The battle for medicines that could change lives of cystic fibrosis patients; Cystic fibrosis is a progressive condition of the lungs and digestive system which can severely shorten people's lives. Here, Beth Clarke, 36, from Cardiff, shares her gruelling daily regime and explains why access to pioneering drugs is so difficult.
My morning routine takes two-and-ahalf hours of inhaled nebuliser solutions and physiotherapy.
The nebuliser solutions thin the stubborn, thick mucus that clogs my lungs and opens my airways.
I also take an inhaled antibiotic which "clobbers" the bacterial infection that calls my lungs its home.
To assist these nebulisers, I use a machine that exercises the airways, forcing air deep into the lungs and places I can't reach with a normal breath.
I also do self percussion which consists of me firmly tapping my chest.
These both help loosen the mucus and, in turn, clear it.
I often cough and splutter my way through the morning before I can reach for a cuppa.
Throughout the day I take 40-plus tablets, take medicines for my digestive system, use sinus washes and try to fit in 20 to 30 minutes of exercise (proven to be successful as a form of physiotherapy).
I also eat well - vital for weight management which many struggle with having cystic fibrosis - and I repeat my twoand-a-half hour physio and nebuliser routine in the evening.
As you can imagine, when you're dealing with the symptoms of cystic fibrosis such as shortness of breath, chest pain, sinus pain, fatigue and muscle aches (the list could go on) as well as managing such a vigorous daily regime, you don't have time for much else.
Despite all of this it is sometimes not enough and my chest can easily deteriorate.
When this happens I need to have a course of intravenous antibiotics for a fortnight at a time.
About eight years ago I had an operation to have a permanent port fitted into my arm which makes my veins easily accessible for these antibiotics.
On average I'm needing intravenous treatment at the hospital every six weeks.
Some of these antibiotics can bring nasty side effects including sickness, dizziness, fatigue and in severe cases can cause kidney failure.
I attend the All Wales Adult Cystic Fibrosis Centre at University Hospital Llandough. I receive incredible treatment and the staff are amazing. The Cystic Fibrosis Centre is facing its own financial hurdle - the ward is in desperate need of PS1.3m for refurbishment.
At the moment there are only seven beds for more than 350 patients - you can imagine what chaos that causes when waiting for a bed.
Sadly Wales is the only cystic fibrosis ward in the UK where patients are sharing a bathroom, which is alarming given the dangers of cross-infection.
I like to fundraise in my spare time and when I'm well enough, you can check out my efforts on Facebook and Twitter @berthasarmy We've raised more than PS17,000 in the past two years.
As a little girl, and still now in my adulthood, my mum and dad have stayed positive (a quality that I hope has rubbed off on me) and often talk about the day new treatments will be available that will dramatically change my life.
Well it appears that day is here, but Wales and the rest of the UK have hit a huge stumbling block.
Precision drugs such as Orkambi are deemed too expensive to provide and are not routinely available for cystic fibrosis patients like myself (despite it being licensed quite some time ago).
Until medications like Orkambi are actually in the palm of my hand, I have to stop myself from feeling hopeful. It's incredibly cruel.
A petition has been created with the Cystic Fibrosis Trust asking the Welsh Assembly to demand a resolution to ongoing discussions between health ser-vices in Wales and Vertex Pharmaceuticals.
If the petition collects 5,000 signatures before December 31, 2017, the topic will automatically be considered for debate in Welsh Assembly.
The petition only has 3,371 signatures so far, so time is running out. You don't have to live in Wales to sign it.
There's a closed group on Facebook called #UKNEEDSORKAMBI. Members include people with CF, family and friends of this with CF, CF Trust members etc who are tirelessly campaigning for the drug and are a pillar of strength.
This has been a very sad year and I have lost dear friends to this condition, a huge loss for so many.
I'm 36 years old and want to look forward to my future with my husband. I don't want my family and friends to be faced with another battle; a battle for these precision medicines that could so easily change my life and others with cystic fibrosis.
You can help them spread the message using hashtags #UKNEEDSORKAMBI and #Orkambinow | To sign the petition go to www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PETITIONID=1266
Beth Clarke, second from left with husband Lyndon and parents John and Michelle Morgan
Beth has to use a nebuliser, take 40-plus pills a day, and try to fit in exercise to help manage her condition
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|Publication:||South Wales Echo (Cardiff, Wales)|
|Date:||Dec 18, 2017|
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