. I am not, and never have been dangerous because I am HIV+. U=U is destroying that false belief about us. 

How long have you been undetectable?

About 19 years

Carrie F

One thought on “#UU19 Carrie F.

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