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We arrived in Addis Ababa, Ethiopia at 5 in the morning after flying 19 hours and stopping in Dublin on Air Ethiopia – which other than the food and the movies – was wonderful.
Driving to our hotel we couldn’t help but compare the sights out the window to Haiti, where we have helped conduct a camp for children with diabetes every year since the earthquake in 2011. Addis Ababa is congested, chaotic, filled with shanties and shacks, but much less so than Haiti – and due to its elevation, without sweltering heat.
Remarkably, the Ethiopian clock is 6 hours behind the international clock, the year is 2010, and the New Year starts in October. Despite an unexplainable calendar, almost everyone who is educated is fluent in English, which is taught starting in kindergarten.
After settling in, we were on our way to see Ethiopia with a guide and our host who runs the Ethiopian Diabetes Association. We saw mountains, churches (this is a predominately Christian orthodox country and here are pilgrims who stay outside the church waiting for Holy Water).
The next day work began; we gave 8 lectures, answered hundreds of questions, and were delighted to meet and work with 50 physicians and nurses who were clearly dedicated, educated, and motivated to be the best caregivers for children with diabetes.
This includes the 3,500 children and young adults who receive their care and diabetes supplies for free through the Life for a Child Program, led by the indefatigable Dr. Graham Ogle from Australia. Graham is the reason we went to Addis and he has been a terrific coworker, travel partner, and friend.
Nearly all the children with diabetes are in a coma when they are diagnosed, and it is likely many die before that. Remarkably, while the exact incidence of type 1 diabetes in Ethiopia is not known, it is clear the rate of new cases is increasing – and in some areas of the country, this increase is felt to be astronomical. Diabetic ketoacidosis post diagnosis requiring hospitalization is quite frequent, confirming the challenges of managing diabetes in such a poor, stressful environment.
As part of our lectures, Neal interviewed children, teens, and young adults with diabetes and some of their mothers.
Each had an amazing story. One of the young adults was so angry after his diagnosis by the limits his parents imposed on him, he stopped eating for over a month. Despite wasting away, he told no one what he was doing (his parents thought it was his diabetes) until he collapsed. The resolution came when his parents realized he might die if he wasn’t given back control of his life.
Another young adult told us of unrelenting bullying and shame, and of how her parents were encouraged to stop giving her insulin and to cure her with Holy water. Others described hiding their diabetes, having teachers force them to do pushups in front of the class despite being hypoglycemic, refusing to believe a child could have diabetes, and of health care providers unable to the make the right diagnosis until they entered a coma.
But for the most part, these were horror stories of years past. Now, due to the Ethiopian Diabetes Association, a better Ethiopian health care system and economy, and because of people like Graham Ogle and the efforts of Life for a Child, things are at least a bit better.
There are monthly education classes for families, support groups, camps (they bring children as young as 4 to overnight diabetes camps without their parents), media coverage of diabetes in children, and the Life for a Child program, which, of course, brought us to Ethiopia. The main issue that remains is that of insulin insecurity, coupled with an inadequate food supply. These children totally rely on Life for a Child – the program that is literally keeping most of them alive.
We flew north to the town of Mekelle, in the state of Tigray – close to the Eritrean border (the Ethiopians don’t talk much about the brutal war with Eritrea). There we met the Regional Health Minister, the lead endocrinologist in the area, and the most determined person – a public health nurse - we have ever met. The nurse, called sister in a throw-back to ancient times, is focused on getting enough insulin and supplies to the region so that people will “stop suffering and dying”. First, we went to the relatively-sophisticated regional hospital with three ICU’s (adult, pediatric and neonatal), surgical suites, a laboratory, and one of the busiest diabetes clinics we have ever seen.
Life for a Child doesn’t have the resources to support many young people in this region so many families are faced with terrible challenges. When they have enough insulin, the patients all take shots of regular and NPH insulin two times a day and use the same syringe for a week. None of them have glucose monitoring equipment, or even urine dipsticks. Without Life for a Child, they pay a few dollars for a bottle of insulin that they store in pots of wet sand (most people do not have refrigerators). Those few dollars add up and are more than most can afford – so they skimp on the amount of insulin they take, and as a result, they have elevated glucose levels likely all the time. That is except for the times when they take insulin and don’t have food, in which case they have episodes of severe hypoglycemia.
From Mekelle, we drove 2 hours to a small village called Adi Abi to visit a health center that serves the 500,000 people from all the surrounding rural areas across the country’s northern region and border.They have perceived a huge rise in diabetes incidence – 3 new patients a week over the last few years, mainly in adolescents and young adults, but in children as young as 9 months of age.
It was one of the poorest resourced health centers we have ever seen, but with the most incredible and dedicated staff who had hand-written amazing notes, developed a registry of all new patients, and who have amazing diabetes knowledge considering the resources they have and the challenges they face. The staff are on the left of this picture and our tenacious nurse on the right, with patients in the middle surrounding us and Graham.
They conducted a small study that showed the mean A1C was >11% (the study paid for the only A1C tests these patients have ever had) and the mean fasting glucose was 235 mg/dL -- too high, but probably better than other similarly resourced hospitals. If we had thought insulin insecurity was a problem in Mekelle, it is a log-scale worse in Adi Abi. When we arrived, they were busy resuscitating an emaciated 15-year-old girl in Diabetic ketoacidosis with IV hydration (without an IV pump), with finger-stick glucose and urine dipstick measurements, and with no other lab tests. She had sores on her feet that weren’t healing, no muscle mass, and stunted growth. But the doctors were ecstatic they could save her life that day.
Our ride home was across the same incredible landscape – the entire countryside we passed through was terraced, spotted with small wooden huts covered with aluminum roofs and there were cows, donkeys, goats and camels grazing or just standing in the middle of the road. The rifts, gorges, and hills we climbed up and down were striped with orange, yellow, and brown colors from the eons of sedimentation that formed this area – which is the beginning of the Great Rift Valley where Lucy once roamed.
The 3,500 children in Ethiopia with diabetes who receive all their supplies and care for free from the Life for a Child program are in danger. In fact, all of the 18,500 children in 40 countries across the world who are supported by Life for a Child are equally imperilled because the program needs funds. It needs to raise money, firstly, to continue to provide care for the children currently enrolled and secondly to expand and offer more insulin, more supplies, and take care of more children in need. We cannot let Life for a Child flounder or fail; we cannot even imagine the fate of these children – and all the children yet to come - if that happens. Please help us keep the amazing children we met in Ethiopia alive by donating to Life for a Child.
Fran & Neal Kaufman
You can provide a child with insulin, test strips, diabetes education and clinical care for just $1 per day. Make a donation today.
Amita’s parents were working overseas when she was diagnosed. A terrifying and overwhelming time, she was in hospital for a week.
In rural Nepal absolute poverty is widespread and, even poorly paid jobs are hard to find.
”If it wasn’t for Life for a Child the story of type 1 diabetes in Liberia would only be expressed as mortality rate. Management of diabetes at the individual level is beyond challenging due to pervasive poverty resulting in food scarcity and the inability to purchase insulin” Augustine, our man on the ground in Liberia.
Life for a Child has commenced new work towards sustainability in diabetes care.
For Life for a Child two key pillars of sustainability include promoting health systems reform and encouraging advocacy.
James Ron, one of our great advocates in the USA recently wrote about his son’s diagnosis and why he supports the program:
‘’When our two-year old son, Sacha, was first diagnosed my wife, Emma and I scrambled to figure out how to get him the help he needed - long and short-acting insulin, syringes, test strips, Glucagon, HbA1Cs, etc. etc. - we wondered, "how do parents in poor countries cope?"
''I live in Chimaltenango in Guatemala and I am 16 years old. Eight years ago I started to lose weight, I was very thirsty and urinated very often.
During 2016 Life for a Child supported 18,653 young people living with type 1 in 42 countries. Check out the highlights here.
Conducting a camp or activity day can be very daunting for diabetes centers in less-resourced countries so we encourage all the centers we support to start small, think about doing a 2 hour support group and build from there. We give comprehensive guidance and support for the first activity, and offer a manual and ad-hoc advice for subsequent activities.
Just as in more economically resourced countries; the impact camp has on young people, cannot be underestimated, as this young boy in Nigeria says:
It was a sticky, humid day in Colombo, Sri Lanka when I met Kassun. I was visiting the Sri Lankan Diabetes Association to meet young people supported by the program and the health professionals caring for them. The association had arranged for me to see the kids with the biggest challenges, none with HbA1c below 11.5%.
Thank you to the Diabetes Online Community! Over $22,000 was raised by Spare a Rose during 2017, enabling Life for a Child to support 369 young people with the insulin, tools and education they need to manage their diabetes.
Imagine not having a refrigerator to store insulin! In some countries, evaporative cooling using clay pots are an alternative to a refrigerator. No one really knew how efficient these alternatives were so Life for a Child conducted a study to find out.
The latest update of the IDF Life for a Child (LFAC) Programme is now available, including information on LFAC's work in Bolivia, Pakistan and the Democratic Republic of Congo.
The featured story is from Bolivia, where Katie Souris, a post-graduate student from the USA, recently visited the LFAC supported center in the country to look at the challenges facing young people with diabetes, and investigate the possibilities of peer support.
Darlenis is the only young person living with T1D on San Cristobal Island, in the Galapagos Archipelago, so has very little support regarding her diabetes management. Darlenis contacted our colleague, Aracely Basurto, from FUVIDA diabetes center in Ecuador, seeking advice.
The IDF Life for a Child (LFAC) Programme encourages the diabetes centres in countries it supports to conduct camps or activity days for children and young people with diabetes.
To this end LFAC, in collaboration with the Diabetes Education and Camping Association (DECA), has developed Guidelines for conducting diabetes camp activities in a less-resourced country.
"Camp" is a term that includes not only overnight stays, but also activity days, support meetings, and get-togethers for children, adolescents and young adults with diabetes and their families.
This Valentine’s Day, the Spare a Rose Save a Child campaign will once again raise awareness and donations for the IDF Life for a Child Programme by encouraging people to buy one less rose and donate the value of that flower to children with diabetes.
In 2014, the International Diabetes Federation Life for a Child (LFAC) Programmes's largest donor - The Leona M and Harry B Helmsley Charitable Trust - commissioned the London School of Hygiene and Tropical Medicine to conduct a comprehensive formal evaluation of the work of LFAC.
The work was conducted by a team lead by Professor Martin McKee and Dr. Sue Atkinson. Site visits were done in five countries: Rwanda, India, Jamaica, Mexico, and Philippines.
Eli Lilly and Company, a major contributor to the IDF Life for a Child Programme (LFAC), recently announced an additional commitment of 780,000 vials of insulin to LFAC.
Lilly’s new commitment builds on the company’s previous donation of 800,000 vials of insulin over the past six years, which reached more than 14,000 children in approximately 34 countries. Over the next three years, Lilly will donate approximately 260,000 vials of insulin each year to Life for a Child. This commitment will allow LFAC to continue providing treatment for children in the countries where the programme currently operates and to increase the amount of insulin supplied for distribution.
"Lilly's donation of insulin offers continued hope to children and families in need who are trying to manage type 1 diabetes in very challenging conditions," said Dr Graham Ogle, LFAC General Manager.
This Valentine’s Day, the Spare a Rose Save a Child campaign was once again a resounding success with over USD 24,000 raised for the IDF Life for a Child Programme (LFAC). Thanks to the 684 donations received, more than 400 children with diabetes in the developing world will be kept alive for one year.
As the end of 2014 nears, it is exciting to reflect that the IDF Life for a Child (LFAC) Programme has not only expanded support to six new countries but also increased the number of centres in countries already participating in the programme. Some 15,000 children and youth in 48 developing countries and the health professionals who care for them, are currently receiving a variety of resources free of charge from LFAC.
Boehringer Ingelheim, a partner of the International Diabetes Federation, continued its support for the International Diabetes Federation's Life for a Child (LFAC) Programme by organising a fundraising event in the lead up to World Diabetes Day (WDD) - 14 November. This is the sixth year they have supported this programme.
If you follow the IDF Life for a Child Programme on Facebook, you may already have read and been inspired by Veerle Vanhuyse. Veerle contacted LFAC in August, while training for the 2014 TCS New York City marathon, wanting to raise money for the Programme. A dedicated runner, Veerle was diagnosed with type 1 diabetes at the age of 16, and 27 years on intimately understands the challenges diabetes can present on a daily basis.