AIDS Community Research Initiative of America (ACRIA) - Spring 2003
Cathy Olufs

As a community scholarship recipient to this year's Conference on Retroviruses and Opportunistic Infections, I looked ahead to the frigid mid-winter trip to Boston with both anticipation and a strong sense of anxiety. Anticipation at the chance to see many of my community activist friends from around the world, and anxiety at the deluge of scientific data that I would be challenged to sort through and make sense of. Despite my nerves and having to leave the relative tropical luxury of Los Angeles, I boarded my flight with my new Dell laptop (bought on credit) and headed east. This was my second Retrovirus Conference in as many years, and I was determined to learn as much as I could to share with my fellow community members back home at Being Alive Los Angeles.

Diagnosed with HIV in 1995, I didn't have much of a science education under my belt before becoming a treatment educator and activist at an HIV women's organization in 1998. It wasn't until I really started to take an active stance in my own healthcare and advocate for others that I realized the importance of understanding the sophisticated realm of treatment information.

Although I had been a member of the AIDS Clinical Trials Group's Community Constituency Group for two years, attending 2002's Retrovirus Conference in Seattle was my first really serious science-based conference - and it left me numb for days afterward. I found myself sitting through the basic science presentations taking more notes on terms that I didn't understand than on the actual presentation. The program said "basic" science, so I thought I would feel right at home…Ha! Some of my friends saw the glazed look in my eyes and helped guide me towards the type of sessions that would be a little more relevant and less frustrating. Returning to LA from Seattle, I knew that, in order to become a more effective advocate for people with HIV and keep up with other community activists and writers, I needed to know much more than I did. Rather than feel intimidated by my lack of knowledge, I began to look for ways to learn more within my own community.

As a positive step towards becoming more science-savvy, I took an advanced biology class at a local community college. I didn't become an expert overnight, but I did manage to snag a nice fat grade of A. This basic background greatly increased my comprehension during the sessions at this year's conference and has spurred me to continue working towards a degree. Another thing that really helped me focus and better prepare for this year's conference was my involvement in ATAC (AIDS Treatment Activists Coalition). Individuals in this group have provided me with an overwhelming amount of encouragement and support during the past year. Knowing that many of them were going to be at the conference helped to decrease my anxiety. A number of bacterial infections continue to be a source of concern for many HIV-positive people, including those who are responding well to antiretroviral drug treatment. One example is syphilis, caused by the bacterium Treponema pallidum, which has made something of a comeback in recent years. In New York City alone, syphilis rates more than doubled from 2001 to 2002, primarily among gay and bisexual men. Because syphilis is an "ulcerative" sexually transmitted disease (STD), meaning that it can cause open sores, it carries with it an increased risk of HIV transmission. Research indicates that syphilis is more likely to run a more rapid and harmful course of disease in people with HIV, including those with relatively healthy immune systems. In turn, modern-day treatment initiatives tend to be a bit more aggressive. HIV-positive patients generally receive three weekly injections of high-dose penicillin for the treatment of primary or secondary syphilis, as opposed to the one-time penicillin injection used to treat HIV-negative patients.

Once in Boston, I was looking forward to Monday night's opening session. Bill Clinton was to give the keynote lecture. Besides the fact that I had never seen a president in person, I was really curious about what he was going to say. Getting to the auditorium early, several fellow community members and I (very courteously) bogarted our way to the front row, so we had an excellent view of the presentations. Before Clinton took the stage, the Sinikithemba Choir from South Africa treated the audience to a lively round of African gospel. The music was nice, but knowing that all of the members of the choir are HIV-positive and only a few have access to the treatments being discussed at the conference weighed heavily on my mind. Towards the end of their program, one member walked to the podium and began to speak about her life with HIV, her struggles with opportunistic infections, and the hope that she had for the future. At one point she broke down in tears…and I lost it too. What she had to say set an important tone for the rest of the week. Her words were so eloquent and powerful that, in comparison, I found Clinton's talk interesting, but fairly anticlimactic.

The rest of the conference was a whirlwind of activity. When I wasn't attending plenaries and symposia, I was at poster sessions and oral abstracts. I came away feeling a lot better this year, because I learned to pace myself and stayed away from the heaviest scientific stuff. At night, I went to community meetings for ATAC and fed myself at pharma receptions. Because I was on a limited budget, these free meals really came in handy. I strategized with my fellow ATAC members over coffee during the breaks and grilled my super-smart community friends for answers to questions about stuff that I didn't understand.

It was awesome being at the conference with so many prominent researchers and clinicians from all over the world. At least twenty different languages were being spoken in the elevator of my hotel (not unlike a New York subway car) and as many different medical and scientific disciplines among the attendees. The fact that 60% of the conference attendees were from other nations really demonstrates what a global issue AIDS is and what a truly global response is needed to find the answers we are searching for.

Attending Retrovirus gave me an eye-opening snapshot of the vast array of research being conducted around the world - from petri dish to clinical trial. I wish that there were some marvelous breakthroughs to report - something like the advent of protease inhibitors in 1995 - but the progress in general gives me a sense that better things are yet to come. The biggest challenge however, is not in finding new treatments for HIV, but ensuring that everyone has access to the ones we already have.

Cathy Olufs is a treatment activist and health educator in Los Angeles.

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