Objective
The objective of this grant is to provide sufficient financial resources to LFAC so that an acceptable, cost-effective level of care can be provided to all children and youth with diabetes who are supported by the LFAC program.
The grant funds will be used for three purposes:
1. Provision of blood glucose meters and strips so that children and youth can do “self-monitoring of blood glucose (SMBG)” – where they test their own blood glucose at least 3-4 times per day. Without access to SMBG, young people cannot correct out-of-range blood glucose levels or safely administer insulin. They also risk extreme glycemic swings that can result in acute complications. In contrast, when SMBG is available, they are able to learn what happens to the blood glucose level after certain foods or a particular exercise activity, or when they are sick with another illness. They can then adjust their insulin dosages to adjust to the factors – keeping their blood glucose at a level that does not cause chronic complications.
2. Support of HbA1c and microalbuminuria testing. HbA1c is a test that is done every three months. It provides an overall indication of the blood glucose in that period, and whether target levels are being achieved. The periodic results of this test are a powerful tool for both the doctors and nurses, and also the child and their family, to understand progress and to take steps to improve the situation when this is necessary – through changes to the insulin regimen, diet, and exercise.
Microalbuminuria testing is done annually. This can provide an early warning of diabetic kidney disease. When the level of microalbuminuria is elevated, additional steps can be taken to help prevent progression.
3. Funds will be used for specific targeted support in certain recipient countries that have large numbers of young people with diabetes to strengthen care coordination, diabetes education, data collection, and logistics to ensure that the supplies, and the medical care and diabetes education are available not just in the large population centers, but across the respective country.
Background Rationale
In well-resourced countries, health systems can deliver comprehensive levels of type 1 diabetes care. Insulin injections are given three to four times per day or by infusion pump, and children, adolescents, and adults with type 1 diabetes either check their blood glucose multiple times per day with a blood glucose meter and strips, or use a continuous blood glucose monitoring device. Young people can live healthy, active lives and grow up to realize their hopes and dreams.
In contrast, in many less-resourced countries care, if provided at all, is often at a “minimal level”. Even insulin is not properly provided by many governments in lower-income countries, and almost no health systems are able to provide blood glucose meters and strips. Children receive one or two injections per day of insulins not specifically designed for type 1 diabetes, and the ability to monitor blood glucose levels at home is not available, so that the only blood glucose checks are done at clinic visits. The health professionals also often have little experience with type 1 and so there is little diabetes education – such patient education is critical for good care.
For young people with type 1 diabetes in these countries, the clinical, psychological, and developmental outcomes are devastating. Young people frequently die at onset from diabetic ketoacidosis or live with poor metabolic control and quality of life, only to later develop devastating diabetes complications, such as blindness, amputation, and renal failure. They struggle to complete their education, and to find employment and life-long partners. They can also face damaging stigma within their families, at school, and in other social environments.
The Life for a Child Program (LFAC) was established in 2000 to meet these needs. The program’s vision is that no child should die of diabetes. Currently LFAC is supporting the care of around 60,000 young people in 52 countries. LFAC works through established diabetes centers in the respective country, providing them with the supplies and resources that they need. The goal is to provide “intermediate care”. This consists of adequate insulin delivered in a modern regimen, along with supplies for self-monitoring of blood glucose (three to four tests per day), a quarterly test that determines overall blood glucose control (HbA1c test), basic complications screening, diabetes education (including age- and language appropriate materials and diabetes camps), and access to skilled medical care.
LFAC has adequate support from pharma to provide all the insulin and syringes that are needed. With grants and donations from the Leona M and Harry B Helmsley Charitable Trust and other donors, the program has sufficient resources to provide mentoring and training, develop education resources, monitor and evaluate the work, and conduct relevant advocacy and research to promote long-term sustainability in-country.
There is however inadequate resources to be able to cover all the needs in the critical areas of monitoring blood glucose and providing sufficient human resource and organizational capacity in-country so that “intermediate care” can be delivered to all. This grant will address these needs.
Description of Project
A diagnosis of type 1 diabetes is a great challenge for any young person and their family anywhere in the world. In well-resourced countries, children are usually able to access the supplies and medical care that they need to live healthy lives. However, in less-resourced countries, health systems generally do not have the capacity to provide this care. As a result, many young people who develop type 1 diabetes die very quickly. Others struggle on with inadequate insulin, blood glucose monitoring, medical care, and understanding of the condition. They are chronically unwell and frequently develop early and devastating diabetes complications. Since 2000, the IDF Life for a Child Program (LFAC) of Diabetes Australia has supported diabetes centres caring for children in under-resourced countries, and now helps around 60,000 young people in 52 countries.
LFAC has access to sufficient insulin supplies through donations from pharma. Through the Leona M and Harry B Helmsley Charitable Trust and other donors, the program also has adequate support to operate, mentor centers, provide education resources and training, and conduct advocacy and relevant clinical research.
The program can also access blood glucose meters and strips and other supplies needed for blood glucose monitoring at a reduced cost with in-kind support from pharma. However, there are inadequate financial resources to be able to provide these supplies for all children supported by the program. There are also inadequate resources to be able to provide a blood test done every three months (the ‘HbA1c test’) that gives an overall measure of blood glucose control. Furthermore, some of the countries, especially those with larger numbers of children with diabetes are struggling to provide the diabetes education, logistics, and coordination of care that is needed to properly reach and educate all these children.
This project will provide resources for three years so these needs in blood glucose monitoring and delivery of care can be met.
Anticipated Outcome
The outcomes of this project are threefold:
Firstly, the increased provision of self-monitoring of blood glucose (SMBG) will help Life for a Child (LFAC)-supported youth to adjust their insulin dosage and food intake as needed and help them to avoid dangerous swings of high and low blood glucose levels. We also expect that more regular access to SMBG will have positive psychological benefits on youths as more frequent use can promote feelings of engagement and empowerment. It also helps provide them with the knowledge of how improvements in their glycemic management could be made. The annual testing for microalbuminuria will help prevent diabetic kidney disease.
Secondly, access to HbA1c testing every few months will allow the doctors and nurses, and the young person with diabetes and their family to monitor and understand overall progress towards a level of blood glucose control that will prevent diabetes complications.
Finally, the provision of precisely targeted financial support to diabetes centers in a number of countries will enhance the quality of diabetes education, enable centers to reach young people in regional and remoter areas, and facilitate data collection and the establishment of registries.
These three outcomes will all improve care, permitting these young people to live healthy and full lives and have hope and a future.
Relevance to T1D
Nearly all the young people supported by Life for a Child (LFAC) are diagnosed as type 1 diabetes. This project will substantially improve the lives of thousands of young people with type 1 diabetes, spread through 52 less-resourced countries.