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The Impact of COVID-19 on the TB Epidemic: a Community Perspective

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The Impact of COVID-19 on the TB Epidemic: a Community Perspective Results of a global civil society and TB affected community led survey The impact of COVID-19 on the TB epidemic: A community perspective 02 | THE IMPACT OF COVID-19 ON THE TB EPIDEMIC: A COMMUNITY PERSPECTIVE RESULTS OF A GLOBAL CIVIL SOCIETY AND TB AFFECTED COMMUNITY LED SURVEY | 03 Acknowledgements Contents This initiative and report, or the supporting advocacy resources that were developed, would not Foreword 05 have been possible without the time and commitment of members of the civil society-led TB/ 01 Executive Summary 08 COVID-19 Working Group. Thanks, gratitude, and sincere appreciation go to Kate O’Brien (We are TB), James Malar (Stop TB Partnership), Waiswa Nkwanga (ACTION Global Health Advocacy 02 Key findings & calls to action 12 Partnership), Petra Heitkamp (TB PPM Learning Network), Rahab Mwaniki (KANCO), Alexandra Zimmer (McGill TB Center), Cintia Dantas (Global TB Caucus Secretariat), Blessi Kumar (Global 03 Methodology 26 Coalition of TB Activists), Archana Oinam (Global Coalition of TB Activists), Timur Abdullaev 04 People with TB 31 (TB People), Austin Obiefuna (Stop TB Developing NGO Delegation), and Robyn Waite (Results Canada). TB survivors Rhea Lobo, Saurabh Rane, and Nandita Venkatesan supported the initiative 05 Frontline healthcare workers 37 by conducting targeted outreach to recruit people with TB to participate in the survey. Summer 06 Policy and Program Officers 45 student interns Nathan Mendel and Tayler Hernandez worked with Results Canada to clean data and support analysis efforts. Copy editor Poilin Breathnach and designer Estelle Kalp both did 07 TB Advocates 53 a fabulous job bringing this report to life while working patiently with numerous “cooks in the 08 TB Researchers 58 kitchen.” Sincere thanks to everyone involved in this important project, which symbolizes unity and strength in community coordination. May we now all continue to work together to maximize Endnotes 64 the impact of this collaborative initiative to maintain a focus on ending TB and to mitigate the devastation of COVID-19 on the people most at risk. Cover photo: © Stop TB Partnership 04 | THE IMPACT OF COVID-19 ON THE TB EPIDEMIC: A COMMUNITY PERSPECTIVE RESULTS OF A GLOBAL CIVIL SOCIETY AND TB AFFECTED COMMUNITY LED SURVEY | 05 Foreword TIMUR ABDULLAEV ALLAN RAGI BLESSI KUMAR AUSTIN OBIEFUNA JOANNE CARTER THE RT HON LUCICA DITIU MADHUKAR PAI TB PEOPLE EXECUTIVE DIRECTOR GLOBAL COALITION STOP TB DEVELOPING RESULTS LORD HERBERT STOP TB MCGILL UNIVERSITY KANCO OF TB ACTIVISTS NGO DELEGATION INTERNATIONAL CO-CHAIR OF THE PARTNERSHIP GLOBAL TB CAUCUS “TB has always loved “COVID-19 is driving “This report is a rallying “Communities have "Coronavirus is “I welcome this report "The devastating impact “This report shows company: HIV, diabetes, people affected by TB cry from communities come together in exploiting the world’s with its strong call of COVID-19 mitigation that the COVID-19 poverty, stigma and into a downward spiral of affected by TB. We listen this time of crisis. inequities in health, from civil society for measures is projected pandemic is absolutely discrimination, to poverty, fear and anguish. to the voices of people Collectively, we created making tuberculosis additional funding, to set TB programs devastating for our name but a few. For The advent of COVID-19 suffering, collected a survey, reached out for even deadlier in turn. increased resources back 5-8 years and quest to end TB. If TB, COVID-19-related is a wakeup call to the here by communities responses, ensured wide Without massive new and sustained political needlessly add another we were climbing lockdowns came in state of our health around the world. Our representation, and investment in TB and commitment to respond 1.4 million TB deaths. a mountain before very handy, leaving systems and the invest- communities need coordinated our efforts in primary health to both COVID-19 TB programs, healthcare COVID-19, that mountain people with no food, ments that we must make support to be engaged to understand realities delivery overall, and TB pandemics workers and TB- has now become Mount no work, no money, no to not only end TB but and empowered in TB and inform decision strong international in this time of crisis. affected communities Everest. This means we healthcare. The various to also realize universal and COVID-19 response, makers. Together, we partnerships, support As parliamentarians, are innovating and need to work extra hard barriers we faced to health coverage. We and those caring and will advocate to realize for community-led we stand with you in overcoming challenges, to mitigate the damage access TB services were therefore must re- working need sufficient the recommendations services, and an advocating for stronger while TB interventions and stay focused on compounded. What a think health in the protective equipment. and action items as approach grounded in and better-coordinated and service providers TB for the long haul. gift for TB — and what context of the pandemic We hope that our voices well. This is a real equity, this pandemic’s health and social are being reassigned, Collaboration and a disaster for people and beyond, by being as a community will unique collaborative consequences will security systems.” depleted and diverted. solidarity within the TB affected by TB. It is deliberate on getting be heard through this piece of work driven by continue to multiply.” TB services are community are critical if time to remind TB that the right data to inform report and that the communities. United essential services and we are to have any hope its place is in history decisions and resource response will be is the only way we can must be prioritized and of getting back on track books, no matter allocation while ensuring shaped by this reality.” respond to a global supported!” to reach the SDG goals.” who its friends are!” the best value for pandemic.” resources. Governments must be committed to deliver integrated and people centered health services, while citizens must arise and hold the governments accountable for the realization of national and global health commitments." RESULTS OF A GLOBAL CIVIL SOCIETY AND TB AFFECTED COMMUNITY LED SURVEY | 07 Executive 01 summary If we had used a quarter of the resources allocated to COVID... we would have eliminated TB a long time ago. © Yakubu Nurudeen/ Plan International, Nigera HEALTHCARE WORKER FROM MOROCCO 08 | THE IMPACT OF COVID-19 ON THE TB EPIDEMIC: A COMMUNITY PERSPECTIVE RESULTS OF A GLOBAL CIVIL SOCIETY AND TB AFFECTED COMMUNITY LED SURVEY | 09 Tuberculosis (TB) is the world's leading infectious disease, People with TB: killing around 1.5 million people each year. Despite global and national efforts to end TB and the availability People with TB from Kenya (n= 159) and India (n= 58) reported significant challenges in accessing TB services during the pandemic and associated lockdowns. Difficulty finding of cost-effective medicines to treat and cure it, too transport to access TB care, changes in TB services, and fear of contracting COVID-19 many people continue to suffer from this old disease. during a healthcare visit were cited as key barriers. People with TB also reported expe- riencing increased stigma due to the similar symptoms of both respiratory diseases. In response to early warnings that COVID-19 was having a devastating impact on people affected While most people with TB were given additional medicines to continue treatment at by TB and TB programs around the world, 10 global networks quickly came together to take action. home, they expressed a clear and urgent need for immediate non-medical support, in- They launched a civil society-led survey, aimed at richening our understanding of experiences in vari- cluding nutritional, economic and psychosocial support. ous regions and key stakeholder groups, with the following objectives: l To identify critical gaps and needs in TB services resulting from the Frontline Healthcare Workers: pandemic and raise awareness among national governments, program implementers, policymakers, parliamentarians1 and the wider global TB frontline healthcare workers (n=150) reported significant reductions in TB care due health community to the pandemic. The main reasons for interruptions related to the redeployment of es- sential resources and personnel to respond to the public health crisis at hand, and gener- l To raise the voices of TB-affected communities and civil society to ensure ally weak health systems struggling to cope with an influx in demand on services. Par- their ideas and concerns were incorporated into national, regional, and ticipants around the world reported a lack of personal protective equipment (PPE) and global responses underscored how the unsafe and challenging working conditions were resulting in low l To support greater alignment of TB and COVID-19 priorities and services morale and mental-health issues. There is an urgent need for increased support, includ- at country level ing investment in PPE, personnel, supplies, and tools, as well as innovations in program- l To work collaboratively to ensure coordinated advocacy efforts and concrete ming to offer quality digital and community-based care. political actions to address identified gaps in funding, resources, and services l To strengthen engagement of and relationships across TB-affected Policy and Program Officers: communities and civil-society networks engaged in the fight to end TB. Responses from policy and program officers (n = 115) revealed that TB services and The findings of the survey offer a grassroots perspective on how COVID-19 is impacting five key program resources had declined significantly because of the pandemic. TB notifications stakeholder groups, namely, people with TB, frontline healthcare workers, program and policy offic- have decreased drastically and personnel are being redeployed to respond to COVID-19. ers, TB researchers, and TB advocates.2 The report provides a summary of findings for each stake- Participants from both the U.S.
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