‘Do we decide who lives based on economics?’ asks CF patient
“I have not had the opportunity to see if it would benefit me,” he says.
Michael, who has cystic fibrosis (CF), lost a sister to the disease almost 20 years ago when she was just 29.
He has posted a poignant open letter to Health Minister Simon Harris on his Facebook page in which he asks: “Have you ever struggled to catch your breath, have you ever vomited on the cough, have you ever burst blood vessels from coughing?
“Do you know how difficult it is to look at your young son and wonder if you will be around for him, to see him go to college and get married?
“Have you ever wondered whether the infection you have may be your last?
“Does Irish society now decide who lives and dies solely on economics?”
Michael, from Rochestown in Cork, is among the many voices in the CF community calling on the Government to find a way to fund Orkambi, a drug which the National Centre for Pharmacoeconomic Evaluation (NCPE) has already ruled is not cost-effective, at a reported cost of approximately €159,000 per patient per annum.
The NCPE recommended that it not be reimbursed by the State and the HSE’s drugs committee, which has the final say, is set to follow suit, according to recent news reports.
Cystic Fibrosis Ireland has called on the health minister to use his ministerial powers to intervene to ensure that Orkambi is made available in Ireland for the 550 patients they say stand to benefit from this life-lengthening drug, which treats the underlying cause of the disease, and has been shown to reduce hospitalisations by up to 40%.
Last week, the minister said he had written to his counterparts in England, Scotland, Canada and Australia asking them to collaborate to try and get pharmaceutical company Vertex to make Orkambi available at a more cost-effective price.
Austria became the first European country to approve reimbursement of the drug for 250 patients on September 1 last.
A small number of Irish patients are receiving the drug under a Managed Access scheme, but this is at the goodwill of the manufacturer until a reimbursement price is agreed.
One of those patients is Longford woman Jillian McNulty who will tomorrow lead a lunchtime protest outside the Dáil, starting at 1.15pm.
Ms NcNulty will follow-up with a cross-party briefing in the Dáil.
