Financial Wellness
For people living with CF and their families, life can be a never-ending series of "ifs." If I get sick, can I work? If I need this treatment, how do I afford it? If I lose my insurance, what happens next? It can feel really hard to get ahead, especially when things are constantly changing. As you consider your current financial situation, plan for the unexpected, or look ahead to the future, it’s important to remember that financial wellness isn’t a box you simply check off one day. It’s an ongoing journey where what it means to thrive — and the steps it takes to get there — is unique for each person.
Insurance Coverage
Getting, maintaining, and using health insurance for the CF care you need is challenging. Roughly one third of people with CF reported it was difficult to understand what they will have to pay for their CF care.
But as you navigate everything from networks and formularies to authorizations and denials, know that you are not alone. The CF Foundation offers many resources to help you build your knowledge, assess your unique situation, and feel empowered to make informed decisions.
- Connect with Compass: Get free, one-on-one support from a dedicated case manager who can help you navigate some of the toughest insurance challenges that may come with CF.
- Watch our Navigating CF series: Browse our on-demand educational videos presented by Compass to help you understand unique coverage issues people with CF may face.
- Read more about insurance: Dive deeper into specific insurance topics, such as Medicare,
Medicaid , claims and appeals, and more.
If you do not have health insurance, find out what your options are. You could qualify for savings that put low or no-cost plans in reach. Or you may be eligible for public health insurance like Medicaid or CHIP (the Children's Health Insurance Program).
If you have health insurance (for example, you are covered through an employer’s group plan or the
In the meantime, review how much you’re paying for medications, care visits, devices, and hospital stays. Are your providers in network? Have you met the criteria for covering a medication? Understanding your plan’s details can help you maximize its benefits. Additionally, financial assistance may be available through state or diagnosis-specific programs.
If you need help understanding the details of your plan, you can always reach out to Compass.
Medical Expenses
All those expenses for treatments, medications, care center visits, devices, and hospital stays can quickly add up. There may be resources available to you to help with your out-of-pocket costs for treatments. In fact, over three fourths of people with CF rely on additional resources to help pay for some aspect of their CF care.
- Connect with Compass: Get free, one-on-one support from a dedicated case manager who can help you find financial assistance.
- Search the CF Resource Database: Look for the support you need among hundreds of verified resources using this self-guided search tool.
A high medical bill can catch anyone off guard, but you have options if you think your bill isn’t correct or if you can’t pay it right away.
Start with the Explanation of Benefits (EOB) that is sent to you from your insurance company. Is your plan covering your services the way you thought? If not, you may have an option to appeal. Keep in mind an EOB may not reflect final out-of-pocket costs, so when the actual bill comes, review the statement carefully to make sure the charges are correct. If something doesn’t add up, speak up.
Ultimately, if everything checks out, but you just can’t pay a medical bill right now, contact the provider (like your hospital) as soon as possible and ask to speak with the billing, financial assistance, or patient experience office. There may be a way to reduce what you owe, set up a payment plan, or apply for financial assistance from the institution or other foundation grant programs. Asking is the first step.
Everyday Life Needs
There are certain factors in life that may not seem directly related to healthcare but can still have a significant impact on your health. This could include having plenty of nutritious food to eat, a stable place to live, consistent access to utilities like electricity or internet, and a reliable mode of transportation. These factors are sometimes called social determinants of health or health-related social needs, and they impact everyone. If you could use some help affording your health-related social needs, there are resources available.
- Connect with Compass: You may be eligible for programs like SNAP (the Supplemental Nutrition Assistance Program) or WIC (Special Supplemental Nutrition Program for Women, Infants, and Children) — a Compass case manager can explain your options and connect you with the right resources.
- Search the CF Resource Database: Search for assistance among hundreds of verified resources using this self-guided search tool.
- Watch our Navigating CF series: Browse our on-demand educational videos presented by Compass to learn more about health-related social needs and what you can do when these needs are not met.
It can be hard to ask for help, but figuring out what benefits you are eligible for can help you stretch your budget, and sometimes just applying can get you connected to additional help from local programs.
Get Help With Financial Challenges
Keep in mind that throughout your journey with CF, there will be times when your previous approaches no longer work for you. These transitions — such as receiving a new diagnosis, changing your coverage or career, aging with CF, or undergoing a transplant — can impact your level of care, insurance options, and income, which can mean big changes to your overall financial wellness.
But you are not alone. Your care team and CF Foundation Compass are here to help you navigate all the challenges that may come when living with CF. To get free, one-on-one assistance with a Compass case manager, you can call 844-COMPASS (844-266-7277) or email us at compass@cff.org.