Letter to the Minister for Health
Leo Varadakar TD
We write to you to express our dismay that a statement has been made by the HSE to a Sunday newspaper which appears to state that a forthcoming groundbreaking drug ‘Orkambi’ will not be funded by the Irish government, irrespective of how good it is.
We seek a meeting with you to discuss this issue urgently.
This statement has caused considerable anxiety among the CF population in Ireland. Around 60% of people with CF in Ireland stand to benefit from this drug which is effective for the most common CF gene alteration in Ireland, which is Delta F508. It is the first drug to impact on the underlying cause of CF among people with two copies of Delta F508.
We welcome the subsequent statement made by you as Minsiter that this drug will be assessed and additional funds will be sought to fund the drug, if it is approved.
Cystic Fibrosis Ireland urges you to ensure that this drug is assessed fairly and without the prejudice that appears to be have been demonstrated on this occasion. The statement made by the HSE comes before a Rapid Review or Health Technology Assessment was undertaken by the National Centre for Pharma-economics (NCPE).
This drug is vital for people with CF in Ireland as:
- It is the first drug to impact on the underlying cause of CF for 60% of the CF population in Ireland.
- The drug has shown up to a 40% reduction in worsening of CF requiring hospital admissions
- It has shown a sustained increase in lung function
- It has shown a sustained increase in weight, an important issue in CF care
The drug has the potential to lenghten lives; increase quality of life and delay the need for lung transplantation. We know this from first hand as Irish patients have been part of the trials for this important drug.
CEO Cystic Fibrosis Ireland