Helping Communities to Live Well with Type 1 Diabetes in Argentina, Ghana, India, and South Africa

It is estimated that nine million people living with type 1 diabetes in low-and middle-income countriesdepend on life-long insulin treatment for survival, according to the World Health Organization. Type 1 diabetes is a life-threatening chronic condition in which the pancreas produces little or no insulin—a hormone that controls the amount of sugar in your blood to produce energy. There is no known prevention for type 1 diabetes, however, it can be treated effectively with access to vital health services and supplies, living a healthy lifestyle, and monitoring blood sugar.  

At Panorama Global, we believe investing in community-based organizations (CBOs) is crucial to providing sustainable life-saving care. That’s why we’ve teamed up with The Leona M. and Harry B. Helmsley Charitable Trust to launch The Type 1 Diabetes (T1D) Community Fund to support CBOs in improving the lives of people with type 1 diabetes worldwide.  

Below, you will meet four of our partners—some of whom know first-hand the difficulties of living with diabetes—including a youth leader from Argentina, a health officer from Ghana, a diabetic educator from India, and a diabetes advocate from South Africa. Collectively, they are diligently working in their communities and across borders to reverse undiagnosed diabetes, raise awareness about the impact of diabetes, increase access to insulin, and much more.

Estefanía Malassisi

Tell me about yourself and describe the community where you work.

I'm a young leader and patient advocate at The Association for the Care of Diabetes in Argentina CUI.D.AR. I’ve been living with type 1 diabetes since I was two years old. I live in Buenos Aires, but CUI.D.AR’s community includes children and adults living with diabetes from Argentina, and other countries in the region.

At CUI.D.AR, I work with my teammates to carry out activities for children and young people with type 1 diabetes, to provide concrete solutions to the needs and problems that affect [their] daily lives.

How and why was your organization created?

CUI.D.AR was created in 2001 by a group of mothers and fathers of children with type 1 diabetes to support other families and help them cope with diabetes and learn to live a full, healthy, and happy life.

CUI.D.AR has worked on behalf of people living with this chronic condition to minimize the impact of diabetes on their lives. Throughout the years, we’ve become the largest diabetes community in Argentina and the second in Latin America, with more than 120,000 followers in our social networks (@cuidardiabetes) and a database of more than 38,000 direct contacts.  

What made you want to work in the health sector—specifically on type 1 diabetes?

The diagnosis of type 1 diabetes [impacts] a child, young person, or adult diagnosed, and [their] family. This moment can be very distressful— full of doubts, fears, and anxieties—and support is not always available. The diagnosis can have an impact, so it's important that the person and the family move forward, seek care, and have a full life without complications.

I was diagnosed with type 1 diabetes at the age of two, and at the beginning, CUI.D.AR was of great help and support [to]my family and me. As I grew older, I felt the need to get [involved] in CUI.D.AR's activities, where I could bring my experience and support other children—who, like me, are living with diabetes. Working in the health sector and specifically on type 1 diabetes allowed me to transform [my diagnosis] into an opportunity to help and support others. So that they, in turn, can find a "what for" in diabetes diagnosis.

What do you think is the biggest challenge for people with type 1 diabetes in your community?

• The lack of diabetes education, information, and social awareness about the condition.
• The lack of access to treatment and technology, including medication.
• [Being] unaware of their rights and the laws that protect them and lacking information on how to care for themselves.

What about your work makes you most proud?

What I am most proud of is being able to change and improve the lives of people like me, who are living with type 1 diabetes. At CUI.D.AR, we are the driving force behind many projects and programs that have changed the lives and perceptions of children, young people, adults, and families over time.

Being able to help people is what makes me intensely enjoy my work at CUI.D.AR. It complements the [path] I have chosen for my life—to finish my career as a pediatrician and specialize in diabetes to [support] other children who, like me, live with type 1 diabetes.

"Our work can mean the difference between [perishing] from diabetes or living the best life with diabetes."

If you had one message to send to others leading the fight against type 1 diabetes, what would it be?

To those leading [the fight] in type 1 diabetes, I would say that, while at times the work is an uphill [battle], the result of helping to change the world, even if it is only the life of one person living with this condition, is deeply moving. Because for that person, our work can mean the difference between [perishing] from diabetes or living the best life with diabetes. To be able to feel the pride of having been able to help others is very rewarding, so I strongly suggest everyone get involved!

Comfort Dikro

Tell me about yourself and describe the community where you work.

I am a certified nutritionist, working as a Community Outreach Health Officer and a GESI2 Advocate at theVolta Educational Renaissance Foundation or VEReF. I lead the community outreach [division] of VEReF's Health and Nutrition Program. I work in communities in the Western North Region of Ghana.  

"Type 1 diabetes is treatable, so early detection should [be] encouraged. Therefore, continuous community advocacy by way of education, sensitization, screening, and treatment should remain the focus."

How and why was your organization created?

VEReF was formed out of the passion to accelerate inclusive sustainable development in West Africa. The Founder of VEReF started with a group of volunteers that advocated and offered free medical screening, testing, and treatment of HIV, tuberculosis, malaria, [hypertension], and diabetes through community outreach under its Health and Nutrition Program. They also distributed menstrual pads, toothpaste, toothbrushes, vitamins, calcium, and beverages to children and adolescents from [low-income households]. This work included [treating] community members [who had] public health diseases.  

Since the prevention of avoidable diseases became the leading intervention strategy, in 2013, VEReF’s Health and Nutrition Program [prioritized] type 1 diabetes because it has remained an area with little attention.

What made you want to work in the health sector—specifically on type 1 diabetes?

I’m committed to working in the health sector because [I am] a trained nutritionist, [can] bring my expertise [to help] save lives. As a mother of three, healthy, happy children are my happiness. So, since type 1 diabetes is associated with the health of children, I graciously decided to work [in] this [sector].

What do you think is the biggest challenge for people with type 1 diabetes in your community?

[Before] joining VEReF in 2017, I did not know that children from Africa as [young] as three or four years [have] diabetes. When I joined VEReF, I encountered [this] shocking revelation through community outreach and health screening for common diseases. From experience in community public health, lack of knowledge, access to good and healthy nutrition and medication, and inability to afford the cost of regular glucose tests [are challenges].

What about your work makes you most proud?

When a type 1 diabetes patient’s health improves steadily and when we [identify] new cases through VEReF’s community outreach activities.  

If you had one message to send to others leading the fight against type 1 diabetes, what would it be?

Type 1 diabetes is treatable, so early detection should [be] encouraged. Therefore, continuous community advocacy by way of education, sensitization, screening, and treatment should remain the focus.

N. Subhashini Devi

Tell me about yourself and describe the community where you work.

I am a certified diabetic educator with a Bachelor of Science in Nursing and [two] post-graduates in Medical and Psychiatric Social Work, and Nutrition and Dietetics. I’m also a scholar pursuing a Ph.D. [to study] the quality of life of adolescents with type 1 diabetes in [India’s] Pune region.

I [have been] with the Nityaasha Foundation since its inception. Nityaasha [works] in and around the Pune District of Maharashtra. [We work] in neighboring districts like Ahmednagar, Beed, Satara, and Sangli in urban and rural communities that [lack] awareness of type 1 diabetes.

"[Doing] [what] [I] enjoy and love, [like] working with children and families is fundamental to me. The children [supported by] Nityaasha learn to manage type 1 diabetes at home and prevent diabetic ketoacidosis or DKS, a life-threatening diabetes complication. One of the parents expressed that their daughter used to be admitted to the hospital every six months for DKS, but now it has been almost six years since she’s [been] admitted."

How and why was your organization created?

The [origin] of Nityaasha Foundation begins with Mr. Farook Merchant and Mrs. Nasima Merchant who were [eager to] give back to society. It was founded on July 25, 2013, to help underprivileged children with type 1 diabetes. The objective is to provide an equal opportunity for all to cherish the gift of life.  

What made you want to work in the health sector—specifically on type 1 diabetes?

Before joining Nityaasha, I [worked] as a paraprofessional [helping] children with different illnesses in a pediatric ward. Type 1 diabetes is a lifelong [illness], [but] with proper treatment and day-to-day management, one can live a better quality of life. I [want] to help children with type 1 diabetes and [their] families and spread awareness [in] the community.

What do you think is the biggest challenge for people with type 1 diabetes in your community?

A child with type 1 diabetes [can be seen as] a burden [to] their family [because of] medical expenses, follow-up requirements, diet, etc. For a girl child, the parent starts thinking about their future and who will marry their daughter. Some of the children refuse to take insulin injections at school, [because] they worry about [being] rejected by their friends.

What about your work makes you most proud?

[Doing] [what] [I] enjoy and love, [like] working with children and families is fundamental to me.  

The children [supported by] Nityaasha learn to manage type 1 diabetes at home and prevent diabetic ketoacidosis or DKS, a life-threatening diabetes complication. One of the parents expressed that their daughter used to be admitted to the hospital every six months for DKS, but now it has been almost six years since she’s [been] admitted.

The Nityaasha Foundation also covers medical expenses so that children [don’t] drop out of school. I’ve been working with these children for 10 years and some are pursuing higher education, confident with handling their [diabetes], and able to afford medical [fees]—which makes me proud.

If you had one message to send to others leading the fight against type 1 diabetes, what would it be?

Accept [diabetes]. You are not alone [in this] fight. Let's [work] together and to [address] the issues and challenges.

Bridget McNulty

Tell me about yourself and describe the community where you work.

I'm a diabetes advocate for Sweet Life Diabetes Community, South Africa's largest online diabetes community. We're a non-profit organization with a single focus: to empower people living with diabetes in South Africa.

How and why was your organization created?

Sweet Life started 11 years ago as a free quarterly magazine (with a website and Facebook community on the side). It was created to show that it's possible to live a healthy, happy life with diabetes, [and] empower South Africans with diabetes with the support, education, and community they need to manage their condition well.

What made you want to work in the health sector—specifically on type 1 diabetes?

When I was diagnosed 15 years ago, I was sent home from [the] hospital with a stack of information about type 1 diabetes. It told me I was at greater risk of blindness, amputation, heart disease, and kidney failure. Nothing I read told me I could live a perfectly normal, happy, healthy life with diabetes if I looked after myself. I felt very alone and isolated in managing my condition, and I wanted to change that for others being diagnosed—and their families.

"On the way to a cure, let's focus on quality of life for as many type 1s as possible. Affordable tech. and devices are life changing."

What do you think is the biggest challenge for people with type 1 diabetes in your community?

The 24/7/365 nature of the condition, and how that relates to mental health [is challenging]. It's deeply exhausting to always be on top of diabetes, [and] on top of everything else. We also don't have a lot of access to life-improving tech like continuous glucose monitoring or CGMs (insulin pumps) and are advocating for more access for more people. Luckily, South Africa provides insulin to all type 1s, but the testing side is not as consistent, and certainly not as advanced.

What about your work makes you most proud?

We have built a thriving community of South Africans with diabetes. We need to grow it, and empower more people, but the community aspect of it—people chatting to each other, offering support, commiserating, understanding—is so powerful, and makes me so proud. I'm also really proud of the foundational building blocks of diabetes education we've created so far, and excited about the ones we'll be creating this year and next.

If you had one message to send to others leading the fight against type 1 diabetes, what would it be?

On the way to a cure, let's focus on quality of life for as many type 1s as possible. Affordable tech. and devices are life changing.

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