“Nothing For Us, Without Us!”

Text by the Stop TB Partnership. Photos credited to WHO/Sam Nuttall.

What else happened at the Union?

• Activists from around the world called for zero TB deaths in the first ever civil society declaration on tuberculosis, presented to Union delegates.

• ACTION Director Kolleen Bouchane talked TB activism with U.S. Assistant Surgeon General.

• Bureaucrats and activists alike discussed the post-MDG process, calling for “bold policies and targets.”

The TB community has the reputation of being highly technical. Precise. Subdued.

But not this week.

100 TB activists marched through the Kuala Lumpur Convention Centre, landing at the opening ceremony of the Union World Conference on Lung Health just as delegates were taking their seats.

The group demanded more ambitious targets for stopping TB, the funding to meet those targets, and an end to the use of detrimental language in the TB community.

“The Union conference is the one place where everyone in the TB world comes together. If it were to pass without any significant activist visibility, our calls for action would remain just words. This year we wanted to make our presence felt in a much stronger way,” said Blessina Kumar, Vice-Chair of the Stop TB Partnership Coordinating Board and a representative for communities affected by TB.

Some of the protesters carried placards calling for “zero TB deaths”, “more funding for TB”, or “nothing for us without us”.  Others placards were blazoned with the messages “50% won’t cut it” and “no blood on our hands” (both referring to the proposed target of reducing TB deaths by  50% in the post-2015 era - which would still leave 600 000 people dying per year).

Many held up signs calling on the TB community to ban some standard TB terms, like “defaulter” and “suspect”,  that are now under scrutiny because  they may negatively influence the attitudes and behaviour of health workers and the TB-affected community.

“The urgency to address TB is somehow absent. We need that urgency as people are dying every minute. We as activists are willing to do anything to ensure that this urgency is there at the forefront of the minds of governments, funders and those who are setting global targets for TB."

William Mbewe, a musician from Zambia turned activist, summed up his reasons for participating in the march this way. “I suffered from TB. Over the years lots of my friends passed away because of stigma. So I decided to stand up as a public figure and talk about suffering from TB, hoping that lots of other people will come out of the darkness.”

View more photos from Stop TB Partnership