To better understand the high incidence of T1D in Yemen, Life for a Child partnered with Sana’a University, the International Organization for Migration, and the Sana’a Diabetes Centre to conduct a study. This research focuses on the clinical characteristics, biomarkers, T1D subtypes, and diabetic ketoacidosis (DKA) risk factors at diagnosis among children and adolescents.

The findings are concerning. Children in Yemen experience significant delays in T1D diagnosis and treatment, leading to a high incidence of DKA at diagnosis. DKA can rapidly become fatal, and even when not fatal, delayed diagnosis for T1D results in severe health complications, affects growth and development, compromises quality of life, and worsens long-term health outcomes. T1D is challenging to manage even under the best circumstances, and the importance of an early start cannot be overstated. With 79% of the study population under 19 years old presenting with DKA at diagnosis, immediate and urgent intervention is essential to protect the lives and futures of young people living with T1D in Yemen.

In a timely alignment with our research, Life for a Child has entered into a Collaboration Agreement with the Yemeni Diabetes Association. This partnership aims to implement targeted interventions to reduce adverse outcomes from misdiagnosis and to improve access to at least an ‘intermediate care’ level. Our specific recommendations include:

1. Enhancing Early Diagnosis: Through comprehensive training programs for healthcare professionals.
2. Increasing Community Awareness: Focusing on the recognition of T1D symptoms.
3. Ensuring Timely Access: To essential diabetes care services, including vital insulin and supplies.

We are positioned to advocate effectively for these recommendations. Through our new collaboration with the Yemeni Diabetes Center, we strive to empower healthcare professionals through education and capacity building, while directly supporting young people with diabetes by providing crucial insulin and supplies. These interventions are critical to reducing life years lost to T1D and improving health outcomes for children in Yemen. Through these efforts, we aspire to ensure that every child with T1D in Yemen receives timely and effective care, thereby significantly improving their quality of life and health outcomes. This collaboration underscores our commitment to translating research findings into impactful, on-the-ground initiatives.

You can view the study here.

Emma Klatman Global Policy and Advocacy Manager

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In October 2023, the World Health Organization (WHO) officially recognized the crucial importance of Self-Monitoring of Blood Glucose (SMBG) for people with insulin-treated diabetes, marking a milestone achievement. This recognition was the result of collaborative efforts by Life for a Child and FIND, advocating for SMBG inclusion on the Essential Diagnostics List. This news is opportune, aligning with WHO’s Global Diabetes coverage target of ensuring 100% access to affordable insulin and SMBG for people with type 1 diabetes by 2030.

This month, we published a commentary in Lancet Diabetes and Endocrinology, outlining this milestone and proposing strategies to ensure policy advancements translate into tangible improvements in under-resourced settings, where SMBG remains unaffordable for many.

A milestone achievement, but more work is needed

While the inclusion of SMBG in the EDL represents a significant advancement in addressing disparities, it serves as only the initial phase of a larger journey aimed at ensuring equitable and sustainable access for all individuals in need. To realize this objective, we propose the following actions to support tangible improvements in SMBG access for T1D communities in low- and middle-income countries:

• The WHO should provide guidance and support to national health systems and organisations working in diabetes care.
• Policymakers, organizations and individuals must embrace collaboration and advocate for the adoption of essential diagnostics lists at the national level.
• Health systems must establish robust monitoring mechanisms.

What steps are Life for a Child taking to bolster these achievements?

Capacity Building and Education: At Life for a Child, we recognize the pivotal role of education in empowering individuals to effectively utilize SMBG in type 1 diabetes (T1D) care. We provide continuous education and support to our local partners on SMBG and have an extensive range of educational resources for children, parents, and healthcare professionals, available in 24 languages.

Benchmarking: We believe in establishing robust monitoring mechanisms to track the adoption and impact of SMBG. Regular evaluation enables us to pinpoint areas for improvement and furnishes advocates with data to champion increased access to essential diabetes management tools and treatments. Through our support to local partners in data compilation, research endeavors, and participation in initiatives such as SWEET, we facilitate data collection, benchmarking, and evaluation.

Communication: We believe in the importance of disseminating high-level developments to a variety of stakeholders. Regarding the updated Essential Diagnostics List (EDL), we are encouraging our NGO partners an all diabetes centers and associations with connections to Ministries of Health to relay the WHO’s acknowledgment of the importance of meters and strips to decision-makers.

We see the addition of SMBG to the WHO’s Essential Diagnostics List as a significant milestone in global health for type 1 diabetes. While ensuring access to affordable SMBG won’t happen overnight, by uniting as a global community, each of us can contribute to realizing this shared vision together.

View our recent article published in The Lancet Diabetes & Endocrinology.

View the WHO news release detailing the addition of blood glucose monitoring tools.

Herbert from Bolivia underlines the importance of blood glucose monitoring in the artwork he submitted to the Life for a Child art competition.

Emma Klatman Global Policy and Advocacy Manager
Rachel Clayton Marketing and Communications Manager

The post An achievement for global access to self-monitoring, but what comes next? appeared first on Life for a Child.

In 2013 there were only 22 known children and young adults with T1D under 25 years old in Burkina Faso. We knew from experience that there should be many more, and it was highly likely that many young people would be dying from misdiagnosis or lack of access to supplies and education. Today, after ten years working in the country, our suspicions have been confirmed. Between 2013 and 2022, 312 new cases of T1D were diagnosed, five cases of T2D and two suspected cases of maturity-onset diabetes of the young.

In the graph below, you can see sharply rising T1D incidence over the last ten years since Life for a Child commenced support in 2013, which is actually good news. This rise means far fewer young people are dying without a diagnosis.

Dr. Yempabou Sagna is an endocrinologist at our local partner center in Burkina Faso and one of the authors of the study. He said, “I think the most positive finding is that there is sharply rising T1D incidence, mainly due to increased detection rate with the support of Life for a Child. Many of these patients would likely have died unrecognized from non-diagnosis. This study will make it possible for decision-makers to understand that this type of diabetes also exists in Burkina Faso, and we hope that this will help to facilitate the subsidy of insulin.”

Due to the limited access to insulin and high prices, almost all children and youth with T1D in Burkina Faso are referred to Life for a Child.

Although there is no pediatric endocrinologist in the country, there are many skilled and dedicated healthcare professionals, and Life for a Child is very well known across the medical community. Indeed, all adult endocrinologists and internal medicine specialists in the country were involved in this study.

Dr. Yempabou Sagna said, “It was firstly the lack of specialists that motivated me to work in pediatric diabetes. In Burkina Faso, the management of childhood diabetes is integrated into adult services. In the long run, I would like to create pediatric endocrinology and diabetology department in my country.”

As of today, Life for a Child supports 315 children and young individuals across Burkina Faso.

We expect this number to continue to rise for some time, as long as access to supplies, education, and awareness improves. We are committed to providing ongoing support in these areas.

Dr. Sagna and his team are working hard to improve care and provide new opportunities for diabetes education and peer support. In 2022 they organised the country’s first ever T1D camp. This second camp in 2023 saw 58 young people attend for four days of games, peer support and diabetes education.

Despite this encouraging progress, the study shows that there is much work to be done.

The number of young people dying from diabetes and complications in Burkina Faso remains substantial. Non-diagnosis is thought to be the commonest cause. At the end of this study follow-up period, 271 of the 312 young people were known to be alive and were still followed up in hospitals. Among the 40 others, 23 had died, four had emigrated, and 14 were lost-to-follow-up.

We are determined to continue providing young people with insulin and blood glucose monitoring supplies, diabetes education resources and healthcare professional support. Burkina Faso will benefit from our recent program extension to provide support to young people up to the age of 30, and we are helping to provide equipment for regional health centres. In addition, we will continue to collect data, research and advocate for young people living with diabetes in the region.

Dr. Yempabou Sagna said “I think it is necessary that programs like Life for a Child should continue their action in developing countries like Burkina Faso because in view of this study, hundreds of lives have already been saved by early diagnosis.”

Explore the comprehensive study here.

In 2013, Life for a Child forged a groundbreaking partnership with Yalgado Ouedraogo University Hospital and the NGO Santé Diabète. This collaboration aimed to provide diabetes management supplies and reliable support to children and young people living with diabetes. We also started collecting data, to capture the health outcomes and experiences of young people we support.

Emma Klatman Global Policy and Advocacy Manager
Rachel Clayton Marketing and Communications Manager

The post A remarkable increase in survival appeared first on Life for a Child.

This is one of the core messages of a new paper titled, ‘Meaningful Engagement of People Living with Noncommunicable Diseases: Empowering Participation in Health Decision-Making’, authored by one of Life for a Child’s advisory committee members, Mark Barone and Global Advocacy and Policy Manager, Emma Klatman.

Mark and Emma advocate for a sincere integration of the expertise of people living with noncommunicable diseases (PLWNCDs), emphasizing the need to move beyond symbolic gestures. They stress that decision-making processes must include PLWNCDs with diverse perspectives, varying socioeconomic backgrounds, and representation from different geographic locations. Mark and Emma assert unequivocally that the voices of PLWNCDs should be accorded equal weight alongside industry leaders and influential figures in global health.

“It is high time to move from identifying people living with NCDs merely as ‘patients’ towards recognizing their worth rather as ‘impatients’ who are indispensable and irreplaceable contributors in all phases of decision-making processes.”

The paper explains the importance of destigmatizing, empowering and empathetic language practices when addressing and referring to PLWNCDs. Despite the availability of guidelines promoting such language, adoption remains low, and stigmatizing or disrespectful wording is still common. Increasing the adoption of respectful language and associated behavior can help to reduce hierarchies and power imbalances.

In essence, Mark and Emma establish the advantages of meaningful engagement of PLWNCDs in health decision-making. They provide a roadmap for not only empowering their participation but also advocating for the indispensable role PLWNCDs play in shaping healthcare policies and practices.

You can view the full paper here.

Rachel Clayton Marketing and Communications Manager

The post Lived experience is indispensable in health decision-making appeared first on Life for a Child.

Two pivotal studies conducted by Life for a Child in India and Sudan were discussed in this review. These studies, conducted as part of ongoing Life for a Child advocacy since 2015, aimed to provide new information on thermostability of human and analog insulin in a real-world hot climate setting, as well as the efficacy of traditional evaporative cooling devices in reducing storage temperature and loss of insulin potency.

The Review has profound implications, particularly for individuals living with insulin-requiring diabetes in resource-limited settings. Access to refrigeration is not always available for those living with diabetes in these circumstances and these findings could potentially reduce wastage of insulin vials and alleviate the anxiety associated with the efficacy of their medication, thereby offering tangible improvements to their daily lives. For those who rely on insulin and may live vial-to-vial, and their health professionals, this knowledge could alleviate some of the burden of worry about the efficacy of their medication in the absence of refrigeration.

Life for a Child views the Review as a significant win in global diabetes advocacy. It stands as a testament to the influence of research and collaborative endeavors in shaping evidence-based guidelines. Our research partnerships with esteemed organizations like the DREAM Trust in India, University of Florida, and University of Gothenburg, and the Sudanese Childhood Diabetes Association have been instrumental in shaping these guidelines.

Moving forward, our aspiration is that this groundbreaking review will catalyze a reassessment of human insulin package inserts. The potential revision of these inserts holds promise for providing more precise and accessible information to individuals managing diabetes and their healthcare providers. This evolution could further empower people in effectively navigating their diabetes management.

Emma Klatman Global Policy and Advocacy Manager
Rachel Clayton Marketing and Communications Manager
Dr. Graham Ogle General Manager

The post A win for advocacy on insulin thermostability appeared first on Life for a Child.

Emma Klatman, our Global Advocacy and Policy Manager, shares her reflections on a new study by Life for a Child and partners: Insulin thermostability in a real-world setting.

In under-resourced settings, insulin scarcity elicits insecurity and anxiety for young people and families impacted by diabetes. Indeed, living vial-to-vial is a common reality for many. People in this unstable situation can be endangered further by lack of access to appropriate storage conditions for insulin – a medicine that can spoil if not stored correctly—leading to potential wastage.

It’s a scary situation to be in when your survival hinges on keeping limited vials of insulin safe from misplacing them, accidentally dropping them on the ground, or exposing them to temperatures that could potentially degrade their potency. Even when a family living in an under-resourced setting can access a secure quantity of insulin, their dwelling may not have electricity. In these circumstances, insulin is often stored in water-filled clay pots, or underground.

A water filled clay pot used to store insulin in India.

Current guidelines for insulin storage state that insulin should be stored in refrigerated settings (at 2-8°C), and never frozen. Once insulin is kept outside of a refrigerator, there is generally a maximum period of approximately one month at standard room temperatures (20–25°C) before it must be discarded. Given that existing data on insulin stability outside these recommended manufacturer guidelines are scarce, Life for a Child and local partners have long advocated for more research to be carried out in this area, to determine whether these guidelines could be loosened in circumstances where refrigerated storage is impossible.

It is for this reason that Life for a Child carried out a study with colleagues from the DREAM Trust (Nagpur, India), the University of Florida, and the University of Gothenburg looking at the potency of commonly used human and analogue insulin preparations in a real-world setting. The potency of insulin samples stored in a refrigerator, shaded areas, and clay pots was studied at intervals of one, two, and four months.  This study took place during an Indian summer at a Life for a Child-supported clinic – the DREAM Trust in Nagpur.

This was a pilot study with a relatively small number of samples. However, the results showed that acceptable insulin potency was maintained up to two months for all samples of all insulin preparations. At four months, all samples from three analogue insulin preparations and three of four samples for each of the human insulins also maintained a relative potency of 95% or more. The results were comparable to another study done in simulated conditions done by the University of Geneva and partners.

The study also showed that storage of insulin in a container within a water-filled clay pot was effective in reducing storage temperatures, and also slowing the loss of insulin potency. This builds on previous work by Life for a Child and partners in the ‘Clay Pot Olympics Study’.

Michael K. Skjødt with a selection of pots from the ‘Clay Pot Olympics Study’.

Further studies with larger sample sizes and analysis of insulin function and integrity are needed. We also encourage insulin manufacturers to release further data that they may have in this area.

A deeper understanding of insulin stability outside refrigeration may possibly lead to loosening of storage guidelines. This could help reduce cost, waste, and family and professional anxiety about these challenging situations.

The post New research: Insulin stability outside refrigeration appeared first on Life for a Child.

There are wide gaps in the data about the incidence and impact of T1D. The Index attempts to fill these gaps with educated estimates that support the case for further investment and better care. 

The Index presents numbers for T1D on a country-by-country basis. Some of the key estimates include:

• How many people live with type 1 diabetes. 
• How many additional people would still be living today, if they had not died due to complications arising from T1D. 
• The number of young people with T1D dying without a diagnosis in 2022. 

The Index also offers a series of interventions to help change the story for people living with T1D, including timely diagnosis and accessible care.  

Life for a Child has been working on these issues in under-resourced communities for over 20 years. We have seen our interventions have deep and long-lasting impact for individuals, families, communities and nations. Here are just some examples. 

• We develop diabetic ketoacidosis (DKA) awareness posters in local languages to increase awareness of the signs and symptoms of T1D so that timely diagnosis can be made, and swift treatment initiated to prevent life-threatening DKA. The impact of one of these campaigns, coupled with increased provision of care, can be seen in Mali where a huge increase in the number of children and young people living with T1D was recorded between 2007 and 2016.  
• We source and develop high-quality educational materials for children, young people and their families that are written in their own language and reflective of their culture. We recently developed a carb-counting booklet focusing specifically on Indian foods to support self-management for T1D communities in India.  
• We develop long standing partnerships with trusted local health clinics to provide insulin, syringes, blood-glucose monitoring equipment and diagnostics free of charge to young people in under resourced communities in 44 countries. Manuel’s grandfather told us that he wouldn’t be able to afford the insulin and supplies his grandson needs if it wasn’t for support from Life for a Child. 

Everything we do is grounded in the belief that diabetes care is an inherent human right – and this is what we advocate for. The T1D Index provides us, our partners and the families we support, with valuable estimates to help make a compelling case for increased provision of care. 

Our ultimate aim is to become redundant. But until then, we’ll stop at nothing to help. You can donate to support our work here.  

The T1D Index and accompanying research has been published in the leading diabetes and endocrinology medical journal, The Lancet Diabetes & Endocrinology, you can access the paper free with registration here. The Index was developed by JDRF,  Life for a Child, The International Diabetes Federation, the International Society for Pediatric and Adolescent Diabetes and Beyond Type 1.

The post The T1D Index appeared first on Life for a Child.