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COVID-19 Response in India

Life for a Child is currently supporting 50 young people with type 1 diabetes in Kota, a city in Rajasthan, India, cared for at the Ramchandani Diabetic Clinic. Puneet is one of them. He has been supported by Life for a Child for nearly 10 years. Here are some photos of Puneet through the years.

 

 

 

 

 

 

In May 2017, as part of Dr. Lisa Ameto’s visit to the Ramchandani Diabetic Clinic she also visited Puneet’s home. Pictured here from left to right are Raunak Ramchandani, Puneet (standing), Dr. Lisa Ameto and Dr. G. D. Ramchandani.

 

 

 

 

In the context of the current COVID-19 pandemic, Kota, like many other cities across India is in a state of severe lockdown and curfews with whole communities are barricaded into “red zones”. Puneet lives deep in one of these zones and ran out of insulin and strips. He was completely cut off from accessing the essential supplies he relies on. Around the same time, a Life for a Child shipment of 2 months’ worth of insulin, stips, syringes, lancets, and also a new blood glucose monitor was received by Dr. Ramchandani’s clinic in Kota. However, due to lockdown restrictions, Puneet was unable to retrieve them.

 

With special permission from the local authorities, Dr. G. D. Ramchandani’s son, Raunak, travelled in scorching (47°C) heat across the locked-down city to the gates of Puneet’s zone. Under the supervision of armed guards, Raunak was able to pass the supplies through the barricade to Puneet.

 

 

Puneet has recently completed his NDEP Certificate course, making him a Certified Diabetes Educator. Puneet is an example of how children who receive support early and consistently in their diabetes journey, grow to give so much back to the type 1 community in their young adulthood. We are truly proud of Puneet and of our volunteers like Raunak, whose bravery and compassion have made a life-saving difference during the COVID-19 pandemic.

 

In response to the global impacts of COVID-19, Life for a Child has teamed up with JDRF and over twenty other like-minded organizations to identify shortages of essential diabetes supplies and mobilise support from around the world. You can read more about the COVID-19 Diabetes Supplies Coalition here: COVID-19 Coalition, and about the work of our volunteers Vikasith and Dinuka in Sri Lanka here: Sri Lanka COVID-19 Response.

COVID-19 Response in Sri Lanka

 

Life for a Child supports 100 young people living with type 1 diabetes cared for by the Diabetes Association of Sri Lanka. These children and adolescents mostly come from very poor families and so the insulin, meters and strips, education and medical guidance is critical support.

On 20th March 2020, the Sri Lankan government imposed an island-wide lockdown. The government health system then became very short of insulin.

In the face of extreme shortages during the lockdown in Sri Lanka some generous volunteers have risked their own safety to make home deliveries across the country.

Two of those volunteers were Vikasith and Dinuka, both IDF young leaders in diabetes, and both showing incredible courage in this difficult time. They volunteered to deliver essential supplies to 100 young people supported at the Diabetes Association of Sri Lanka. In this unprecedented restriction of movement within Sri Lanka the LFAC partner centre staff said it was heartwarming to see such genuine enthusiasm to help others just like themselves.

Dr. Wijesuriya writes – “It was indeed joyful to see their smiling faces every morning ready to start another gruelling day of travel.” The pair plotted routes, organised transport and supplies, and navigated a city gripped by fear and uncertainty.

Over 4 days and a journey of more than 2000km, Vikasith and Dinuka risked their lives to help those who were trapped at home, thus saving the lives of over 100 people living with type 1 diabetes. Dr. Wijesuriya said that if this insulin had not been delivered, the death toll due to hyperglycaemia may have surpassed that of COVID-19 itself.

In response to the global impacts of COVID-19, Life for a Child has teamed up with JDRF and over twenty other like-minded organizations to identify shortages of essential diabetes supplies and mobilise support from around the world. You can read more about the COVID-19 Diabetes Supplies Coalition here: COVID-19 Coalition.

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.

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.

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.