65 Roses day Orkambi Vlog special:
Imagine your friends as a kid, then imagine being told your not allowed to play within 3m of each other after being friends in the hospital waiting room for years, all because you all share the same condition.
Fortunately for medical research a breakthrough was discovered that people with CF share bugs and potentially kill each other with intimate exposure.
Skip forward over 20 years and we are at the brink of another life changing medical breakthrough. Orkambi has the potential to change thousands of lives and raise the bar again for the cystic fibrosis lifestyle.
Luckily enough I crossed paths with one of my childhood hospital mates a little while back and thanks to technology we can now chat at anytime without risking our health.
Recently we both did a trial for a drug that is currently over $200,000 a year for people woth cystic fibrosis and that is what has brought us here today in this Vlog.
Blake and I continued the medication and believe everybody should be able to afford a drug that has the potential to change thier expected life, and not for an unaffordable price.
We agreed to risk our own lives and break quarantine CF law to make a statement to those who are in charge of this reasearch and medication to provoke thier intentions of placing it on the pbs for all sufferers to have the same opportunity we have had.
Its time for the gorvernment to wake up and smell the roses. 🌹
Vlog link below: