December 4, 2017
Living with diabetes in Rwanda
Unfortunately, often in Rwanda the diagnosis process is delayed due to symptoms being overlooked or families visiting traditional healers before health clinics.
As a young woman living with type 1 diabetes, I have never been one to sit at home and let the world pass me by. Therefore, when the opportunity to study post-genocide reconstruction in Rwanda arose, I decided I wouldn’t miss it for the world. Raised in Hong Kong, Singapore, and the US, I have experienced diabetes care under three different medical systems. Everywhere I reside or travel, I aspire to learn how people live with diabetes.
Upon arrival in Rwanda’s capital, Kigali, I wanted to better understand the level of access to medicine and services, self-management techniques, and the perception of future prospects from those living with the condition. With the help of the Rwanda Diabetes Association (RDA), Marjorie’s Fund, and Dr. Etienne Amendezo, I was able to meet individuals living with diabetes in Kigali. Salama Umutoni, a 22-year-old female student at the University of Rwanda, was diagnosed with type 1 at age 13. Abdallah Murenzi is a businessman in his mid-30s who lives with type 2 diabetes. And Mariam Uwase, a 35-year-old nurse and mother of three, was diagnosed with gestational diabetes (GDM) during her second pregnancy. Together, these three individuals painted a picture of what life with diabetes in Kigali looks like.
Salama’s last HbA1c was 6.4%. She attributes her tight management to mentorship she has received from the RDA. However, living with diabetes has had its ups and downs. Salama admits, “It’s thanks to the RDA that I am taking insulin.” Upon diagnosis, her community pushed her to pursue traditional forms of treatment, as they were afraid of insulin’s long-term side effects. The RDA taught Salama that insulin is key to being healthy with type 1 diabetes; she asked RDA staff to intervene on her behalf to help her parents understand the importance of the medication. Now, she uses short-acting insulin and insulin glargine (long-acting), and injects two times per day. She also exercises often, and firmly believes that “what others can eat, I can eat.”
Abdallah was diagnosed in 2009. His father also has type 2 diabetes and Abdallah credits his family for their assistance. “My transition into life with diabetes was strongly supported by my family,” he says. For five years Abdallah had no diabetes complications, but in 2014 he began losing sensation in his fingers. Furthermore, 2016 was a trying year; due to work stress and other factors, his blood sugar averaged 200–300 mg/dL (11.1 – 16.7 mmol/L). Abdallah’s doctor stepped in during 2017 and prescribed insulin glargine to complement his oral medication, vildagliptin. This year, his blood glucose is consistently between 100 and 120 mg/dL (5.6 – 6.7 mmol/L). Abdallah has yet to regain sensitivity in his hands but he is carefully monitoring his diabetes and exercising frequently to ensure other complications are avoided.
Mariam was initially diagnosed with GDM in the 26th week of pregnancy with her second child. She managed her GDM with diet changes. It wasn’t until 2016 when she was pregnant with her third child that she was required to take insulin. Mariam was forced into an early delivery during her third pregnancy, as the fetus was not developing properly due to GDM-related complications. After her third child was born she was told that her diabetes would be gone, too. This turned out not to be the case, as she has subsequently developed type 2 diabetes. Now, she takes both gliclazide and vildagliptin on a daily basis and checks her blood sugar regularly. When asked about challenges, she acknowledges how, “diet changes are the hardest part of living with diabetes.” Thankfully, her children remain healthy.
Salama, Abdallah, and Mariam all have different diagnosis stories; however, certain aspects are similar. First, each described traditional pre-diagnosis symptoms of frequent urination, dehydration, and weakness. Second, all said that doctors correctly recognized their symptoms quickly and seamlessly. Third, they were all prescribed significant diet changes immediately upon diagnosis.
Unfortunately, many in Rwanda do not receive rapid diagnoses. Regularly, symptoms of diabetes are confused with those of malaria, especially in youth. Moreover, the diagnosis process is often delayed due to symptoms being overlooked or families visiting traditional healers before health clinics.
All three individuals agreed on one thing: diabetes supplies and medications are easy to come by in Kigali. Pharmacies – which are readily available throughout the city – carry test strips and needles. The numerous hospitals provide insulin and every hospital is outfitted with blood glucose meters so they can check those they believe are at risk of or have diabetes. In this case, Mariam, Abdallah, and Salama each have their own blood glucose meter.
Rwanda’s universal health insurance system covers an estimated 75% of the population. Through this program, Mariam pays 10% of her health bills, which amount to RWF 10,000 (approx. USD $12) per month post-pregnancy. While pregnant, she was responsible for 10% of her insulin cost. Abdallah pays around RWF 12,000 (approx. US $14) per month for his treatment, as 85% of the cost is covered by insurance. All of Salama’s medical supplies are provided by the RDA, and will continue to be until she reaches the age of 25. At that point, 90% of her insulin costs will be paid by insurance, but strips and other supplies will not be covered. Even under the protection of insurance, it is expensive to purchase all the necessary supplies; but without it, the cost of diabetes care would be completely unmanageable.
Salama took time to point out that while this is the case in Kigali, it is not necessarily so outside the city. She said: “in villages, many need amputations or go blind due to diabetes complications.” Hospitals are much harder to access, making it difficult to purchase insulin or other supplies. Many people in rural areas cannot afford blood glucose meters so they must go to hospitals to check, meaning their blood sugar levels are rarely known. For those without access to care, diabetes remains a silent killer.
The positive attitude of all three individuals is astounding. Abdallah said that although he fears further complications, his work has yet to be impacted by his diabetes. Salama aspires to be a big business owner who “doesn’t want to be affected in any way” by her type 1 diabetes. Mariam assists her doctor in his research so that she, too, may help raise awareness about diabetes.
Abdallah summed up living with diabetes in Kigali quite well when he said: “I want to encourage anyone with diabetes. You can live with diabetes, since you can manage it.” This is especially true with government insurance bolstering quality medicine and care, increased awareness around the city, and resources like the RDA providing impactful mentorship for those they can reach. Nevertheless, much remains to be done outside of the city in terms of access and education for all forms of diabetes.
Many people in rural areas cannot afford blood glucose meters so they must go to hospitals to check, meaning their blood sugar levels are rarely known. For those without access to care, diabetes remains a silent killer.