Mid Ulster Council is to write to health chiefs highlighting concerns that people with Cystic Fibrosis have in accessing drugs.
They point out to Secretary of State for Health, Jeremy Hunt MP, and Richard Pengelly, Permanent Secretary Department of Health, that sufferers are “greatly disadvantaged”, as they are unable to access the drug Orkambi and other drugs.
SDLP Councillor Sharon McAleer tabled a notice of motion at the monthly meeting, calling for a “resolution to overcome this health inequality.”
Speaking after the meeting she said: “I am delighted that the motion I raised in Council has passed and it’s important to me that we raise an awareness of the condition Cystic Fibrosis that so many people live with daily.
“By passing the motion Mid Ulster Council have recognised that people with Cystic Fibrosis in Northern Ireland are greatly disadvantaged due to the lack of resolution to allow access to the precision drug Orkambi and other drugs. Our neighbours in the Republic of Ireland and several other countries have access to Orkambi and other drugs which improves and extends the lives of a high percentage of people who have the inherited condition Cystic Fibrosis.
“Council will now write to the Secretary of State for Health and in the absence of a Northern Ireland Health Minister, the Department of Health Permanent Secretary, and express our concerns stating this.
“There must be a resolution of the ongoing negotiations between Vertex Pharmaceuticals the drug’s manufacturer and the Health and Social Care Northern Ireland. These negotiations have been going on nearly three years and now it’s time for results.”