Nokuthula Mjwara, Civil Society Partnerships
On 4 December 2021, Inclusive and Affirming Ministries (IAM) collaborated with the Desmond Tutu Health Foundation Trials Unit at Groote Schuur Hospital in hosting a health and advocacy day. The aim of the day was to bring together health service providers, researchers, non-governmental organisations, and community members providing services and support to the Lesbian, Gay, Bisexual, Transgender, Queer and Intersex (LGBTQI+) community. The event was a precursor to a planned annual event to develop and strengthen partnerships and disseminate information to community partners about health research and services that are tailored to address the LGBTQI+ community. Previously, dissemination was conducted through community engagement with safe spaces, the community advisory board, and research participants. This event will bridge the gap between health research, community partners, and NGOs working collectively to reduce the gap of inaccessible research work and strengthen advocacy for equal healthcare for all.
LGBTQ clinical research in Cape Town: Making a global contribution
The Groote Schuur HIV Clinical Research Site (GSH CRS) are conducting pre-exposure prophylaxis (PrEP)- trials for men who have sex with men and transgender women as well as other treatment and prevention trials. GSH CRS is based at the Desmond Tutu HIV Centre as part of the University of Cape Town. The research site started in 1996 to provide anti-retroviral (ARV) treatment through clinical trials in response to the HIV epidemic. The site expanded to conduct clinical trials for HIV prevention and HIV treatment as well as some tuberculosis studies. In the context of the COVID-19 pandemic, the site is conducting several COVID-related research studies. GSH CRS is part of networks such as the HIV Prevention Trials Network, HIV Vaccine Trials Network, and Microbicides Trials Network, with sponsorships from pharmaceutical companies such as Merck, Gilead, GlaxoSmithKline, etc. IAM, represented by Nokuthula Mjwara, currently serves as the GSH CRS chairperson on the GSH CRS community advisory board. The community advisory board serves to assist in linking the community to the research site.
Professor Linda Gail Bekker (Desmond Tutu Health Foundation) opened the event and provided a background of the development of the GSH CRS site. She captured how the site moved from a space of exclusion, with limited access, to one where the clinical trials focused on prevention and care for all people within communities. (Historically the unit was based in Somerset West and with additional funding was able to develop the Gugulethu clinic and moved to be centrally based in the Cape metropole.) With the shift to centering prevention strategies, connecting with the community was essential, resulting in outreach strategies such as safe spaces and community advisory boards.
Her presentation was followed by Dr Richard Kaplan who presented on the future of PrEP with a focus on long-working agents. One of the current challenges faced is that once clinical research trials have proven PrEP drugs to be effective, there is a long delay in the registration of the drug. This is one advocacy opportunity for community partners in lobbying for access to more HIV prevention methods.
Neil Hassan also spoke of his research on connecting the sexuality research and urbanization research in the global south, identifying a need for the development of a consortium made up of all NGO’s, community-based organizations, and partners that focus on the needs of LGBTQI+ persons within the Western Cape. The consortium can serve to empower all constituents, develop working agreements that would guide donor relationships and reduce the “donor driven” approach to funding and organizations competing for the same pots of funding.
The speakers were followed by two panel discussions. The first panel focused on Trans health services within the Western Cape, with namely Gita November (the founder and director of Trans Tec), Fathima Patterson (from the WITs Reproductive Health Institute- Bellville clinic site) and Professor Joel Dave (from the Groote Schuur Endocrine center). The panel shared about the existing gaps that may form pockets of opportunity in strengthening the services to the Trans-diverse community within Western Cape. The challenges of the intermittent access of depo-testosterone were addressed, the need for support to services that are catering to recipients that reside outside of the Cape metropole, and the needs for a holistic health approach that is tailored and accessible to all trans-diverse persons. With the high rate of homeless Transgender woman, the need for housing, job opportunities and affirming documentation was also discussed.
The second panel focused on health services, with the Western Cape Ministry of Health represented by Dr Doug Newman and Wanita Arendse. Billy Chigwada from PASSOP presented on the challenges faced by LGBTQI+ asylum seekers and migrants in the Western Cape. He captured the challenges of limited access to health care due to needs of documentation, often delayed at the Department of Home Affairs. Mbulelo Nkaphe shared on the services provided by Health4Men, engaging with audience on current and past projects that focused on the health needs of MSM’s.
After each panel discussion, an engagement with the audience was facilitated through the moderators. The first panel was moderated by Nokuthula Mjwara (IAM) and the second panel by Amelia Mfiki (GSH CRS). The event was closed with a presentation of actionable items that will be taken forward. These ranged from networking and funding opportunities to advocacy opportunities in health system transformation in Western Cape. Attendance by participants were in line with all COVID-19 protocols.
If you would like to participate in a community advisory board serving your community, please contact Amelia Mfiki on Amelia.Mfiki@hiv-research.org.za