Personal Stories
Pillar of Health is Reshaping Healthcare in Rwanda for T1Ds
The ‘four pillars of health – nutrition, exercise, sleep and stress management’ are luxuries most of us take for granted. In Rwanda, many with type 1 diabetes are forced to go without breakfast, insulin and testing supplies like blood glucose meters and test strips; insulin pumps and continuous glucose monitors are obsolete.
Can you imagine dosing for insulin without knowing your blood glucose level? Many Rwandans with type 1 diabetes and those in other least developed countries, lack the basic necessities to manage the disease.
But that is changing in Rwanda, thanks to Laurien Sibomana, founder of the non-profit Pillar of Health (PoH). In 2019, he created the organization, which seeks to provide sustainable programs, resources, food and, most importantly, health insurance to assist T1Ds and their families.
Laurien Sibomana’s mission is to help children with type 1 diabetes (T1D). The focus is on children and youths because many T1D adults don't live over the age of 40. Since T1D resources and education are neglected, most people die before or after diagnosis.
“Meters and test strips are not covered by health insurance and are expensive for an average Rwandan family to afford. When we talk about type 1 diabetes (in the U.S.), we think of insulin, but for people in developing countries, food comes first,” Sibomana said.
With type 1 diabetes, the patients need insulin, and to take insulin, one needs food.
In Rwanda, Africa, Sibomana's home country, malnutrition continues to be a growing concern, and when a child drops out of school, it renders them even more helpless. “The people know very little about diabetes, and some patients live without insulin for long stretches of time,” said Sibomana.
This is one of the most significant issues, especially in the areas prone to droughts. Rwandan families are still large, and most people cannot afford breakfast, so they omit their morning insulin.
Due to Rwanda’s troubling history of genocide, war, and diseases like HIV, the country has a high number of orphans, some of whom are T1D. More concerning is that due to a lack of information and basic needs for T1Ds, a great many are at a higher risk for diabetes-related complications.
Founder Laurien Sibomana
Laurien Sibomana grew up in the Republic of Rwanda in the Great Rift Valley of east-central Africa. Born the eldest of six from a small village in the Southern Province, Sibomana came to the United States with a group of Rwandan students as part of a scholarship established by La Roche University, a private Catholic college in McCandless, Pennsylvania.
The scholarship offered students of war-torn countries like Rwanda, Burundi, Uganda, DRC, Ethiopia, Guinea, Kosovo and Palestine a way to educate others by returning home and giving back to their native nations.
“It was a little bit hard because English was not my first or second language, but the people were so welcoming. I made friends there, and some of them even support my program to this day.” Sibomana speaks Kinyarwanda and French, in addition to English.
His wife also came as a student, and the two were married in Pittsburgh. Sibomana received his bachelor’s degree in biology and chemistry from LaRoche University before completing his master’s in public health/epidemiology from the University of Pittsburgh.
Education is the Best Treatment
During his time as a research assistant on a T1D project in Rwanda, Sibomana witnessed the ongoing challenges faced by children and youth with this condition, as well as their parents.
“There are many needs, and I selected one where I could make the biggest difference.”
Sibomana doesn’t have T1D, but through his outreach, he now knows many living with the disease. “I saw sad, malnourished children and heard a lot of stories. The study lasted four years, and the good thing was that we received support both during and after the study.”
“Our university partnered with Life for a Child (LFAC) to offer essential care, including insulin and blood glucose monitoring devices,” said Sibomana. “The number of individuals we assisted grew from 300 in 2011 to 800 in four years, and it has now reached approximately 3000.”
PoH’s advocacy efforts include raising awareness about the lack of food and education. Sibomana has translated information from French to Kinyarwanda and put together a book in Kinyarwanda and English to help the community better understand diabetes.
Pillar of Health (PoH)
After seeing the devastating effects and lack of resources, Sibomana said that he couldn’t simply walk away. When the study finished, he felt compelled to assist T1Ds with their data management, supplies, transportation and logistics.
He created Pillar of Health and soon received a grant from the Panorama Global/Helmsley Trust. They provided $15,000 annually for three years, with 2025 being the last year. “I appreciate how they do not dictate the grantees,” Sibomana said. “I was able to reach 22 district hospitals through their support.” Since the grant ends next year, he is looking for additional assistance.
Since some patients walk for hours to get to the nearest hospitals, PoH provides meals for patients to avoid hypoglycemia. “It’s also a way for them to socialize and follow the nurse’s diabetes education,” said Sibomana.
T1D Stigmas In Other Countries
Like the United States, in Rwanda, type 1 diabetes is a very misunderstood condition. Some stigmas surrounding the disease include witchcraft and poisoning from neighbors. “With kids whose parents are completely illiterate, it’s hard to teach them about insulin injections,” Sibomana said. “To make matters worse, diabetes terms are foreign and hard to translate into Kinyarwanda (the native language).”
Sibomana said that T1D-related stigma is especially pronounced toward female T1Ds. “A young lady with T1D is more likely to stay single because no man wants to marry her and incur the cost,” said Sibomana. “Many believe she can’t carry a child to full term, and unfortunately, this is true.” When a mother with T1D dies due to unmanaged diabetes, she leaves orphans behind. Most of these females were orphans themselves.
Life in Rwanda
Rapid population growth and land scarcity have hurt the country’s way of life. Rwanda’s economy is based largely on subsistence agriculture, where families grow crops and raise livestock to meet their basic needs. PoH provides small livestock (pigs, chickens, and goats) for sustainability, and Sibomana is trying to include vocational training and small business assistance.
PoH has also established a village savings loan association to help folks with T1D make monthly contributions. Sibomana plans to develop a Peer Support Leaders Program (based on the Community Health Workers concept) to reduce the T1D-related stigma and strengthen the program nationwide.
The country has made great progress since the 1994 genocide against the Tutsi population and created an innovative type of family-based health insurance. Pillar of Health raises funds to provide free health insurance to those who can’t afford it, which are many.
Health insurance in Rwanda is Critical
In Rwanda, a person with type 1 diabetes without insurance pays $20 for a monthly insulin supply, still unaffordable to most of the Rwandan population. The country, however, has innovative health insurance known as “mutuelle de sante,” where each family member pays only $3 per year. Additionally, the person with type 1 diabetes just needs $2 to cover the cost of two types of insulin (instead of $20 without insurance).
How it Works
When the family is insured, the overall medical cost becomes only 10% of the total cost. The child’s medical checkups are covered, as are hospital bills for accidents, diseases like malaria, and maternal and child welfare needs.
The biggest incentive is that every family member must also be covered. For instance, a family of six must pay $18 ($3 per member), which some families can’t afford, leaving the T1D to suffer without insulin.
Without insurance, patients rely on donated insulin and may go without it for months. “Worst of all, I received reports about deaths, and it was happening frequently, mostly from hypoglycemia, DKA, or unknown reasons, and it was hard to exactly know because no autopsy is done unless it is a criminal case,” Sibomana said.
PoH also actively checks the availability of insulin, meters and test strips (Meters and test strips are not covered by health insurance). Since insulin pumps and continuous glucose meters are becoming standard management for those in the U.S., Sibomana is worried that the production of insulin syringes, meters, and test strips will decrease.
Ways to Help
Sibomana stressed that since T1D patients have so many needs, he wanted to find the most impactful method to bring about change. “When a child has T1D, I support the entire family so that the family members can help him/her, and health insurance is not just for the T1D, but for any other condition the family faces.”
Health insurance gives families the best chance at survival.
Health insurance is paid through a centralized website called Irembo, making it efficient and transparent.
Here is a link for people to donate to families’ premiums:
Pillar of Health does Many Things:
- Fundraising for health insurance for T1D families.
- Provides livestock for sustainability.
- Vocational training and assistance with small businesses.
- Supports children with breakfast and/or hospital bills.
- Establishing village saving loan associations for T1Ds to make contributions.
Small Steps Lead to Big Change
By focusing on sustainability and accessibility, Pillar of Health has developed programs to create lasting change. In many cases, PoH steps in to provide food, clothes and insulin. The donated funds pay hospital bills, and after patient discharge, they help pay for rent until these individuals regain their strength.
PoH encourages students to stay in school, as that is the best way for patients to obtain information and life skills. PoH’s future plans include creating a scholarship for T1D youths, a traditional dance group, and a vocational training center for T1Ds and those with other disabilities.
Sibomana said his goal is to focus on PoH programs full-time and expand them with social enterprise businesses, such as coffee and crafts from Rwanda, to make the organization sustainable.
Sibomana encourages young T1Ds who demonstrate leadership and empathy to become PoH Peer Support Leaders. These community health workers educate their peers, help with appointment reminders and even visit families of children with T1D.
“I never thought my program would have such a significant impact,” Sibomana said. “Unfortunately, it will take time to make meaningful changes because it requires long-time support, and as we know, most support is temporary/time-bound. We need to focus on socioeconomic determinants of health and be able to engage in long-term relationships.”
Donate Today to Save Lives
The cost of a cup of coffee ($3) can support a T1D child annually with health insurance.
Also, it only costs $21 to support a family of seven with health insurance for the entire year! This small donation goes so far and may very well save the life of a child with type 1 diabetes.
To make a donation to Pillar of Health: https://pillarofhealth.org/donate/.