TBEC Board Co-Chair, Dr. Jonathan Stillo, has been a member of the Global TB Community Advisory Board (Global TB CAB) for over 7 years. The membership is a mix of TB survivors and community members who are research literate and capable of taking part in things like clinical trial protocol reviews, guideline development groups, and other activities that require more technical knowledge. They work on several areas that overlap with TBEC priorities including access to prevention, diagnosis, and treatment. TB CAB plays an important role as a strong voice for the community in both research and roll-out of new technologies and treatments.
In 2017, Jonathan and other TBEC and TB CAB members were involved in a series of meetings held by the European AIDS Treatment Group (EATG) discussing the situation of drug-resistant TB and its impact on the communities of people living with HIV in Europe (PLHIV). TB is the number one killer of PLHIV. Preventative treatment, while important for everyone who has TB infection to prevent it from becoming an active disease, is particularly crucial for people with HIV. Jonathan cited the need to improve collaboration between the TB and HIV communities as a way to improve the situation of drug-resistant TB and its impact on people living with HIV. For more details check here.
An example of the TB CAB’s efforts to ensure universal, affordable access to TB treatment is their 14 July 2020 statement following the announcement made by Johnson & Johnson and Stop TB Partnership Global Drug Facility (GDF) in regards to the reduction in price of bedaquiline from US$400 to US$340. However, TB CAB noted that even with the maximum percentage of free goods, the net price of a six-month course of bedaquiline falls short of the civil society’s demand for bedaquiline to be priced at no more than US$180 per six-month course. Many of the countries in the World Health Organization’s European region (EURO) are classified as upper-middle-income, so even though they have high rates of DR-TB, they will not benefit from the price reduction. So even though the EURO region is the WHO region with the highest rates of DR-TB in the world, these countries will still face very high costs if they are to implement WHO’s current, safer, and more effective all-oral DR-TB guidelines. This price reduction is a step in the right direction, especially considering the large amount of public financing that supported the development of bedaquiline, but if we are really going to bend the DR-TB curve, all people need access to it. For more information click here.
One of Jonathan’s favourite activities is training activists to better understand the new tools and regimens that are available so that they are able to more effectively advocate in their home countries. The goal is to help them be stronger advocates so they can ask not only for “better treatment” but rather can point to WHO guidelines and demand the same quality of prevention, diagnosis, and treatment that is available elsewhere and that everyone has a human right to access.