One Voice
by Sherri Lewis
April 12 is an easy date to remember. It’s the day I was told I was HIV-positive. Everyone remembers the day they heard that news! It was also my birthday. Now, twenty years later, that date reminds me I need to get my papers in order for my ADAP—and some Restalyne for my face!
So now I’m sitting with Deon Claiborne, the Outreach Coordinator for the UCLA CARE Center, and we gab away and go through the usual bits of information needed to provide me with financial assistance for my meds. It’s a familiar dance that we do while we reminisce about our rebel youths and the early days of AIDS, which brought about our career changes, reevaluations of our life paths, and finding our calling in AIDS work.
Deon appears undaunted handling the constant barrage of new HIV/AIDS information and digesting the science of new treatments and clinical trials, especially for women. We discuss the need to have more women involved in clinical trials.
I participated in one clinical trial three years ago for human growth hormone for the treatment of lipodystrophy. It was time-consuming, difficult to inject toxic doses on a daily basis, and hard for me to function with severe joint pain. Nevertheless, I wanted to complete the trial. After nine months spent discovering that human growth hormone may not be my solution, a plethora of information from all the tests they ran nonetheless provided more data about women and HIV.
And that’s what we need—more data. Though I have been successful with my HIV treatments I can’t help but wonder how aging with HIV will affect my health and my treatment. (A problem we didn’t have the luxury of entertaining in the eighties.) Are there medications that are better for women than for men? Do women with HIV die faster? Cheryl Greenstein, a physician’s assistant in New York City, describes this scenario: “Of the people I see who find out they are HIV-positive only when they come into the emergency room with full-blown AIDS, ninety percent are women.” In the U.S., women represent more than one in three new HIV infections and one in four new AIDS cases.
Pam was diagnosed thirteen years ago with AIDS: a T-cell count of ninety-three, and an outbreak of shingles in her cornea and left quadrant of her head. The doctors traced her infection back to 1981. During eleven years of not knowing that she was HIV-positive, the virus had attacked her immune system and caused symptoms that were ignored by doctors as possible indications of HIV infection.
After being on every available medication and having allergic reactions or developed resistance to most of them, she decided to participate in a Phase II clinical trial for a new CCR5 inhibitor. This drug keeps the virus from entering uninfected cells. Pam was told about the study six months ago by one of her primary care physicians, Dr. Currier, at UCLA. “As excited as I was about participating in the study, when I was finally told how it would turn my life upside down for the first month or two, I wanted to back out of the deal,” she says. “How could I possibly fit eight appointments into a four-week period and still have a life?”
In the end, Pam gave up control of her life for a month. The study nurse gave her a schedule for the first four weeks, and she was able to adjust her life accordingly. Pam is happy to report that she believes she did not get a placebo, as she is experiencing both side effects (chronic fatigue, diarrhea, headache, dry mouth) and results (with no other medication changes, her viral load went down from 21,000 to 8,000) in the first week on the study drug. Out of ten study participants, however, Pam is the only woman.
“There have been days that have not been easy but, knowing that this study can help other women, I signed a release for my blood to be taken and used for other, unrelated studies,” she says. “How can we complain about the effects of HIV/AIDS drugs on a woman’s body if we are not willing to actively be involved in research? As a woman, I feel it is my duty to participate as there are so few studies that have women in them. I am glad that I decided to participate. My body has had an immediate positive response to the study drug,” she says. “Now if I could just ‘grow’ some T cells, I’d be Wonder Woman!”
Go to the Links section of www.aumag.org for more information about clinical trials.
Sherri Lewis, aka Beachfront, is an HIV-positive actress/singer, writer, and nationally known AIDS educator. Along with her one-woman show Life Is a Beach, she is a public speaker for UCLA AIDS Institute and Being Alive, and serves on Women At Risk’s board of directors and as the organization’s Outreach Coordinator. Reach her by e-mail at SlewisWAR@aol.com.
May 2005
