Video: Terrified Longford mother to camp outside Dáil gates to highlight plight of Cystic Fibrosis sufferers

Hazel Robinson pleads with Minister Simon Harris, Vertex and HSE to reach an agreement on life-changing CF drug Orkambi - 'no one can sit back and watch children suffer'

Alan Walsh

Reporter:

Alan Walsh

Email:

alan.walsh@longfordleader.ie

‘Desperate times call for desperate measures’ declared Longford mother Hazel Robinson as she announced that she won’t be moving from the gates outside Dáil Éireann in protest at the failure of Government to make life-changing drug Orkambi available to Cystic Fibrosis sufferers.

Hazel’s daughter Gypsy Ann suffers with Cystic Fibrosis (CF) and during one of Gypsy Ann's stays in Our Lady's Children's Hospital, Crumlin before last Christmas, her mother enlisted the help of high profile personalities Brendan O'Carroll, Gavin Duffy and jockey Ruby Walsh to support the #YesOrkambi campaign.

Hazel, from Drumlish, says CF patients have waited long enough. Travelling from Longford on a ‘one-way train ticket’, she was in Dublin today (Saturday, April 8) for a water charges march, and afterwards she made her way to the Dáil where she says she will set up a pop-up tent and she won’t be moving.

“Now I choose to wait here. I hope the Gardaí treat me with respect. The sick are unable to take weekends off. Minister Simon Harris please hurry up. Don't make patients have to go to the streets again begging for their lives in protest,” pleaded the upset mother.

Hazel admitted that she is ‘terrified’ and said no one can sit back and watch children suffer.

In February, Hazel and her daughter Gypsy Ann (14) helped organised a Light of Hope Vigil in Longford town, as part of the #yesorkambi campaign.

Negotiations are ongoing between the Government and Vertex (the manufacturers of Orkambi) in relation to reaching an agreement on price and making the drug more accessible to the 550 CF sufferers in this country.

It was previously highlighted that Orkambi would cost €159,000 per patient per year to administer.

Another Longford CF advocate, Jillian McNulty, previously appeared on the Claire Byrne Live TV show to highlight the Orkambi campaign and she has been to the forefront in the organisation of two national protests, with a third protest set for this Wednesday, April 12 outside the Dáil.  

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Jillian McNulty marches for Cystic Fibrosis awareness in Longford