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July 2011

A Call for Help Answered

A Call for Help Answered - July 2011 - Connections - CF Foundation 
Carrie Cox and her husband, Scott,
with their children (from left)
Easton (10), Kinzy (15), Riley (1) and Cameron (9). Riley and Cameron have cystic fibrosis and are receiving
assistance for their medications from
the Cystic Fibrosis Patient Assistance Foundation.

Carrie Cox rarely asks for help. The strongly independent mother of four does all the bookkeeping for her husband’s construction business in their small Utah town, while also staying on top of soccer and baseball games, scout meetings and the daily treatment regimens of two sons with cystic fibrosis.

For several years after Cameron, now 9, was diagnosed, Carrie convinced herself she could handle the financial challenges and navigate the health insurance maze alone. But after she learned that her youngest son, Riley, also had CF, Carrie began to feel overwhelmed. Given the family’s insurance, she was struggling to meet the 25 percent co-pay for her two sons’ enzymes and pulmonary medications. 

Realizing It’s OK to Ask for Help

“As CF moms, we try to take on everything ourselves,” she says. “But I finally realized it was OK to ask for help. It was just getting to be too much.” 

After talking with a therapist on her CF care team, Carrie discovered that there was a range of organizations that offered financial support for CF patients and their families. She first learned about the Patient Access Network (an independent non-profit that helps the underinsured access needed health care) and TOBI Care (a program run by Novartis, the maker of TOBI, to assist with co-pays). More recently, she discovered the Cystic Fibrosis Patient Assistance Foundation (CFPAF), a subsidiary of the Cystic Fibrosis Foundation that helps patients and their families living with cystic fibrosis afford the medications and devices they need to manage CF complications. What’s more, she learned that these organizations often work together to make sure patients get the help they need.

Last month, Carrie enrolled her two sons in CFPAF. This month Carrie began receiving assistance for the TOBI, Pulmozyme and Zenpep that Riley takes, along with the Cayston Cameron is taking.

“It’s a huge relief,” says Carrie. “The application was so simple I was able to pull everything together and ship it off in a day. And the staff is so helpful.  CF is a disease that requires a lot of management — sometimes I feel like I’m living by a timer, trying to stay on top of the boys’ treatments — so it was incredibly helpful that the staff would even make phone calls on our behalf. They do a lot of the footwork for you.”

How CFPAF Helps Patients and their Families

Launched in 2008, CFPAF has so far helped more than 1,000 people meet their co-pays and has dispensed more than $1.7 million in financial assistance through grants from pharmaceutical companies — and the assistance goes beyond co-pays. CFPAF has also helped more than 370 people get onto Social Security, and it has a team of legal experts who work with CFPAF to complete SSI and SSDI applications for patients who are likely to qualify for assistance. At times, CFPAF staff members can become patient advocates, cutting through complex insurance and legal issues.  And if CFPAF cannot help, the staff will direct people to organizations and programs that can.

“Our staff understands how hard it can be to pay for expensive CF treatments and manage the increasing complexity of the insurance world,” says Maria Thomas, Director of Patient Access at CFPAF. “We are proud that we have been able to help Carrie and her family, along with hundreds of others.”

Learn More

  • For more information about CFPAF, visit or call 1-888-315-4154.

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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.