This photo may look to many as just a photo of someone having an amazing night at a concert, but it is so much more than that.
The girl pictured, Becc Northam, has Cystic Fibrosis.
If you had asked her last year if she could ever attend a concert, stand for hours, screaming her lungs out, jumping or dancing around, she would have laughed in your face and told you there wasn’t a chance it was possible.
This photo was taken last Friday, and she was able to do all of those things, thanks to a medicine called Orkambi.
Becc was then heartbroken to come home to the devastating news that Orkambi has once again been rejected from the PBS listing, and the price tag on human life, around $260,000 per year, will remain.
Becc told News Of The Area, “It makes me feel like they personally couldn’t care less if Cystic Fibrosis patients live or die, because for some of us, that is what this drug is the difference between, life or death.”
Becc’s lung function has gone from thirty percent or less (she was too sick to even give a reading), to fifty eight percent, a number she hasn’t seen in years.
She has put on 15kg, attended almost one hundred percent of classes last semester, joined up to the gym, and felt she was finally able to enjoy her life.
Becc told News Of The Area, “I am terrified to think of what would have happened if I didn’t have Orkambi, would I even still be alive, or would my lungs have given up while I was waiting on a transplant list?”
“So we will have to speak LOUDER, because we will be heard.”
If you would like to sign Becc’s petition, offer your support and read more about her story, you can search for her on www.change.org and search for “Orkambi on the PBS”.
By Rachael VAUGHAN