Protest organiser Jillian McNulty, who has CF, said she knows three parents who are remortgaging their homes in order to access Orkambi, which, unless a deal is reached, could cost in the region of €159,000 per annum, for their children.
Prior to Christmas, Health Minister Simon Harris told the Dáil that the National Centre for Pharmacoeconomics (NCPE) considered a price of €30,000 per patient per annum to be more appropriate.
The NCPE is tasked with recommending whether the State should reimburse the cost of a drug and in the case of Orkambi, the recommendation was not to do so.
The HSE’s drugs committee agreed. However following a public outcry, the HSE entered into new negotiations with Vertex.
While Mr Harris claims progress has been made and that talks around Orkambi are “now entering a critical phase”, those affected by CF say the process has dragged on long enough.
Ms McNulty, 40, from Longford Town, said it is nine months since the NCPE recommendation.
Mr Harris said he believes talks with Vertex “can be concluded in a matter of weeks” but Ms McNulty said this is “a lifetime” for some CF patients.
“Patients don’t have that time. Three or four weeks may seem nothing to him, but it can be a lifetime for a CF patient.”
Ms McNulty has had access to Orkambi for three-and-a-half years under a managed access scheme having taken part in a clinical trial.
She has received a commitment that she will continue to receive the therapy pending the outcome of discussions over reimbursement, but no assurance beyond that.
Her brother, Derek, also had cystic fibrosis — he died in 1975 at the age of five-and-a-half. Ms McNulty says Orkambi has completely transformed her life.
“I’ve gone from needing to be in hospital for up to nine months a year to just 12 weeks in the last three years,” she said.
It is estimated the drug could benefit 500 CF patients in Ireland.
Mr Harris said he was “asking for space” for talks with Vertex to be concluded “with the objective that we can achieve a deal which provides certainty now and in the future”.
“Given the level of investment and the scale of the potential benefits for CF patients, there are important commercial and contractual aspects which have to be agreed in the interests of patients and the health service overall.
"In asking for the space to bring finality to this matter, I wish to assure CF patients and families that I believe the process can be concluded in a period of weeks,” said Mr Harris.
Today’s protest takes place from 1.30pm to 2.30pm at the Dáil gates.
It is the second protest spearheaded by Ms McNulty and is supported by Cystic Fibrosis Ireland.