I’m a two-time cancer survivor, diagnosed with bone cancer at age 21 and leukemia at age 23. In 2003, I created an organization called The Samfund, which is now a program of Expect Miracles Foundation, to support young adults (like me, at the time) facing financial toxicity. Back then, there was no name for it. Now, it is an issue that affects anywhere from 25% to more than 80% of cancer survivors. 

What is financial toxicity?

Put simply, it is the negative impact of many factors – including medical bills, loss of employment, cost of insurance, and ongoing co-pays and other everyday bills – due to cancer. Financial toxicity can affect those dealing with cancer, as well as their partners and caregivers, in the short term (e.g., trying to manage stacks of medical bills while dealing with reduced income) and for many years afterwards (e.g., damaged credit, bankruptcy, disrupted education). All of this creates unimaginable stress and anxiety which can lead to poorer health outcomes.

Our Samfund programs are here to help young adults recover financially from cancer; to date, we have awarded over $5 million in grants to young adults across the United States, for a wide range of needs including medical bills, living expenses, health/wellness costs, family building efforts, and more. In recent years, we have also engaged in advocacy efforts to address these issues at a systemic level, published articles in peer-reviewed and other journals, and provided education and community to thousands of young adults and their families. 

One of the benefits of having been in this space for almost two decades is that we’ve learned a tremendous amount about the causes of financial toxicity and what patients and families might do to prevent (or at least minimize) it. Generally speaking, most people have no idea that financial toxicity is something they need to think about, in large part because no one talks to them about it. So one of our biggest goals is to encourage and facilitate hard conversations in hopes of making things easier later on. 

Here are some of the most common causes of financial toxicity, according to our young adult community, and suggestions for managing it:

Medical bills

This is, hands down, the issue we see most often. Some of the worst crises we’ve seen have come from people being blindsided by medical bills and needing to be reactive, rather than proactive, in managing them. If you don’t know a $25,000 (or $5,000, or $100,000) bill is coming, then your options are likely limited: ignore it altogether, max out your credit card, or cash in your retirement savings…none of which are good for your financial or emotional health. But if you have a sense ahead of time that cancer is going to cost a lot, then there are some strategies that may help you deal with it.

Most people don’t realize that all hospitals are required to have a financial assistance program available to their patients. The parameters - in terms of who’s eligible and what’s available to them - vary by hospital, but it’s always a good idea to contact the program early on to learn more. Depending on your hospital, it may mean finding a patient advocate or financial navigator, or calling the billing department directly. Most of the time this information can be found on the hospital’s website, but it may take persistence. Don’t give up! Once you do get the right person on the phone and explain your circumstances, you may be able to get your bill reduced or eliminated entirely. In addition to the short-term relief, this may also protect your future financial health and credit.

Prescription co-pays

The costs of medication, during and after treatment, can be #1overwhelming. As a result, the scenarios we see most often are: a) the person skips the medication altogether, b) the person gets the prescription, but only takes it half as often as prescribed to reduce overall cost, or c) the person gets the prescription and maxes out their credit card to pay for it. All of these have long-term consequences on overall physical and/or financial health.

Thankfully, there are resources out there that will provide medications at a lower cost, or offer financial assistance to cover these costs. Needy Meds provides a drug discount card which can be presented at the pharmacy; it cannot be used in combination with insurance, but the discount with the card may be greater than the cost with insurance, so it’s definitely worth asking. The Pink Fund provides direct financial assistance to women undergoing treatment anywhere in the country, and the Ellie Fund is a wonderful resource for women in Massachusetts who need financial assistance. (Side note: Patient Advocate Foundation has a co-pay assistance fund for specific types of cancer, including breast cancer, but it is currently closed due to lack of funding.)

Finally, many pharmaceutical companies offer financial assistance programs of their own, and/or may offer their own drugs at a reduced cost. It’s worth calling them to find out!

Insurance

Understanding your insurance plan is critical – and can be confusing and overwhelming at the same time. An Explanation of Benefits (EOB) can be pages and pages long, medications can be billed differently depending on how they are administered (at home or in the hospital), and many hospitals bill separately for provider services and hospital services. On top of all of that, as high as 80% of medical bills can contain errors, due to the wrong billing code or other seemingly arbitrary issues. So, what’s a person to do?

It’s important to advocate for yourself or, if you can’t, find someone who can advocate for you. If a claim submitted to your insurance company gets denied, know that you can appeal it. Thankfully, organizations like Triage Cancer can help you make sense of all of this, including navigating the insurance system, choosing the right plan, and understanding the appeals process. 

Above all, navigating cancer--both financially and otherwise--requires a support community. No one should have to face a diagnosis and its impacts alone. If you are struggling financially as a result of cancer, are between the ages of 21 and 39, and are finished with treatment, please consider applying for a Samfund grant: https://expectmiraclesfoundation.org/samfund/