Food Help for Cystic Fibrosis

~40,000 Americans live with cystic fibrosis (CF Foundation). Nutritional needs are unique: high-calorie / high-fat diet to compensate for malabsorption + PERT pancreatic enzymes + extra salt + $$$$ Trikafta. This page lists resources: CFF, copay programs, SSI/SSDI, school 504 plans, fertility considerations.

1. Cystic Fibrosis Foundation (CFF)

• CFF — cff.org. Line: 1-800-FIGHT-CF (1-800-344-4823). Main CF org with research + advocacy + family support.
• CFF Compass — free caseworkers. Help with insurance, copays, resources.
• CFF Patient Assistance Foundation — patient grants for financial hardship. Apply via social worker.
• CFF accredited care centers — ~140 centers in US. Multidisciplinary teams (MD, nurse, RD dietitian, RT, social worker).
• Local CFF chapters — events + community support

2. Trikafta / CFTR modulators — affordability

Trikafta (Vertex) costs ~$322,000/year. Nearly all CF patients (~90%) are eligible. Multiple programs reduce costs:

• Vertex GPS (Guidance & Patient Support) — vertexgps.com. Comprehensive program — copay assistance, free meds for uninsured, insurance navigation.
• Vertex Patient Assistance — free Trikafta for uninsured or low-income
• CFF Compass — navigates copay program maze
• Other modulators — Kalydeco, Symdeko, Orkambi also via Vertex GPS
• Medicaid — covers Trikafta in all states with prescription + medical criteria
• Patient Advocate Foundation Co-Pay Relief — copays.org

3. SSI/SSDI — CF qualifies

Under SSA Listing 3.04 (Cystic Fibrosis), CF qualifies for SSDI/SSI:

• 3.04(A) — FEV1 (lung function) below specified level
• 3.04(B) — episodes of bronchitis / pneumonia / hemoptysis / respiratory failure
• 3.04(C) — persistent pulmonary infection
• 3.04(D) — spontaneous pneumothorax requiring chest tube
• 3.04(E) — malabsorption + weight loss / failure to thrive
• Compassionate Allowances — severe CF (post-lung transplant, rapidly progressing) processes in 1-3 months
• Childhood SSI — CF in children often qualifies (~$943/mo to family)

4. CF diet — high-calorie + high-fat

CF causes nutrient malabsorption — patients need 110-200% of typical calories + HIGH fat to maintain healthy weight.

• High-calorie — adults: 3,000-4,500 kcal/day. Kids: up to 200% of typical age recs.
• High-fat (35-40% calories) — olive oil, avocado, nuts, butter, full-fat dairy, fatty fish, fried OK
• High-protein — 15-20% calories. Chicken, fish, eggs, beans, dairy.
• ADEK vitamins — fat-soluble. CF malabsorption requires special CF-formulated supplements (AquADEKs, SourceCF).
• Extra salt — CF causes high sodium loss in sweat. Especially hot climates / exercise.
• Calorie-dense snacks — peanut butter + crackers, cheese + crackers, nuts, smoothies with added cream

5. PERT — Pancreatic Enzyme Replacement

• PERT essential — ~85% CF have pancreatic insufficiency. Without PERT, no fat + vitamin + protein absorption.
• Brands — Creon, Zenpep, Pancreaze, Pertzye, Viokace
• Cost — $200-1,500/mo uninsured. Covered by Medicaid + insurance.
• Manufacturer copay programs — AbbVie myAbbVie Assist (Creon), Allergan Patient Assistance
• Take with every meal — and significant snack. Adjust dose based on size + fat content.
• NeedyMeds — needymeds.org

6. SNAP — high caloric needs

• Larger SNAP allotment with SSI/SSDI — medical deduction reduces countable income, increases benefit
• Auto-cat eligibility in BBCE states — receiving SSI or Medicaid
• Kids with CF + WIC — WIC formula + fortified cereals
• High-calorie EBT food — butter, olive oil, peanut butter, full-fat dairy, skin-on chicken, salmon
• Nutritional supplements — PediaSure, Boost Plus, Ensure Plus are EBT-eligible. Medicaid-covered if prescribed.
• Scandishake / Scandishake Mix — high-cal mix prescribed. Insurance-covered.

7. G-tube — overnight feeding

• G-tube / J-tube common in CF — ~25% CF adolescents have G-tube for calorie boost. Usually overnight during sleep.
• Formula — Boost Plus, Compleat, Nutren — Medicaid + insurance covered with prescription
• Pumps + supplies — covered as DME
• Coram Specialty Infusion — home delivery of formula + supplies

8. Kids with CF — IEP / 504

• 504 Plan — CF qualifies as disability. School must allow frequent snacks + water + bathroom + PERT with all meals.
• School meals with modifications — NSLP/SBP must modify for CF medical needs (high-cal options, no allergens, etc.)
• Field trips + camp — 504 guarantees accommodations + meds. CFF Camp programs.
• P-EBT (school meal replacement) — some states still

Need help today?

• CFF — 1-800-FIGHT-CF (1-800-344-4823)
• CFF Compass — cff.org/compass — free caseworkers
• Vertex GPS (Trikafta) — vertexgps.com
• Your CF care center — social worker is best first line
• 211 — mention "cystic fibrosis"

Related resources

• For disabled →
• For children →
• For Medicaid →

Versión en español →

Last updated 2026-04-30. Feed America Inc. (EIN 92-1761881).