NI Cystic Fibrosis sufferer Lorcan gets an early Christmas present as he receives Orkambi medication after long campaign

A Co Down mother has been given an early Christmas present this year after she finally received a breakthrough new medicine for her two-year-old son.

By The Newsroom
Friday, 20th December 2019, 12:18 pm
Updated Friday, 20th December 2019, 12:32 pm

Jen Banks, whose two-year-old boy Lorcan has been battling a serious lung infection linked to his cystic fibrosis for some time, had campaigned for access to a new medicine known as Orkambi.

But a breakdown in negotiations over price between the US pharmaceutical company which owns the patent for Orkambi and UK health authorities meant patients in the Republic of Ireland and other European countries could access the drug, while patients like little Lorcan in Northern Ireland, England and Wales could not.

The two sides, Boston-based firm Vertex and the NHS, finally managed to strike a deal in October and the drug was finally made available to patients in England and Wales.

Lorcan Banks

The Department of Health in Northern Ireland quickly followed suit.

And now, after a long and gruelling campaign on social media, in the press and at various protest events across the UK alongside the charity Cystic Fibrosis Trust, little Lorcan has finally begun his course of medication – and just in time for Christmas.

A delighted Jen Banks told the News Letter: “We are absolutely delighted that this has come through at last. The main struggle for us now is just to make sure Lorcan takes them!

“We know how lucky we are and we are obviously very happy that we have a real shot at clearing up Lorcan’s infection at last.

“But I know that there are still people out there, adults, who this has come too late for.

“Orkambi has been shown to help 42% of people with cystic fibrosis but there are other drugs which aren’t available yet that can help those other people.”

One such drug is known as Trikafta, a triple combination of medications (individually known as ivacaftor, tezacaftor and elexacaftor) which has been shown to help around 90% of cystic fibrosis patients, according to the Cystic Fibrosis Trust.

The triple combination therapy was recently approved in the United States for those aged 12 and over, while the European Medicines Agency decided in October that it would be be reviewed under an accelerated assessment process.

Jen Banks said: “There will continue to be more drugs. We are hoping that Orkambi will help Lorcan until he is old enough for Trikafta and we hope that will be available by then.

“I am so hopeful as well that we will have an Executive at Stormont soon because, in terms of this campaign, it would be so much easier for us if there was a minister.”