A Helping Hand for the High Costs of CF Care
Chrystal says having her four-legged friends, Mona (left) and Maggie, has revolutionized her therapy compliance. “They never judge me for having really gross coughs or for having to take naps. They’re my therapy buddies.”
For Chrystal Sveom-Moldenhauer, 38, who has cystic fibrosis, the challenges of the disease are made a lot easier every day thanks to a loving support system led by her husband Lucas, her religious faith and the comfort of her two beloved standard poodles Maggie and Mona.
With his support, Chrystal says she was able to overcome the feelings of isolation that come with needing to do seven to eight hours of therapies and exercise each day to maintain her health. But when she found herself unable to keep up with the exorbitant costs of her CF therapies, she knew she had to seek outside help — and the Cystic Fibrosis Patient Assistance Foundation (CFPAF) was there to lend her a hand.
Learning How to Ask for Help
Chrystal was diagnosed with cystic fibrosis as a 3-month-old baby through a sweat test. That was over 38 years ago, and for decades she has managed her own care and paid for all of her out-of-pocket expenses — accumulating mounds of debt along the way.
“For the longest time, I resisted getting any financial assistance,” Chrystal says. “But eventually it just got to be too much. We were continuously finding ourselves on three to four different payment plans that were over $10,000 each. We were drowning.”
Chrystal told Meg Benefield, a social worker at the University of Minnesota’s CF care center, about her trouble meeting her out-of-pocket expenses. Meg advised her to contact the CF Foundation’s Patient Assistance Foundation, which, at the time, had just recently launched.
Chrystal’s call was answered by Maria Thomas.
About the CFPAF
Launched in 2008, the Cystic Fibrosis Patient Assistance Foundation is a nonprofit 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. CFPAF staff members can help families cut through complex insurance and legal issues, directing them to additional organizations and programs when needed.
For more information about CFPAF, visit www.cfpaf.org or call 1-888-315-4154.
“When I talked to Chrystal, she had just recently been released from the hospital and had been so ill that she couldn’t keep on top of everything — she didn’t know how she was going to continue her regimen,” recalls Maria, director of patient access programs at the Foundation. “She was in desperate need of her medication, so I expedited her application for support for immediate co-pay assistance.”
Chrystal has now been receiving help from the Patient Assistance Foundation for nearly four years. Funded by grants from pharmaceutical companies, the Patient Assistance Foundation is a nonprofit subsidiary of the Cystic Fibrosis Foundation that provides co-pay assistance to patients in need.
“The program is a lifesaver,” Chrystal says. “They made the application process easy, and the consistent, responsive care of the staff makes me feel I have a partner that I can count on in my battle with CF. I feel less alone and afraid thanks to them.”
Chrystal receives assistance for Cayston, Pulmozyme, Creon and Hypersal, which amounted to $3,000 of aid in January alone.
Her Hope for the Future
Earlier this year, Chrystal had a particularly tough doctor’s visit. Her lung function was the worst it had ever been, and soon she’d have to be put on the list for a lung transplant. She was sitting in the clinic overwhelmed with grief when a doctor walked over to share life-changing news with her: Kalydeco had just been approved by the FDA, and she was among the 4 percent of patients who would benefit from the groundbreaking new therapy.
“I was ecstatic. Within three days of starting Kalydeco I was coughing less and had so much more energy. Prior to its approval, I thought that I might have 10 years left to live, but now I could have 20, 30, or even more. I have to figure out what I want to do when I grow up,” she says with a laugh.
Her CF care center team directed her to Vertex Pharmaceuticals’ assistance program, which was able to bring her out-of-pocket expense for the expensive drug down to $0.
With the new therapy, and much of the financial burden of her treatments lifted off her shoulders, Chrystal says she has never been more excited for the future. “I’d like to travel around the country with Lucas, Maggie and Mona. I want to see the Grand Canyon, and do some ranching out West — maybe even have a baby. There’s a lot that I allow myself to hope for now.”
July 2013 Update:
Chrystal and her husband recently welcomed a baby girl, Hadassah Joy. Both mom and baby are doing well and one of the poodles has been deemed the “hairy godmother.”