In the Spotlight

Edith (Edi) Seals 

In the Spotlight: Edi Seals
Edith Seals, who lost her sister to CF and was diagnosed with the disease as an adult, is one of more than 1,000 patients who have received help with co-payments and other forms of assistance from the Cystic Fibrosis Patient Assistance Foundation.

Edi Seals wasn’t going to let cystic fibrosis get in the way of sharing in the joy of her youngest grandchild’s arrival.

Last November, she and her husband drove from their home in Ringgold, Ga., to Tallahassee, Fla., to help her daughter and her family after the birth of their second child and watch as their grandson Jack became a big brother and learned the art of holding a newborn. 

Edi doubts she would have been there to help with baby diapers, baths and just general grandmotherly pride if it had not been for the Cystic Fibrosis Patient Assistance Foundation (CFPAF).

Getting Help to Pay for Critical Medications

Earlier in 2010, Edi’s insurance coverage had changed, and the co-pays for Pulmozyme and other medications she needed to control her cystic fibrosis suddenly became far beyond her means. “We simply could no longer afford the medications,” she says. “I would have had to go without them.” 

Fortunately, she learned about 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. Within a month after first applying, Edi was getting the assistance she needed from CFPAF. 

“They made it so easy and were helpful every step of the way,” she says. “They never make you feel rushed, and no question is too silly or too small.”

A few months ago, when Edi suffered a setback and was hospitalized with pneumonia, her doctors recommended Cayston, a powerful pulmonary antibiotic. Edi’s co-pay for Cayston would have topped $1,000 per month without financial assistance. Thanks to CFPAF, she was able to afford the medication and has now recovered. 

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 — 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.

“We are so proud that we can offset high co-payments for so many patients who would otherwise be unable to afford their costly medications,” says Maria Thomas, Director of CFPAF. “Our job is to ensure that CF patients tap into all of the possible available resources so they can lead healthy and productive lives.”

Edi is now encouraging others to apply for help with CFPAF. She is also excited about her own future. “I’ll now be able to see my grandchildren grow and develop, and my husband and I look forward to growing old together.”

Learn More

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

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Posted 07/01/2011