Share your views & to support access to new therapies!

Calling all people with CF, parents, carers & family members - we want to hear your views!!

Please complete our survey by clicking HERE

 

Why is your participation so important?

As many of you are aware, two new possible treatment options for some people with CF (PWCF) are currently being assessed for both clinical and cost-effectiveness by the National Centre for Pharmacoeconomics (NCPE). 

  1. Orkambi, which seeks to correct the basic underlying genetic defect in 57% of people with CF in Ireland, people with two copies of F508del mutation. 
  2. The expanded use of Kalydeco for mutations:
        • G551D & other non-G551D gating mutations (expanded use to PWCF aged 2-5 years)
        • R117H (for PWCF over 18 years)

As with all new therapies, they must undergo Health Technology Assessments (HTA) which is

"A form of research that generates information about the clinical and cost-effectiveness of health technologies. These technologies can include drugs, medical devices, diagnostic techniques, surgical procedures and public health programmes such as cancer screening programmes. A Health Technology Assessment (HTA) may also look at the social, ethical, medicolegal and organisational aspects associated with use of a technology including its resource implications and budget impact.

The information provided by the HTA is used to inform health policy decisions regarding the investment in (or disinvestment from) these health technologies."

Cystic Fibrosis Ireland (CFI) are putting together a submission which will be made to the National Centre for Pharmacoeconomics (NCPE). This primary aim of this submission is to ensure the patient & family perspectives are formally taken into consideration during the Health Technology Assessment of the new therapies: Orkambi & Kalydeco (for expanded use).

The purpose of this survey is to gather information from both people with CF and their families about experiences & views of treatment options for cystic fibrosis & ultimately, 'what matters to you'.

It is so important that the voice of the CF community is heard loud and clear throughout, so please fill in the survey to have your say today.

This process and the arrival of similar innovative therapies in the future will challenge the HSE & Irish Government to look at what 'value for money' really means in the context of CF care. The whole community must speak up and make sure these decisions are guided by the unique knowledge and experience of people living with CF.

This survey has been shared by the Cystic Fibrosis Trust, UK, who have kindly allowed CFI to use & edit to questionnaire to meet the needs of the Irish CF population.

The survey will take approximately 15-20 minutes to complete & we ask you to provide as much detail as possible.

The results of this survey will be used to represent the views of the CF community & will primarily be used for advocacy purposes, and to inform policy decisions.

Your responses will be completely confidential and any published results will be entirely anonymous.

If you have any questions about the research, please contact Katie, Research & Development Officer, CFI at This email address is being protected from spambots. You need JavaScript enabled to view it. or locall 1890 311 211