The Union Conference 2023 provided an invigorating platform for scientists, researchers, TB survivors and members of civil society and TB survivors to converge and exchange cutting-edge insights in the field of Tuberculosis. It also served as an exciting forum for the GCTA to amplify community voices and champion a people-centered, rights-based approach to tackling the world’s greatest infectious killer.
The opening ceremony of The Union Conference witnessed a powerful display of community action as TB survivors, and other community members took the stage to put forward our concerns and articulate our demands. TB survivor and activist and GCTA Youth Board Member, Phumeza Tisile, read out our statement that addressed the importance of access to shorter regimens for people affected by TB, and the need to reduce the price of Xpert XDR cartridges to make it accessible for all and the shortage of TB drugs in India and Kenya.
GCTA’s insightful session on BPaL emphasized the critical need to embrace scientific progress while prioritizing the community in our collaborative efforts to achieve the #EndTB goals. The attendees got a look into the evidence for BPaL, it’s successful roll-out in Indonesia, and community advocacy aroundt his shorter, safer and more effective DR-TB regimen.
The session was chaired by Archana Oinam (GCTA) and the speakers included Animesh Sinha (MSF), Phumeza Tisile (TB Survivor & Activist), Tiara Pakasi (NTP, Indonesia), Robyn Waite (TB Alliance) and Richa Maheshwari (GCTA).
Of all the sessions the GCTA organized at The Union Conference this year, the Power of Storytelling in TB Care is the closest to our heart. Chaired by Blessina Kumar, the powerful speakers Paransarimita Winarni (Indonesia), Nandita Venky (India), Oxana Rucsineanu (Moldova) and Olya Klymenko (Ukraine) shared their stories and how they used their TB experience to advocate for change.
Tina Shaw, the Communications Manager for Unite4TB, stated that what will truly stay with her from The Union Conference is “hearing stories of survivorship” during this session. We are grateful that so many had the opportunity to hear the stories of awe-inspiring TB survivors turned TB advocates and walk away with a powerful reminder of why we do what we do!
“You are alone in this fight against TB but you don’t understand why you are alone. Yes, I had strong side effects. My health was destroyed. But it was my mental health that suffered most.” - Olya Klymenko, Ukraine
2023 Roadmap Towards Ending TB in Children and Adolescents:
The Critical Role of Community and Civil Society Organizations in Reducing the Policy-Practice Gap
This Community Connect shed light on the new features of the 2023 Roadmap and the critical role that affected communities, community leaders and civil society organizations can play to support the implementation of the key actions towards successful achievement of the key milestones.
The session was chaired by Evaline Kibuchi (STBP, Kenya) & Ben Marais (University of Sydney) and the speakers included Ciara Goslett (TB survivor), Blessina Kumar (GCTA), Pires Paulino Canare Nota (ADPP Mozambique), Jacqueline Wambui Mwangi (Kenya) and Maxime Lunga (Club des Amis Damien, Congo).
“600 children die every day from a curable, preventable disease! This should not happen!” -Blessina Kumar, GCTA
After TB survivor, advocate and GCTA Youth Board Member Phumeza Tisile’s thought provoking remarks during the session on Transforming TB Care: Ensuring Equitable Access to Testing and Diagnosis, TB survivors, advocates and members from civil society organizations held a silent protest. We stood up, posters in hand, urging Danaher and Cepheid to reduce the prices of their XDR-TB cartridges to $5 so that they are more accessible to the people that need it most.
“I shouldn’t be here saying the same thing next year! All people deserve access to diagnostics!” - Phumeza Tisile, TB Survivor
GCTA’s session on how community-led innovations were fundamental to sustaining the engagement of TB communities with care services during the COVID-19 pandemic provided vital recognition of communities in the fight to #EndTB. Without the interventions of the community, TB detection may have stopped altogether as health systems prioritized the COVID-19 response.
The session was chaired by Daisy Lekharu (Global Fund) & Blessina Kumar (GCTA), and the speakers included Blessina Kumar (GCTA), Tiara Pakasi (NTP, Indonesia), Henry Diatmo (STP, Indonesia), Evaline Kibuchi (STBP, Kenya) and Archana Oinam (GCTA).
“People working at the grassroots level were instrumental in moving the TB work along during the Covid-19 pandemic when so much had come to a halt.” - Blessina Kumar, GCTA
This Satellite Session on the Unitaid-funded BENEFIT Kids project, which includes clinical trials incorporating efficacy, safety, pharmacokinetics, acceptability, and costing, with community involvement being central, highlighted key project findings impacting policy and practice.
During this session, Blessina Kumar, GCTA, made a powerful statement on the importance of researchers and communities working together, and the potential researchers have to be powerful advocates for the community.
The Plenary Session on the 2023 Roadmap to ending TB in children and adolescents took stock of progress made in addressing TB in these populations over the last 5 years, and included key actions designed to improve TB prevention and care, as well as accelerate progress towards the targets set by the 2023 United Nations General Assembly High-Level Meeting on the Fight against TB.
Blessina Kumar, GCTA, highlighted community perspectives on the steps needed to accelerate action to ensure children and adolescents affected by TB can lead healthy and productive lives.
This session was chaired by Steve Graham (University of Melbourne and Burnet Institute) & Mukadi Ya Diul (USAID), and the speakers included Mazidatun Maftukhah (IMUT, Indonesia), Tereza Kasaeva (WHO), Blessina Kumar (GCTA) and Moorine Penninah Sekadde-Kasirye (NTLP, Uganda).
“We need to give attention to young people to #EndTB. We are not only the leaders of tomorrow, but also the leaders of today! I want stakeholders to open more spaces for young people.” - Mazidatun Maftukhah
This Satellite Session highlighted the collaborative efforts of UNITE4TB and Pan-TB in revolutionizing the development of #TB drugs and regimens and provided insights into the clinical trial platforms of both projects. Additionally, participants in the session deliberated on strategies for engaging with local communities.
The chairs of the session were Charles Wells (The Bill & Melinda Gates Medical Research Institute) & Michael Hoelscher (LMU Klinikum) and the speakers included David Holtzman (Bill & Melinda Gates Medical Research Institute), Ramesh Dass (Otsuka Pharmaceutical Companies), Hanif Esmail (University College London), Wandini Lutchmun (LMU Klinikum Munchen) and Blessina Kumar (GCTA).
“If the communities are engaged and have better understanding from the start, there is better buy-in from the community. There is demand. There is ownership. Communities will ask for it.” - Unite4TB’s Community Advisory Group member, Blessina Kumar, GCTA
Chaired by Tereza Kasaeva (WHO) & Blessina Kumar (GCTA), this Special Session explored key UNHLM resolutions on TB and facilitated thought-provoking discussions on the post-UNHLM phase by engaging a diverse range of participants, including experts, policymakers, community representatives and stakeholders. The presenters highlighted collaborative action in the fight against TB.
This session focused on the importance of a new approach to accelerate access to the next generation of TB drugs and regimens for the over 1 million children estimated to fall ill with TB each year. The panelists discussed the impacts of access gaps on children and their families, and proposed a new approach to studying the next generation of new TB drugs in children.
The session was chaired by Gloria Kerubo Moses (Amref Health Africa, Kenya) and the panelists included Moorine Penninah Sekadde-Kasirye (NTLP, Uganda), Blessina Kumar (GCTA), Sabine Verkuijl (WHO) and Anthony Garcia-Prats (University of Wisconsin).
“Yes, we need funding, but we also need accountability in how we spend that funding.Communities need to be looked at as equal partners and not just as recipients of care.” - Blessina Kumar, GCTA
Thank you to everyone who dropped by the GCTA Booth!
It was wonderful to see so many of you in person!
