| News | March/April 2011 Volume 3 Issue 2 |
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LinCS 2 Durham provides opportunities for members of Black communities in Durham, North Carolina and scientists in the region to learn and work together to find new ways to prevent HIV. Read on to find out what's happening. Upcoming Events You're invited! If the LinCS 2 Durham project is news to you and you'd like to know more, we invite you to attend a meeting of the project's Collaborative Council. The details are below. Let us know you're coming! Please get in touch with Randy Rogers, a public health education specialist for the Durham County Health Department and coordinator of the LinCS 2 Durham Collaborative Council: rrogers@durhamcountync.gov; (919) 560-7675.
Staff Profile: Brett E. Chambers
Brett Chambers entered Duke University on a premedical track. "I don't like seeing people suffer," he says. "I watched my grandmother go through diabetes, high blood pressure, arteriosclerosis. She had three strokes. Her doctor made house calls. I wanted to be like him—going to people's houses and reaching them where they are." By the time Brett graduated, he had shifted from medicine to public policy, with a concentration in health policy. He says, "When I made the flip, it wasn't because I didn't want to heal people. I just found a different way to do it." Brett's way was media. "Information gives people the opportunity to heal themselves," he says. At WTVD (an ABC affiliate based in Durham) in the 1980s and 1990s, he used the power of television to explain health issues: "I could do a show on cancer and convince people it's a good idea to go and get a mammogram or a prostate exam." The first reporting Brett did on AIDS was in 1984—very early in the epidemic. His interest was personal as well as scientific and political: "I knew some people who were infected; they were my friends. They brought the epidemic closer." When WTVD cosponsored the first local celebration of World AIDS Day, Brett did a show on it. From WTVD, where Brett was director of public affairs, he moved to North Carolina Central University, where he earned a master's degree in education technology—a subject he now teaches at NCCU along with mass communications. He joined LinCS 2 Durham in January 2010 as the project's communications consultant. He says, "I was attracted to LinCS 2 Durham because, at the end of the day, HIV prevention is really about the transfer of scientific information. There's a big gap between the researchers and the community at large. The gap exists because there are people who know and people who don't know. And it's a mistake to just give the people who don't know some information rather than empowering them to understand and use it." "My personal mission is connection," Brett says. "That's what LinCS stands for: it's the essence of what we do. The job of the project's Communications Working Group, which I'm part of, is to make sure everybody is connected and listening to each other." Point of View: Anthony R. Coston LinCS 2 Durham welcomes the chance to share the views of participants in the initiative. The opinions expressed here are those of the writer. The Human Side of Science
I have a friend who is living with HIV/AIDS and has been for twenty-plus years. I have sojourned with him down his road of pain, fear, anxiety, frustration, regret, and hopelessness. I also experienced with him moments of joy, love, optimism, and respite. Through sharing in these moments, whether good or bad, I have seen the agony and despair that this disease can rain down upon one's soul, blurring any glimmer of light trying to pierce its way through the darkness. There were infections, hospitalizations, homecare treatments, and stints both in a rest home and a group home. I witnessed him losing his house and his apartment. He tried working to subsidize the disability income that barely met his financial needs and, because he was working, temporarily lost that (disability) income. After some legal mitigation, he managed to regain it. Today he is up and back on his feet after having had two hip replacements—surgeries made necessary by avascular necrosis (bone death) due to many years of taking medications that were sometimes more toxic than beneficial. After 17 years of trying almost every medication being developed; with nothing working, and trying every clinical trial that was available, he still managed to survive on 10 T-cells and a very high viral load. I believe his determination and pursuit of clinical trials played an important role in his survival. Even though there were no encouraging lab results most times, his participation in those trials, I would assume, was not a total failure. His doctor at UNC became frustrated; because in all his effort to provide the best possible care, there seemed to be no improvement. The doctor had exhausted all available trials and suggested that my friend patiently wait for new clinical trials then in the making. But my friend felt that time was not on his side. On his own initiative he ventured to Duke to see if any clinical trials were offered there. Fortunately, there was one—just beginning, and he barely qualified for the study. Call it fate, luck or God; that was the clinical trial that brought my friend back to life. You're probably wondering what about this individual's story is pertinent to the Collaborative Council and to the development of a community survey of attitudes towards clinical trials of HIV prevention methods. The relevance is that in my friend's strong endeavour not to give up, he finally found a clinical trial that worked and saved his life. Had my friend not been determined in his belief that something was out there that could help him, he would not be where he is today. This is why I feel LinCS 2 Durham is important. I applaud the effort to acquire and study data that could help explain the hesitation within our focus group—young Black people between the ages of 18 and 30—to participate in clinical trials that could prevent many unnecessary deaths. Also, having had such an experience with my friend affords me a compassion that I may not have developed had I not been on this walk with him. As we sit on the Council and trot out ideas, questions, linguistics, statistics, and scientific data in the compilation of the survey, it is my hope that the personal and human aspect of the survey will not be lost. In other words, what can the Council offer our focus group as well as take from them in their voluntary participation? Other than financial incentive, how can we convince the focus group that responding to the survey will be a benefit to them? When people feel that there is a positive result forthcoming from their investment of time and energy, they are usually willing to participate. In other words, they have an answer to the question, "What's in it for me?" Sometimes I sit in the Collaborative Council meetings and listen to all the rhetoric and feel that my presence is not needed or relevant or that I am not learned enough to offer any valuable input. I wonder if we are ever going to get to the "meaty" purpose of the agenda. I get bored. I get frustrated. I want not to return. But then I think of my friend and how participating in a clinical trial changed his life and I push myself to attend another meeting, believing that maybe sitting through all the mish-mosh is worthwhile after all. There is good. There is benefit. A good work is in the making. Anthony R. Coston is an Alliance of Aids Services volunteer and a member of the LinCS 2 Durham Collaborative Council. Message from the Collaborative Council Facilitator
It has been a tremendous honor to be in service with the LinCS 2 Durham's Collaborative Council (CC), as the group's facilitator. The Council celebrated its one-year anniversary this past October. The members' commitment to holding the study accountable to community-based participatory research (CBPR) principles has been and continues to be encouraging, while making this hard/"heart" work worthwhile. Several CC members have contributed their time and input in several capacities, as evidenced by their level of involvement with the Communications Working Group, Community Survey Working Group, Research Literacy Curriculum Working Group, and the Collaborative Council Working Group. These working groups play a vital role in assisting us with realizing our study objective: ultimately, to explore creative and community friendly ways to engage Durham's Black community and social scientists in dialogue about the most effective ways to talk about HIV prevention technologies within the context of potential clinical trials involvement. This undertaking is critically important regarding negotiating real and perceived power dynamics between community members and LinCS 2 Durham staff. It also requires creating a safe space for passionate and controversial dialogue to unfold in a respectful manner, while making sure there is equitable research literacy knowledge across the board for "informed" decision making purposes. Needless to say, this is an iterative process and can be a laborious, yet fruitful task. I'm certainly appreciating the cooperative learning process. Two community representatives of the CC attended the annual Minority Health Conference at the University of North Carolina at Chapel Hill in February. This is one of many ways LinCS 2 Durham is making a conscious effort to give back to our CC members who are consistently making notable deposits in the study. Please stay tuned for future updates and observations in forthcoming issues, as we continue to move forward "in community"—endeavoring to make a positive difference in the overall wellness of Durham. Onward, Randy Rogers serves as coordinator and facilitator of the LinCS 2 Durham Collaborative Council. He is a public health education specialist with the Division of Health Education at the Durham County Health Department. LinCS 2 Durham Community Survey Ready for Launch A key activity of the LinCS 2 Durham project is to survey members of Durham's Black community between the ages of 18 and 30 to find answers to the following questions:
The survey will also provide a window on social relationships and attitudes toward HIV testing. The Collaborative Council (community members and LinCS 2 Durham staff) has worked for months—at meetings, retreats, and with pilot testing activities—to fine-tune the survey questions. They've also created outreach material such as handouts and posters to increase community awareness of the project and the survey. When Collaborative Council members gathered for their annual retreat in February, the survey was a key item on the agenda.
Two new LinCS staff members—Eunice Odhiambo and Marcus Hawley—are coordinating the survey efforts. Marcus has been a long-time member of the Collaborative Council. Eunice and he are social clinical research assistants in the Department of Health Education at North Carolina Central University.
HIV and Black America in the News April is National STD Awareness Month
The state of AIDS in Black America Sources of new data on the HIV/AIDS epidemic released Real Talk! Be a part of the LinCS 2 Durham project You're also invited to share your knowledge with the LinCS 2 Durham project team. Tell us what you think about this effort. If you come across something interesting in the news related to HIV, send it to us. And let us know about local events that would be good opportunities to spread the word about LinCS 2 Durham. We thank you for your interest and help! To reach Natalie, e-mail her at lincs2durham@fhi.org. Or get in touch with Randy Rogers: rrogers@durhamcountync.gov; (919) 560-7675. Join us online Contribute to the LinCS 2 Durham newsletter
You deserve credit for your contributions to the newsletter. However, if you prefer to contribute confidentially, just let us know. In that case, we won't identify you as the source and we'll guard your anonymity. The LinCS 2 Durham newsletter is a work in progress. We'd like to know what you think of it, so we can make it better. E-mail us at lincs2durham@fhi.org. Connect with LinCS 2 Durham:
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