Resources for Financial Support for Cystic Fibrosis Patients

Cystic fibrosis costs a lot, it adds up between the medication, hospitalizations, surgeries, and time off work. I know my family and I have experienced quite a lot of financial hardships due to my cystic fibrosis.

So how do I make it work financially?

I’m fortunate to be on my husband’s insurance, which is a decent plan. It covers 100% after the out-of-pocket is met. I always breathe a sigh of relief when we have met that maximum and I know we are done paying out-of-pocket for the year (assuming no out-of-network costs come up). Even so, we usually hit that maximum amount all at once, which is more than we make in a month. It can feel really overwhelming.

One of my medications alone without insurance costs $250,000+ a year. Between my monthly medications and one hospital stay (2 weeks long) costs can easily add up to over $75,000 per month! I’m thankful for our current insurance plan, but I wasn’t always as fortunate. And when I didn’t have this great of insurance, I had to find other ways to help lessen the financial burden.

Assistance programs that provide financial support for CF

Hospital assistance helped us tremendously when we had multiple larger hospital bills and our insurance didn’t cover it all. We had multiple bills for thousands of dollars each. I felt we would never get the debt paid off. Each time I went into the hospital I kept worrying about the impact it would have on us.

After the bills started arriving and I felt overwhelmed, I reached out to our local hospital billing department. I asked what financial assistance they offered. Each hospital is different, some forgive individual bills or lower the bill amount. Our local hospital has a charity assistance that forgives 50% of their bills and this can be renewed and used for up to a year. Patients can re-apply each year. This was the quickest way to help lower our biggest bills, when we seemed to be drowning in hospital debt. Seeing those shrink to more manageable amounts took a lot stress away.

I also apply for the all patient assistance programs for medications that are available, such as with Pulmozyme. For example: The Pulmozyme assistance co-pay card cost $30 and then they cover the rest (around $2,400 per month). This co-pay assistance card works for the entire year and any CF patient can apply for the medication co-pay assistance cards and programs. Check with your local CF care team to see which medications have assistance. These have helped to keep out-of-pocket costs down and lowered our co-pays.

Grants for medication costs

One source of assistance I have used multiple times over the last few years are the HealthWell Foundation grants. They offer two grants:

1. Cystic Fibrosis treatments grant: This includes many medications,  breathing treatments, and nebulizer med cups
2. CF Vitamin/Supplement grant: This includes many vitamins and even supplement drinks

It doesn’t cost anything to apply. Once accepted, the HealthWell grants are good for up to one year. The website has a list of medications covered and qualifications for grants. My pharmacy runs the HealthWell grant cards as a secondary insurance for me. I don’t have to deal reimbursement and the grants help with my co-pay and out-of-pocket costs, including my monthly cost of boost supplement drinks. Something as simple as nutritional supplement drinks can really add up. I’m thankful for these grants and will continue to use them in the future (as needed).

College assistance

Scholarships

There are many scholarships available from Boomer Esiason Foundation Scholarships, AbbVie CF Scholarship, Vertex CF Scholarship, and more.

Grants

Also, depending on the state and college, a person with CF may be considered disabled and be able to receive grants and assistance. I was able to receive over $4,500 from the Solvay Cares/AbbVie Scholarship (plus, another $6-8,000 from other non-CF scholarships).

I also was able to receive grants from a local Illinois disability office on my college campus. I did six years of college education and came out with less than 12,000 in student loans. There are also some college debt forgiveness programs for those too sick to work after college, but still have large amounts of college debt. My loan company contacted me and I applied to have them forgive the remaining $6,000 of college debt.

Disability

I'm not on disability, but I was still able to seek this option. I just have to provide W2 tax reports showing that didn't make enough part-time. I suggest reaching out to your loan companies if you are unable to work and see if this option is available. Often CF patients go to college with all the same hopes and plans as anyone else. The goal is to work in the future, but some CF patients are not that fortunate. Our disease progresses too fast and we struggle being able to pay back our student loans along with make enough money to live on.

Health Savings Accounts

Read the fine print and make sure you don't lose any of the money at the end of the year. Each HSA has different rules and savings. We decided to use the company's HSA because our amount rolls over at the end of the year and my husband's company matches a certain percent (which is almost unheard of). So we take advantage and contribute the maximum they match each paycheck. We don't touch it throughout the year and then have a lot of our needed amount when we have to pay our out-of-pocket costs at the beginning of each fiscal year (before we hit our maximum).

Is it ever enough?

Even with all this assistance, there will be struggles and financial burdens. Some insurance plans deny coverage for much-needed medication or supplies. Some even deny insurance coverage completely force patients to use certain pharmacies, hospitals, etc. I just do what I can with what I'm allowed to use.

Another option you can use is a CF program called Compass. They can help with coverage, assistance, applications for grants, and more! Their number is 844-COMPASS (844-266-7277). There is also a CF legal information hotline at 800-622-0385. Both of these are great resources that I have used in the past.

Thankful for financial support for cystic fibrosis

I’m thankful for all the above options as they have helped me in the past and still help me today. I know without this financial assistance I’d have a lot more debt and less access to medications needed. My family would struggle and my health would suffer, along with my family’s finances.

Thank you to all the companies, programs, and foundations that help with some of the hardships of living CF (especially financial). I’m thankful I found these options and that I can use them as needed. Don’t give up, constantly search for solutions, you are your best advocate.

Additional financial support for cystic fibrosis patients and families

Check out these articles as well "Financial Assistance Resources for CF Patients & Caregivers" to seek more resource options and "Health + Expenses" to learn more about health insurance terms and Kynsie's experience with health insurance plans.

Do you know of any other organizations that provide financial support for cystic fibrosis patients? Share in the comments below!