Denied by Insurance, CF Patient Finds Her Own Treatment
State: New York
Congressional District: NY04
Lung Disease, Rare Disease
Issues and Challenges
Keri has encountered: Access to Medicine, Insurance Issues, Invisible Illness
Never Give Up
My name is Keri, and I have Cystic Fibrosis a genetic disease that effects the Respiratory system as well as the Digestive System.
When you have CF you get countless lung infections, that need to be treated by antibiotics. One of the infections I had was resistant to antibiotics - it was called Acromobactor pneumonia. I have tried to treat this pneumonia orally, as well as IV . Unfortunately, it was always unsuccessful.
One treatment that was helpful for me was inhaled antibiotics. Inhalation of antibiotics is a good way to keep acromobactor manageable. Inhalation of antibiotics would go directly into my lungs, and though it wasn’t going to eradicate it, it was extremely helpful to keep me stable.
Unfortunately, the antibiotic that I needed for treatment is not FDA approved for inhalation. My insurance company failed to pay for the medication. The cancellation occurred without warning. I tried to appeal the insurance decision twice and lost. The insurance company would only pay if it was treated with an IV, which is so frustrating to me because they would rather pay for a hospital stay, then let me do my inhalation treatments at home.
I had to look into a alternative way to treat my bug, and felt as though I needed to be responsible for my own care. "Phage therapy" has been around for decades, it is a live bacteria that attacks resistant bacteria’s in the body. It has been proven to cure patients with resistant bugs.
I contacted a University with a lab that is testing phages with my infection. They agreed to test my sample to see if there’s a matching phage in the lab, to see if this treatment will work for me. I realize that this will be an uphill battle, but I am hopeful.
Negative things in life can happen , but I feel no matter how hard life gets, never give up.
My Motivation and Inspiration
I am motivated by fixing a problem in an unconventional way.
I am inspired by the 35,000 patients who have Cystic Fibrosis in the United States.