This week, Life for a Child had news that an important paper we co-authored with advocacy colleagues was published. This paper is all about viewing access to diabetes care as an inherent human right.

As I sit here writing this, I can’t help but think that in just a few short weeks on March 3rd, I will hit my 23-year mark of living with type 1 diabetes. I never thought in my early days of accepting my diagnosis and learning how to dance with my condition, that it would be me learning from and helping to lead communities on how to advocate for access to diabetes care.

What I view to be the most helpful part of this newly published paper  is that the message is simple. And that the message is rooted in an impermeable legal basis.

When we view access to diabetes care as a human right, we can genuinely fight for the improvement of equitable diabetes services. Such an approach provides a strong framework, theoretically and practically, for advocacy and policymaking changes.

The figure below illustrates diabetes care access through a human rights legal framework.

I want to be realistic though. There is a long road ahead for countries whose governments have yet to recognize the importance of this legal precedent through real provision of diabetes care within health systems. Life for a Child knows that in these contexts, there is much work to be done, but it is work that we are privileged to support through publications like these, and continued advocacy endeavors. This is why we were so motivated to organise the Rights Based Approach workshop. This is why we are planning to implement some very exciting advocacy resources in the next few months. Watch this space.

I want to take this opportunity to let all advocates reading this know that I truly believe you have the power to speak up. I want you to know that your voice matters when it comes to the care that you have the right to access despite where you may be in the world.

It is Life for a Child’s privilege to provide you with materials you may find helpful in your own local setting to help drive change. We encourage you to utilize this publication as another instrument within your advocacy toolbox and share within your networks of people living with diabetes, their families, healthcare professionals, and other important figures from your community. Below you will find a social media tile and an accompanying statement calling on those in power to take action and ensure access to diabetes care for everyone.

We thank co-authors Frank Brennan (Calvary Hospital), Paul Williams (Royal Prince Alfred Hospital, University of Sydney), Kate Armstrong (Caring and Living as Neighbors [CLAN]), Neil Donelan (Insulin for Life Global), and Alicia Jenkins (Insulin for Life, NHMRC Clinical Trials Centre) for their courage and guidance. We especially appreciate the expertise and guidance from Amy Eussen, an inspiring and impactful Human Rights Lawyer.

Emma Klatman

Social tiles and statement

I believe access to #diabetes care is an inherent human right.

Governments must ensure the accessibility and affordability of #insulin (a @WHO essential medicine), and other components #T1D of care.

More on diabetes and human rights: https://bit.ly/3BIwsOI
#insulin4all

The post Diabetes and human rights: your voice matters. appeared first on Life for a Child.

A huge increase in the number of children and youth living with type 1 diabetes (T1D) was recorded between 2007 and 2016 in the West African country of Mali.

A new study shows that this increase is likely due to improvements in diagnosis and care, resulting in fewer young people dying from T1D and complications.

Before Life for a Child joined forces with local partner Santé Diabète, in 2007, there were only 28 young people living with T1D in Mali. At this time, very limited care was available, and sadly most young people died within a couple of years of a T1D diagnosis. However, since Life for a Child began supporting Santé Diabète, support has been consistently provided for young people under the age of 26. This care is provided in partnership with the Mali government health services.

We started with the basics; providing young people with the insulin and supplies they needed to manage their T1D. Then in 2013, we ran a poster campaign in health facilities across the country, raising awareness of the symptoms of T1D to prevent deaths from misdiagnosis or late diagnosis of ketoacidosis—these were sadly very common before the intervention took place. A whopping thousand and six hundred posters in French and the local language Bambara were distributed to all diabetes clinics in all regions of Mali and the capital Bamako, as well as patient associations.

The campaign was very successful: More and more children were being diagnosed with T1D and referred to Santé Diabète for supplies and support.
The graph below shows the number of T1D cases between 2007 and 2016. The number of diagnosed cases of T1D rose sharply from low levels in 2007. There was a peak in 2014 – the year after the poster campaign.

Today over 700 young people are supported by Life for a Child and Santé Diabète across Mali. These young people have access to diabetes education materials and can connect with each other at education workshops.

The authors are hopeful that findings from this study will serve as advocacy material to help drive awareness on the impacts that interventions have on improving survival rates in less-resourced settings. Further, we are optimistic that these data will assist local sustainability efforts; the government is doing more and more to help.

This is an important study that shows basic provision of care saves lives. However, there is much more to do. The study explains that the number of young people with type 1 in Mali may still be underestimated, with young people dying undiagnosed. You can help us continue this important work by making a donation to Life for a Child today.

You can see the study here or email us to request a copy at info@lifeforachild.org.

Education session in Bamako

The post Saving young lives in Mali appeared first on Life for a Child.

The post COVID-19 Response in India appeared first on Life for a Child.

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.

The post COVID-19 Response in Sri Lanka appeared first on Life for a Child.

Bolivia

In Bolivia, many families who have been financially crippled by COVID-19 are now finding they have to make the heart-wrenching choice between medication and groceries. Our generous donors have enabled Life for a Child to send additional supplies and funding to help the situation in Bolivia temporarily, but the effects of COVID-19 will not pass quickly. “I have a friend who has no blood glucose test strips and her blood sugar keeps going too high, but because she does not have test strips, she doesn’t know it. It is very dangerous.” – Laura, T1International Global Advocate.

Costa Rica

We are very encouraged by the situation in Costa Rica.

“The country is making at-risk patients a priority and currently even shipping their medicines to them to prevent them from going to the hospital and getting infected. Families have been given extra insulin for the next two months, and the community is supporting each other if there is an urgent need for support or extra supplies.” – Dani, T1International Global Advocate.

Democratic Republic of the Congo

Life for a Child is sending funds for food to our partner center in Goma, Democratic Republic of the Congo, as they attempt to support children with type 1 through the COVID-19 pandemic. The DRC’s borders are currently closed to receiving imports of essential supplies like insulin, so many diabetes clinics have needed to stretch out the supplies they had in stock at the end of 2019

Ethiopia

A Life for a Child partner centre has communicated that as the Ethiopian Government is so occupied with the COVID-19 situation, there are valid concerns that the country will run short of blood glucose meters and strips, and many people living with type 1 diabetes and their health care providers are worried there could be an insulin shortage. The partner, therefore, asked for special support during the COVID-19 pandemic.

Ghana

In Ghana, people living with type 1, who are already at higher risk, need to pick up their supplies in person from hospitals that are epicenters for the spread of COVID-19. Their only alternative is to buy what they need from pharmacies where the cost of insulin is being pushed through the roof due to severe national shortages. Many young people are skipping their insulin doses because they are having serious difficulty accessing food and other essentials amidst the COVID-19 turmoil.

Life for a Child is sending funds to help provide for 1102 young people with type 1 diabetes in Ghana, which we hope will ease the burden on these families in the short term.

Guatemala

One of our partner centers in Guatemala has been home-delivering type 1 diabetes supplies to more than 150 families affected by lockdown measures. Unfortunately, they weren’t able to reach everyone and are still trying to find ways to overcome this under the impact of COVID-19.

“We were not remotely prepared for a crisis like this. Our doctors are being sent into battle without the minimum protection.” – Janina Argueta, Asociación Creciendo con Diabetes

Haiti

Many diabetes clinics in Haiti are having trouble keeping their services open since so many young people are not able to attend the clinics due to the COVID-19 restrictions. There has also been a decrease in diabetes-related hospitalizations for young people, likely due to the economic impact COVID-19 is having on families who already struggle to afford transport and medical bills, and fear of contracting COVID-19 itself.

To help the type 1 community throughout the COVID-19 crisis, one of our partner centers in Haiti is training young leaders with type 1 through supervised social work in the community. They will deliver insulin to those in need and distribute diabetes resources and food packs to help prevent complications.

India, Kota

Kota, India, is in a state of severe lockdown where whole communities are barricaded into zones. In the middle of one of these “red zones”, Puneet ran out of insulin and strips and was completely cut off from accessing any supplies. Life for a Child was able to supply 2 months’ worth of insulin and supplies to Puneet’s doctor, Dr. G.D. Ramchandani, but he was unable to retrieve them due to the restrictions.

With special permission from the local authorities, the doctor’s own son, Raunak, travelled in scorching 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.

India, Pune

Type 1 children in villages surrounding Pune, India, were unable to travel to the city for medical aid and supplies during the nationwide COVID-19 lockdown. Fortunately, one of our partners was able to obtain special permission to make home deliveries to these remote areas and provide the affected children with their much-needed supplies. We are so thankful to the brave volunteers (both in India and also in other countries such as Sri Lanka, Uganda, Guatemala and Haiti) who are currently putting their own health and safety at risk to home-deliver essential medical supplies to type 1 children who are unable to leave their homes due to COVID-19. Their outstanding efforts have saved many young lives!

Rwanda

In the midst of the COVID-19 lockdown, reduction in public transport is making it difficult for those in remote areas to obtain supplies from hospitals or clinics. Life for a Child has managed to facilitate the distribution of insulin to local health centers in an attempt to minimize the need for travel.

In a creative use of technology, a WhatsApp group has been created in Rwanda to help collect funds for those who are most vulnerable. The group also functions as a support network, connecting young people living with type 1.

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 we provide is critical. Many families could not afford these expenses without our support.

On 20th March 2020, the Sri Lankan government imposed an island-wide lockdown. The government health system then became very short of insulin. Two IDF young leaders in diabetes, Vikasith and Dinuka, as well as a small team of volunteers, took it upon themselves to deliver essential type 1 diabetes supplies to over 100 young people all over the country.

Read the full story here

Uganda

The Sonia Nabeta Foundation has joined forces with a motorcycle taxi company to deliver insulin and supplies to young people with type 1 in Central, Eastern, and Northern Uganda during the COVID-19 lockdown. Health centers in Kampala are using app technology to monitor insulin stock levels in clinics.

Tanzania

“I have had to reduce my insulin dose because I cannot get any insulin here in this rural area. I am not supposed to travel to cities to risk my health, but I am risking my health by staying here without insulin. It is incredibly stressful on top of the challenges I already face accessing and affording my insulin.” – Johnpeter, T1International Global Advocate.

The post News from our Covid-19 Coalition appeared first on Life for a Child.

“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@lifeforachild.org.

The post Landmark study: Cost-effectively improving care for young people appeared first on Life for a Child.

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?

The post “It seemed like the sky has fallen down on us. We felt hopeless.” appeared first on Life for a Child.

I was 10 years old when I was diagnosed with Type 1 Diabetes, being in class 4th my mind was juggling in finding HCF (Highest common factor) and LCM (Lowest Common Multiple) of two numbers. My developing brain was full too in adaptive mode, it was taking the form whatever shape you want to give it. So it very well adapted to the schedule of taking four injections daily without much questioning. But unfortunately my parents’ brain was developed one, it was difficult for them to understand and accept the fact that their only child is suffering from chronic disease and she will have to be with it forever.

My parents tried to remain calm and act positive, and within months they too accepted my mentor Diabetes. Yes, my mentor, I believe everything has purpose in life. In the same sense, Diabetes has been my mentor and will continue to be until I go back to the earth.

From the day I had Diabetes till today, Diabetes has never failed me in living a disciplined life. It always makes sure that I am eating on time, with just little pricking before it, and I am eating healthy as well. People these days have lot of options for food, especially unhealthy and junk food. So they look for mentors to guide them on what to eat and what not to eat. Well, I got lucky in this situation, my mentor takes care of all of this.

Discipline takes you a long way, it is one of the important qualities to possess to climb the ladder of success. And I feel fortunate enough for Diabetes to ingrain it in me since the right time. I have grown to be a disciplined adult.

My journey with Diabetes has always been a tangent graph, always reaching high. With scoring above 90 in 10th and 12th examination and being able to maintain cgpa of 8.78 in graduation, and being successful performer of the year in my current job, Diabetes was always there, as a Mentor, as a friend, as a companion to remind me I have to take care of myself, my health. There is no barrier living with Diabetes, it is a blessing to have it.

We need to change the outlook of how one takes Diabetes as, we need to understand that there can be no obstacles in the path which you are meant to achieve in this lifetime. We need to learn to convert all the obstacles into path-giver not path-taker. Life is not about google-maps giving us the paths to the destination, it’s about us with our hard work and discipline, creating the roads to our goals.

The post 076 Rasika, age 24, India appeared first on Life for a Child.

This is the written script of all the traumas faced by an ordinary yet unique girl when she mentions all the peaks and troughs of her life.

It all started when I was in my 11th year of survival in this world, I was a chubby little creature. I was living my life to its fullest and was studying and crafting as usual. Everything was ‘flat as a pancake’ till one day the real obstacle came in the form of weight loss. I began to lose weight really fast (and by fast I mean REALLY FAST) I lost 10 kg in approximately 4 months, but everyone took it lightly blaming it on the diet. I went off board when I faced major hair loss. I had really long and healthy hair but by the end of 5th month it started to look more like a mouse tail. My family started to notice drastic changes in me and took me to a family doctor. He anxiously asked me for a blood test but guess what, I HAD REAL FEAR OF INJECTIONS. Being the little one I used my blackmailing skills and dragged it till 7 MONTHS and delayed it. But one day my family was really serious about it and took me to the LAB (I played the drama there too). Finally, the reports came *drum rolls* I WAS DIABETIC (wow). I didn’t know what was happening to me. Anxiety kicked in and at that time I really wanted someone to tell me that “Neha you’re strong and YOU CAN DO IT!”. In January 2016 I had my first insulin injection (very hard). My family tried everything to keep me away from those INJECTION BUDDIES but who knew that they were going to be my BESTIE’S FOR LIFE. My life was a piece of cake but who knew this cake was a little too sugary. After months of trial on insulin, I came to realize that THIS IS PERMANENT AND I OWN IT. After you start owning your flaws you start working on them. I have had diabetes for almost 5 years now and I actually feel blessed (No I’m not crazy). Diabetes makes me stand out tall in the crowd and makes me unique amongst all. Sometimes I feel down when experiencing high sugar level but that’s not the end of the world . I’m living a stable life right now and ready to conquer the world.

“All you need to believe is YOU”

The post 075 Neha, age 16, Pakistan appeared first on Life for a Child.

Deep in his eyes,
Lost was a man so wise.
The wet nurse of violence,
Gave fire to his silence.
Tears of frustration rolled down his cheek,
But the kind soul of his could never speak.
Screams became hushed,
Those dreams never were crushed
Expectations feed the frustrations,
Shattered were all those good actions.
Even the pride was lost,
B’coz it was
Depression, who came along…
But, it didn’t mean the end,
Decision was the leftover life not just to spend.
Overcoming the dead past wasn’t easy,
Even its thoughts made him dizzy.
Igniting the spark of big plan,
Determination was very clear to be the wholesome man.
Just endeavour implied deficiency,
Along sacrifices rose the win probability.
Tears into sweat, kind heart into stubborn igniter,
Nights into workouts, patho into fighter.
Struggle went long,
Everything seemed wrong
At last, the low spirit downed the knee,
As the aplomb triggered INSIDE ME.

The post 073 Jayesh, age 22, India appeared first on Life for a Child.