MP’s Call For Orkambi For NI Cystic Fibrosis Sufferers


Down MP’s support the call for Cystic Fibrosis sufferers to have access to Vortex medication.

South Down Sinn Féin MP Chris Hazzard has called for cystic fibrosis drug Orkambi to be made available in the North of Ireland. 

The South Down MP was speaking after a meeting with the Department of Health said: “Orkambi and other drugs for the treatment of cystic fibrosis will now be available in England following a deal between the British government and the manufacturers of the drugs. 

Chris Hazzard MP concerned about CF sufferers not having access to a drug available in the rest of the UK.

“We now need to see these drugs made available to those living with cystic fibrosis in the north. 

“Orkambi is already available in the South of Ireland and now in England and the Department of Health must ensure that access to the treatment is made available to people with cystic fibrosis in the north immediately.   

“While this serious illness cannot be cured, Orkambi has been shown to significantly slow the rate of decline of lung function. 

“I have repeatedly called on the Department of Health in the north to ensure Orkambi be made available in the north. 

“The Department needs to ensure this happens as a matter of urgency in order to provide equal treatment to those with cystic fibrosis here.” 

Jim Shannon, Strangford MP, is calling for Vortex to be made available in NI.

Jim Shannon, MP for Strangford, has also called for the Vortex medication to be made available in NI for Cystic Fibrosis sufferers.

“Scotland already have access to this medication and now England & Wales have access to it also.  Northern Ireland do not have access to Vortex medication, and they should have as soon as possible.  This drug has been made available to all patients in England, specifically:

  • CF patients in England ages 2 years and older who have 2 copies of the F508del mutation in the cystic fibrosis transmembrane conductance regulation (CFTR) gene will have access to Orkambi (lumacaftor/ivacaftor)
  • CF patients ages 12 years and older who either have 2 copies of the F508del mutation or 1 copy of the F508del mutation and a copy of one of the other 14 licensed mutations will have access to Symkevi (tezacaftor/ivacaftor) in combination with ivacaftor
  • Expanded access to Kalydeco (ivacaftor) to include people ages 18 years and older who have the R117H mutation and those patients ages 12 months and older who have one of the 9 licensed gating mutations.
  • Access to any future indications of these medications.

“I have called for the Permanent Secretary of Health for NI on behalf of my constituent and for the worried families to set funds aside for the provision of and access to this drug for those with Cystic Fibrosis in NI which is needed now.

“Having been contacted by the mother of a child in Ballygowan and by grandparents of other CF sufferers, I will continue to fight and press for this drug which really does give a new quality of life not simply to the recipient but to entire families.”