5 Ways to Manage Cystic Fibrosis Costs

Written by Rebecca Farley | Reviewed by a licensed U.S. pharmacist | Posted January 06, 2021 | Updated February 02, 2023

Cystic fibrosis, like many chronic conditions, is expensive. Any condition that requires regular care -- doctor appointments, multiple medications, devices -- will be expensive, even with insurance. According to the Cystic Fibrosis Foundation (CFF), those diagnosed with CF take up to three oral medications and three respiratory medications per day. Even with low copays, costs will accumulate. Per the CFF, 45% of those with CF spend more than $5,000 out-of-pocket per year on healthcare costs. According to a Health System Tracker analysis, having cystic fibrosis increases the likelihood of persistently high healthcare costs by 243.

I’m incredibly lucky that my current insurance covers diabetic costs at 100%, but between cystic fibrosis and diabetes, that could all go away in a heartbeat if the ACA is repealed. Yesterday was a sad, stressful day watching the SCOTUS confirmation.

— Jen (@jd_eastin) October 27, 2020

Cystic fibrosis patients also frequently take emergent medications, ones that have just gone through clinical trials. These new drugs -- some of which, at least for CF, can really improve quality of life -- can cost in the hundreds of thousands of dollars a year, per a report from NBC news. Many drugs involved in CF treatment are routine; CF patients are often on antibiotics, which are cheap, to combat infections. The expensive ones are CFTR (cystic fibrosis transmembrane conductance regulator) potentiators. CFTR potentiators work on the very mutation protein that causes CF, and are painfully, ludicrously expensive. Kalydeco, a drug the FDA approved in 2012, costs over $400 per tablet. In 2019, the FDA approved a triple-combination therapy CFTR called Trikafta. In clinical trials, Trikafta has shown dramatic improvements in CF patients, but the price is absurd: eighty-four tablets will cost you over $20,000 in the U.S.

My son has cystic fibrosis. The bare minimum of what he needs to survive costs more than what I bring home as a public school teacher. Please tell me how I "rely on myself".

— Jimmy Stoverink (@coachstove) November 19, 2020

With this in mind, how do CF patients cut costs? The truth is, CF patients and their families have no choice but to become experts in cutting costs: They live their whole lives with a disease that ravages not only their body but their finances, too. Battling CF is a two-pronged attack: You must get treatment, and you must pay for treatment. Ahead, how some CF patients save money.

1.  Apply for state-sponsored aid

Some states run assistance programs specifically for cystic fibrosis. New York State had for a time an assistance program for people with cystic fibrosis. Andrew Cuomo allegedly cut the program from the state's budget. This does not mean other state-sponsored programs do not exist! California's Department of Health Care Services has a program for children diagnosed with CF among other chronic conditions. Ohio runs a program called the Children with Medical Handicaps program, which supports children with CF or similar conditions.

@NYGovCuomo Did you really cut the Adult Cystic Fibrosis Asistance Program from the state budget in the middle of a pandemic?? - I never post political but chances are you don’t even know about this disease or the costs involved. Shame on you.

— Lori Kempf (@Kempf4) July 14, 2020

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2. Establish a special needs trust

A father profiled in MarketWatch cited his special needs trust as his financial savior in the wake of CF bills. A special needs trust is a trust fund established to support an individual with a chronic condition likely to be expensive. It differs from a regular trust fund in that it cannot prevent the beneficiary from receiving government aid. (Traditionally, if you inherit a lot of money via a trust fund, you lose your eligibility for public services.) Special needs trusts can receive income from many sources, such as family members and legal settlements.

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3. Open an FSA or HSA

Flex spending accounts and health savings accounts are stop-gap solutions for people who cannot afford low-deductible health insurance plans. Flex spending accounts may not necessarily require a high-deductible health plan, but they also may not cover medical needs as fully as an HSA, which is specifically outfitted for health needs. Health savings accounts (HSA) are frequently part of an employer-backed health plan; they do require that you have a high-deductible insurance plan. In return, you can take portions of your pre-tax income and use it towards expenses like medical devices and copays.

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4. Use the Cystic Fibrosis Foundation's Compass financial guidance tool

The CFF (Cystic Fibrosis Foundation) knows more than anyone how expensive CF can be. Their service Compass provides financial planning advice for those diagnosed with CF, or, more realistically, to parents with a child recently diagnosed with CF.

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5. Enroll in a patient assistance program

Many pharmaceutical companies offer patient assistance programs that purport to help patients in need. Companies that offer CF medications are particularly attuned to the financial needs of cystic fibrosis. Vertex Pharmaceuticals, the company that manufactures Trikafta (as well as the CFTR potentiators Kalydeco, Symdeco, and Orkambi) offers a patient assistance program through which you may be able to obtain free medication. Research has shown that PAPs more often benefit people with insurance, but some may be able to help, especially with high-priced specialty medications. The Cystic Fibrosis Pharmacy, a pharmacy that specializes in CF medication and care, has a handy list of PAPs and other grant programs, which you can find here.

For example i have cystic fibrosis. My medication costs about $25000 a month. Thank god i have insurance that covers half of that, the manufacturer covers most of the rest(cuz guess what, their profit margin is crazy), and i get a grant from a charity to help with the rest.

— Sam Fausel (@Souljsam01) September 9, 2020

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Is cystic fibrosis a preexisting condition?

Yes. The Affordable Care Act protects people with preexisting conditions from insurance skullduggery; prior to the ACA, insurers could refuse to offer health insurance if you had a condition like CF. This is no longer the case. Still, given the costs of CF, many CF patients opt for a high-premium, low-deductible plan.

@SenSchumer my son was born with a genetic disease called Cystic Fibrosis. He takes life saving medicine that allows him to live a full, productive life. His one med costs $23,000/month. Without protection for pre-existing conditions, no on can afford that. #SaveOurHealthcare pic.twitter.com/UbI95TGadd

— Natalie (@vpofts) September 29, 2020

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Can I order CF medication from PharmacyChecker-accredited international pharmacies?

You can order some medications from PharmacyChecker-accredited international pharmacies. Certain specialty medications, especially CFTR potentiators, cannot travel across borders without risking damage to the product. PharmacyChecker-accredited pharmacies will carry items like antibiotics, inhalers, and some enzyme treatments. If you cannot order the medication from an accredited pharmacy, try using our U.S. Discount Card at your local pharmacy. Below, a couple of CF medications that PharmacyChecker can find at a lower price for you.

Comparing Cystic Fibrosis Medication Prices

Drug Strength Quantity U.S. Average Retail Price U.S. Discount Card Price Lowest PharmacyChecker-Accredited Pharmacy Price Greatest Percentage Savings
Tobi Podhaler (tobramycin) 28mg 224 capsules $10,592 $10,0317 $3,399.95 67%
Creon (pancrelipase) 3,600 units 90 capsules $1,122.75 N/A $864 23%

Sources: Average U.S. Retail Price estimated based on pricing on GoodRx.com. PharmacyChecker U.S. Discount Card Price based on availability at pharmacies near Brooklyn, New York. Lowest Accredited International Pharmacy Price based on prices listed on PharmacyChecker.com.

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Compare drug prices among reputable online pharmacies

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