We won’t stop until we’ve eradicated HIV/AIDS
Stories from Clinical Trial Volunteers
I am alive today because of medical research. I grew up in rural Pennsylvania on an isolated dairy farm. After graduating from high school in 1984, I moved to Pittsburg to attend Point Park College. That first semester, after participating in a school blood drive, I was informed I had HIV and was given five months to live.
My father and stepmother were told of my diagnosis (without my consent), leading to my being ostracized from my family. I was 19 years old, facing death with no family support. This was my welcome to adulthood. I realized I could be pessimistic and let the disease win, or I could be optimistic and face the disease head-on with every resource available to me. I joined a research project sponsored by the University of Pittsburgh, hoping I’d get earlier access to information about treatment. Dodging that first doctor’s diagnosis, I was able to remain alive and healthy until 1999. My health declined then and I needed to start medication. In 2001, I was hospitalized in New York with bacterial pneumonia.
I got better. Medical research again kept me alive. After moving to Los Angeles, I enrolled in a six-month therapeutic vaccine study at AIDS Research Alliance. Volunteering as a trial patient at AIDS Research Alliance allowed me to help other people living with HIV/AIDS, and keep myself healthy as well.
We all can be a part of the progress toward better HIV treatments and eventually a cure. Because of research, I had treatment options. Because of research, I am still here. Because of research, I have had 23 years to pursue my dreams. Because of research, I have hope.
I want to thank ARA for making a tough day easier. Subtle things made all the difference when it came to me accepting the news of being HIV positive. The way everyone treated me provided an enormous amount of comfort at a time when I felt alone and scared. I imagine it was more difficult being in your shoes on a day like yesterday. It must be difficult to not say, “What were you thinking?” Instead, you offered support and compassion, and I know that takes strength—strength that you passed on to me.
You might ask me why I allowed researchers at AIDS Research Alliance to inject an HIV vaccine candidate into my arm for three years. The reason: my partner is living with HIV.
Like most people with HIV, Steve wanted two things: a cure and a way to keep HIV from hurting others. I thought, ‘How could I help him? I’m a writer and even a blockbuster novel can’t cure AIDS!’ I’m grateful that ARA gave me a way to help. ARA was launching a new study of an experimental AIDS vaccine. I qualified and volunteered for the study.
Helping AIDS Research Alliance look for an HIV vaccine taught me some life-changing lessons. For one thing, I was surprised by the reactions of others to what I had done. I learned that mentioning HIV/AIDS still made a lot of good people nervous. And I was surprised that so many people think that AIDS is over – as if having some drugs on the market makes everything suddenly better. But AIDS is not over.
I found out I was pregnant the same day I found out I was HIV positive. It was devastating. I was so scared for my baby, fearing that she could be born with HIV. Luckily, I’m pleased to say that my beautiful baby girl is healthy and HIV negative.
Being HIV positive made me realize how much more research still needs to be done – and I wanted to help that cause. Through the years I’ve been involved in a number of clinical studies for conditions such as lipodystrophy, the unhealthy fatty build-up caused by some of my medicine. That particular study helped me lose fifty pounds and gave my self-esteem a huge boost.
I also heard about a pharmaceutical company looking for HIV+ models to appear in their ads. With encouragement from my friends, I auditioned, and was picked to be one of the models for their poster ads. It was empowering “coming out” as an HIV+ woman.
My overall experience with HIV treatment has been an adventure, let’s just say that. I used to get mad when I saw those mountain-climbing ads [for HIV drugs], but now I have climbed my own mountains!
The work AIDS Research Alliance is undertaking will forever change the horizons for many people far into the future – a future made brighter by their amazing and altruistic efforts. I’m personally indebted to AIDS Research Alliance for my participation in a lipodystropy study that improved my general health and well-being. I was happy to participate—happy to be a part of advancing the science and searching for better medicines to help others battling HIV. It was a noble journey and I am thankful to have been allowed on it.
If you’ve ever wondered if AIDS Research Alliance is making a significant difference, you can stop wondering. The work that ARA is undertaking will forever change the horizons of many people far into the future, a future made brighter by their amazing and altruistic efforts. Each member of the medical team is a hero to me.
I’m personally indebted to AIDS Research Alliance for my participation in one of their studies that improved my general health and wellbeing. I was happy to participate, happy to be a part of advancing the science and searching for better medicines to help others battling HIV. It was a noble journey and I am thankful to have been allowed on it.
AIDS Research Alliance has made an enormous difference to me, and to the many after me who will benefit from HIV research. I’m sincerely and profoundly grateful, more so than I am able to say with this note. Everyone who wanders into ARA is incredibly lucky, and I thank the folks who support this work.
I sometimes cry when I realize how fortunate I have been. These tears of happiness offer hope in the face of despair. I am a witness to the bona fide miracle that is research.
Send us your stories! We want to hear from you.
• Are you alive because of the drugs that we helped to develop? What have those extra years meant?
• Volunteering for research now? How is that going?
• Do you have a favorite HIV/AIDS blog?