Community stakeholders representing various Khayelitsha-based organisations gathered to consult with CIDRI-Africa’s clinical research team on future tuberculous meningitis (TBM) research on 31 October 2018. Organisations represented included the Treatment Action Campaign, MSF (Doctors without Borders), local health committees, advocates for people living with HIV, primary health care clinicians, and the Khayelitsha clinical research site Community Advisory Group.
The clinical research team provided background information on TBM, previous studies, and future plans for clinical trials. Previous research suggests that addition of aspirin to standard treatment could improve TBM outcomes. However, this concept needs to be tested in larger clinical trials to clarify the effect of aspirin treatment. Dr Angharad Davis presented an overview of proposed TBM clinical trials which was well received by the stakeholders. This prompted discussion and reflection on the urgent need for improved treatments for TBM.
Mr David Binza, manager of Khayelitsha Community Health Centre, spoke eloquently of his recent experience of TBM: “My cousin walked in at KDH [Khayelitsha District Hospital] with a diagnosis of TB meningitis and never walked out. We took his body home days later.”
Mr Binza wished there had been a greater sense of urgency and would have liked more information that this was a direly difficult set of circumstances. The attendees were humbled and very struck by his account.
Meeting participants agreed on several factors critical to the success of clinical trials, including psychosocial support for patients and immediate family members, and appropriate trial information messaging.
Stakeholders encouraged the team to schedule follow up meetings and assured them that continuous efforts will be made to support our research.