Combating Myths with Education

Peter Ziba is a gospel minister in Lusaka, Zambia.

“Community work is my job,” he says.

It is this sense of connecting with people that inspired Ziba to join the Community Advisory Board (CAB) at the AIDS Clinical Trials Group (ACTG) Network’s Center for Infectious Disease Research in Zambia (CIDRZ) site. CIDRZ is one of the Network’s nearly 70 global sites conducting HIV research as well as investigating co-infections such as tuberculosis (TB) and hepatitis C virus (HCV).

Once Ziba learned about the clinical trials being conducted at CIDRZ, he decided to become involved with the CAB there, helping to educate the community. As someone who has had TB, Ziba felt his experience would make him relatable to newly diagnosed patients.

“I thought it was very important for me to speak to those on treatment for TB and educate the community about the symptoms to watch out for, like a cough lasting longer than two weeks,” Ziba says. “I contacted the site and asked if I could be a part of their CAB. At first, I had no knowledge of research. But it was so interesting, and by and by I learned.”

For the past decade, Ziba has been a CAB member at the CIDRZ site. From 2006-2010, he served as a Community Scientific Subcommittee (CSS) member and he was recently re-elected to another four-year term. CAB members can apply for one of 28 positions on the ACTG’s CSS. CSS representatives serve on the Network’s many committees as well as each study team, providing the community’s view of the research being proposed and conducted.

“I served as the CSS representative on five studies, including two that were researching the HIV-TB co-infection,” Ziba says. “I am still the CSS representative on A5208. This study is exploring how women who have been exposed to the drug nevirapine and those who have not react to anti-HIV medications.”

Shahin Lockman, MD, MSc, is the A5208 Study Chair.

"Peter has exhibited tremendous dedication in his role as CSS representative for A5208 and other studies,” says Lockman. “We are truly grateful to him for his commitment and excellent work."

Being a member of the Lusaka community and being familiar with the research taking place behind the walls of the CIDRZ helped Ziba allay the fears of people who thought Satanic work was being conducted at the site.

“Since the center collects blood and many of the study brochures were written in technical terms, members of the community did not understand what was really being done. They thought the clinic and its staff had ulterior motives. One of the center’s community educator’s homes was even burned down by a mob because of these myths and misconceptions,” Ziba says. “But CAB members, like myself, are known in the community and people trust us. We know the local language and the culture. We are able to tell people about the work being done and they feel comfortable with us.”

Having frank conversations with his friends also led Ziba to recruit a new CAB member. He met Harry Tembo in 1998 at an interdenominational church service. The two became friends. Years later when Ziba became involved with CIDRZ, he approached Tembo about volunteering as well.

“Harry’s church had many myths and misconceptions about research,” Ziba says. “I thought to myself, ‘how do I get him to understand?’ I invited him to two educational outreach events and then to a CAB meeting. I asked him if anything he saw led him to believe Satanism was going on at the center. Then he understood. That is probably my favorite memory of being involved with the ACTG and CIDRZ. I’ve really learned how to properly convey messages and educate people. You can’t force it.”

Tembo is now a CAB member at the CIDRZ site and has subsequently spoken to his faith community about the research being done at the center to educate them in the same manner Ziba educated him.

“By working with Peter, I have learned one thing – leave no one behind in HIV. Educate, share, include all,” says Tembo. “From my interactions with Peter, I have realized that many times we assume people are familiar with HIV research. For example, I never knew much despite being a university graduate. Just before the International AIDS Conference in Washington, DC, USA, in 2012, I talked with a senior official of the Zambia National AIDS Council, and I was shocked to learn that he was expressing ignorance about what HIV biomedical research is about. There is still much to be done by advocates.”

Wanting to further educate the community and dispel any rumors motivated Ziba to inquire about joining the ACTG’s Outreach, Recruitment and Retention (OR&R) subcommittee. This committee assists study teams and sites with flyers and posters to spread the word about enrolling ACTG clinical trials.

“I wanted to learn how sites were handling problems with community education and recruitment, so that I could learn a thing or two to bring back to the CIDRZ site to combat these myths and misconceptions,” says Ziba. “I thought that if I joined OR&R, I could learn and then replicate at my site what other sites were doing.”

Ziba formally joined OR&R in 2008. The committee’s members speak by phone monthly, and for Ziba, the calls occur at 8 p.m.

“I usually take the calls at home,” he says. “I have learned so much, including how to make a flyer using language that is easy to understand when you do not come from a research background. So now our site gives out study flyers in easy, simple language. I’ve been able to teach people at my site what I have learned from OR&R.”

Savita Kanade, Community Coordinator at the ACTG’s B.J. Medical College site in Pune, India, serves as the Co-Vice Chair of OR&R. She knew Ziba before he joined OR&R and is thrilled to know how the committee’s work is making a global impact.

“I knew Peter before joining OR&R through the Global Community Advisory Board and CSS network and I am fascinated observing his journey from a CAB member to a community advocate!,” says Kanade. “Many times we exchange our community experiences informally during ACTG meetings. Peter is excellent mentor and good motivator for new CAB members. I am happy having him on OR&R and glad to see that he empowers his community from whatever he learns from OR&R!”

Ziba also puts the lessons he’s learned from OR&R into practice to fight the stigma surrounding HIV in Zambia.

“There is an issue for some people who do not want to be seen coming into the clinic for an HIV test because of the fear that people will talk about them,” Ziba says. “We go out into the community and offer 20-minute rapid HIV tests or test in the workplace. We meet people where they feel the most comfortable.”

Ziba says research into better ways to treat the TB-HIV co-infection are needed in Zambia. TB is the number one killer of people living with HIV globally. He also says the hepatitis B virus (HBV) is a growing problem.

“Tests for HBV are not usually done,” Ziba says. “Hepatitis C is more common, but HBV is an issue not to be neglected.”

When he is not volunteering at the CIDRZ site, Ziba can be found spending time with his wife, his five children and his three grandchildren. He also enjoys reading, writing and keeping in contact with the friends he’s made through the ACTG.

“I have learned so much about HIV research and made friends in Zimbabwe, Malawi, Uganda, Nigeria and South Africa since becoming a part of the ACTG,” says Ziba. “The community’s involvement is really encouraged in the ACTG and I know no other organization that allows this much community input.”