A cancer diagnosis can create almost unfathomable change to a person’s life. It can literally threaten our very being. And somehow, we live in a world in which we let this random, tragic occurrence exact profound cost in financial stability, only adding to the distress.

That is the message of a research report published by my colleagues at the American Cancer Society on the topic of financial hardship and sacrifice associated with cancer care in the United States.

Cancer care is expensive. Many folks have trouble paying for it. What’s worse, financial hardship is a toxic side effect of cancer care that can have very real impacts on the outcome of treatment. It has been linked, as my colleagues note, to “higher symptom burden and worse health related quality of life. Extreme financial insolvency (i.e., bankruptcy) is associated with increased risk of mortality.”

The problem is real; the impacts are devastating.

The research was done by examining information obtained through a national survey done in 2016. Overall, 15.5% of people with a history of cancer reported difficulties with paying their bills, 30.8% had a psychological impact from financial hardship, and 26.5% had to change their spending as a result of their cancer diagnosis and treatment. The impact was greater in those between the ages of 18-64 compared to those 65 and over.

The difference, as you might suspect, is likely because those folks 65 and older have Medicare, while those under 65 may have insurance, Medicaid, or no insurance at all—a factor that can be linked to where you live since some states have decided not to participate in Medicaid expansion under the Affordable Care Act. And, increasingly, that is being shown to have a genuine impact on the health of those who live in those locations.

This gets real when you can’t get the care you need, when you can’t pay the doctor bills, can’t cover the costs of the medicines that may save your life (and have become very expensive, even with insurance) and you have to either leave your job or make such substantial changes to your work abilities due to the cancer, its treatment, and their impact on one’s life.

Someone I know recently had a cancer diagnosis and was treated at a highly regarded medical center. Excellent professional care, excellent outcome, no significant deviations from the intended path. All OK on that front.

Then the bills start coming in: lots of bills from the hospital, the doctors, the insurance company, you name it. And they keep coming and coming, months later. You can’t make head or tail of the charges, the payments, the amount you owe, whatever. It is mind boggling, and way beyond one’s capacity to be certain what services were rendered by whom when or where. It was difficult to piece together– and I am supposed to understand this stuff!!!

Then there are the costs for some of the services, and a patient and family with no idea whether the insurance will cover it or how much coverage will be provided. Paying those bills (“the patient responsibility”) would be daunting for anybody.

Seeing someone go through that experience leaves one with a genuine concern how most people are able to cover these out of pocket costs (not to mention why the “list” charges are so high in the first place).

Keep in mind: This was for a fairly straightforward, uncomplicated course of treatment. What happens when your life is at risk from a disease like leukemia or myeloma or another advanced cancer? Who can possibly withstand this financial and emotional onslaught and NOT be distressed? And what happens when you don’t have insurance? Do they really expect people to be able to pay these inflated costs????

So, the research is in, and confirms that what you experience and what you feel when it comes to financial hardship or difficulty during a cancer diagnosis and treatment is not a matter of your own making. Many people share your distress, and for too many there are no good answers. And worse is that the distress may make the outcome of your care less than ideal, not to mention persist long after the cancer itself has been treated.

There aren’t any easy answers. Medicare and the Affordable Care Act help, however as the authors of the study note the ACA is undergoing modifications, and perhaps not for the better. And not everyone who gets cancer has the benefit of being 65 or older and on Medicare.

We need solutions that work, for everyone. However, first we need understanding that these problems are real, that they impact everyday people every day, and that until we can fix this system we won’t be able to achieve the improvements in cancer care for everyone that are available to us right now.