Being diagnosed with a chronic condition is only the beginning of a long journey involving treatment, lifestyle changes and regular medical follow-ups. For Jean Damaschee Uzabakiriho, 40, from Runda in Kamonyi District, living with diabetes has meant navigating these demands while dealing with complications that have profoundly changed his life. Uzabakiriho was diagnosed with type 2 diabetes in 2000. His leg was amputated in 2015, and he has continued to live with complications while struggling to sustain treatment without a job or reliable source of income. His experience helps reveals why some patients eventually stop returning to hospital. “I know, like in the case of diabetes, most people give up because of the consistency required in terms of maintaining your diet, ensuring that you have medicine and insulin all the time, and regularly visiting a health centre. For some, this becomes a difficult and costly process, and they give up,” he says. Prof. Joseph Mucumbitsi, Chief Consultant Paediatrician and Cardiologist at King Faisal Hospital (KFH) and Deva Medical Center, says financial hardship, transport costs and difficulties navigating the health system can all disrupt long-term care. ALSO READ: Rising NCD burden drives longer, costlier care, experts warn “Most of the time, it is a matter of transportation costs when they are coming from remote areas to Kigali, to the teaching hospitals,” he says, adding that some patients also struggle to keep their Community-Based Health Insurance (CBHI) contributions up to date. For patients managing lifelong conditions, missing appointments is not always a matter of neglect. The cost of travelling to hospital, obtaining medication and maintaining recommended diets can make regular care difficult to sustain, particularly for people without a steady income. “Sometimes you have the desire, but the means become a problem,” Uzabakiriho says. The cost of staying in care Mucumbitsi says the challenges can be particularly difficult for patients referred from rural areas to specialised facilities in Kigali. A patient diagnosed with cancer, for example, may be referred for radiotherapy but worry that the entire treatment process will be unaffordable. Transport is only part of the challenge. Some patients may also be unfamiliar with the city and unsure where to go for treatment. Mucumbitsi says patient navigation services for people with breast and cervical cancer have highlighted how difficult it can be for some patients to access specialised care. Older patients and those unfamiliar with the referral system may need help identifying treatment centres, arranging travel and understanding where to report. Without that guidance, a referral can become another obstacle rather than a clear route to treatment. When missed appointments become dangerous The consequences vary depending on the condition, but Mucumbitsi warns that interrupting treatment or attending follow-ups irregularly can have serious health consequences. ALSO READ: Rwanda needs to take the fight against NCDs beyond hospitals For people with type 1 diabetes, stopping insulin can cause blood sugar levels to rise rapidly and result in life-threatening complications. Even when patients continue taking medication but attend follow-ups irregularly, doctors may be unable to adjust treatment and keep blood sugar under control. Over time, persistently high blood sugar can cause nerve damage and foot complications that, in severe cases, may lead to amputation. “Even if you don't stop totally and you go intermittently for follow-up, your doctor will not be able to adjust the necessary dose for your blood sugar to be stable,” Mucumbitsi says. ALSO READ: Health check-up: Why you need annual reviews Patients with cardiovascular conditions also require consistent care. Those with mechanical heart valves may need lifelong anticoagulant medication to prevent dangerous blood clots. Interrupting treatment can cause clotting around the valve, with potentially fatal consequences. Similarly, patients with hypertension or heart failure risk deterioration when medication is stopped or treatment is not adjusted when necessary. Uncontrolled high blood pressure can increase the risk of stroke, disability or death. Cancer treatment also requires continuity. Delays in follow-up can allow the disease to progress, potentially reducing the chances of successful treatment. For people living with HIV, interrupting medication can allow the virus to rebound, weaken the immune system and increase the risk of serious illness. Bringing care closer to patients Rwanda has been expanding access to non-communicable disease services beyond referral hospitals. The Ministry of Health’s 2024/25 Non-Communicable Diseases Annual Report highlights continued efforts to strengthen early detection and management, including community screening and the involvement of trained community health workers. During the reporting period, 81.5 per cent of the target population was reached through screening for high blood pressure, elevated blood sugar and high body mass index. Bringing services closer to patients can reduce the need for repeated long-distance journeys. However, keeping people in care also requires support beyond the health facility. ALSO READ: Can ‘health taxes’ slow the rise of NCDs? Mucumbitsi says families have an important role to play, particularly when children or patients with complex conditions depend on others to help them attend appointments and maintain treatment. Patient support groups can also help people better understand their conditions, appreciate the importance of regular treatment and encourage one another to remain in care. Mucumbitsi says he has seen patients benefit from learning and sharing experiences in support groups, including those for people living with HIV and non-communicable diseases. For patients such as Uzabakiriho, however, improving access must also take into account the cost of maintaining a healthy diet and obtaining medication. Medical advice alone cannot overcome financial barriers when patients lack the means to follow it. Reminders and community support Health facilities can also help patients stay on track by reminding them of appointments and following up when they miss them. Mucumbitsi points to SMS reminders and digital applications as practical options, particularly for conditions requiring close monitoring, such as diabetes and heart disease. Patient registries can also help health workers identify people who are due for appointments and those who have stopped attending. “Health systems should have systems to remind patients about their appointments,” he says, noting that community health workers and local authorities can also help trace patients and encourage them to return to care. As services become more decentralised, health centres and community health workers can support patients who continue treatment closer to home after being referred to higher-level facilities. Mucumbitsi acknowledges that such systems are not yet fully operational everywhere, but says better use of patient registries, electronic medical records and digital reminders could improve continuity of care. For Uzabakiriho, the issue is personal. Living with complications while lacking a stable income has made managing his condition difficult, reinforcing his belief that patients need practical support to sustain treatment. Regular follow-up is not simply another hospital appointment. It allows health workers to monitor a patient's condition, adjust treatment and identify complications before they become more serious. Making that journey more affordable, easier to understand and simpler to maintain could help more patients remain in care.
