By: Citlalli Lopez, MPH 

A new diagnosis can change life in the blink of an eye. Suddenly, there are appointments to schedule, medications to pick up, and specialists to see—all while navigating a complex health insurance system.  

Other questions may not come up in the exam room: How will we get to all these appointments? Can I afford to miss work? Who will take care of my children? After paying for my care and medication, will there be enough money left for groceries or rent? These costs may not appear on a medical bill, but they are a huge part of the cost of being sick. The resulting financial distress is known as financial toxicity. 

The National Health Council’s (NHC’s) new report, Managing Financial Toxicity: Patient Experience, Gaps, and Unmet Needs, draws on a review of published and gray literature and three Cost Sharing Listening Sessions to examine the real impact of financial toxicity on patients.  

The literature review identified four major factors: unclear cost-sharing information, complex coverage, gaps in health insurance literacy and support, and poorly coordinated policy reforms. The listening sessions then illustrated how these challenges affect everyday life, with participants describing trade-offs between care and basic needs, treatment delays, and financial strain on caregivers. 

Together, the findings point to a need for clearer cost and coverage information, simpler health care and insurance navigation, and stronger implementation and coordination of affordability policies. These priorities provide the foundation for We Are All Patients: The Cost of a Broken System, the NHC’s initiative to unite patient organizations and partners around a shared advocacy agenda to improve access and affordability. 
 
Costs Beyond the Medical Bill 
 
The listening sessions brought together 23 participants representing nonprofit patient advocacy and research organizations who contributed community, research, and policy perspectives, along with lived experience. Across the conversations, participants described a health care system where financial impact of an illness goes beyond copays, deductibles, and prescription costs. Transportation, child care, missed work, caregiving, housing, food, and the time spent navigating a complicated health care system can all become part of the equation.  

As one participant put it, “It’s not solely just the medical costs itself, its everything that goes with it.” 

A patient may need to travel to another city or state because the necessary specialist isn’t available locally. Beyond the cost of care, there are gas, airfare, hotels, meals, and time away from work. A family member traveling with the patient may face these costs too.  

Or consider someone who needs an expensive medication but also needs to buy groceries. One participant shared, “We hear this all the time with patients… it’s cost, and it is they can’t afford their medications; they have to go without food, their children are suffering.” These aren’t decisions anyone should be forced to make. Participants also described delaying treatment because costs are unclear and losing income when illness makes working nearly impossible. 
 
The Toll on Caregivers 

Caregiver burden also emerged in these conversations. A caregiver might need to miss work, coordinate care, communicate with insurance companies, or provide the support that a person needs. While household expenses increase, household income decreases. 

Caregivers can also find themselves becoming what one participant called a “de facto financial navigators,” expected to interpret pricing and insurance jargon without having the information or tools to do so. Participants described caregivers putting off their own health care so the family could afford the patient’s treatment. 

These pressures can leave patients and caregivers frustrated, exhausted, confused, and overwhelmed. 

Making Affordability Work for Patients 

Policy makers can look beyond whether an affordability policy exists on paper and examine whether patients can benefit from it in practice. Health care providers can make financial conversations and navigation part of care before patients reach a crisis. Insurers can clarify coverage, cost-sharing requirements, and patient responsibilities easier to understand. Patient organizations can continue advocating for policies addressing indirect costs, caregiver burden, administrative burden, and the realities of living with multiple chronic conditions.  

Most importantly, affordability needs to be understood within the context of people’s lives. 

A copay does not exist in isolation from a grocery bill. A treatment plan does not exist separately from a person’s job. An appointment does not happen without transportation, time, and sometimes a caregiver. A policy designed to make health care affordable has to work for the people it is intended to help. 

Financial toxicity is more than a medical bill. It is the ripple that a bill can create across a person’s health, work, family, and everyday life. 

Read the executive summary of Managing Financial Toxicity: Patient Experience, Gaps, and Unmet Needs to explore the findings and recommendations from the Cost Sharing Listening Sessions.