It is estimated that nine million people living with type 1 diabetes in low- and middle-income countries depend on life-long insulin treatment for survival. 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 three of our grantee partners—some of whom know first-hand the difficulties of caring for loved ones living with diabetes. Collectively, they are diligently working in their communities and across borders to treat undiagnosed type 1 diabetes, raise awareness about its impact, increase access to health insurance, and much more.
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I am the Executive Director at Innovations for Development (I4Dev). As a team leader, my role is to champion strategies and cultivate innovations to improve health and education outcomes that will give marginalized communities agency and support.
Innovations for Development was created by a collective of grassroots representatives to champion the right to health and education of underprivileged, marginalized, and underserved communities in Uganda through advocacy and service delivery.
Our efforts to create a better environment in schools, communities, and healthcare spaces where families with T1D can thrive and live healthier lives while protected and loved by their communities is something we're so proud of.
This cause is personal to me. At just 16 my little sister, Martha, was diagnosed with type 1 diabetes (T1D). She died nearly three months before her 18th birthday. Her last word to me was "I don't want to die." Sadly, I couldn't save her, neither could the healthcare system. I often imagine what she could have become.
There is an undeniable reality that nearly all children ten years and under who are diagnosed with T1D will die before their 25th birthday. These deaths are preventable with existing technologies, but the reality is that the available technologies are unaffordable. Affected families wallow in despair, poverty, and stigma.
This is unacceptable anywhere, including my country, Uganda. This is why we fight every day to share the voices of those forgotten simply because of their fate.
The cost of care, especially for life-saving products like insulin, is overwhelmingly unaffordable even for the average middle-income family. But for an ordinary, poor household, who are the majority, death is the only outcome.
Coupled with stigma and a weak healthcare system, living with T1D is not just a nightmare, but a death sentence.
Firstly, we're proud of the community platforms we've co-created with people living with T1D to have a collective voice and network with peers to fight isolation and stigma. Our efforts to create a better environment in schools, communities, and healthcare spaces where families with T1D can thrive and live healthier lives while protected and loved by their communities is something we're so proud of.
Additionally, we're continuing to provide healthcare workers, teachers, and social workers with the latest skills and knowledge to support young people living with T1D in forgotten rural and urban poor communities.
I ask myself, what if [my sister Martha] had been born in another place or time, would she have survived to become an adult and have a family? But then I remember the so many who are still struggling to survive.
T1D should not be a death sentence. People like Martha should not be just mere statistics; their humanity is worth fighting for. All they dream of is a fighting chance. I believe, collectively, humanity can give us this chance, at least the bare minimum: [to have access to] T1D medicines that are affordable to us in forgotten communities of Africa.
We believe that quality and affordable health care for all is a fundamental human right that should be enjoyed by all (both high income and low-income earners).
I am the Executive Director for Ark Development Organization. I am from Aburi, a community in the Eastern Region of Ghana, and my passion has always been to improve the lives of women, children, and people with disabilities in rural, hard-to-reach communities.
Ark Development Organization (ADO) is a non-governmental organization in Ghana established in 2001 that works toward “creating a world of equal opportunities.” ADO is a health, education, governance, and environmentally focused organization committed to improving the lives of women, children, and the disabled through capacity building, evidenced-based advocacy, and innovative participatory programs. ADO has been operating in the Eastern region of Ghana, undertaking several social development initiatives in rural and peri-urban communities.
We work in hard-to-reach communities that are less endowed with social amenities. Our project communities are small farming communities where modern buildings that provide adequate ventilation are few; community members commute miles to access quality health care services, as local health facilities are often inaccessible due to poor road networks; and where most of the community members are children and young adults who are dependent on their parents and guardians for survival and development. Most of them are from low-income families and do not have adequate financial capacity (poverty). Peasant farming is the mainstay of most of the rural families and those in the peri-urban areas depend on unskilled labor, however, most can develop their potential if they get support.
ADO emerged in 2001 through the efforts of four young Ghanaians and one Canadian who saw the need to offer social services and health education to rural communities. This vision came about when they realized, on their regular visit to rural communities, that most rural folks needed information about health, education, child rights issues, women’s empowerment, livelihood empowerment, and youth development.
Since our establishment 20 years ago, ADO has been using social and behavior change communication, rights-based and participatory approaches—such as house-to-house sensitization, radio talk shows, in-school education, durbars, citizens WhatsApp sensitization platforms, focus group discussions, dialogue and town hall meetings—as well as community structures to create an enabling environment for improved participation, health outcomes, and a standard of living that empowers disadvantaged people. This includes a focus on groups including women, girls, children, persons with disabilities, and people living with diseases and chronic health conditions such as diabetes, HIV/AIDS and tuberculosis.
We live in a part of the world where traditions and superstitions are the norm and where people have less knowledge about their health and wellbeing. Over the years, we’ve noticed that changes in the lifestyle of rural folks have led to the emergence of certain diseases. And so, ADO ventured into the health sector to help change behaviors. We believe that quality and affordable health care for all is a fundamental human right that should be enjoyed by all (both high income and low-income earners).
[By visiting rural communities,] we realized that the lack of knowledge about [type 1 diabetes] and superstitious beliefs were making rural folks view certain diseases as spiritual. Since 2016, our main goal on diabetes has been to educate and sensitize rural folks in a bid to change behavior regarding the disease, and to refer people to the Ghana Health Service for diagnosis and support in treatment and care to ensure that we improve the lives of people living with diabetes.
I will share one of many examples. On a visit to one of our intervention communities to undertake sensitization on noncommunicable diseases (NCDs), we met with a family of six, including a 12-year-old girl, who according to the mother, was always sick. The mother believed that the girl’s illness was spiritual and had been sending the girl to a fetish priest. [Eventually, our team] persuaded the mother to consent to sending her daughter to the district health facility for diagnoses, which confirmed that the girl had been living with type 1 diabetes.
The high cost of insulin and its limited availability at community health facilities are major challenges for people with T1D. As such, the socio-economic condition of the family is key in determining the level of access to treatment and care.
Managing T1D requires adequate financial capacity, which is a major challenge to most patients in the districts. Most patients, often children and young people dependent on parents or guardians, have low-income backgrounds and are unable to afford the required services that will keep them in stable condition. Some patients and caregivers may be unemployed or may lack the skills to engage in a productive activity. Additionally, poor road networks and the high cost of transport from rural communities to urban health centers for treatment and care put additional strain and stress on families of people living with T1D.
The smiles on the faces of our clients on making their lives more comfortable and minimizing the burdens on their families.
The fight against T1D is not for one person, but a collective effort to impact lives of people living with diabetes.
I’m from Rwanda, living in the USA, and the Founder/ Director of Pillar of Health (PoH), a non-profit whose mission is to have every person with T1D in Rwanda have health insurance and be sustainably able to afford diabetes care.
PoH currently assists 1,300 children, youth, and families from 11 district hospitals, and thanks to [funding from The T1D Community Fund], we plan to expand to 21 district hospitals in 2023. Over the past 12 years, I have developed friendships with children, youth, families, healthcare professionals, and local officials.
As a researcher at the University of Pittsburgh, I used to help children with T1D, but COVID-19 pushed me to form an organization for better and further support in Rwanda. It started as emergency support with food, transportation, and insulin, but we later focused on health insurance and livestock. It was essential because of the consequences of COVID-19, such as lockdown and lack of jobs.
In my nature, I love to help people in need. Through a scholarship to study at La Roche University and the University of Pittsburgh, I was fortunate to be introduced to Dr. Trevor Orchard, who was doing research on T1D in the USA and wanted to expand to Africa. I never imagined that T1D existed in Rwanda, but what I saw changed my view forever, and I have dedicated my life to this cause.
In the United States, I saw people living with T1D like anybody else. But while in Rwanda, I saw people surviving in precarious conditions—or dying. The only difference [between living with T1D and dying] was access to medicine and food. Through a collaboration with Life for a Child (LFAC), I understood that diabetes could be managed anywhere, regardless of the location (rural or urban).
Everything is linked to poverty, and I can cite cost as one of the biggest challenges. Insulin and access to diabetic supplies is another problem because often insulin may not be available, or monitoring mechanisms, such as meters or strips are too expensive and not covered by mutuelle de sante, [the community-based health insurance run by the Rwandan government]. Food is another big problem, worse now due to an ongoing drought that has prevented agricultural activity.
Never give up and be patient and passionate. A young person with T1D can live an everyday life if supported, but they need more than just insulin.
Every child or youth with health insurance regularly attends medical appointments and gets insulin and supplies, like syringes. Parents and family members are more engaged, as well as the healthcare providers. However, without health insurance, a child with T1D cannot even show up for care.
Never give up and be patient and passionate. A young person with T1D can live an everyday life if supported, but they need more than just insulin.
Read more about The T1D Community Fund and sign up for our mailing list to receive updates about the T1D Community Fund's work, grantee partners, and future RFPs.
