Published February 17, 2021
Fatima, a Master’s student in Liverpool, England, was diagnosed at the young age of 20 with Multidrug-resistant Tuberculosis. Fatima is a TB survivor, she endured 594 days of treatment and debilitating side-effects, all whilst fulfilling her requirements and obligations for her undergraduate degree.
Fatima's diagnosis and treatment limited all aspects of her life. One of the biggest burdens Fatima endured was financial. She was advised to apply for the “Personal Independence Payment”, a social protection package for those coping with long-term disease and disability. Fatima was rejected twice, being told that her condition was not severe enough to receive aid. After 2 years of trying, Fatima was finally approved to receive the lowest payment possible, barely enough to help her get by. As a result, Fatima is financially dependent on her husband and others. To this day, Fatima is unable to commute to her University due to severe abdominal pain, the source of which is unknown.
Fatima’s case draws attention to the many issues that afflict those diagnosed with TB, in particular how they can succumb to gaps in the safety net. Her case attestation calls for more focus and comprehensive implementation of social protection (SP), or policies and programs that aim to reduce poverty, loss of income, vulnerability, risk, and catastrophic costs that result from and result in negative health, social circumstances and outcomes.
“I shouldn't have to prove that I'm sick. I shouldn't have to beg for financial support, because for me it was just as important as the tablets I was receiving. And it shouldn't really take two years for my condition to be recognized for what it is. And I think that it's so difficult to actually see what one individual suffering with TB is going through, not only with the physical side effects but the mental stresses and the social side effects...I do hope that this small speech of mine gives you an insight on what it's like to live through TB, and it reminds you all that TB doesn't end. It doesn't end. Once all your treatment finishes, there's life after TB that you have to deal with and it's a big struggle.”
The 2020 Health and Social Protection Action Research and Knowledge Sharing (SPARKS) Conference brought together thought leaders to push for the implementation of SP to achieve the United Nation Sustainable Development Goals (SDGs). In four sessions over two days, researchers, government officials, United Nations (UN) officials, and development partners shared information about experiences, research, and programs on health-related SP, evidence on the need for SP during times of ill-health, implementation challenges and opportunities relating to SP, universal health coverage, and what can be learned from the current pandemic.
At the conference, health activists and TB survivors as well as government officials such as the Special Assistant of Pakistan’s Prime Minister and Federal Minister, the Director General of the Ghana Health Service, Director General of Planning and Foresight at the Ministry of Planning of Niger, and the Executive Director of the Occupational Safety and Health Center in the Philippines shared their experiences on social health protection. Conference participants also included UN officials from the World Health Organization [WHO] International Labor Organization [ILO], and the United Nations Children’s Fund (UNICEF) and professors of epidemiology, population health, and public health from universities around the globe such as University at Buffalo, University of Cape Town, Karolinska Institutet, the University of Gondar, the University of Ghana, the Federal University of Brasilia, the University of Gothenburg, Liverpool School of Tropical Medicine and the London School of Hygiene and Tropical Medicine.
Discussions at the conference include themes related to COVID-19’s social and economic impact, namely that projections show 500 million people around the world will fall into poverty as a result of the pandemic, and 250 million are in need of food aid. Unless these trends are met with effective mitigation strategies like SP, it could result in nearly four hundred thousand additional deaths this year alone. The COVID-19 pandemic has also been linked to an increase in infectious diseases, such as TB, due in part to the closure of clinics. Tereza Kaseava of the WHO and co-Chair of the SPARKS Conference stated, “50 percent of people affected by TB and their households are still facing [catastrophic] costs without action on social protection.” The financial stress placed on those with TB threatens to undo the achievements that have been made in the past; as such, this financial stress must be mitigated. Current research points to the need for facilitating coordination between sectors, according to Patrick Kuma-Aboagye, the Director General of the Ghana Health Service and Dr. Ren Minghui, Assistant Director-General for Universal Health Coverage/Non-communicable Diseases at WHO. Kuma-Aboagye and Minghui note that there is an independent and significant association between spending on SP and TB incidence prevalence. As such, the ILO has developed “Social Protection Floors”, or standards that include 18 guiding principles around design, financing, operations, and so on, to support the development of national SP systems. These principles place emphasis on coherence, coordination, and collaboration between SP institutions, but also in policies across sectors, including health, labor, finance, social policy, and more.
SP is key to achieving the SDGs, in particular SDG 1 (income security along the life cycle and its relevance in times of ill health), SDG 2 (social protection, food security, and nutrition), and SDG 3 (universal health coverage through social health protection). SP has the capacity to act as key stabilizers for the economy; they contribute to higher resilience and a more adequate response during pandemics (SDG 1). SP has the robust potential to eradicate poverty and end hunger and malnutrition via ensuring access to nutritious food with cash transfers (SDG 2). SP and health interact in favorable ways. In fact, social protection, which improves food security and nutrition, can lead to lead to increased HIV and TB treatment adherence and efficacy, and is also thought to reduce the risk of HIV incidence driven by structural factors, indicated by Allison Oman Lawi, Deputy Director at the United Nations World Food Programme. SP also contributes toward the achievement of universal health coverage (SDG 3); benefits for work injury, maternity, children, disability, etc. address the consequences of poor health, and cash transfers have been shown to strengthen the economy, which in turn improves health outcomes. These protections – including cash transfers linked to other complementary health and nutrition programming (often referred to as “cash plus” or integrated social protection) – positively impact the determinants of health, ultimately improving the health of the population.
SPARKS presenters also highlighted the importance of SP in times of ill health. SP can mitigate catastrophic costs. As such, businesses and governments must carefully consider these costs as they plan for sickness benefits. In addition, stakeholders from the community, those who the benefits will impact, and the national level must be involved in the development of interventions in order to properly address needs and ensure success of the program. As Tom Wingfield, Consultant Infectious Disease Physician and Senior Clinical Lecturer at the Liverpool School of Tropical Medicine, emphasizes, “Contextualization has to be on the ground, has to be ‘in the country’”. The importance of integrating social assistance and health systems at all levels of government must not be downplayed, especially at the local level as they tend to be most difficult to integrate. Tia Palermo, Associate Professor of Epidemiology and Environmental Health at the University at Buffalo (SUNY) stated “It’s not just about coordinating local systems on the ground, but as international actors we need to coordinate amongst ourselves across different agencies on the ground”. There must also be a focus on vulnerable populations, such as those who are already sick, as they are much more likely to also be poor.
Finally, the SPARKS 2020 conference highlighted the success of different SP programs (including the LEAP 1000 program in Ghana and the Jigisemejiri Cash Transfer program in Mali), in addition to the challenges and opportunities of implementing SP. A key factor for long-term impacts and sustainability of SP is utilization of existing resources and programs through an integrated systems approach is vital for the longevity of a program. Of note, cost-effectiveness is essential for sustainability, however it remains difficult to accurately measure the cost-effectiveness of programs, especially when programs may have broad impacts across a wide range of health and economic dimensions. Policy makers and the incentives they respond to are also a substantial component to the implementation and adoption of these programs. These incentives tend to be very contextual but the current pandemic has created an incredible opportunity to mobilize political will.
Effective and comprehensive SP will ensure that people like Fatima do not face similar hardships. Adequate safety nets that protect against poverty, loss of income, and exposure to risk and catastrophic costs will reduce negative health and social outcomes and help achieve the SDGs set forth by the United Nations.
Individuals interested in learning more about discussions from the SPARKS 2020 Conference can find all presentations and materials, including e-posters, on the SPARKS network website. All sessions were livestreamed and are available on Facebook.