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Landmark study: Cost-effectively improving care for young people living with diabetes in low-income countries.

An important Life for a Child / University of Pittsburgh study showing how low-income countries can reduce the rate of complications from type 1 diabetes (T1D) has been published by the academic journal Pediatric Diabetes.

Young people supported by Life for a Child live in in low- and middle-income countries with competing priorities for healthcare spending. Some governments only provide one component of care for their young citizens living with T1D (such as insulin) and many don’t provide anything at all.

“Consequently, the kinds of care that are offered to those with type 1 diabetes in these countries is often at a ‘minimal’ level. The bleak outcomes of this level of care include high mortality and the premature onset of devastating and costly chronic complications.” Dr. Graham Ogle, General Manager Life for a Child.

In order to support our local partners in their efforts to advocate for more government help for children with diabetes, we set out to demonstrate how effective even modest improvements in care provision can be.

We did this by looking at the costs and outcomes of diabetes care in six countries- Mali, Tanzania, Pakistan, Bolivia, Sri Lanka and Azerbaijan.

Specifically, we looked at the outcomes for young people receiving minimal and intermediate care. Minimal care was defined as twice daily human insulin injections with no self-blood glucose monitoring and minimal diabetes education. Intermediate care consists of multiple daily insulin injections, two to four blood glucose tests per day, diabetes education and HbA1c testing. For a comprehensive look at these definitions look at our 2018 study into levels of care.

Using a mathematical model we calculated the rate of a range of complications at different HbA1c levels over a 30-year period.

Mathematical modelling: Complications rates after 30 years

The graph above shows the 30-year complications rates at differing mean HbA1c levels, demonstrating the importance of reducing HbA1c.


The difference in chance of survival in each country depending on whether the young person is receiving ‘minimal’ or ‘intermediate care’.

As you can see, incidences of complications were lower for young people receiving intermediate care vs. minimal care. Intermediate care is the type supported by Life for a Child.

The study goes on to show that, although intermediate care is a little more costly to maintain than minimal care, acute and chronic complication costs are reduced and young lives are saved. This is a compelling argument for governments to increase provision of care for young people living with T1D.

Dr. Ogle is hopeful that the study will help to improve care: “Overall, these findings could greatly strengthen local efforts made by health care professionals, policymakers and advocates, who are working toward provision of acceptable type 1 diabetes care by their national health systems.”

View the study in Pediatric Diabetes or email us to request a copy at info@lfacinternational.org.

“It seemed like the sky has fallen down on us. We felt hopeless.”

Gahan is an 8-year-old boy from a small village in Bangladesh. He is a smart young man and hopes one day to become an engineer. As well as working hard at school, he loves to spend time outdoors with friends, playing cricket and badminton in the streets around his home.

Gahan’s father is a fisherman and his mother is a homemaker. He is their eldest son and has a 5-month-old little sister.

When Gahan was three years old his father was concerned to see his son losing weight, wetting the bed and often too tired to play outside with his friends. Over a number of weeks Gahan’s health deteriorated until it became so serious that they thought their child might die.

Gahan’s parents took him to the local hospital where they found that he had a very high blood glucose level. Staff quickly referred him to the Life for a Child partner center, which they knew would be better equipped to deal with Gahan’s diagnosis.

When the family arrived at the center they were disorientated and fearful.

“It seemed like the sky has fallen down on us. We felt hopeless.” Gahan’s Father.

Gahan was admitted to the hospital and doctors worked to stabilize his blood sugar. He spent 15 days and nights there, being nursed back to health, while his parents received diabetes education.

It was a steep learning curve. Gahan’s father said, “We had no idea about type one diabetes.” But, like most families dealing with a new type 1 diagnosis, they were forced to learn quickly, test, trial and find their way through the complex maze of management.

Thanks to initiatives like Spare a Rose, the family did not have to worry about finding the money to pay for Gahan’s insulin and supplies. The program manager at the center said, “Because of the very low income of his parents it would be very difficult for Gahan to manage his diabetes without the support of Life for a Child. His father said that the support is like a blessing from God.”

Gahan attends the Life for a Child partner center every two months to collect his insulin and supplies and has regular checkups with the team there.

Gahan’s diagnosis means he will continue to need access to insulin and blood glucose testing supplies every day. Can you Spare a Rose this February to help make sure Life for a Child can provide him with reliable and consistent care?


Colin’s type 1 journey – compassion across continents

Colin was diagnosed with type 1 diabetes back in 1967, at the age of 19. The tools of diabetes management weren’t what they are today and he had to use glass syringes to inject his pork insulin, and initially spent time in hospital for his blood glucose to be balanced. Colin started to adjust to this new way of life but was often worried about his levels going too high.

However, he wouldn’t let his diagnosis stop him. At age 22 he graduated from university and soon became a teacher at a local high school. Getting the job wasn’t easy. The Department of Education wasn’t keen on employing a person with diabetes, so Colin had to fight, with the help of his union, to take his place at the school.

The fight was worth it. Colin ended up having a long and influential career teaching maths and physics to young people in his local area and found life-long friends among staff at the school.

In 2001 Colin heard about a small charity called Life for a Child. The charity had been set up to support young people living with type 1 diabetes in low-income countries by providing them with insulin, a blood glucose meter, strips and diabetes education. Colin really felt for these kids and believed in the charity’s vision: no child should die of diabetes. He immediately set up a monthly donation. Colin continued to give a generous gift every month for 15 years, until he passed away in 2016 at age 67.

After his death, his brother Allyn wanted to make sure that Colin’s legacy of compassion would live on. He has donated substantial amounts to Life for a Child in order to provide diabetes care to young people in need in Tanzania and Mali, in memory of Colin.

Life for a Child’s General Manager, Dr Graham Ogle said: “Many families with a child with type 1 in Tanzania can’t afford insulin and supplies. Thanks to the support of wonderful donors like Colin and Allyn, Life for a Child is able to provide them with a lifeline. Their donations are helping young people like Anita (pictured below).”

Anita has been supported by Life for a Child since 2005. With support she has been able to flourish and, today she is doing really well. She is a co-founder of the Tanzanian Diabetes Youth Alliance where she helps other young people dealing with the ups and downs of managing type 1.

There are many ways you can help to provide support for young people like Anita, from fundraising to pledging a bequest and many more. To find out how you can help click here.

Universal health coverage and type 1 diabetes

We are living in a time where governments are prioritizing policies that ensure their citizens have access to affordable health care. Indeed, even within less-resourced countries, governments are introducing Universal Health Coverage (UHC) programs aimed at eliminating the financial burden of health care for the population.

At Life for a Child we aim to ensure that the needs of young people living with type 1 diabetes are included in the development of UHC programs globally.

To understand the current landscape we began a study looking at national service provision, affordability, and availability of insulin and test strips in 37 less-resourced countries, and compared findings to the situation in 7 high-income countries.

We found that whilst some health systems are providing insulin, a proportion are not subsidizing the costs. On the whole, the situation was markedly worse for blood glucose test strips as these were not even provided in most health systems we assessed.

We demonstrated our results through a novel graphic approach, above you can see a table from the paper which shows patterns from the 37 less-resourced countries. Within the whole study information from seven high-income countries were included: Australia, New Zealand, Japan, UK, Sweden, Italy, and France.

We are hopeful that the paper’s findings and discussion will foster much-needed attention towards the lack of national health system provision, affordability, and availability of insulin and test strips in Life for a Child supported countries.

Our vision is to encourage governments to cover these two supplies so that young people with type 1 diabetes can benefit from emerging national UHC programs and go on to live safe, productive, and fulfilling lives.

To download the study click here.

Note: Life for a Child’s research is funded by The Leona M. and Harry B. Helmsley Charitable Trust.

Improving outcomes for young people living with type 1 diabetes in Mexico

Life for a Child is providing quality care for children and adolescents with diabetes from lower-income families in Mexico.

Sustainable progress has been made for diabetes care in Mexico, where three of the largest health systems provide human insulin free of charge to enrolled members of the population.

Insulin provision is an important step on the road to sustainability. However, access to insulin is only one piece of the puzzle for diabetes management. Self-monitoring of blood glucose is another crucial component, but none of the health systems in Mexico provide the necessary supplies.

Life for a Child helps to fill the gaps for families in need, by providing meters, strips and lancets to 554 young people across the country. This support enables them to monitor their blood glucose and manage their diabetes effectively.

In addition to supporting the immediate needs of young people with diabetes, it is part of Life for a Child’s mission to promote sustainability within the health systems that young people living with diabetes rely upon. To this end, we carry out research to give stakeholders a clearer view of the situation for young people with type 1 and advocate for improvements within the health system.

A study was undertaken by Life for a Child, in collaboration with the Mexican Diabetes Associations in the states of Nuevo Leon, Guanajuato, Guerrero, and Merida and the NHMRC Clinical Trials Centre in Sydney. The study describes the types and results of the current levels of care provided to young Mexican people with diabetes from lower-income families.

The results of the study showed that acceptable levels of blood glucose control are achievable in Mexican children when supplies and education are provided.

The graph below shows that the mean HbA1c results from Life for a Child supported centers in Mexico are not dissimilar to the most recent results from the T1D Exchange network of 50 leading US clinics. This is a great result and a tribute to the health professionals in the Mexican centers, the families, and the impact of the support Life for a Child provides, thanks to donors and partners.

Our hope is that the findings of this study can influence the Mexican health systems to begin providing these essential supplies and improve care for young people living with type 1.

You can help us continue to provide blood glucose monitoring supplies to young people by making a donation.

To find out more about the study click here.

This research was supported by The Leona M. and Harry B. Helmsley Charitable Trust.

Anabel has three children living with type 1

Not only does 24-year old mum Anabel live with type 1 diabetes, but so do all three of her young children. Hear her story.

“To stand up with such responsibility is very painful. It is not easy to live with the diabetes of my three children. When I see high blood glucose levels it brings me depression, feelings of guilt.

When I was 22, I had two children, Paulina and Tomás. At six years old Paulina was diagnosed with type 1 diabetes. It was very hard to prick her skin with injections, and we had to make a lot of changes to our life. Thankfully, the diabetes center gave us insulin, supplies and diabetes education, so we managed quite well and life went on.

Until, six months later, when I started to feel tired and was going to the toilet a lot. I tested my own blood with Paulina’s meter. I was so surprised to see that I had a high level, and soon I, like my daughter, was diagnosed with type 1 diabetes.

A year went by and my little boy Tomás started to show symptoms. I tried to ignore it at first, but sure enough, when I tested his blood he was also high and went on to be diagnosed with type 1 diabetes. He was just 4 years old.

I was distraught, all three of us now had diabetes. I felt that this disease must be contagious and decided to leave the diabetes center. There seemed to be no other way to protect my children. However, without the insulin, I saw the levels rise and realized that we must all go back to the center. Luckily we didn’t stay away for too long.

Then along came my third daughter, Carminia and the same process took place – at 1 year and 2 months I started to notice the things I had observed my other children. Carminia was underweight, urinated a lot and cried. I tested her blood and her glucose level was 300mg/dl. My third child was diagnosed with type 1 diabetes.

Today, Carminia is 2 and a half, Tomás is 8 and Paulina is 10. Paulina is very intelligent, she helps her brother with his schoolwork and also helps me when I feel very low. It has been very hard dealing with the condition but with the help of the diabetes center and the insulin and supplies, we are managing.

Living with diabetes is the hardest thing that has ever happened to me.”

You can help us support Anabel, Carminia, Tomás, Paulina and other young people like them by making a donation today. Just $30 can provide a child with insulin, strips, diabetes education and support for two months. Donate Today.

Diabetes in humanitarian crises: The Boston Declaration

Life for a Child General Manager Dr. Graham Ogle and Health Systems Specialist Emma Klatman joined the Harvard Humanitarian Initiative in Boston to sign the declaration: “Diabetes in humanitarian crises: the Boston Declaration” published on June 6, 2019, by the Lancet Diabetes Endocrinology journal.

Chronic health conditions can be difficult to manage, and as type 1 diabetes is fatal without proper treatment, it is of vital importance that governments in under-resourced countries move towards more effective diabetes programs.

For type 1 diabetes ongoing care is so important and in times of crisis the level of care plummets. This can exacerbate life-long conditions and lead to complications both immediate and long-lasting. Hundreds of millions of people are conflict-affected or displaced globally and the economic and human costs of crises in less-resourced countries are staggering.

This poses an overwhelming task for governments and health-care providers in crisis-affected regions as effectively managing type 1 diabetes requires a high level of complex care. Humanitarian responders and local health-care workers are often ill-equipped to provide adequate care which puts people with type 1 at serious risk of long-term complications or death.

To combat this scenario, Harvard University assembled global health and humanitarian specialists in Boston, Massachusetts in April 2019 to outline four key targets to work towards over the next 3 years – these form the Boston Declaration:

1. Unified and strengthened advocacy for medical care in times of crisis.

2. Universal access to insulin and other essential medicines and diagnostics for glycaemic and blood pressure control in humanitarian crises.

3. Establishment of a unified set of clinical and operational guidelines for diabetes in humanitarian crises.

4. Improved data and surveillance of the prevalence of diabetes, access to care, patient burden, and patient-centered outcomes in humanitarian crises.

These targets are achievable and essential for mitigating the vast costs of life-long health problems associated with under-treated type 1 diabetes. Governments, advocates, disaster relief organizations, and other actors in global health must heed the call to action provided by the Boston Declaration. The signatories of the declaration will hold meetings annually to track the progress on each target.

The inalienable human right to a life with dignity is incompatible with barriers to adequate health-care. These four targets provide a roadmap for the delivery of vital care to those with type 1 diabetes in times of crisis.

To see the Boston declaration in full (free with registration) click here.

Type 1 diabetes care in Bolivia

Dr. Duarte has been practicing medicine for over 30 years, specializing in endocrinology for the majority of that time. Encouraged by her father, she decided to study medicine from the time she was a young girl. Part of the reason Dr. Duarte decided to go into endocrinology was because of the lack of specialists in the area.

She explains — “I dedicated myself to diabetes because of the lack of attention to this pathology in Bolivia. The Head of Endocrinology Service during my residency in Spain truly had a passion for diabetes education and also influenced my decision.”

Diabetes in Bolivia

The diabetes landscape in Bolivia is severely lacking in resources and education. Dr. Duarte told Beyond Type 1 that “health in general is very poorly cared for in our country. The government does not have clear health policies … and there is no official healthcare for people with diabetes. There are no educational resources — everything that is done related to diabetes education comes from professionals interested in the subject, volunteers, and the people with diabetes themselves. Everyone affected by Type 1 diabetes works truly hard and sacrifices a lot.”

The difficulty for people with Type 1 diabetes in Bolivia begins before they are diagnosed, and continues throughout their journey.

Missed diagnoses are common as local doctors aren’t adequately trained on recognizing the symptoms. Once properly diagnosed, patients and their families must resort to a few specialized professionals. There has been some improvement in the area, as there are now pediatric endocrinologists in at least three cities of Bolivia that previously did not have the specialists.

Dr. Duarte explained that “if you have resources, you must purchase insulin, self-management supplies and everything you need from the local pharmacies. If you have insurance, in addition to medical care and in some cases nutritional care you only receive NPH Insulin and Regular insulin; no insurance provides glucose meters or test strips. Those patients without resources rely on help from Life for a Child.”

Saving lives

In 2003, Dr Duarte co-founded Centro Vivir con Diabetes, a non-profit with the mission to provide comprehensive, up-to-date, quality care and education to everyone with diabetes who requires it, whatever their social or economic situation.

Dr. Duarte told Beyond Type 1 how their partnership with Life For a Child has literally saved lives: “If it did not exist, many children who have diabetes would have just died. There are many parents who do not have the resources to sustain a chronic pathology that requires daily administration of insulin. Even if the children have access to insulin, most of them would not have access to a glucometer and test strips for daily testing. This program is life or death for many Bolivian children with Type 1.”

Brandon and Father

Brandon’s story

One such child facing the possibility of death was Brandon Miguel, who began showing the tell-tale symptoms of T1D when he was five years old. Brandon’s mom recalls “…my son was dying, [he] couldn’t walk… he didn’t eat, he did nothing. I had to carry him in my arms… he couldn’t move by himself.” Even after he was diagnosed, Brandon was put on a limited amount of insulin and was still not showing signs of improvement. That’s when Dr. Duarte and Life for a Child got involved.

Dr. Duarte remembers her first encounter with Brandon — “The most shocking thing at that time was to see that the lancets they used to test the blood from Brandon’s little fingers. They were old lancets that were so traumatic that cut instead of puncturing, the child was totally sore and did not let them continue testing. We provided very thin and more appropriate lancets, which in fact were a comfort for the child and a relief for his parents.”

Watch the rest of Brandon’s amazing story in this video.

Hope for the future

“I hope, with all my heart, that there will come a time when science will discover a total cure for diabetes and that when that moment comes, our children and youth with diabetes from all over the world can benefit from this cure without complications in their young organisms. That would be truly exciting.” – Dr. Elizabeth Duarte

This profile was originally published on Beyond Type 1

Family voices in Uzbekistan

“I don’t like it, it’s hard work” said 12 year old Akbar.

Summed up in an honest and simple way, this is how he feels about having diabetes. Akbar was speaking to a room of 40 doctors and nurses at a training workshop in Uzbekistan. Designed to give young people and their family’s space to explain their feelings and experiences around diabetes, it was valuable for the health professionals to hear from ‘the other side’. The voice of the patient and parent can, unintentionally, often be forgotten on busy clinic days.

Life for a Child Education Director, Angie, asked Akbar’s mother how she felt when her son was diagnosed two years ago. “I was shocked – that part of my life is missing’’. She held her son’s hand tightly and was close to tears, noticeably grief-stricken.

Akbar didn’t say much more. His mom said that his attitude had changed over the past year and he no longer wants to talk about his diabetes, he just wants it to go away.

She explained their management routine and how Akbar’s father gets up at 3 o’clock every night to check his blood glucose levels. Akbar’s older brother and sister are protective of him and watch out for high and low blood glucose levels. There is a strong sense of solidarity amongst Akbar’s family; they all eat the same foods and the kids enjoy walking together.

“His friends were very pleased to see him when he returned to school as he had been absent for 2-3 months when first diagnosed,” Akbar’s mom said. Only some of his teachers know about his diabetes. Thankfully, those who do know are very helpful.

When Angie asked Akbar’s mom if she was beginning to feel more hopeful, or if things were still difficult, she said, “It will always be difficult”.

Saffiya is 15 years old and along with having type 1 diabetes, she has sensorineural deafness. She didn’t want to be interviewed so her mother spoke for her. The diabetes diagnosis was ‘a terrible shock to the entire family’, she said.

Diabetes has had a devastating impact on Saffiya’s life; her school refused to allow her to return after diagnosis. Her only alternative was home-schooling. For Saffiya, this exclusion prevents her from joining in with important social activities, such as her much-loved dancing hobby.  As there is no dance school in her village, and she has no friends of her own age she has stopped dancing. This is extremely difficult for Saffiya. It also makes it challenging for Saffiya’a mother to ‘let go’.

Sadly, it is common for children with diabetes to be refused entry into school.  With the correct mediation and advice for schools from health professionals with expertise in type 1 diabetes, progress can be made, and this kind of discrimination can be minimized – education is the key.

At the end of the session, Angie asked Saffiya’s mother if she would like to send a message to the health professionals in the audience. Emotionally she exclaimed, “To you, we are one of many….to us, diabetes is our life, please be more caring towards your patients and their families. We also want a cure”.

A powerful and heartfelt statement.

For just $30 you can provide a child like Saffya with insulin, supplies diabetes education and care for a month. Give a critical lifeline to a child today by making a donation today

 

Acknowledgements

The workshop was developed in conjunction with the International Society for Pediatric and Adolescent Diabetes.

We would like to thank Professor Said Ismailov and his team, together with the visiting Paediatricians, Paediatric Endocrinologists and nurses from all over Uzbekistan or who welcomed us so warmly to their beautiful country.

Thank you also to Dr Debra Cohen for participating in the training workshop and the children and parents who had the daunting task of sitting in front of an audience whom they hardly knew, speaking of very personal and painful topics.

Dr. Graham Ogle receives the Sir Kempson Maddox Award

Dr. Graham Ogle, one of the founding members and current General Manager of Life for a Child was presented with the Sir Kempson Maddox Award at a ceremony in Sydney, Australia. The award is Diabetes NSW & ACT’s highest accolade, and is given to a person who has made a significant contribution toward helping to improve the lives of people living with diabetes.

In 2000, Graham was invited by Professor Martin Silink to develop the IDF Life for a Child program to assist children and young people with diabetes in less-resourced countries. In the subsequent 18 years that Graham has been General Manager, the program has gone from strength to strength, and is currently supporting more than 18,500 young people with diabetes in 41 countries with insulin, diabetes supplies and education resources.

Graham has worked tirelessly to improve the outcomes for young people who live in some of the most vulnerable communities in the world, where access to supplies and expert care is limited. He has established important international collaborations that have led to various novel research, mentoring and advocacy initiatives.

Despite significant progress in recent years, Graham says there is still a long way to go, ‘An estimated 80,000 young people still need supplies and we have a waiting list of countries that need support’.

Graham has also been awarded the Harold Rifkin Award for Distinguished International Service in the Cause of Diabetes by the American Diabetes Association, the Cross of Medical Service by the Government of Papua New Guinea, and the Jeff Hitchcock Distinguished Service Award from Children with Diabetes. Graham has been a member of two IDF Task Forces and a Commissioner in two Lancet Commissions on Diabetes.