The hidden costs of a disease: who really pays?
When we talk about the financial burden of chronic diseases, we often focus on medical expenses - doctor visits, medications, diagnostic tests, and hospitalisations. But what if I told you that even in a country with universal health coverage (UHC), more than half of the costs associated with a chronic illness are not covered by the healthcare system?
For a paper I’m writing, I came across a staggering number: €3.5 billion per year. That’s the estimated total cost of a specific chronic disease in Italy. While the national health system covers many direct medical expenses, a significant portion of the financial burden still falls elsewhere - on patients, their families, and society.
Beyond hospital bills, patients face hidden costs that can be just as overwhelming:
Non-medical costs: Transportation to medical appointments, home modifications, assistive devices, special diets, and paid caregiving services.
Indirect costs: Loss of income due to reduced work capacity, time away from jobs, or even family members leaving work to become unpaid caregivers.
Who pays for these costs?
The reality is that chronic disease costs are shared among different players: ✅ Some are covered by the healthcare system. ✅ Some are absorbed by employers and society. ❌ But many fall directly on patients and their families.
We tend to assess access to care based on whether a treatment is reimbursed. If a drug or therapy is fully paid for by the national health system, we often consider it a success. But is it really?
Even in a country with strong public healthcare, patients still struggle. They lose income because they can’t work. They pay out-of-pocket for private consultations, travel to specialized centers, or hire caregivers for support at home. These burdens aren’t just financial; they impact quality of life, mental health, and overall well-being.
What’s the solution?
We need to shift the conversation beyond reimbursement policies. The real challenge is reducing the overall burden of chronic disease, not just covering medications, but also addressing the financial and social impact on patients and their families.
The way forward? Bring all stakeholders - patients, healthcare providers, employers, policymakers - to the same table. Until we design solutions that go beyond direct medical care, we’ll continue to miss a big piece of the problem. While UHC systems address many aspects of healthcare, including medical costs, non-medical and indirect costs often remain outside the scope of coverage. Comprehensive strategies that incorporate social care, preventive health, and financial support systems are needed to reduce the full burden of chronic diseases. Integrating these services into UHC could help mitigate the financial strain on patients and their families.
Sources: Benucci M. et al., 2016
