March 31, 2020 Blogs

We had to put most medical costs on my credit card.

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.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.