A friend recently asked me how I became an expert on managing my personal expenses and medical bills. First and foremost, while I do not consider myself an expert, living with cystic fibrosis for 42 years has taught me many things. I have been on and off Medicare/Medicaid, worked full-time jobs, graduated college, underwent two organ transplants, lost a job during the pandemic, got Medicaid while unemployed, and recently started a new full-time job. 

The following summarizes some of the tips I have learned that continue to help me gain better control and a sense of freedom in balancing life with CF and my finances:

1. Budget

Many hate to hear or see this word because of feelings such as “I cannot budget correctly,” or “budgeting is complicated,” or “I do not want to restrict how I spend my money.” I, too, am still guilty of this at times. A few years ago, I took a Dave Ramsey financial course at my local church, which really helped me understand how to create a budget plan. I applied what I learned into my monthly medical and personal expenses. Whether it’s done weekly, bi-weekly, or monthly, finding a budget length that works for you is so helpful. The internet has free templates or programs that are great to assist in budget planning. I use an Excel spreadsheet to track all of my expenses, current balances, credit limits, payment due dates, interest charges (if any), and minimum amounts due. You can also include a column with an estimated amount that you plan to spend annually to better estimate how much money you should set aside to cover your expenses.

2. Resources

I have a secret for you… there is a lot of free money available for patients who live with chronic illnesses — such as cystic fibrosis — who need assistance with medical expenses. Patient assistance programs, government assistance programs, private grants, public grants, pharmaceutical assistance programs, scholarships (for those in school or wanting to go back to school), and nonprofit organizations can all help with cost-of-living expenses or medical bills. The internet is your best friend! Research programs that best fit your needs. Also, reach out to your local CF clinic social worker or contact CF Foundation Compass to see if they can provide you with a list of resources. There are also grants for things like workout equipment/exercise classes, prescription drug coverage, and insurance co-pays, private insurance premiums reimbursement, AC air duct cleaning, and other services you may need. But, if you don’t ask your CF care team or do the research, you won’t be able to benefit from these resources.  

3. Insurance

I know, the last thing anyone wants to do is to deal with insurance and all the associated fine print. Trust me, I get it. But, with time, it gets easier to handle. There are many different policies to choose from and you will find the best option for you and your needs. It can take some time to learn what works best for you. Throughout the years, I had both HMO and PPO health insurance plans to fit my needs at different times.

For any of your providers that may be out-of-network, consider a plan that covers in- and out-of-network providers. Being that CF care is quite expensive, selecting a plan with a higher premium (your policy’s monthly payment), a low deductible, and an out-of-pocket maximum has made it easier for me to exceed my deductible and out-of-pocket maximum early in the year. Now, why is this a good thing? Because once these two limits are met, I will have $0 co-pays for the rest of the policy year. For prescription drug coverage, every insurance company has an online tool or document where you can check what tier your prescription drugs cost and if they are covered by the policy. 

Because I’m a frequent traveler, I selected a plan with coverage outside of my residential state. For travels outside of the U.S., my policy usually doesn’t provide coverage. However, I always purchase travel insurance, because (who am I kidding?) I don’t have $75,000 laying around to cover the costs of a medical flight and other medical emergency expenses!

4. Indemnities

If you are not on Medicare or Medicaid, an indemnity plan can work great! These plans work great because it helps cover living and medical expenses during hospitalizations or medical leave. I have one through my employer, which allows me to receive money for doctor’s visits, hospitalizations, outpatient treatments, surgeries, and other medical visits. Not only does the money I receive help with medical bills and expenses, but it can also be set aside for emergencies.

5. Savings account

“Save it for a rainy day” is what we always hear. But this is so true, and it took me learning the hard way to start doing this. Whether it’s saving for retirement (well you know, we are living longer now) or for medical expenses, having a savings account provides relief knowing I have a small cushion to rely on. I decided on a High Yield Savings Account, which pays at a higher interest rate for my savings to grow. Now I know what you are thinking, but you can start small. I started saving 10% of my paycheck until I was able to budget (make sure to include an amount for savings in your budget as well) an amount I could comfortably save monthly. This may look different for everyone, so do your research to see what savings goals and types of accounts work for you.

(Tip: If you have Medicare/Medicaid, check with your state regarding what their terms are regarding assets, monthly limits, and if they allow you to be able to have a shared savings account with a parent, spouse, partner, or other relative.)

If you are wondering why I did not mention credit cards, it’s plain and simple — why add more debt to the mix? While a credit card may seem like a short-term fix, I’ve found it can quickly become a long-term financial burden including costly expenses that can’t be paid off monthly. 

Just because we have CF does not mean we cannot have some type of financial freedom. Our care and needs will change over time, so it’s important to regularly review your financial plan and adjust it when needed. Changes will and do occur. It is OK — and often necessary — to make changes to suit your needs at any given time. 

 Interested in sharing your story? The CF Community Blog wants to hear from you.