Overcoming Obstacles to Treat T1D in Ecuador
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 1: What 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
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