Public protest to introduce Orkambi drug

Public protest to introduce Orkambi drug

17 July 2019

DOWNPATRICK mum Jen Banks last week staged a protest outside the Craigavon-based manufacturer of the Cystic Fibrosis drug Orkambi — the drug that could save  and extend her young son’s life.

Jen and her husband, Dermot Maguire, have joined forces with parents of children with CF in Northern Ireland and the rest of the UK to call on the government to make the drug available on the NHS. 

It has not yet been introduced due to cost and a failure by the government and the drug’s manufacturer to reach agreement on a purchase price.

She was joined last Thursday by a group of other parents and supporters to stage a peaceful “laydown for CF” protest outside the pharmaceutical firm Almac in Craigavon in line with similar protests the next day across the UK.

Jen’s two year-old son, Lorcán, was diagnosed with CF within weeks of his birth and spends hours every day being nebulised to relieve his symptoms as well as taking a cocktail of drugs and antibiotics.

He is currently fighting off the bacterial infection pseudomonas.

The Maguire family had planned to move to the Republic of Ireland — where the drug is made available free to children aged two years and up — but a house deal fell through.

The Maguires are now trying to fundraise to buy Orkambi from Argentina in bulk in a collective with other families.

The irony of the fact that the drug which could dramatically change Lorcán’s health and life expectancy is being manufactured within miles of her home is not lost on the mother-of-two. 

“It’s unbelievable that Orkambi is being made in Craigavon and we need to think about buying it from Argentina,” said Jen.

“But it was so wonderful to have support from my local community at the #laydown4cf protest in Craigavon.

“As people with CF can’t be in contact with each other because of the risk of cross infection it means we tend to have quite small numbers at protests so they don’t truly represent the amount of people calling for these lifesaving drugs for cystic fibrosis. 

“Almac, where we were protesting, have no say over access. That’s down to the drug company Vertex who have priced the drug out of reach and the UK government who have failed to negotiate a deal them them, despite the drug being available in 11 other countries in the EU and in USA and Australia too.

“Almac do make the drugs though and export them out of Northern Ireland so this is as close as we can physically get to Orkambi and why we chose to protest against Vertex and the UK government at their gates to join in with a bigger demonstration that took place in parliament square in London at the same time.”