Community and Civil Society Demand Their Voices be Heard in UN Political Declaration on TB
Attendees watch the inaugural address from Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization, at the Multi-Stakeholder Hearing on TB in New York on 8 May.

The call and response of “Yes we can, end TB” at the Multi-Stakeholder Hearing (MSH) on tuberculosis (TB) made one thing clear — the voices of the community will be heard. With negotiations of the UN Political Declaration now underway, what does the TB community expect to see?

Members of the global TB community, including survivors, community and civil society representatives, healthcare workers, private sector representatives, academics, researchers, and parliamentarians came together for the MSH on TB at the United Nations (UN) headquarters in New York on 8 May. Many attended adjacent hearings on Pandemic Prevention, Preparedness, and Response (PPPR) and Universal Health Coverage (UHC) on 9 May.

These hearings provided an essential platform for stakeholders to voice their demands ahead of the UN High-Level Meetings (HLMs) on TB, PPPR and UHC that will convene world leaders from 20-22 September to set the agendas for these three intersecting global health challenges.

At present, we’re far from meeting the global targets to end TB by 2030, as set forth in Sustainable Development Goal 3 on health and reinforced by member states at the first TB HLM in 2018. Five years on, we need urgent transformative action to make up for lost time.

COVID-19 reversed almost two decades of progress in the fight against TB, constraining already scarce resources for essential TB services and R&D. In 2021, 10.6 million people fell sick with TB and 1.6 million people died, both figures increasing for the second consecutive year.

The TB community’s demands are clear. Stakeholders in New York shared their six Key Asks with over 45 permanent country missions to the UN on the sidelines of the hearing to inform member state negotiations of the Political Declaration on TB. 

To quote Austin Obiefuna, vice-chair of the Stop TB Partnership: “What makes a successful political declaration? Look no further than these Key Asks!”

Comments from 20 panelists and over 25 interventions from the floor echoed the shared community vision. This includes demands to ensure access to existing and new tools, particularly vaccines, human rights, gender equity, increased and sustainable funding, accountability, psychosocial and nutritional support, and clear alignment with the political declarations on UHC and PPPR.

Affected community and civil society members gather for a community briefing ahead of the Multi-Stakeholder Hearing on TB in New York City on 8 May.

So, how can member states heed the TB community’s call?

 Zero Draft of the Political Declaration: strengthening the community’s demands

The signing of the Political Declaration in September will set the agenda for the TB response for the coming five years. Following insufficient progress on the 2018 declaration, TB advocates have expressed deep concern at the lack of concrete and time-bound commitments in the Zero Draft. This includes concerns about weak commitments for financing, a rights-based approach, and equitable research and development (R&D) practices, alongside no numerical targets for scaling up the provision of diagnosis, treatment, and prevention.

Advocacy engagement at the member state level continues at full force ahead of the 20 June deadline to ensure the declaration appropriately reflects the community’s demands. TB stakeholders are now advocating for specific, accountable, and actionable commitments to ensure we reach the 2030 End TB goals.

An equitable and accountable TB response

The community is resolute in demanding an equitable, gender-responsive, rights-based, and stigma-free response. To close the gaps in TB care, this must serve the intersecting needs of all people affected by TB, with robust psychosocial services and legal protections as explicit commitments. Civil society and vulnerable groups, such as pregnant people, people living with HIV, and people who use drugs, must likewise be included at every stage, including in R&D, to guarantee a successful response.

Gender equity is one of many aspects cutting across the three HLMs. Women represent 70% of health workers but only 25% of leadership positions, while they often bear the brunt of catastrophic household costs incurred through TB. The political declarations should be a powerful tool to demand equal pay, leadership roles, and financial protections for women. Similarly, young people must be empowered to lead as the next generation of the response.

But the declaration is not enough — we need independent monitoring for accountability and compliance to avoid the pitfalls of the last five years. This will be imperative to deliver the US$250 billion investment between 2023-2030 estimated in the Global Plan to End TB.

Universal access to new and existing tools to end TB

Access to existing and new tools must be enshrined in member states’ commitments. Reaching the End TB goals requires urgently accelerated development, rollout, and access to essential new tools.

We need fast, point-of-care tests that are affordable and accessible to everyone. We need universal access to World Health Organization (WHO) recommended regimens and the development of shorter, less-toxic therapies. And with only the century-old BCG vaccine available, which is largely ineffective in adolescents and adults, we need multiple new vaccines that cover all populations – reflecting calls in a recent open letter signed by 1,188 stakeholders.

Financing commitments by research area and country-specific fair share targets that acknowledge a country’s TB burden and research and economic capacities are a precondition to accountability. In 2018, governments pledged to invest $2 billion annually in TB R&D over five years. By 2021, only 30% of the target had been invested — for TB vaccines, this was only 15%

The Global Plan now estimates that TB R&D requires $5 billion annually from 2023 — a fraction of the more than $100 billion spent on COVID-19 R&D by January 2021. Concerningly, the Zero Draft calls for reaching this $5 billion annual target only by 2027, risking further delays in delivering essential new tools, notably vaccines.

To move the access needle forward, we need access and transparency conditionalities that span the R&D continuum, especially for publicly funded research which accounts for 70% of annual funding for TB research. Such conditionalities seek to maximize public return on public investments that drive TB innovation and will support governments to make informed decisions on manufacturing, purchasing and procuring new health technologies. Moreover, to avoid COVID-era monopolies that drive unequal access, commitments should also support product development and manufacturing in high-burden regions.

Opportunity for cross-cutting impact

The TB community demands clear alignment across the political declarations to leverage the huge potential for impact within the three agendas. The whole-of-government and whole-of-society approach demanded throughout the hearings won’t be possible otherwise. This must be multisectoral and leadership must be centered in high burden countries.

Yet, TB was absent from the formal interventions during the hearings on PPPR and UHC, which unlike TB lacked sufficient civil society panelists. Questions remain on how well aligned the final declarations will be.

Glancing at TB, we see how effective TB services can strengthen the foundations of primary healthcare and serve as a strong marker for the attainment of UHC among communities with the poorest access to healthcare. TB infrastructure, widely mobilized in the COVID-19 response, including for surveillance, testing, and clinical trials, underscores the role of TB services in an expansive and functional health system. A fully equipped TB response and R&D pipeline would be a driving force of efficient PPPR and UHC responses.

The TB community has provided a ready-to-roll consensus-driven manual to deliver an equitable and accessible TB response. With this in hand, “yes we can, end TB”. We urge member states to heed our call. Nothing about us, without us!

Erin McConnel is a senior TB project associate at the Treatment Action Group (TAG), working to capacitate and support community advisory boards that help shape the TB research and dissemination globally. Erin joined TAG in 2022 after working in infectious disease drug development, teaching English abroad, and policy analysis for medicine access, disability, and justice.

Priyanka Aiyer is from the TB HLM 2023 Affected Communities and Civil Society Coordination Hub. She is a communication specialist experienced in designing and implementing multi-pronged campaigns at national, regional and global levels. She earlier worked with the Global Coalition of TB Advocates as the Communications and digital media officer and is also the South-East Asia representative on the Union Community Advisory Panel.

Shaun Palmer is a communication specialist at IAVI, where he leads the TB Vaccine Advocacy Roadmap (TB Vax ARM) coalition and its related global advocacy initiatives. He additionally leads communication activities for several European-funded studies and co-chairs IAVI’s Global Diversity and Inclusion Committee.

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