Financial Assistance Resources for Cystic Fibrosis Patients and Caregivers
Reviewed by: HU Medical Review Board | Last reviewed: September 2019 | Last updated: March 2021
Even with insurance, the costs for cystic fibrosis care can be astronomical. Just a few of the many costs that are not covered by insurance include prescription co-payments, prescriptions, and procedures uncovered by insurance, nutritional supplements, and vitamins, travel to and from CF care clinics far from home, relocation for transplant services, and living expenses if the person with CF is unable to work.
Many non-profits have stepped into this expensive void to support families and individuals cope with CF bills. Funds are often paid directly to the doctors, vendors, and businesses providing care rather than to the family. Here are a few of the biggest players.
Financial support for cystic fibrosis patients
Cystic Fibrosis Foundation: Compass
The Cystic Fibrosis Foundation's patient assistance program, Compass, offers personalized service to help with the insurance, financial, legal, and other issues faced by anyone with cystic fibrosis. While Compass doesn’t give out money, it does conduct assessments of insurance benefits during open enrollment and connects patients to insurance providers. It can also connect people with CF to community organizations and government programs that will help pay for rent, utilities, food, home repairs, car payments, and pharmaceutical assistance programs that lower the costs of specific drugs.1
In exchange for participating in a clinical trial, pharmaceutical and medical device companies offer free medications, tests, equipment, and procedures connected to their trial. This can be a good way to access drugs before the U.S. Food & Drug Administration approves the medication for widespread use. Not all clinical trials are available at every CF care center. Find a clinical trial here.
Boomer Esiason Foundation
The Boomer Esiason Foundation offers several types of financial support to patients with cystic fibrosis including:2
- Grants for CF lung transplant recipients to cover travel and relocation costs
- Disaster relief for families in the CF community
- Hospital gift/goodie bags for people with CF
Claire’s Place Foundation
Founded by Claire Wineland, an activist, author, and inspirational speaker who had CF, Claire’s Place Foundation offers grants for families with children that are experiencing a hospital stay of at least 14 consecutive days or have experienced it within the last calendar year. These funds can be used to help with the mortgage, rent, utilities, or any other basic necessities. People with CF can apply by asking their hospital workers to send a letter of referral on their behalf. Amounts awarded vary by need and available funds.2
Cystic Fibrosis Lifestyle Foundation
The CF Lifestyle Foundation offers $500 grants to pay for physical activities such as lessons in swimming, horseback riding, or rock climbing; golf and sports team fees; classes in yoga, dance, or martial arts; gym memberships, and sports camps.
HealthWell offers two kinds of grants. The first provides up to $15,000 to cover CF prescription medicine copayments for households 500% of the federal poverty level. The second provides up to $2,000 to cover the costs of nutritional supplements, probiotics, and vitamins. Qualifying incomes are adjusted for household size and areas with a high cost of living. These grants can be used in conjunction with manufacturer assistance programs.
United Healthcare Children’s Foundation
This foundation offers single grants of up to $5,000 that must be used within 60 days, with a lifetime maximum of $10,000. Funds are paid directly to the health care professional to whom patients owe money.
Geographically targeted programs
A CF social worker can assist with finding additional financial assistance programs near you. Many smaller organizations award money for the care of CF patients living in a specific city, state or region. In addition, many states run cystic fibrosis-specific financial assistance funds to help support the costs of care.
For more information
The website NeedyMeds provides an up-to-date list with dozens of assistance programs directed to people who have been diagnosed with cystic fibrosis. NeedyMeds also offers a comprehensive list of pharmaceutical patient assistance programs and discount cards.3