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Once a month, a diverse group gathers in the second floor conference room at Ventura County Public Health in Oxnard. As they settle in and begin to chat over sandwiches and iced tea, these men and women in their thirties, forties and fifties resume an ongoing dialogue about improving programs and services for people living with HIV. They come from all parts of Ventura County. They are gay and straight, multi-ethnic and highly opinionated. They are the Quality Advisory Committee of the Ventura County HIV/AIDS Coalition.

In April 2004, Public Health put out a call for clients interested in serving on a new consumer advisory panel. Asked to facilitate the group, I really didn’t know what to expect. Ventura County is notorious for people not wanting “to get involved.” Something about the stress of battling all of the crabgrass that is the inevitable result of suburban sprawl. I was, at best, guardedly optimistic. Seventeen people showed for the first meeting.

Group dialogue often centers on reaching people at high-risk for HIV and getting those who are infected into care. Mike, a father of three and a grandfather of six from Simi Valley, is frustrated by the continuing high rates of new infections. I asked the group, “Why are so many people testing positive and getting an AIDS diagnosis at the same time?” The group considers possible reasons: denial, lack of information, fear of the “system.” Mike offers, “I was one of those people who tested positive and got an AIDS diagnosis at the same time. I almost died. Nobody ever asked me why I waited so long to get tested.”

Last year, Mike and his fellow Committee members brainstormed slogans for a campaign to encourage people to get tested. After a freewheeling, no-holds-barred discussion of strategies to convince, cajole, goad and guilt people into testing for HIV, Mike suggested “I know. Do you?” The group immediately agreed that this was the perfect slogan, especially for our county. It doesn’t refer to any specific disease or condition (avoiding the nasty, persistent stigma). It leaves it up to the individual to disclose what he or she knows. T-shirts and cards were printed and the group has taken the message to the streets . Tabling at the local Pride Festival and the AIDS Walk, the group is helping to keep the conversation about HIV alive in the community.

Anthony B., who lives in Thousand Oaks and is helping to raise two nephews, sports a pony-tail and a rep in the community for a big heart, reliable transportation and a willingness to taxi people to medical and other appointments. He is thirty-something and thoughtful. When he speaks, he has something to say. Reflecting on the numbers of people who either don’t know their status or who aren’t in care Anthony says, “I want to see people get more involved in the community and more involved in taking care of them selves. The ‘I know. Do you?’ slogan goes beyond knowing your HIV status. ‘I know. Do you,’ can mean a lot of things to a lot of different people,” he says. “For some it’s about knowing how to protect yourself. For others, it’s about keeping up with new HIV medications and treatments. That kind of knowledge means a longer, healthier life with HIV.”

Jim, a temporary bay area transplant, is restoring a boat in Channel Islands Harbor. He comes to the group with experience serving on another consumer advisory board for Kaiser Permanente and a wealth of technological expertise. When the group identified the need for a safe, confidential place for consumers to get information about community services and events, Jim develop a website, VenturaPositive.org. The site lists upcoming events and provides forums for discussion of issues and challenges. “People in Ventura County are still afraid of getting together with others who are living with HIV. As a result, people are going without services and support,” Jim says. “Our intent in creating the website was to provide a place for people to get comfortable sharing information and resources, hoping that it will build a stronger community of support.” The site is maintained through the generous support of Sheila, another group member, who covers the monthly web hosting fees.

Each of the committee members is unique, yet they’re all pretty involved in the community. Anthony F lives in Ventura and divides his volunteer time between contributing to the Quality Advisory Committee, serving as the client advocate for the APVC food pantry, and organizing various community events. He recently coordinated volunteers at the AIDS Walk. You see him around town wearing an Event Staff tee-shirt and a big smile. He is a whirlwind of energy and enthusiasm. Anthony has lived with HIV for 15 years and with cancer for another three. He has been through two rounds of chemotherapy and coaches patients in the hospital who are battling cancer and HIV simultaneously. “I see life as sink or swim. I’m an extremist. I’m going to keep swimming. Going through all these treatments, so much support has come my way. I guess it’s true that you get back what you put out there.”

Danny, from Santa Paula, came to the group mid-year. He’s an activist at heart. He has already written to the Star offering local “color” for any stories the paper publishes on HIV topics. He was featured in an L.A. Times story several years ago and sees the advantage of letting people hear the stories of people who are living with HIV. About a year after the story appeared he ran into a man at a support group in Los Angeles who told him, “Your story encouraged me to find a support group. I realized that I don’t have to fight this battle alone.” Danny recently took on the challenge of compiling and entering data for a new online directory of community services. The task took several weeks but the results are invaluable: a searchable resource directory that is accessible to the entire community and which can be continually updated at virtually no cost.

The Quality Advisory Committee celebrated its one-year anniversary in April. There were no balloons or cake. Instead the group listened to a presentation on how to access information from the VenturaPositive.org website and discussed gaps in services with the HIV-affected community. The group stayed later than the scheduled 1:30 adjournment talking about the website. Some members don’t even own computers but they are looking ahead, to the future, and they want to be ready for anything. They know that HIV is in every community in Ventura County. They know it is still a huge threat. They know, as men and women affected by this epidemic, they have a major part to play in the battle against HIV.

They know. Do you?