A life-changing medication for cystic fibrosis sufferers continues to be a major talking point across the UK, including Conwy county.

Dwygyfylchi mother Kim Roberts, who's two and a half year-old daughter, Ivy, suffers from cystic fibrosis, held a protest at Venue Cymru on Sunday to stress the need for Orkambi, the new medication.

The protest, which saw around 20 residents get involved, coincided with the Welsh Labour Party's visit to Llandudno, which included meetings at Venue Cymru.

She said: "The event was a success because we got the opportunity to talk to Vaughan Gethin and see where we are at in regards to access to Orkambi in Wales.

"We have also been in touch with Catherine Harris and Mark Drakeford since Sunday and I will ask them to continue supporting us."

Mrs Roberts said Mr Gethin had said Vertex, the company who made the drug, are not communicating with the Welsh Government.

Vertex put forward a proposal in February which the Welsh Government deemed to expensive. They put a counter offer forward which the company have rejected stating the funding was not enough for the research into future medicines.

Mrs Roberts is urging both parties to come to an agreement soon, to save countless lives which are being lost because of the illness on a daily basis.

She said: "People don’t have time to wait. CF is a progressive disease as our beautiful children grow older they will begin to get irreversible lung damage.

"If Orkambi is approved now this will not happen, it’s reaching people to late. To have a life changing drug like Orkambi available but then being told it’s to expensive you can’t have it is disgusting.

"My blood boils knowing how much a little pink tablet can change so many lives and allow people to breath easy and live normal healthy lives.

"I call upon Vertex and the Welsh Government to get around the table with one another, get into discussion and most of all get Orkambi approved in wales and England our loved ones don’t have the time to wait.

Following a debate in parliament last month Steve Brine MP, Parliamentary Under Secretary of State for Public Health and Primary Care, and Lord O’Shaughnessy, Parliamentary Under Secretary of State for Health (Lords) sent a letter to Vertex late last Friday. The letter outlined the need to continue negotiations on Orkambi.

A Vertex spokesperson said: “We are pleased the Government is in agreement that we urgently need to find a solution to get our medicines to cystic fibrosis patients as soon as possible and are encouraged we already have a date in the diary in the coming days to start a meaningful dialogue.

"As we previously said, negotiations over email are rarely productive so we are surprised to be asked to respond to a letter via the media that we have not yet received.

"We have responded to all requests for further information and look forward to discussing them with NHS England this week.

“We hope we can agree an approach with NHS England that benefits all eligible patients equally, as soon as possible. We call on the NHS to bring a positive and flexible approach in the best interest of CF patients.”