There’s not just a Brexit ‘No Deal’ that’s deeply frustrating and harmful going on in the UK. Read on to find out how it’s affecting people like me with the chronic lung illness cystic fibrosis (CF)*…
A different version of No Deal is needlessly causing more suffering and costing hundreds of lives for people with CF. This has been going on for nearly four years and in that time over 250 CF people in the UK have succumbed to the disease including my very good friend Helen who left behind her 10 year old daughter.
This relates to the ongoing impasse taking place for the majority of the UK about us access to the life-changing drugs (Orkambi and Symkevi) from the pharmaceutical Vertex, who are in a long-term negotiation with our NHS and government to find a deal that all parties can accept.
These drugs have been made available to CF people in Ireland and Scotland and on a compassionate basis to others in Wales and England. CF friends who are on them have categorically told me how helpful they are to improve their lung function and energy levels while reducing mucus production (which causes our persistent coughing) and hospital admissions.
Here in England, the government are playing a passive role and the NHS won’t accept any deal that Vertex offer and Vertex won’t accept what the NHS are offering… hence the No Deal situation continues while we CF people suffer irreparable lung damage while this carrot dangles over us.
I doubt there’s ever been such a long series of ‘intensive’ meetings between different parties with zero action and positive results. If just one of these negotiators had a child with CF, they would have wrapped this up ages ago!
Both parties need to meet in the middle to get a deal but it appears that each party expects the other one to move more.
‘You make a living by what you get. You make a life by what you give.’ Winston Churchill
Re this famous quote, it appears the government, NHS England and Vertex in the UK are doing a lot of the former but precious little of the more meaningful latter.
In this four year period, my lung function has dipped and at 48, it’s not going to improve with the existing medication available to me. Also, I’m battling through on fumes of energy and hope, trying my hardest not to let my anger at this No Deal impasse do me any long-lasting emotional damage. Taking each breath is getting progressively harder for me and thousands like me.
How it feels to struggle with breath
As a reminder of how tough it is at times for people with CF to draw a breath, I wanted to promote the ‘Strawfie Campaign’ and quick exercise which I’d like all the ‘healthy’ readers to try for one minute:
- Take a narrow drinking straw and put it in your mouth (not the wide, flexible kind).
• Seal your lips around it
• Pinch your nose or use a nose clip
• Breathe in and out for 30 – 60 seconds
• Notice how much harder you have to work to draw breath?
Watch my speech at the Guernsey Sports Awards last year where I get the audience to do the Strawfie Challenge themselves (exercise starts at 20:00 in the video)
A matter of life and death
So when you hear the words ‘No Deal’ being mentioned in the news, spare a thought for the grim life and death struggle that myself and thousands of UK CF people are going through waiting for an access deal. The prize of a deal for us means a chance to breathe a bit easier and it gives us renewed hope that we may still have our tomorrows to go to school and university, get a job, get married, become parents, feel unbridled joy, sleep without coughing fits and exercise without pain.
What’s it going to be – Deal or No Deal? Life or death?
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
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* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.