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Cystic Fibrosis facilities appeal launches today

An appeal to improve Wales' Cystic Fibrosis facilities will be launched today at Llandough Hospital.

An outpatient centre for CF patients was opened at the hospital last year - now the Cardiff and Vale Health Charity 'Make it Better' are raising funds for the next phase, which will transfer inpatient beds to one dedicated ward.

At the moment,the beds are spread around the hospital. The Llandough centre is the only facility for CF patients in Wales, with 300 people on the books.

You can find out more about Cystic Fibrosis by clicking here.


Welsh Government: 'Robust process' underway

The All Wales Medicines Strategy Group started the assessment of ivacaftor (Kalydeco) as soon as the drug company formally engaged with the appraisal process. This process is recognised to be robust and normally takes about 21 weeks to allow all parties, including patient organisations such as the Cystic Fibrosis Trust, to submit their comments. The final appraisal decision for Kalydeco is scheduled to be reached at a public meeting on 8th May 2013.

– Welsh Government spokesperson

Welsh patients 'left behind' over cystic fibrosis drug

People in Wales with a form of cystic fibrosis need the same access to a new 'life-changing' drug that people in England are getting, according to a charity. The Cystic Fibrosis Trust has called on the Welsh Government's Health Minister to speed up the approval process.

It's written a letter to Lesley Griffiths, saying that withholding a decision on funding Kalydeco (also known as Ivacaftor) here until May would cause 'considerable heartache' and 'agony' for families here. It has been available in England from 1 January 2013.

We are very concerned that, because the All Wales Medicines Strategy Group is not expected to come a decision until May, Welsh patients face a wait of at least four months, when the drug is freely available within the NHS England. A decision this week means Scottish patients are now also able to access Kalydeco from 1 March. This is causing considerable heartache and agony for families affected in Wales. The Cystic Fibrosis Trust would be appalled at a situation where people in Wales were denied a potentially life-changing treatment freely available to those in England and soon Scotland.

– Letter from Ed Owen, The Cystic Fibrosis Trust's Chief Executive