The following post is by Annmarie Leadman, Director of Communications at the Aeras Global TB Vaccine Foundation, and Babs Verblackt, Associate Communications at TuBerculosis Vaccine Initiative – TBVI
Knowledge about the global tuberculosis epidemic is misunderstood and will only change with greater understanding of the disease, said TB advocates during a facilitated discussion on TB vaccine advocacy September 24 in Tallinn, Estonia, part of the 2nd Global Forum on TB Vaccines. Advocates and researchers discussed methods to reframe the issues for donors and stakeholders to significantly increase general support and funding for TB vaccine research.
Sixty-one percent of the TB vaccine funding pool comes from The Bill & Melinda Gates Foundation, according to Claire Wingfield, TB/HIV Project Coordinator of the Treatment Action Group (TAG). Her organization publishes a report called “Tuberculosis Research Funding Trends,” the second edition was published last year. The first TAG funding report called for an increase in TB research and development spending to $2 billion per year to eliminate TB by 2050. “We need to diversify the funding pool,” Wingfield commented. “Basic research and operational research are woefully under funded.”
“The major misconception in the developed world is that people think tuberculosis is not a problem today,” said Joris Vandeputte, Senior Vice President of Advocacy and Resource Mobilization at TuBerculosis Vaccine Initiative (TBVI), a consortium of European TB vaccine researchers. “But it is a problem that should concern everybody. Tuberculosis interconnects with among others poverty, maternity health, education.”
Participants discussed the need to put a face on the TB epidemic to share the experiences of those who have TB and to build a broader advocate community.
“If we can show TB’s personal impact, we can better demonstrate why a vaccine is needed,” said Jennifer Woolley, the Director of Advocacy at the Aeras Global TB Vaccine Foundation.
Robert Nakibumba, a Kampala-based TB advocate who serves as a community representative to the Stop TB Partnership’s working group on new vaccines also underlined the importance of involving local communities. “They are not only patients or participants in clinical trials. They are going to get the vaccine, they are serious stakeholders.”
Nakibumba also discussed barriers to community advocacy, including persistent stigma around TB and HIV. On drumming up community support for new TB vaccines, he said, “In order to generate support we have to explain the limitations of BCG, they must know the existing tool is not effective.”
Claire Wingfield, of TAG, touched upon an important issue for activism in general. “One of the biggest challenges is that activists are asked to do a lot but no one funds them,” she said. “That unfunded mandate is a huge barrier and challenge that is not discussed openly enough.”
At the same time she stressed that everybody, including researchers, can be an activist, “A lot of people don’t realize that they are activists too. We don’t always chain ourselves to things or wear provocative T-shirts. And ‘activist’ is not a bad word. TB is killing mother and babies. Consider reframing the message.”