My name is Jennifer Hepworth and I am a mother from Layton, Utah. My daughter Penny lives with cystic fibrosis. When she was 3 weeks old she began taking pancreatic enzymes every time she ate. At her young age, her small dose was about $800/month but increased to about $4,000 by the time she was able to stop taking them at age 6. This is the reality of life for kids with cystic fibrosis.
At 5 weeks old she began an inhaled drug that she’s expected to take for the rest of her life. That drug is about $3,500 per month. Two weeks prior to Penny’s second birthday, the FDA approved a drug called Kalydeco. This drug is $300,000 per year. She will be on it until she becomes eligible for a new drug called Trikafta that carries a price tag of $311,000.
Kalydeco has been a true miracle. She has recently been able to beat a cold without antibiotic intervention. She goes to school with limited precautions. Her lung function is incredible at 122%. She hasn’t been hospitalized since she began taking it. The craziest “side effect” is that her once thought-to-be-dead pancreas is working again. It’s cut her pill consumption from 25 per day to three per day.
But Kalydeco’s price tag is huge. We have a high deductible health care plan –– like most families with high health care costs. Last year we had to put most medical expenses on my credit card. This isn’t a financially sustainable way to keep my family healthy but it’s our only option right now.
We hope for a better future in regards to drug prices. My daughter needs these medications, and we need them to be affordable.