Daily Mirror (Northern Ireland)
Hope for cystic fibrosis sufferers in drugs battle
Meds may be extended to Ulster Flu vaccine delay for NI kids ‘likely’
SENIOR figures in the Department of Health met yesterday to see if cystic fibrosis sufferers here can get life-extending drugs including Orkambi.
The move comes after NHS England struck a “landmark deal” with manufacturer Vertex Pharmaceuticals who also make Symkevi.
Nicole Adams said if she can get these drugs “my life and others with CF can change for the better”.
The 28-year-old from Newtownabbey, on the outskirts of North Belfast, added: “I’d no longer live in fear of what the future holds for me.
“I can do the things I used to do without a worry of becoming short of breath or even worse to becoming sick.
“For me I could maybe have the little family I’ve always dreamed of.”
A letter from NHS England to an MP in the country stated: “Around 5,000 people may take up these treatments but there is no cap on patient numbers and each and every patient in England who might benefit can now get these treatments free on the
NHS. Wales and Northern Ireland have stood alongside NHS England throughout these extended discussions.
“We have therefore inserted into the legal agreement that NHS England has negotiated a requirement that the company must make equivalent terms available to the NHS in Wales and Northern Ireland, should those jurisdictions wish to benefit from them.”
The Department of Health here has not yet issued a statement however, Permanent Secretary Richard Pengelly tweeted that he has “asked colleagues in the department and the Health and Social Care Board to initiate urgent discussions on the implications of this decision for Northern
Ireland”. He added: “Commissioning these drugs would, of course, have budgetary implications at a time of serious financial pressure for health and social care.”
Ulster Unionist MLA Robbie Butler welcomed the move, saying: “This is a hugely significant development and one which I suspect will have brought many of the campaigners across the UK to tears.
“For far too long now it has been totally unacceptable that people with cystic fibrosis were suffering, and in some cases coming to serious harm, when incredibly effective drugs were known to exist.
“Drugs such as Orkambi and Symkevi have been found to have life-changing benefits for patients in other countries. “Not only do they greatly improve quality of life but they have been found to also significantly reduce hospitalisations, which now the health service across England will soon benefit from.”
A DELAY to the flu vaccination programme for children in Northern Ireland is “likely”, the Public Health Agency has warned.
The majority of the Fluenz Tetra jab was expected next month but now that deadline may not be met.
The PHA said the “delay is due to issues relating to routine testing of the Fluenz Tetra nasal flu vaccine by the manufacturer and is not related to the safety or the efficacy of the vaccine”.
It added work is ongoing to “minimise potential disruption” to the flu immunisation programme in Northern Ireland as a result. Assistant director of public health at the PHA, Dr Gerry Waldron, said: “We have been exploring how to best use the available stock based on evidence and clinical advice, and taking into account projections on the revised delivery schedule, to maximise protection in the community.”