LISTEN - Castlederg man continues fighting to legalise Orkambi with support from local constituency

by Gráinne Connolly

Castlederg man Liam McHugh, who's recently become an Ambassador for the Cystic Fibrosis (CF) Trust is encouraging people to get behind a UK wide campaign to get a drug called Orkambi on the NHS for people suffering with CF. 

Liam's daughter Rachel who has CF has been using Orkambi as part of a clinical trial and has said its transformed her health. 

He's told Q Radio that the drug can benefit people with CF, like Rachel, in numerous ways, improving their overall health and quality of life: 

At the moment, Orkambi is available in 9 European countries, including the Republic of Ireland; just over the border from Liam's hometown of Castlederg.

He says there's even some families who consider moving to the Republic of Ireland from Northern Ireland just to avail of the drug. 

Liam has been in contact with Vertex, the company who owns Orkambi as they've seen the massive amount of support from Northern Ireland and the rest of the UK, and have agreed to meet with him. 

This is a huge stepping stone for people here with CF, and a step in the right direction to having Orkambi available for them. 

A UK wide petition was also launched as part of the campaign which has gone "phenomenonly" in Liam's words.

Not only did it reach it's target of 100,000 signatures in only a matter of days, a huge portion of the support has come from Northern Ireland.

In particular, Liam's own constituency of West Tyrone has provided the most signatures for the petition, topping the leader board; closely followed by those in Fermanagh and South Tyrone. 

This petition and campaign has also received cross party support from 66 out of 90 MLA's in Northern Ireland, who signed a letter giving their backing to Orkambi. 

Now with the required number of signatures and more, a round table meeting will be held in Westminster on February 28th to discuss the campaign. 

Liam is encouraging both MP's from Northern Ireland to pledge their support ahead of the meeting, as well as local people as the CF Trust will be hosting a protest alongside it on the same date. 
 

To listen to the full details about Orkambi, the petition, upcoming meeting in Westminster and how to pledge your support; Q Radio journalist Gráinne Connolly's full interview with Liam is linked below in part 1 and part 2: 

PART 1 

PART 2