A NORTHSIDE mother, whose daughter has cystic fibrosis, has told how a drug at the centre of a pricing dispute between the HSE and the manufacturer could improve her quality of life.
Laura Carrick (14), from Raheny, has the genes that make her eligible to receive Orkambi, a drug that could help treat the effects of her illness.
Laura requires the use of a nebuliser several times a day, must do physio daily and often misses school due to tiredness as a result of her condition.
Speaking to the Northside People, her mother Bernadette said Orkambi could greatly improve her quality of life if she is found eligible to receive it.
“Every year her lung function is decreasing. They say this drug would only give a three per cent increase but three per cent for a person with Cystic Fibrosis is vital,” said Bernadette.
“It would obviously be under the doctor’s supervision but if he thinks that she’s okay to take it then yes, we would give it to her.”
While it is not certain whether Orkambi would have the same positive effects on Laura as it has on other patients, Bernadette sees it as another chance to make life easier for her daughter.
“This drug could at least help her get up and go to school in the morning and then we can look to the future,” Bernadette said.
“Then she can think: maybe I can get to college and get a job and she wouldn’t be leaning on the HSE as much because she’d be earning herself.”
According to reports, the drug would cost €160,000 per patient from the manufacturers Vertex.
“We’re all going to work together to try and get a reasonable price for patients and the HSE,” said Bernadette.
“We understand that €160,000 is a ridiculous amount to pay for a drug.”
There are approximately 1,200 people in Ireland who have cystic fibrosis. While not all of them would be eligible to receive Orkambi, Bernadette said the whole CF community will support the fight for a resolution to the pricing issue.
“There’s also a lot of people fighting for this who don’t have the same genes (to receive Orkambi),” she added. “They know though that we’d be on board for them and will help them get a push through in the future.”
This Wednesday, December 7, cystic fibrosis patients, their families and friends, will travel to the Dáil for a protest where they will be urging the Government to work towards a resolution to the impasse.
A spokeswoman for the HSE said it has undertaken considerable engagement and negotiation with Vertex over a protracted period in an effort to secure a significant price reduction for Orkambi.
“To date the drug has been considered unjustifiably expensive and not sufficiently cost effective by both the National Centre for Pharmacoeconomics (NCPE) and the HSE Drugs Committee,” she said.
“The HSE is disappointed around the level of meaningful engagement by the manufacturer in lowering the exorbitant price of Orkambi for Irish patients (and indeed equally for CF patients in the UK, Canada, Scotland and Australia).
“The HSE has recently completed its most recent round of negotiations with Vertex.
“On foot of this, the HSE’s Drug’s Committee, together with a NCPE recommendation and other expert advice, is in the process of sending its latest recommendation on the cost-effectiveness of Orkambi to the HSE Directorate.”
The spokeswoman added: “The HSE Directorate will then make a decision taking into consideration the manufacturers latest price offer.”
However, in a letter to Cystic Fibrosis Ireland, and seen by Northside People, Vertex said it “refutes allegations by the the HSE of failing to meaningfully engage and, the publically quoted figure of €392m is incorrect, unrealistic and does not reflect discussions to date with the HSE”.
“Vertex has spent over 15 years and billions of dollars to date developing medicines for CF,” the letter read. “Our mission is to cure the disease and we have a pipeline of medicines we are developing in pursuit of this mission.
“Vertex stands ready to meet the Minister at short notice in order to resolve this vitally important issue for the CF community in Ireland as soon as possible.”
Meanwhile, Minister for Health Simon Harris has written to the Health Ministers in England, Scotland, Canada and Australia asking them to collaborate to try and make progress on accessing Orkambi at a cost effective price for cystic fibrosis patients in each of their countries.
REPORT: Daniel O’Connor
