We’re so pleased to be one of Stage’s charity partners and look forward to watching this incredible resource grow and reach the women who need it most. Like Expect Miracles Foundation, which is dedicated to creating both a better today and a brighter tomorrow for those facing a diagnosis, Stage is committed to providing thoughtful, daily support for the cancer community.
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 $3 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:
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.
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!
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. That's why we're proud to do this work--offering financial assistance, education, and advocacy for people impacted by cancer--and grateful for the opportunity to be able to partner with organizations like Stage. The more we work together to remind the cancer community that they are not alone, and that we understand their struggles, the more we can accomplish.
This is exactly what happened to me!! I get bills out of nowhere! They are the percentage that my insurance doesn’t pay for but it’s added up to thousands and thousands over the time I’ve had cancer. I’m on stage 4 now and don’t know what yo do. I can’t work, I’m on disability. Any advice?
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