CF Ireland call for decision on life-saving drug – Galway Independent

Cystic Fibrosis Ireland is again appealing to the government to approve ground-breaking therapies for people with the disease.

The plea comes ahead of Cystic Fibrosis National Awareness Week, which runs from 10-16 April.

The HSE has yet to confirm whether it will make Orkambi available - a life-changing drug that could significantly improve CF patients quality of life.

Chairperson of CF Galway, Mary Lane Heneghan is calling on the government to conclude its discussions with the drug manufacturer, Vertex Pharmaceuticals, and to give swift approval for the Orkambi therapy.

The drug is estimated to cost 159,000 per patient.

She said it is hard for CF patients and their families to listen to the issue being played out in the public eye.

Its not fair on the families and the people with CF out there that all of this is played out on the airwaves. I know it has to be, but its just very difficult for the parents and for the adults in particular.

Ms Lane Heneghan is hopeful the HSE will come to a decision by the end of this week.

The latest figures from the Cystic Fibrosis Registry of Ireland show that in 2015 there were 1,219 people registered with CF, with 19 years the median age.

65 Roses Day

65 Roses Day so-named after the way in which young children are first taught to say the words Cystic Fibrosis will see the country awash with purple next Thursday, 13 April as volunteers take to the streets and shopping centres selling purple roses with the aim of raising 100,000. Monies will go to fund the development of dedicated healthcare facilities, research, counselling and much-needed grant supports for people with CF in areas such as transplant assessment, fertility and bereavement.

Galway Events

It will be all guns blazing in Galway next week, according to Ms Lane Heneghan, with a number of events scheduled to take place in aid of CF.

TY students at St Brigids Vocational College Loughrea along with their TY Co-ordinator Ms Flanagan are organising an awareness and fundraising event on 13 April. There will also be a poker game in St Michael's Community Hall Craughwell on Friday 14, as well as a quiz in Dan's Bar Athenry organised by Ronan Cahill who is cycling Malin2Mizen for CF in May and an event in Mayfly Inn Oughterard plus a memorial walk to Mameam.

Eyre Square Shopping Centre, Bank of Ireland Oranmore and Londis Kilcolgan will also be selling 65 Roses.

Ms Lane Heneghan said they are totally dependent on the generosity of local people and she thanked those for continuing to support the organisation.

You can lend your support by buying a purple rose for 2, making a 2 text donation by texting 65ROSES to 50300 or donating online atwww.65rosesday.ie

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CF Ireland call for decision on life-saving drug - Galway Independent