Overcoming Obstacles to Treat T1D in Ecuador

This content originally appeared on Beyond Type 1. Republished with permission.

By Beyond Type 1 Editorial Team

Araceli Basurto is a certified diabetes educator and pharmaceutical chemist who runs an education center accredited by the International Diabetes Federation in Ecuador. She is also the president and founder of FUVIDA, a nonprofit supported by Life for a Child that provides children and young people with access to diabetes education, motivation, and support. The organization started with Arcaeli’s daughter, who was diagnosed with T1D at 2 years old, but now serves over 300 children.

Araceli recently sat down with Beyond Type 1 to discuss her organization’s mission, living with diabetes in Ecuador, and how you can help FUVIDA’s mission. This interview has been translated from Spanish, and edited for length and clarity.

Beyond Type 1What is FUVIDA’s mission?

Araceli: FUVIDA’s main objective is to provide education to families who have been affected by type 1 diabetes, whether they are children or adolescents, providing the necessary tools so that they are able to manage their condition at home. My personal mission is to ensure the health system provides the supplies and the necessary treatment so that these children and families have everything they need.

We are keeping an eye on [the health system] because 2 or 3 years ago the government issued a resolution that has not yet been executed. So, our mission this year is to promote that and follow up with the government so that this law is executed, and the children can get insulin, test strips, glucose meters, everything necessary for daily life with type 1 diabetes.

How many people does FUVIDA help today and what services do you offer or provide for the people who reach out to you?

We currently have more than 300 families living with diabetes. Many of them have 2 or 3 children with diabetes in the same family. We help them with workshops, camps, talks, and we provide supplies to children with limited economic resources so that they can have treatment because the health system does not provide them, or if it is provided, it is done very inconsistently. For example, in the middle of this pandemic, it was impossible for children to attend hospitals and they did not have insulin available. We make sure that they have the treatment they need so that they can survive.

We know that, in Ecuador, as in other parts of Latin America and around the world, people have trouble accessing treatment, especially in a timely manner, and it may not be available to everyone. What happens in your country?

The main problem is that we do not have enough trained professionals, that people do not speak the same language within the same hospital. It can be a very serious problem. As an example, about 5 years ago the government began to provide analog insulin, glargine, but after it came, a lot of the glargine insulin was returned because healthcare workers did not know how to use it.

That is one of the most serious problems we have, that despite having all the logistics and being able to get analog insulins, access to treatment, and diabetes technology, not all the personnel are trained.

So, I think that having access to the medications that the government provides and having sufficient resources to buy them go hand in hand, and it is a different issue for health professionals to actually be able to use it and know how to dose it, know how to deliver it correctly so that parents, with proper education, may be able to make use of these treatments.

Tell me about your partnership with Life for a Child

Life for a Child has a very common phrase that says, “No child should die of diabetes.” This started when María de Alba was president of the International Diabetes Federation and saw that many children were dying from lack of access to insulin. She then asked the Federation to create a program to provide insulins.

We partnered with Life for a Child in 2003; With their donation, we are able to deliver test strips and insulin along with diabetes education. The parents receive a monthly education talk and can take their supplies. They are well aware that the correct use of insulin is what really ensures a good quality of life. Through a group of professionals, we help these young people and their parents so that they can dose correctly, have appropriate treatment, and also use the test strips.

What has been the most significant success story you have had within the Life for a Child program?

The success story does not end, it continues writing itself because the story really is watching the children grow up and knowing that they can enjoy going to school. There used to be families whose children did not go to school because they had diabetes, but that mentality has started changing.

The children have now graduated because we have practically been working for 26 years. We have been following their story and that is what gives us the satisfaction, knowing that there are children who are already university students, who have jobs. Families who had abandoned their jobs to dedicate their lives to taking care of a child at home, to take care of their diet.

Some mothers have taken steps back, and when we give them that freedom based on diabetes education, we instruct the children so they start taking responsibility depending on their age, they are already capable of managing their diabetes with their parents’ support and with professional medical visits, but now their mothers can leave their homes, they can function as women, as professionals. They can also help and contribute to the family and that, for me, I think is the most beautiful story, being able to give this diabetes community that freedom so the children can get an education, to empower mothers as professionals, as women. This has been the greatest triumph, seeing families smile with diabetes now.

What are the plans for FUVIDA?

In the middle of the pandemic we were able to build a camp house. The first stage is now done, there is a social area and there is a large kitchen, because the mothers themselves do the cooking. I have great hopes that by 2021 everything will be more normalized, and we can take some of the children to enjoy Machalilla beach, which is a beach only for FUVIDA children. In other words, they cannot get lost there, you can see them from afar and you know that only the FUVIDA family is there.

We also plan to put more pressure on the government. We cannot depend on international organizations alone; it is actually the government’s responsibility. Let’s hope that there is someone at the top who has a child with diabetes. I do not truly wish for that, but if they are affected by diabetes perhaps they would actually listen to us. Maybe diabetes has to be personal to them.

Is there anything else you would like people to know about FUVIDA?

We really always need medical supplies to expand the program, so that not only 100 children can get this type of treatment; We need pharmaceutical companies to provide more analog insulin. Also, know that FUVIDA is a source of inspiration for many mothers, because there are many mothers in the world who are directly affected and we are all capable of starting an organization, it does not matter if there are only 2 or 3 of us.

To find out how you can support young people living with type 1 in under-resourced countries visit Life for a Child

Source: diabetesdaily.com

The Frightening Reality of Skyrocketing T1D Diagnoses in Mali

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

In 2007 there were only 28 people in Mali under the age of 25 living with diabetes.

28 young people alive.

Out of a population of over 13 million at the time.

From 2007 to 2016, 460 more people under the age of 25 would be diagnosed with type 1 diabetes. The data alone seem to suggest that type 1 diabetes (T1D was extremely rare in the land-locked West-African country until suddenly, in the year 2007, there was an outbreak of type 1 among the youth in the country. The reality is far more grim.

It wasn’t that T1D didn’t exist in Mali. The disease just wasn’t being diagnosed or treated sufficiently, and countless lives were lost. Through the intervention of Life for a Child, and the French non-government organization (NGO) Santé Diabète, hundreds of Malian lives have been saved. Today the total number of young people supported by Life for a Child and Santé Diabète across Mali is over 700.

Life-Saving Measures

Life for a Child believes that no child should die of diabetes. What began as a pilot program in 2000 to help children living with T1D in under-resourced countries has since grown to support more than 22,000 young people in 43 countries across the globe. The organization first expanded into Africa in 2004, and Mali was an early target for diabetes intervention.

Santé Diabète was founded in 2001 by Stephane Besançon to help Malians with diabetes gain access to diabetes supplies and critical care for their disease. They began working in Mali in 2003, and faced a large uphill battle from the start.

Besançon, the current CEO of the organization told Beyond Type 1 “Back then [in 2004] there were only 10 children alive with type 1 diabetes and only one specialist practicing in the capital Bamako. Treatments like insulin were available only in the private sector, they were very expensive and nearly inaccessible to the majority of patients. Significant work was needed to build a structure to guarantee diabetes care in Mali.”

Life for a Child specializes in working with local institutions like Santé Diabète, and the pairing has been nothing short of groundbreaking. Life for a Child’s general manager Graham Ogle says of Santé Diabète “it’s the local champions in these countries who are critical to the success. Things can really turn around, and they have in Mali.”

While Santé Diabète works in close partnership with the Malian government to ensure that medical care and diabetes education is provided, Life for a Child has supported this work with supplies such as: insulin, syringes, test strips, HbA1c testing, education resources, and other assistance.

Increase in T1D Prevalence and Incidence

Since 2007, when Life for a Child and Santé Diabète began their intervention to provide care for all young people under 26 with diabetes in Mali, the population of people living with the disease has skyrocketed. A study published earlier this year demonstrated that during the first 10 years of the program, prevalence of T1D increased substantially every single year, from 0.43 (per 100,000) to 2.90 in 2016.That’s nearly a 600% increase in the percentage of young people living with T1D in the country.

Chart

Image source: Life for a child

Prevalence of t1d under 25 years of age. Error bars show 95% confidence intervals.

The incidence of T1D diagnoses also steadily increased from 2007 to 2016 over the course of the study. Notably, incidence rates peaked in 2014 following a poster campaign from Life for a Child in 2013. The organization placed 1,600 posters in health facilities across the country, raising awareness of the warning signs of T1D that are often misdiagnosed and lead to death.

Chart

Image source: Life for a child

Diabetes care in Mali is much more advanced than it was 20 years ago.

“The partnership between Santé Diabète, Life for A Child and the Malian authorities has helped change the lives of children and young adults with type 1 diabetes,” Besançon explained. “The situation today is radically different in Mali, with a reinforced endocrinology and diabetology service in the National Hospital of Mali which includes a children’s diabetes sub-unit … the opening of 32 diabetes clinics in the different regions of Mali and the district of Bamako taking care of more than 20,000 patients with type 2 diabetes… and a specialist T1D specialist at the hospital in Mali and 10 type 1 diabetes clinics in the regions of Mali caring for 950 children and young adults with T1D”

More Than Just Numbers

Daba Doumbia is a 21-year-old young man (and excellent soccer player!) living in Mali, who recently submitted the video below to Life for a Child. Were it not for the intervention of Santé Diabète and Life for a Child, he may not be alive today. According to Besançon, “Access to healthcare allowed Doumbia to grow up to be a dynamic young man who will soon excel in his studies.”

In his own words, Doumbia says, “I was shocked when I found out I had diabetes. I watched my life fall apart and my dreams fly away in a second like a house of cards. I believed my life was over and I no longer had a right to happiness. Thanks to the help of a big brother and doctor, I was able to … meet young diabetics like me and also to facilitate access to quality care, including the acquisition of devices and insulin. [With] the support of my family, doctor and friends, I was managing my life well with diabetes and got back to playing football.”

More Help Needed

One thing is clear. Intervention saves lives. Diabetes care in Mali has come a long way over the past two decades, but there is still so much to be done. The number of lives lost to missed diagnosis and under-treated diabetes around the world is unacceptable, and a little bit of help can go a long way. If you would like to find out how to get involved and potentially save lives, consider donating to Life for a Child.

Source: diabetesdaily.com

Treating Type 1 Diabetes in Bangladesh: Dr. Kaufman and Life for a Child

This content originally appeared on Beyond Type 1. Republished with permission.

By Francine R. Kaufman, M.D.

Greetings from Dhaka

Traveling over the city by air and then languishing in traffic forever to get to the hotel, I see what now seems typical of a developing country: cars, motorbikes, rickshaws, and people at a standstill jammed up in traffic with horns blaring like a discordant symphony; people living on the streets; old buildings with new structures next to them supported by cranes and rebar trying to reach for the sky.

Yesterday, I was at the main diabetes hospital all day seeing patients. I was with Graham Ogle, who runs Life for a Child and continues to deserve sainthood for his global work in bringing care, education, supplies, and life to close to 21,000 children around the world who likely would perish without his efforts. Graham is so humble and focused; he seemingly knows everyone and everything about the care of children with diabetes in Dhaka, as well as everywhere Life for a Child collaborates with local health care providers in over 40 countries.

Kid

Image source: Beyond Type 1

The diabetes hospital – called BIRDEM – is run by Dr. Bedowra Zabeen, an amazing woman and endocrinologist who is known worldwide for her work throughout Bangladesh. They follow over 7,000 children with diabetes (there are 9,000 total in all of Bangladesh); hundreds come in each day for outpatient care or to be admitted. The Life for a Child program follows 3000 children and young adults (up to age 26) and the Novo Nordisk program helps with another 3000 children. This means few can afford to buy insulin and supplies on their own since there is still insufficient support by the government or insurance programs in this country. From Life for a Child, they can only get regular and NPH insulin and 1-2 blood glucose strips per day. This is how I practiced pediatric diabetes 25-35 years ago. There are a few using newer insulins and even a few with insulin pumps, so if there are resources, families can buy better diabetes care than what is offered by these free charity programs.

Work to Be Done

The patients come through like a torrent. First, a newly-diagnosed child, so emaciated and weak, she could barely stand up. Then 4 children who seemed to be about five-to-six-years old, not adequately treated because they don’t have enough glucose strips, and as a result no chance to appropriately adjust insulin doses. School was a problem for each, either they had to miss a lunch shot or their mother had to come to administer it – most often without first doing a blood test. One was very hyperglycemic because her parents were unable to deny her anything she wanted to eat.

There were also two adorable 17-year-old twin girls, diagnosed within a year of each other, who had just graduated from high school and were waiting to see if they could go on with their education. Despite sleeping late, missing shots, and pretty much de-prioritizing diabetes (the universal story of adolescence and young adulthood), their A1cs were still good, mainly because they had way too many low glucose levels. There were many more routine cases: children taking only two insulin shots per day, having too few blood tests, not having refrigerators to store their insulin (they use clay pots instead), and feeling stigmatized and ostracized.

Then came the really hard cases: a child with severe insulin resistance (likely a gene defect due to too many consanguineous marriages in this country) taking 200-300 units of insulin per day, a child with dermatomyositis (a severe autoimmune disease of the skin and muscles) taking 500 units or more a day and chemotherapy and suffering the crippling joint effects of this rare disease that is most often complicated by diabetes. The fact that her hands were stiff and crippled made it all so much more amazing that she is an artist.

There were a number of pubertal children and even prepubertal children with type 2 diabetes – it’s hard to find someone who is not overweight/obese in Dhaka City, and the children appear to be the most affected. Bangladesh has one of the highest rates of diabetes: 8-10% of the population is affected and it is expected to quickly increase to 13% – and this is mainly Type 2. There are higher rates of kidney complications, but the most difficult aspect of having diabetes in Bangladesh is the stigma, the lack of education concerning its cause (children and their mothers are blamed), and the chance that anyone – particularly a child – can succeed with this disease.

Why We’re Here

Our type 1 diabetes workshop in Dhaka was sponsored by Life for a Child, the Bangladesh Diabetes Association, and ISPAD (the International Society for Pediatric and Adolescent Diabetes), and was organized by Dr. Zabeen. Forty-five physicians and nurses, dietitians, and psychologists from 11 cities and areas across Bangladesh attended our lectures and presentations. Some of the participants flew to Dhaka from the north, took trains for hours, and then battled the Dhaka City traffic to get to the Dhaka Club. It was a parade of brightly colored, sparkling saris since most of the attendees were women; many of the men had red hair and beards from henna staining.

Kid

Image source: Beyond Type 1

Our lectures were intermixed with lectures delivered by Dr. Zabeen, Dr. Azad (who started the field of pediatrics in Bangladesh), and a few other physicians who related the Bangladesh experience in childhood diabetes, pregnancy and diabetes, Ramadan and diabetes, and nutrition and diabetes. They discussed the struggles of managing this difficult disease in an area of our world with unimaginable poverty, very limited access to lab testing, supplies and medications (all with no way to pay for them short of a charity program, like Life for a Child), and in a culture deeply rooted in both prejudice and misunderstanding about diabetes. Schools make no concessions for the children at all, blame is placed on mothers and the children themselves, and they are often denied basic opportunities.

A young, 26-year-old woman who was diagnosed with type 1 diabetes (T1D) at 7 years of age came to speak to the seminar attendees. As a result of having diabetes, she was devalued so her father married her off at age 14. As usual in the villages, she went to live with her husband’s family. Since she arrived 12 years ago, her mother-in-law has not allowed her to have food unless her husband is home – and he works all day. So she fasts all day long, gets frequent and severe hypoglycemia, and often takes no insulin at all. Somehow in the midst of this all, she had a baby 5 years ago, and this little 5-year-old girl was skipping and running around, and adorable.

After our lectures each day, we took selfies with the attendees, and we even danced after my lecture on physical activity. The sway of the saris was mesmerizing and the joy and laughter totally infectious. Amidst it all, their questions and comments revealed how committed they all are to advance diabetes care for children in Bangladesh despite all of the obstacles. It was a struggle to go to the airport, but I somehow sat in the backseat and resigned myself to the stop and go traffic, the veering of cars from one lane to the other, and the constant cacophony of horns. It seemed to fit with my simultaneous feelings of despair and hope – with a great belief in Dr. Zabeen and her teams of amazing health care providers and her patients willing to share their stories.

Source: diabetesdaily.com

Type 1 Diabetes: Saving Lives in Bolivia

This content originally appeared on Beyond Type 1. Republished with permission.By Todd Boudreaux & Mariana Gómez For people living in under-resourced countries, the lack of access to diabetes supplies is a grave reality. Without support, many young people die every year from untreated type 1 diabetes. Life For a Child partners with diabetes centers across […]
Source: diabetesdaily.com

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