The Union: community presence & advocacy continues to grow at annual lung health conference

Each year, advocates, affected community members, researchers, scientists, academics, private sector companies, and government representatives gather for the biggest tuberculosis-related conference in the world – The Union World Conference on Lung Health, which this year took place from October 11-14 in Guadalajara, Mexico. It is a time for those working in tuberculosis (TB) from across the globe to present their newest findings, discuss the political challenges in fighting this disease, and work together to find ways forward.

This year’s Union Conference had an unprecedented tone – a combination of optimism, anticipation and a sense of urgency. The TB community is looking forward to two immensely important and influential high-level meetings that are expected to take place before the next Union Conference convenes in The Hague in 2018: first up is the Global Ministerial Conference on Ending TB hosted by the WHO and taking place in November of this year in Moscow, followed by a UN High Level Meeting (HLM) on TB in 2018 (specific dates TBC). The TB community has never seen this kind of high level commitment from the world’s leaders to discussing how they can work together to end TB, let alone this type of acknowledgement of what a pressing issue it is.

While the Union Conference is often criticized for being focused primarily on the more technical side of TB and not doing enough to engage and involve communities and civil society, the inroads that have been made in recent years (including going from a single booth for Communities within the Exhibition Hall to a wholly separate space for sessions and discussions that is free and open to the public) are actually quite substantial. And with the new structures for engagement and input being built around the HLM, there is reason to be optimistic that civil society’s presence and influence over the Union Conference will continue to grow.

TB High Level Meeting: Communities and Civil Society

There is widespread commitment across the TB community to ensure that the voices of community members are strong and heard throughout these high level political processes, which led to the first meeting of the Affected Communities and Civil Society Advisory Panel ahead of the Union in Guadalajara. The 15 members of the panel were selected by the Civil Society representatives to the Stop TB Partnership’s Coordinating Board through a competitive process to represent their regions and respective organizations and personal skill sets. Over the course of the next year, members from the Panel will act as Focal Points in all of the Work Tracks that are being built into the planning structure for the HLM and regularly report back to the wider civil society community on opportunities for input and participation.

ICSS (host of the GFAN Secretariat) was also selected to act as the Coordinator of the Advisory Panel and will be engaging with civil society and affected communities throughout the HLM process to ensure open and transparent information-sharing and engagement and supporting the advocacy agenda of the Advisory Panel.

90 (90) 90: The Tuberculosis Report for Heads of State and Governments

In anticipation of these upcoming meetings, Stop TB released its Global Plan Progress Report for Heads of State and Governments, which will serve as an important tool for advocates in their work over the next year. Some of the key takeaways from the report include:

No country achieved both 90% treatment coverage and 90% treatment success
Less than 50% of people developing TB were successfully treated
The biggest gap was in diagnosing and putting people on treatment
Only 1 in 5 people developing DR-TB were diagnosed and put in treatment
Only 1 in 10 people developing DR-TB were successfully treated

Take action: Glacial pace of scale-up of new TB Drugs

In research & development news, MSF released an issue brief titled Four Years and Counting: Slow scale-up of newer MDR-TB drugs, which shares some stark facts on the current state of roll-out of drugs for treating drug-resistant TB, including:

Less than 5% of people who could potentially benefit received treatment with bedaquiline and delamanid in 2015
Only 1,000 more people received treatment with newer drugs in the first half of 2017 compared to 2016
Cure rates remain abysmal: 52% for people with MDR-TB and 28% for XDR-TB with standard treatment

With this brief, MSF is urging governments to step up the use of newer TB drugs, and the pressing need for better tools, drugs, and vaccines will be prevalent throughout the HLM process as well.

The ACTION global health partnership also released a call for action and a set of infographics drawing attention to the urgent need for countries to expand access to new drugs for MDR-TB. On their website you can find the shareable graphics, sample social media posts, key messages for advocating to ministries and more information on where the global TB community is falling short on treating MDR-TB.

UNION Conference: Highlights from “Encuentro”

While many of these activities were happening on the sidelines of the Union Conference, the Encuentro (community space) within the Conference itself played host to a number of sessions and discussions of particular interest and relevance to TB community members. One such discussion was a community consultation on TB stigma. Building off of a roundtable discussion that took place earlier in the year in Bangkok, as well as the Stigma Toolbox and Measurement Guide document produced by KNCV and other partners in 2016 and 2017, community members met in Guadalajara to discuss the importance of working on stigma reduction strategies in TB, how best to engage communities around the topic, and the need for better coordination and engagement in order to broaden the scope of input and be able to maximize the impact of the Stigma Guide.