Taking action against diabetes in crisis settings
The number of people displaced by humanitarian crises is rising, and there is a pressing need to address non-communicable diseases like diabetes. Devising practical, scalable and cost-effective solutions, and allowing these solutions to be integrated with broader healthcare systems, is more important than ever.
As the past two years of the pandemic have confirmed, non-communicable diseases (NCDs) are both a long-neglected and under-funded health burden and a growing crisis globally, particularly for low- and middle-income countries (LMICs). While it’s difficult enough for people living with NCDs to access consistent treatment in these regions, such care has been largely an afterthought in humanitarian settings like conflict zones or regions that have recently suffered natural disasters.
This health gap is especially significant because the number of people trapped in these situations or on the move globally has continued to increase, with more than 350 million people currently affected by such crises and nearly 80 million people displaced around the world as of 2019, according to the International Alliance for Diabetes Action (IADA). Around 85% of this population is being hosted in LMICs such as Uganda, Lebanon, and Pakistan, and more than 65% of these cases involve protracted refugee situations, according to the United Nations High Commissioner for Refugees (UNHCR). It’s a problem that threatens to explode as climate change affects natural resources and infrastructure, accelerating levels of migration.
For aid organisations and governments contending with desperate populations who are often homeless and hungry, addressing chronic conditions may previously have seemed like a luxury. Yet, as the increasing number of people on the move puts more pressure on national healthcare systems and donor funding, there is a growing consensus that the failure to include NCDs as part of the broader healthcare offering for displaced populations is a false economy. Providing evidence of the value of addressing NCDs alongside other health issues in humanitarian contexts will be a key challenge for policymakers and health experts, especially as they look to attract much-needed donor funding.
Spotlight on diabetes
As experts seek strategies to treat NCDs in crisis situations sustainably, some experts have focused on diabetes management to provide policymakers with evidence about the benefits of standardising care in a way that benefits both displaced people and the broader population. In 2019, a group of diabetes experts and non-profit organisations met at Harvard University to brainstorm ways to formalise the diagnosis and treatment of diabetes in humanitarian settings, culminating in a series of proposals known as the Boston Declaration.
The Boston Declaration outlined four major targets to define the group’s work over the next few years: unified and strengthened advocacy; universal access to insulin, diagnostic equipment and hypertension medicines available as part of humanitarian responses; establishment of a unified set of clinical and operational guidelines for diabetes in humanitarian crises; and improved and coordinated data surveillance. Achieving these aims is likely to involve collaboration between health experts, NGOs and health ministries.
“If you can manage diabetes well—one of the most complex NCDs—you can likely manage other NCDs well,” says Dr Sylvia Kehlenbrink, director of Global Endocrinology at Brigham and Women’s Hospital, co-author of the Boston Declaration and the director of the NCDs in Humanitarian Settings programme at the Harvard Humanitarian Initiative. “In essence, we convened a kind of coordinating body to help align everyone around a key issue and make sure there is no duplication.”
If you can manage diabetes well—one of the most complex NCDs—you can likely manage other NCDs well
Diabetes is one of the most prevalent NCDs globally and one of the most difficult to manage, especially in LMICs, where it’s growing rapidly. It’s a particularly challenging condition to address in unstable and poorly resourced humanitarian environments, characterised by short-termism in focus and funding. Establishing a platform to identify and provide care to diabetic patients in crisis settings can help shape evidence-based approaches to treating all patients living with metabolic syndrome and other NCDs in humanitarian environments, as well as improve the detection and management of the disease in the wider population.
The importance of creating more integrated and universally accessible healthcare systems that identify and treat people at risk of NCDs has never been more important, as the covid-19 pandemic has illustrated. At the same time, it’s clear that such solutions need to include displaced people, which will require national health ministries to work with NGOs to build comprehensive care pathways that work seamlessly across populations and, where possible, across borders.
“Our approach is to see how we can help the national healthcare systems in a country, and we are also trying to strengthen the existing healthcare system more specifically where the crisis is,” says Jakob Sloth Madsen, a senior advisor at the World Diabetes Foundation (WDF). “The question is whether it makes sense to separate a protracted humanitarian response from a long-term health system strengthening effort; in our view, you need to integrate the two dynamics and build permanently viable solutions for the health system in those countries.”
Obstacles to consistent care
The complexity of treating diabetes is a case in point about the challenges involved in identifying and treating NCDs in unstable situations and creating a robust framework that can provide greater consistency of care.
The NGO Médecins sans Frontiéres (MSF) noted in a recent article that diagnosis rates for diabetes and other NCDs remain extremely low in people living in crisis environments. For those who have been diagnosed with diabetes already, insulin is often unavailable in remote or rural environments with limited access to resources, and it’s often dangerous to travel to healthcare centres to collect insulin or receive treatment. Storage of medication is also difficult in places where fridges are in short supply and daily temperatures can exceed the recommended storage range. And the expense of managing diabetes remains a major problem, with diagnostics often even more costly than medication, according to Kehlenbrink.
Meanwhile, the lack of regular healthy food supplies, a chronic concern for low-resource populations or people who have been displaced from their homes, exacerbates the challenge of managing diabetes. Kehlenbrink says humanitarian food assistance programmes have historically focused on undernutrition and the food baskets provided in humanitarian settings are typically composed of goods that provide nutrition such as rice, sugar, oil and salt, which are incompatible with the needs of people living with diabetes.
Delays in detecting and treating diabetes in these settings can lead to complications like kidney failure, heart disease and vision loss. MSF has recognised the fact that many of its patients present with existing and newly detected NCDs, including diabetes, as well as other health needs such as malaria and malnutrition. Consequently, it offers a range of preventative, primary and secondary health services—incorporating acute and chronic management of diabetes—as part of its treatment of Burundian refugees in the Nduta camp in northwest Tanzania.
Plus, healthcare professionals working in crisis settings already have experience with another chronic illness, HIV, which offers lessons on how to ensure adherence to treatment in challenging circumstances. One 2014 study found that 87% to 99% of displaced people with HIV had achieved 95% adherence and positive treatment outcomes, and that with the appropriate support, HIV treatment outcomes for forced migrants could be similar to those in the host community.
In addition, some NGOs in humanitarian environments issued modified or supplementary food baskets to the elderly or people living with HIV/AIDS or TB where nutrition was a priority, Kehlenbrink says, adding that NGOs could aim to make similar arrangements for people with type 1 diabetes or those who require insulin. The availability of alternative diets, where possible, would also help aid agencies to manage the conditions of those living with type 2 diabetes and hypertension.
DATA SHORTAGE Keeping track of medical care in humanitarian settings is often a paper-based process
Confounding the conventional wisdom
Lebanon has some of the most extensive experience with caring for refugee populations and provides an example of how more comprehensive systems could work. It’s host to two primary groups of Middle Eastern refugees, says Dr Mona Osman El Hage, an assistant professor of family medicine at the American University of Beirut (AUB). The country’s Palestinian refugees still largely live in camps in the south of the country, where their care is managed by the United Nations Relief and Works Agency for Palestinian Refugees in the Near East (UNRWA), while the more recently arrived population of Syrian refugees are housed in local communities, where their care is supported by NGOs along with the Ministry of Health through the country’s 245 primary healthcare centres (PHCs).
Because medicines and lab tests for chronic conditions are traditionally covered by private donors, not all PHCs offer them, Osman says. A programme for type 2 diabetes that AUB is running in conjunction with the WDF is helping to fill that gap for both the Lebanese and Syrian populations and could serve as a model for integrating care for displaced people living within the community with that for domestic populations.
“This project is really timely for everyone, because it supports not only awareness and screening, but management of diabetes and hypertension, as well as coverage for needed blood tests, followed up in health centres,” Osman says. “This project will build the capacity of healthcare workers in providing a good service to diabetes patients and is helping to contain the brain drain [of physicians from Lebanon]. It is also building the capacity of diabetic patients for self-management.”
Diabetes was not on the humanitarian radar 10 years ago; they were not screening for it, and they were not looking for it
Keeping track of people in need
One of the key challenges facing policymakers looking to set guidelines and frameworks for treating NCDs in humanitarian settings is the absence of data on management and guidelines for chronic conditions in such settings. These difficulties are hampered by the lack of funding allocated explicitly for diabetes and other NCDs in humanitarian contexts.
“If you look at humanitarian settings, data is scarce on mortality rates,” Madsen says. “We are working at helping healthcare services improve their health information systems so they can have a more solid registry of who they are treating.”
Other approaches will be necessary, however, for some displaced populations. Traditionally, diabetes and other NCDs are managed via patient records held at clinics. While that is possible in cases treated within the community, for migrants in temporary settings different approaches will be necessary to ensure that patients receive follow-up care. In some cases, this means making sure that patients have simple hand-held records to carry with them, as well as appointment books and the use of reminder messaging or community health workers to trace patients. In Lebanon, the Sijilli project, named after the Arabic word for ‘my record’, is archiving the medical information of Syrian refugees electronically so their healthcare providers can access it anywhere in the world.
A ‘Bootcamp’ on NCDs in humanitarian settings held in Copenhagen in 2018 harnessed the opinions of researchers and NGOs to develop six goals for policymakers. Among them was a recommendation that member states fund the World Health Organization (WHO) and partners to develop a “secure, personalised, mobile health data system for humanitarian settings, building on new technology”, as well as a direction to governments and aid organisations to plan for and resource NCD prevention before and during humanitarian crises. Bootcamp participants suggested that new technologies, such as Blockchain, could be used to ensure secure and reliable access to patient data.
Any effort to develop comprehensive policies for dealing with diabetes and other NCDs in humanitarian situations will need to be tailored to a variety of different environments and stages of conflict, ranging from more spartan and flexible programmes for people who are not in fixed accommodation, to more traditional treatment and prevention pathways for those living in the community. Kehlenbrink says she is encouraged by the willingness of so many stakeholders to work together.
“Diabetes was not on the humanitarian radar 10 years ago; they were not screening for it, and they were not looking for it,” she says. “I’ve been doing this for five plus years, and the amount of progress that has been made is unbelievable. It’s slow progress, but it’s progress.”
PHOTOS – Anas Alhajj and Thomas Koch – GRAPHICS – Trine Natskår