My Orkambi First Dose

Hi, everyone!

On Saturday, August 15, 2015, a few hours before my sister gave birth to her first child!!!!), Orkambi arrived via Fedex.

My life partner videotaped me taking my first dose.

Orkambi arrived 1 month after the prescription was called into my pharmacy by my doctor. My insurance company, Cigna, asked for a preauthorization, and even after that, Cigna denied Orkambi. A letter of medical necessity was written.

I am so grateful to have this drug. I know there is no guarantee that it will work on me, but I am happy that so many are benefitting.

I have been waiting for a medication like this all my life. Many years ago my doctor began talking about the science behind it.

When I was born, the average life expectancy (rough estimate) for someone with CF was 16 years. I am now 31. I am at a healthy weight, and my lung function FEV1 is 75%.

CF at one point took up 8 hours of my day, 7 days a week. I was trying so hard to do everything my doctor asked me to do. I was overworking, and the stress was not good for my mental health (the most important thing!) so I reduced my workload to the essentials.

I am really proud of myself. I am also proud of all the doctors, scientists, researchers, trial patients, families, fund raisers, etc. who have taken charge of something incredibly challenging.

Sending love to all!