A Dwygyfylchi mother has continued her fight to have life saving medication made available on the NHS on Wales.
Kimberley Roberts, 30, has a three-year-old daughter Ivy who suffers from Cystic Fibrosis and has to take more than 30 tablets every day to treat it.
Kim Roberts and daughter Ivy
Orkambi is precision medicine that targets the route cause of the disease but is currently not available on the NHS in Wales.
Mrs Roberts has spent the past two years, with help from people all over the UK, to change this and make Orkambi available to the people that need it, like Ivy.
Last week she was in London joining others for yet another push to have Orkambi introduced in Wales.
The protest in London
She said: “At three years old cystic fibrosis already puts a huge emotional burden on Ivy.
"She takes over 30 tablets every day, every time she says, “not again mummy”. As a family we live in constant fear as we know how quickly things can change with the disease.
"Ivy’s Brother Archie is 5 years old and has started asking why Ivy has to do different things to him and other children, he also tells us he wants Ivy to take her medicine because he doesn’t want her to die.”
“Knowing there’s a drug Ivy could take which could add years to her life and allow her to live a better quality of life is destroying us, because the longer she is without access to Orkambi the quicker her health deteriorates causing irreversible damage.
"Our lives are on hold and will be until Ivy has access to Orkambi and the pipeline of other CF drugs.
"We won’t give up on our children’s future and it takes everything we have to fight for them.
"To all the parties involved I say, please stop the heartache, save lives, allow us and our daughter to live our lives without fear of the unknown.”
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The Cystic Fibrosis Trust is also urging NICE, NHS England and the pharmaceutical company Vertex to reach a deal on the cost of life transforming cystic fibrosis drugs and make them available on the NHS without delay.
The House of Commons Health & Social Committee Inquiry is heard evidence from Vertex Pharmaceuticals, NICE and NHS England regarding the ongoing and protracted negotiations for the drugs Orkambi and Symkevi to help move discussions forward and break the stalemate between the three parties recently.
It has been licensed for use for over three years, but a deal is yet to be struck that makes it available for patients in England on the NHS.
During that time, a third drug to treat the root cause of the condition, Symkevi, has been approved for use but is not available on the NHS.
David Ramsden, chief executive of the Cystic Fibrosis Trust, said: "All three parties – NICE, NHS England and Vertex - must reach a compromise and end the agonising three year wait for this these life-saving medicines.
"Each day that passes without a deal means the risk of more damage to the lives and prospects of thousands of children and adults with cystic fibrosis across the UK.
"This tragic situation must end. We hope the Committee can support efforts to find a deal.
"We know from countries around the world that it is possible to reach an agreement and we remain committed to supporting all parties to find a compromise that works.
"We don’t want to see people with cystic fibrosis once again be subjected to the anguish of the divisive public spat. No more excuses, we need action now."
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