As a lawyer in his native country of Zimbabwe and director of an HIV advocacy group, Tapiwanashe Kujinga has seen the AIDS epidemic in Africa firsthand.
“The percentage of people living with HIV in Zimbabwe is still in the double digits,” he says. “Access to treatment is not as easy as it is in the United States. There is a waiting list for antiretroviral therapy (ART).”
In Zimbabwe, 14 percent of the country’s population, or nearly 1.3 million people, were living with HIV in 2011, according to UNAIDS. Kujinga says 85 percent of those people also have tuberculosis (TB). Kujinga says he is glad the AIDS Clinical Trials Group (ACTG) Network is conducting research into this co-infection at its sites around the world, especially since TB is the number one killer of people living with HIV globally.
“It really is a big public health concern,” says Kujinga. “Our resources in Africa do not allow for comprehensive and quality access to treatment and care. We have challenges with health care staff. In the United States, you have a lot of scientists, laboratories and medical specialists. In Zimbabwe, we have doctors, but we do not have as many specialists, like oncologists or hepatitis and tuberculosis experts. All of this impacts our quality of care and treatment.”
In an effort to play a role in educating the public about HIV testing and treatment, Kujinga joined the Community Advisory Board (CAB) for an HIV vaccine trial that was to be conducted in Zimbabwe by Africa University in collaboration with the St Jude’s Children Research Hospital in Tennessee, USA. In 2008, he joined the ACTG’s CAB at the Chris Hani-Baragwaneth site in Johannesburg, South Africa. He joined the local ACTG CAB at the University of Zimbabwe-University of California San Francisco (UZ-UCSF) Collaborative Research Programme site in Harare in 2009 upon his return from South Africa. CAB members work at the local level at each ACTG site assisting with outreach efforts.
“He is a very active community advocate with special focus on health literacy and access to antiretroviral treatment,” says Charles Chasakara, Community Liaison at the ACTG’s Harare site. “Tapiwa has also been very instrumental in championing research literacy for the local CAB and the community at large. He is very passionate about the rights and welfare of people living with HIV/AIDS and he has lobbied for policies to protect and uplift these fundamental values.”
Kujinga says he and other CAB members will visit communities in and around Harare at risk for HIV to talk with people about the ACTG’s clinical trials. The CAB will also work together with the Ministry of Health and the National AIDS Council to spread the word about HIV research.
“The communities where we have done outreach really appreciate this information because it has dispelled misconceptions that research studies use people as guinea pigs,” says Kujinga. “The community now sees that studies are being done locally to develop better medications and approaches to treatment of HIV.”
In 2008, Kujinga applied for one of 28 positions on the ACTG’s Community Scientific Subcommittee (CSS). CSS representatives sit on the Network’s study teams, providing valuable feedback as a protocol moves from concept proposal to clinical trial.
“It has been very interesting for me to see how a study or protocol develops,” says Kujinga. “I have enjoyed learning how the various people who work together to design a study will move from discussing a 10-page concept to implementing a 100-page protocol.”
CSS terms last four years, so Kujinga rolled off of the committee in 2012. He says the most interesting study he worked on was A5263, which seeks to find the most effective anti-HIV medications and chemotherapy for the treatment of advanced Kaposi sarcoma (KS), a form of cancer.
“KS is a big problem in the developing world,” says Kujinga. “I am excited to see how the results of this study will impact the treatment of KS in people living with HIV/AIDS.”
In addition to more KS studies, Kujinga hopes the ACTG’s future scientific agenda includes research into other opportunistic infections, like cryptococcal meningitis. This is a fungal infection of the tissues covering the brain and spinal cord. He says more trials exploring the best treatment of the hepatitis and HIV co-infection are also needed in Africa as well as access to affordable anti-HIV medications.
“The developing world demands a lot of attention when it comes to HIV and we should target where the problem is impacting the most people,” Kujinga says. “Sub-Saharan Africa is only 10 percent of the world’s population, but it is 70 percent of the world’s cases of HIV. So if we put Africa in the center of our research efforts, it will make a tremendous impact on the global epidemic.”
Since his term with the ACTG’s CSS ended, Kujinga has become his Harare CAB’s representative to the ACTG’s Global Community Advisory Board (GCAB). Each of the Network’s more than 70 sites has a CAB and each CAB elects a person to represent them on the GCAB. GCAB members participate in monthly conference calls with members from ACTG sites around the world and discuss reports coming out of the Network’s many subcommittees.
“The ACTG is really a dynamic group that has had so many successes,” Kujinga says. “In Africa, we now have access to better therapies and more efficacious ART regimens. We are learning more about opportunistic infections, drug interactions and co-infections. It makes me feel proud to be a part of a group that has done so much for HIV/AIDS treatment and care.”
When he is not practicing law, directing his HIV advocacy group or volunteering at the Harare ACTG site, Kujinga spends time with his wife and daughter. They enjoy relaxing outside boating and fishing.