This proposal, which is open for a four-week consultation, has caused alarm among families who saw these drugs as crucial for improving their children's health.
While the recommendation won't affect current patients using these drugs, it could limit future access. Nice justifies the proposal by citing the need to evaluate cost-effectiveness and ensure taxpayer value.
The issue was raised in the House of Commons, highlighting the potential impact on CF patients who have seen significant improvements from these treatments.
Commons Leader Penny Mordaunt emphasized the importance of the drug approval process and mentioned possible access to drugs under specific circumstances even without Nice approval.
The Cystic Fibrosis Trust expressed disappointment with the recommendation and emphasized the need for access to these treatments.
Stormont's Department of Health noted that the draft guidance is not final, and feedback during the consultation will be considered before issuing the next draft. Final guidance from Nice is expected in mid-March 2024.