What is your name and where are you from?
My name is Mustafa Musa Agwanda. I’m from Kenya—the Kisimu site.
When did you join the ACTG?
I joined the ACTG in 2018
Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?
I joined the ACTG as an advocate for HIV/AIDS. The ACTG was the best platform for me to become equipped with relevant knowledge about clinical trials. I’ve disseminated information to my community and encouraged them to participate in many trials.
Describe your community.
My community is a minority in our home country, where 20% of the population is Muslim. My community’s vulnerability as a minority group made me want to fully initiate them into health care. The HIV rate for Muslims is low, at 2%. Prevention and community-based group approaches with site staff have helped reduce the stigma they experience, as people living with HIV had been considered taboo.
What are the most important treatment issues to your community?
TB, which often accompanies HIV infection, is a huge issue. Also hepatitis, mostly for women, and aging with HIV. So my focus is to enable the community to understand their status, to accept it, to practice better health, to participate in relevant trials, and to continue treatment.
How do you want your work in the ACTG to be remembered?
As someone who helped disseminate health information and the importance of better living. As someone who ensured stigma is kicked out of my community. As someone who enrolled many participants in current and upcoming studies. And for capacity-building work such as organizing health talks from researchers.
What are your future hopes for the ACTG and HIV research?
I have many aspirations for the ACTG. First, I want clinical trials to achieve 100% enrollment. Second, for each protocol to be undertaken with the community’s full enthusiasm. Third, to recruit and involve community groups to participate in all ACTG/HIV research. Fourth, to continue to analyze consent forms to ensure they are community-centered. In regards to HIV research generally, I want the research community to involve the global community in all their activities, from the start, to harmonize the research with community goals.
