A Northern Ireland demonstration to highlight the need for a breakthrough cystic fibrosis drug to be made available on the NHS was “a sad occasion”, a Co Down mum has said.
Jen Banks, whose two-year-old boy Lorcan’s life could be “transformed” by a drug known as Orkambi, helped organise the protest held in Craigavon yesterday afternoon.
The ‘lie down for cystic fibrosis’ event was timed to coincide with a similar demonstration held in London’s Parliament Square yesterday afternoon.
Those present at both demonstrations were invited to lie down in a gesture designed to highlight the 255 cystic fibrosis patients who have died since November 2015 while waiting on Orkambi to be made available.
The breakthrough drug was developed by the US firm Vertex, who have yet to reach an agreement with the NHS on price, having already turned down more than one offer.
The Northern Ireland protest was held outside the Almac premises in Portadown, where Orkambi is manufactured.
Jen Banks, speaking to the News Letter after the protest, said: “It was quite a sad occasion. We were talking about the 255 lives that have been lost where Orkambi could have made a difference.”
She said the demonstration was held outside the gates of Almac because that was “as close as we can get” to Orkambi.
In a speech during the protest, Ms Banks stressed that the protest wasn’t aimed at Almac, who have no say in whether Orkambi is made available on the NHS.
“For us, being outside those gates is as close as we can get to Orkambi,” she explained.
“We were talking about our children, talking about their conditions, and the possibility of fundraising, so it was actually quite sad to be sitting there so close and yet so far to what could be a wonderful thing.”
She continued: “Afterwards, we blew bubbles to represent both the appreciation we have for the breath in our lungs and to remember all those who have died waiting.”
Orkambi is described by the Cystic Fibrosis Trust as a “precision drug” that can be used to treat a specific genetic mutation, which around 50% of people with cystic fibrosis in the UK have.
It was licensed for use in Europe in November 2015 but a series of protests by families, two government debates and a health and social care committee inquiry have so far failed to break the deadlock in price negotiations.