Everyone has a role to play in tackling TB. As a product development partnership, one of TB Alliance's core strengths is its ability to convene and facilitate collaboration among a global network of partners. These partnerships span the public and private sectors, and include collaborations with the pharmaceutical, manufacturing, academic, civil society, donors, healthcare providers, patients, and the broader global health sector, thereby enabling us to tackle the monumental goal of improved treatment for all. Here, we highlight our partnership with communities.
Click here to see a slide show of the 2nd Community Engagement Forum
Without informed and engaged communities, clinical research is not possible.
TB Alliance is an early pioneer in supporting and making Community Engagement (CE) a critical component of any TB research trial. Through our CE program, TB Alliance works with people affected by TB to empower them with knowledge and skills to promote open communication and participation in the TB drug research conducted in their communities.
In 2014, CE programs played a critical role in relaying the results of the Phase 3 REMox trial to communities that participated in that research. At the same time, CE coordinators were tasked with scaling up their work in preparation for the STAND trial. CE programs will be initiated at many new research sites participating in the STAND trial in Asia, Eastern Europe, and South America as well as Africa where the program has been ongoing for several years.
This year, TB Alliance helped introduce a toolkit for monitoring and evaluation of community engagement efforts. The tools were developed in partnership with AVAC and will serve as a way to quantify work undertaken by communities. This will help document the effect of CE for potential donors, partners, or other TB researchers that could implement similar programs. At the same time, such a tool allows the monitoring of progress and more concretely defining successful strategies to obtain shared goals.
CE representatives were trained on the monitoring and evaluation toolkit at the 2nd Community Engagement Forum, which included 35 representatives from sites working with communities in Kenya, South Africa and Tanzania. In addition to training, the CE Forum offered a chance for CE coordinators to share their experiences and learn from one another.
The cost of TB treatment incurred by health systems is well known. However, what is less known is the financial burden of TB treatment that patients shoulder themselves.
In 2014, TB Alliance, working with five other organizations, published the first study to quantify the true cost of TB treatment to patients. The study analyzed nearly 100 patients in each Tanzania and Bangladesh, and looked at factors including lost economic productivity, cost of travel, food supplements, and other indirect financial impacts of the disease. Overall, the total cost per patient in the final two months of the continuation phase was catastrophic; in Tanzania, it constituted 77% of 2-month national income per capita and in Bangladesh, 89% of 2-month national income per capita. The findings lend further support to show how shorter TB treatments can result in economic improvement for patients.
At the 2014 Union World Conference for Lung Health, TB Alliance brought together national treatment program managers, treatment providers, patients, and advocates to understand their preferences relating to new products in development. Feedback was received on issues relating to the pill size, number of pills, shape, and color. The feedback will be directly applied to the development of the PaMZ regimen, currently undergoing late stage development, as well as future treatments in the pipeline. This work helps ensure we meet the commitments of our
TB patients and stakeholders from around the world assemble
to offer advice on key characteristics of new products