[For a short synopsis of this story, scroll down to the link to the news story: this is the play by play]
As Dr Jos. Luis Castro of the Union concluded his welcoming address, opening the Stop TB Symposium, which always precedes the Union’s World Conference on Lung Health, whistles began to blow loudly, and a mob of activists, clapping and chanting “ZERO TB! ZERO TB! ZERO TB!” emerged from the back of the auditorium, carrying signs and wearing matching T-shirts that also said ‘Zero TB’ on the front. On the back, they said:
0 HIV Deaths
0 TB Death
1.2 Million TB Deaths
Their signs had captions such as ‘0 TB in Bulgaria’, ‘No more MDR-TB in Romania’, ‘We’re sick of TB, why aren’t you?’ ‘ZERO TB Deaths in Azerbaijan’, ‘Stigma Kills!’ ‘Eliminate: We can’t wait.’ ‘Weak Targets = Death’ and ‘TB Control WON’T Cut it’
Mounting the platform, Colleen Daniels of Treatment Action Group took the mike.
“We are civil society and we are present at this conference. This might not have happened as much before, but we are here and we are demanding that you all in this room have vision, that you all in this room decide that we are not going to control TB but we are going to eliminate TB.”
“We are not going to accept any more that in 2011 a country finds 10 drug resistant TB cases and in 2012 you find 20 and you think that is progress! And you come and present at this conference and you say, “Look at the progress we’ve made!” You did it.”
“It is not progress when we have more than seventeen thousand people waiting for treatment for drug resistant TB. [SHAME!!! Shouts one activist] It is NOT acceptable that you think this is allright! That you still continue to have goals, targets, visions that are lacking; that are small; that actually just don’t matter.”
“We don’t want that any more. We know because we’ve seen the papers in the Lancet, that you can do it. We’ve seen the projects that you’ve put into peer review journals that say: “Look at the scale-up we did in Tomsk, in Rwanda, in Khayelitsha” – we know you can do it, you choose not to. We will no longer accept that. We want political will! We want political commitment!”
“This is the ‘Treatment Action Group’, we put out a report every year – the research, where we look at how much money was spent on research for tuberculosis – for the past eight years there have been minor, minor increases. For the first time this year it decreased. It decreased by over thirty million dollars.
“Pharmaceutical companies are leaving the TB world and we sit back and say, ‘Okay’. Nobody in this room representing the pharma sits up and says, ‘Enough! Pfizer, shame on you for getting out of the anti-infectious diseases [loud cheering]! Shame on the national TB control managers who come to this meeting, talk about progress, go home and do nothing!’”
“And for all of you who are donors in the room and you come to me and you say: “We need activism, we want you to do more efficacy!” And then you don’t fund it!”
“That is shameful. We only compare with HIV: “Oh look at the activism in HIV” – well, you funded the activism in HIV! You don’t do it in TB.
“We want no more TB deaths. We want zero TB new infections. We want zero suffering and stigma from TB!”
“Unbelievable, there’s a group of twenty-seven countries that all came together and now they are looking at the high level consultations looking at, ‘what should our vision be post 2015? ‘Zero HIV deaths’, they are saying. ‘Zero child deaths’, they are saying.”
“Where are we in TB? We’re saying ‘1.2 million deaths is okay’ – it’s not okay. It really isn’t. And we have WTF [on the T-shirts the activists were wearing]? What the fuck?! [applause] It is NOT okay!”
“It is not okay that we approached all of you. Because when I asked most of you in this room – I talked to you, I know a lot of you – I said, “well you all wanted a t-shirt”. It was like, “great, I’ll give you a t-shirt. Will you march up on stage with me?”
‘No. No, we won’t. I might take a sticker but I’ll hide it.’ “
“No! We can no longer have this response. Political will starts with you, political will starts with me. If we don’t demand that TB is a priority in our countries, guess what, when we go to the country coordinating making mechanisms of the Global Fund we’re not there and then we cry about why we didn’t get the money. But that’s because all of you weren’t there in the room demanding the money. So I urge you in this conference that at the end of the conference we will come out and we will say: ‘We have a vision to eliminate TB. We have a vision to do something.’”
“Katherine Floyd put out a paper last year where it shows, in modelling, that if we actually just implemented all of the tools that we have today – so nothing new, only the tools we have today – we could move from two percent reduction per year of TB cases, to ten percent. And if we had new tools where we had investment in those new tools, we could bring that down even more where we could actually see elimination. “
“The same with TB deaths – do we think that five percent in TB deaths is alright?”
“Does anybody in this room think that it is okay?! It isn’t! It really isn’t. And we can do much more. And we urge you in this conference: Do more, speak out, you are advocates just like we are.”
[loud applause with cheers: “Zero TB!”]
“Nobody is standing up, nobody screams that we want zero TB deaths! I see you sitting in the front row with you standing up and saying, ‘No more! Zero TB deaths!’ “
[Colleen challenging one or two people in standing up and joining in]
“This is the enemy we want to see at this conference. No more sitting back and saying, ‘Oh woe is us.’ Woe is nobody! If you don’t stand up, who will? Nobody else. We are the people who have to change this response to TB, and we WILL do it with this energy – not just sitting down and waiting for anybody else to do it! “[applause]
Notable, as the rest of the morning session went on, Dr Mario Raviglione, head of WHO’s Global TB Programme — wearing one of the activist’s T-shirts — and others would describe a new TB Strategy for post-2015 very much in line with what the activists were demanding — but noted that substantial research and innovation would be required to meet the target of Zero TB by 2035. In fact, the topic of the symposium was how to accelerate that research.
For the news story on the event on the Stop TB Website, go here.
A vimeo of the demonstration can be found here.
Lance Sherriff performed the transcription of Colleen Daniels speech.
Dr Lucica Ditiu of the StopTB Partnership is also greatly worried about the drop in TB funding
“For those of you who don’t know, there is a 6 billion dollars investment for research in HIV/AIDS and it is only six hundred million in TB – and even then, we go down. If the monies are not coming to support these efforts, we go nowhere. To speak of a vaccine in 2025…, if the money is not coming, the clock is ticking. We look for new drugs, we look for new combinations, we look for new point-of-care [diagnostic tests] – do we have the funding for that? Not really,” said Dr Lucica Ditiu of the Stop TB Partnership just after the activists left the stage.
“So today, we obviously need finances. And for us the reality is that — lets be also very blunt — we have two groups – we have money in the countries coming from the Global Fund [and the other piece is the USAID and the US government]. The Global Fund, for most of you, coming from the countries that are eligible, is your bread and butter. Because 80% of the funding that goes in the countries come from the Global Fund,” she said.
But she also relayed what might potentially be good news for TB elimination — though what impact it might have will have to be seen. The Global Fund has recently taken a big step, announcing that for all countries that are high TB-HIV burden — 38 eligible — the Global Fund is requesting that the concept notes for TB and HIV be submitted together, since in those settings, it is so very often, she said, providing life-saving care for the same person living with two diseases.