Cystic Fibrosis Awareness Month: Finding Help with Medication Costs

Last Updated on May 19, 2026

May is Cystic Fibrosis Awareness Month. Approximately 40,000 people in the United States are living with cystic fibrosis (CF), with about 1,000 new cases diagnosed each year. CF is a progressive, genetic disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other organs — leading to severe respiratory and digestive problems that require lifelong treatment. Thanks to advances in care, the median predicted survival age has climbed from 37 years in 2010 to 44 years in 2023 — but those treatments come at an extraordinary cost.

At NeedyMeds, we maintain a free database of patient assistance programs, discount options, and financial resources that can help reduce your out-of-pocket costs. Here’s a guide to finding help for commonly prescribed cystic fibrosis medications.


CFTR Modulators: A Breakthrough in CF Treatment

CFTR modulators are the most significant advance in cystic fibrosis treatment in decades. These medications target the underlying cause of CF by improving the function of the defective CFTR protein, rather than just treating symptoms. For eligible patients, CFTR modulators have dramatically improved lung function, reduced flares, and transformed the outlook for living with CF. However, they are also among the most expensive prescription medications in the United States.

Trikafta (elexacaftor/tezacaftor/ivacaftor) — The first triple-combination CFTR modulator, approved in 2019. Trikafta is eligible for approximately 90% of people with CF and has been called the most significant breakthrough in CF care. It has been shown to dramatically improve lung function and reduce hospitalizations. Without insurance, Trikafta’s annual list price exceeds $300,000, making patient assistance programs essential for many families.

Kalydeco (ivacaftor) — The first FDA-approved CFTR modulator (2012), for patients with specific gating mutations. While it serves a smaller patient population than Trikafta, it remains an important option for those with eligible mutations.

Orkambi (lumacaftor/ivacaftor) — An earlier CFTR modulator for patients homozygous for the F508del mutation. Some patients remain on Orkambi, particularly those who transitioned to it before Trikafta became available.


Airway Clearance Medications: Keeping the Lungs Clear

Daily airway clearance is a cornerstone of CF management. These medications help thin and clear the thick mucus that builds up in the lungs, reducing the risk of infections and preserving lung function.

Pulmozyme (dornase alfa) — An inhaled medication that breaks down DNA in mucus, making it thinner and easier to clear from the airways. Pulmozyme is one of the most widely used CF-specific therapies and is typically administered daily via nebulizer.


Inhaled Antibiotics: Fighting Chronic Lung Infections

Chronic lung infections — especially Pseudomonas aeruginosa — are a major source of morbidity in CF. Inhaled antibiotics deliver medication directly to the lungs, helping control infections while minimizing systemic side effects.

TOBI (tobramycin inhalation solution) — One of the most commonly prescribed inhaled antibiotics for CF patients with chronic Pseudomonas infections. TOBI is typically used in alternating 28-day on/off cycles.

Cayston (aztreonam inhalation solution) — Another inhaled antibiotic used to treat chronic Pseudomonas infection in CF patients, often used as an alternative or in rotation with TOBI.


Pancreatic Enzyme Replacement: Supporting Digestion

About 90% of people with CF have pancreatic insufficiency, meaning their pancreas cannot produce enough enzymes to properly digest food. Pancreatic enzyme replacement therapy (PERT) is essential for absorbing nutrients and maintaining healthy weight — and it’s a medication that must be taken with every meal and snack, every day.

Creon (pancrelipase) — The most widely prescribed pancreatic enzyme replacement brand for CF patients.

Zenpep (pancrelipase) — Another commonly prescribed PERT option.

Pancreaze (pancrelipase) — An additional PERT formulation.

Ultresa (pancrelipase) — Another available PERT option.


Financial Assistance Programs for CF Patients

Beyond medication-specific programs, dozens of organizations offer broader financial support for people living with cystic fibrosis — from copay assistance and living expenses to scholarships, fitness grants, and transplant support.

Diagnosis-Based Assistance Programs

NeedyMeds maintains a dedicated list of more than 50 organizations that provide financial assistance specifically for CF patients.

Here are a few programs to know about:

HealthWell Foundation — Cystic Fibrosis Treatments Fund — Provides financial assistance for insurance co-payments and premiums related to CF treatments.

Breathe Believe — Provides financial assistance to individuals diagnosed with cystic fibrosis.

Cystic Dreams Fund — Provides financial assistance to individuals with cystic fibrosis.

Breathe for Bea Foundation — Provides assistance to individuals diagnosed with cystic fibrosis.

Live2Thrive — Provides free shipments of vitamins and supplements to individuals with cystic fibrosis — an important resource given that nutritional supplementation is a key part of CF care.


More Ways NeedyMeds Can Help

Our resources go beyond what’s listed here. Use these tools to find additional assistance:

  • Search for any medication: Use our drug search on the NeedyMeds homepage to find programs for medications not listed above
  • Search by diagnosis: Find condition-specific assistance programs at our program search page
  • Free drug discount card: Our NeedyMeds Drug Discount Card can save you up to 80% on prescriptions at participating pharmacies
  • Call our helpline: Speak with a trained volunteer who can help you navigate your options at 1-800-503-6897

Living with cystic fibrosis means managing a complex daily treatment regimen — and the financial burden shouldn’t be part of that struggle. This Cystic Fibrosis Awareness Month, take a few minutes to explore the resources available to you. You might be surprised at how much help is out there.

All NeedyMeds resources are free to use. We’re a 501(c)(3) nonprofit organization dedicated to helping people afford their medications and healthcare costs.

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