Advocacy News

Advocacy News

Medical ID Cards
Friday, 18 November 2016
article thumbnailMedical ID Cards Medical ID Cards are available from CFI. Simply download the application form here or call the office to request one, return it, and we will get the card back to you within 2 weeks. You may find one useful in the following situations: Travel Abroad Backpacking for extended periods In emergencies To have parent contact details...
article thumbnailMedical Card Review Process – Recent Announcement CF Ireland made a submission in June 2014 to advocate for medical card eligibility on the basis of medical need, and for people with CF to be included in this cohort based on their lifelong progressive illness. Further to this submission, we were invited to attend focus groups with other patient...
Long-Term Illness Book Update
Monday, 01 December 2014
article thumbnailLong-Term Illness Book Update CFI made a submission on 'CF and the Long-Term Illness scheme' in April 2014. The purpose of this submission was to highlight the difficulties some members were experiencing in accessing certain items and medications through the LTI scheme. Clarification from the HSE on what drugs are currently available to PWCF...
CFI Submission on Water Charges
Thursday, 06 November 2014
article thumbnailCFI Submission on Water Charges CFI recently (August 2014) made a submission to the Commission on Energy Regulation on the Economic Regulation of the Public Water Service Sector. The purpose of the submission was to highlight the additional strain which will be placed on people with Cystic Fibrosis (PWCF) and the households in which they reside...
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As expected, both Orkambi and Kalydeco (for the treatment of children with CF aged 2 years and older) will be subject to a full review by the National Centre for Pharma Economics (NCPE) in Ireland. This is normal for such drugs. This process includes a Health Technology Assessment (HTA) that may take up to 90 working days. We will let you know the outcome of these two reviews as soon as we hear.

We thank  everyone who responded to our recent survey – we received almost 500 responses which is an indication in itself how important this issue is  to our members. CFI is currently finalising our report which will include information drawn from this survey.

In the meantime, Minister for Health, Leo Varadkar TD has agreed to meet with Cystic Fibrosis Ireland following our request for a meeting before Christmas. This will take place before the end of January. CFI welcomes this opportunity to discuss with the Minister issues such as access to new and innovative therapies as well as other key CF related issues including staffing levels in hospitals and investment in key CF centres.

Many thanks to all our members for their support to date.

Philip Watt

CEO Cystic Fibrosis Ireland