CF Ireland's response to decision on Kalydeco

CF Ireland Respone

Cystic Fibrosis Ireland (CFI) calls on the HSE and the drugs company vertex to agree a fair price for the ground breaking Cystic Fibrosis drug ‘Kalydeco’ as soon as possible.

 

Philip Watt, CEO of Cystic Fibrosis Ireland (CFI) calls on the HSE and the drugs company Vertex to agree a fair price for the ground breaking Cystic Fibrosis drug ‘Kalydeco’ as soon as possible. This follows the publication of the assessment (HTA) of Kalydeco that was published today by the NCPE/HSE (21 January 2012).

'While we accept the right of the HSE/NCPE to get as good a deal as possible on the price of this ground-breaking drug, our members will not accept significant delays in making this drug available. We would ask the HSE/NCPE and the drugs company Vertex to conclude negotiations as soon as possible.'

 

What is Kalydeco and why is it important?

  • Kalydeco for the treatment of cystic fibrosis in people ages 6 years and older who have at least one copy of the G551D mutation,
  • Kalydeco is the brand name and Ivacaftor is the generic name of the same drug
  • Kalydeco is the first drug that impacts on the underlying causes of CF in those with the G551D gene mutation.
  • Forbes called Kalydeco ‘The most important drug of 2012’
  • Kalydeco is currently reimbursed in the US, Canada, England, Germany and Scotland.
  • KALYDECO is one of the most important advances in the treatment of cystic fibrosis since the discovery of the CF gene in 1989. By treating the underlying cause of the disease in people with the G551D mutation, KALYDECO helps them breathe more easily, gain weight and resulted in significant improvements in quality of life
  • Estimated up to 4% CF population worldwide and 11% of CF population in Ireland- circa 120 people have G551D mutation
  • Kalydeco will be expensive because of the high research and development costs and because  there are comparatively few people that can benefit from this drug worldwide
 
 
To listen to Dr. Michael Barry of the National Centre for Pharmacoeconomics explaining the result on RTE Radio please click here.
 
To read a transcription of this interview, please click here.

RTE Prime Time feature on Kalydeco Tuesday 22nd January featuring interviews with Katie Murphy (CFI) Philip Watt (CFI) and Dr Michael Barry (NCPE). 

(From 21mins onwards)
 
 
 
Updated 23rd January 2013