A group of tuberculosis community activists is taking their quest for representation in responses to TB global, joining efforts across borders to make their voices heard, an announcement this week says.
The Global Coalition of TB Activists came together at a February Stop TB Partnership meeting in Geneva, the announcement says, with the aim of closing gaps that leave those most affected by tuberculosis out of decision making at local, national, and global levels.
“Experience throughout the world has proved that where TB patients, activists and communities are involved in TB prevention and care efforts, research, crucial issues of new case detection, community health services, regulatory affairs and provision of timely services are addressed effectively,” a document posted by the group says.
The formation of an internationally based coalition will help involve those individuals and communities “in a global, strategic and integrated way,” Alberto Colorado, told Science Speaks. Colorado, a sociologist, patient advocate and international public health consultant who has written about the role of poverty, inequity, and marginalization of indigenous populations as determinants of the disease, says those are the issues that often go unaddressed in tuberculosis responses.
“There are a lot of issues that aren’t addressed in the medical model,” Colorado said. Health economists also can have a limited view, Colorado said. “Economists are thinking of the price of paying all this money for the drugs. Our point is all the suffering.”
And while those affected by tuberculosis have stories to tell, often, he said, their voices are lost in global responses.
“They are small groups, fighting by themselves,” he said, “and when no one is listening, they are dying in a quiet way.”
The announcement of the GCTA’s launch included statements from Global Fund to Fight AIDS, Tuberculosis and Malaria Executive Director Mark Dybul, and Stop TB Partnership Executive Secretary Lucica Ditiu, welcoming the creation of the group.
“Coverage and access to TB services must increase for everyone, but especially for vulnerable and stigmatized groups,” Dybul’s statement says, “and this is impossible without the involvement of communities and activists.”
Among the goals listed by the GCTA: Supplying input for TB community representatives on the boards of the Stop TB Partnership and other global initiatives, identifying activists and building their skills, and working with policy makers to develop rights-based and patient-centered tuberculosis responses.
The GCTA is inviting TB patients and survivors, members of affected communities and TB activists working across the world to join the coalition through its Google Group.