Beyond Catastrophic Health Expenditure: Non-financial Consequences and Informal Caregiving Costs of Chronic Non-communicable Diseases in Lagos, Nigeria

For decades, when doctors and policymakers in places like Nigeria have tried to understand the cost of long-term illnesses like diabetes and heart disease, they have mostly looked at the price tag. They counted how much money families spent on medicine, clinic visits, and tests, and they worried about the moment those costs became so high that they destroyed a family's savings. This focus on the bill is important, but it tells only half the story. It misses the quiet, invisible ways that chronic sickness reshapes a person's life and their family's daily rhythm. It overlooks the fact that being sick often means you can no longer do the things that make life feel like life: you might stop going to church, skip family gatherings, give up your favorite hobbies, or even struggle to put food on the table. It also ignores the heavy toll on the family members who step in to help. When a parent or spouse falls ill, another family member often has to pause their own work to provide care, losing income and time in the process. Understanding these hidden costs is crucial because if a government only tries to fix the price of medicine, they might still leave families struggling with a broken social life and a depleted workforce.

A team of researchers set out to measure these invisible burdens in Lagos, Nigeria, a city of over 25 million people where the public health system is stretched thin. They visited public hospitals ranging from small local clinics to large, complex teaching hospitals and spoke with nearly 500 adults living with chronic conditions. Instead of just asking how much money they spent, the researchers asked a different set of questions: Has the illness made it hard to afford basic needs? Have you stopped doing things you enjoy? Have you pulled back from your community? They also asked about the people helping them: Did a family member have to stop working to take care of the patient? How many days of work did that helper miss? By looking at the answers, the researchers built a picture of the total weight of illness, not just the financial weight, but the weight on a person's freedom and a family's ability to earn a living.

The results revealed a stark reality that goes far beyond the cost of a doctor's visit. Nearly half of the patients surveyed were carrying what the researchers call a "high social burden," meaning they had given up on three or more important parts of their daily lives. For many, the struggle to pay for treatment forced them to borrow money or sell household assets, a desperate move that the study found was the single strongest predictor of this deep social loss. When a family is forced to borrow or sell things to pay for care, the patient is far more likely to withdraw from society, stop enjoying leisure time, and struggle to maintain their usual lifestyle. This suggests that the act of scrambling to pay for care is just as damaging to a person's well-being as the cost of the care itself. The study also found that while the struggle to afford food and basic needs was common across all types of hospitals, the loss of social connection and hobbies was much worse for patients at the largest, most complex hospitals. This likely reflects the fact that patients at these top-tier facilities often have more severe, long-standing, and complicated health problems that make it harder to leave the house or participate in community life.

The story of the family members providing care was equally compelling. Two out of every three patients had an informal caregiver, usually a child or a spouse, who was helping them manage their illness. However, this help came at a steep price. More than 60 percent of these caregivers had to leave their caring duties at some point just to go out and earn money for the household. The pressure to earn money often clashed with the need to provide care, forcing family members to choose between keeping the patient safe and keeping the family fed. The study calculated that, on average, a household lost nearly two full weeks of productive work every single month because of the patient's illness and the caregiver's time off. When the researchers valued this lost time using the country's minimum daily wage, the financial loss was substantial, yet it remained invisible to standard health reports that only track medical bills.

Perhaps the most significant finding was that the things causing the most trouble for patients were different from the things causing the most trouble for their caregivers. For the patients, the biggest driver of social loss was the financial panic of having to borrow money or sell assets. For the caregivers, the biggest driver of missing work was the complexity of the patient's disease. When a patient had multiple chronic conditions at once, the care required became so demanding that the caregiver was almost certain to have to take time off from their job. This distinction matters because it shows that a single solution cannot fix the problem. Simply making medicine cheaper might help the patient avoid the social isolation caused by debt, but it will not necessarily free up the caregiver's time if the disease itself is too complex to manage easily.

The researchers concluded that the true cost of chronic disease in Lagos is a coupled experience of financial hardship, social withdrawal, and lost labor that affects the entire household. They argue that current health policies, which focus heavily on preventing families from spending too much on medicine, are missing the bigger picture. To truly protect families, policies need to address the distress of borrowing money, manage complex diseases in ways that reduce the burden on caregivers, and recognize the time of informal caregivers as a valuable economic resource. Until these hidden costs are measured and addressed, the full weight of chronic illness will remain uncounted, leaving families to struggle with consequences that no medical bill can fully explain.