Imagine your child is diagnosed with a life limiting condition that has no cure. The same condition that many years ago saw babies struggling to survive past infancy, a condition that even today still sees babies loosing their battle.
A condition that will slowly cause irreversible damage to their lungs, a condition that unless a cure is found will eventually and probably prematurely take your child’s last breath.
A condition that is currently only manageable by taking handfuls of pills, undergoing endless physio and being admitted for lengthy hospital admissions for IVs just to help fight infection and slow the decline.
Imagine living every day being faced with the real possibility that you could one day find yourself burying your child and living knowing that your child is slowly drowning on the inside.
For the parent of a child with cystic fibrosis these are the raw facts. It pains me to write this, it’s the harsh reality and it devastates me to think for us and families like us that it’s all too real.
As a parent of a child with CF you live everyday in the hope that there will be a cure or at the very least something to help slow the decline to enable them to live a long and carefree life, you hope and pray that with advances in medicine your child will be part of the lucky generation that sees an end to CF being incurable.
So imagine that following years and years of research and unsuccessful drugs trials, a wonder drug is made, Orkambi, a drug that has been proven to slow the decline in lung function by around 40%, that has been shown to cut hospital admissions and which can add years onto the average life expectancy for a person with CF.
A drug that you see being agreed and funded in countries throughout the world, this drug has been available to some for years, you have watched those in the US being afforded this drug, you have followed their progress and you hear tales of success and of massive improvements to the health of those fortunate enough to have access to this drug. A drug that is desperately needed for so many right now, that has been designed, perfected and is readily available……..although sadly only for some not for all.
You know this is a huge breakthrough, the drug is a precision medicine which treats the root cause and treats CF as opposed to just treating symptoms which is what you currently do day to day now.
Then you get told that wonder drug is not available to you and others like you, because it’s too expensive and because it was so new that when decisions were being made there weren’t enough statistics to prove its worth.
For the CF community this is reality and this is why on Monday 26th June 2017, the CF family nationwide will descend on the capital and various other locations throughout the UK to protest for negotiations to start to make this drug available for those that need it.
According to the 2014 UK Cystic Fibrosis Registry Report, there are 2,834 people in England, 243 people in Scotland, 118 people in Wales and 101 people in Northern Ireland who could stand to benefit from Orkambi, a total of 3,296 people and at £104,000 per year per patient we are not under any illusion that at Orkambi is incredibly expensive and with the NHS on its knees it is unsustainable.
This is why we need The manufacturer Vertex, the Government and the NHS to get together and talk and to make a deal. A deal was recently struck in Ireland which also included a deal for other precision medicines that are in the pipeline, so we know that vertex can and will move on price, we are hopeful that a deal can be agreed so those that need this drug now can have it.
Because of the different CF mutations my child has it means Orkambi isn’t suitable for him, although I have recently seen research to show that Orkambi has been used in his mutations in some countries. This Doesn’t mean I won’t stand alongside other CF families who desperately need this drug now; after all this precision medicine is hopefully the start of something big and life changing, unfortunately without Orkambi some of those that need it now may not make it to see that something if a deal cannot be reached.
For the sake of our children don’t put a price on their lives, make a deal so we have less pictures of our babies in hospital beds and more like this……
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