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Cystic Fibrosis Campaigners Welcome Orkambi Announcement

Cystic Fibrosis campaigners have been welcoming the announcement that Orkambi will be available from...
TodayFM
TodayFM

1:22 PM - 12 Apr 2017



Cystic Fibrosis Campaigners We...

News

Cystic Fibrosis Campaigners Welcome Orkambi Announcement

TodayFM
TodayFM

1:22 PM - 12 Apr 2017



Cystic Fibrosis campaigners have been welcoming the announcement that Orkambi will be available from next month.

The HSE and manufacturers Vertex have reached agreement in principle - it now just needs to be signed off by lawyers on both sides. 

It comes as Cystic Fibrosis Ireland holds its national awareness week, which will see fundraising take place across the country tomorrow.

Jillian McNulty from Longford has been on Orkambi for over three years and says it has completely transformed her life.

Ireland has the highest incidence of cystic fibrosis per head of population in the world and campaigners are hopeful that this marks the start of more money will be invested into cystic fibrosis treatments.
 
Children will also benefit from the drug Kalydeco which is to be provided from May 1st.
 
Over 1200 people here have cystic fibrosis and this deal will see around 600 of them treated with these drugs. Philip Watt, chief executive of Cystic Fibrosis Ireland says while it's a great day, we can't forget about the people who won't are suitable for the drugs.

The charity's 65 roses day takes place tomorrrow - with purple roses being sold across the country in a bid to raise vital funds. 

 
A minute's silence will be also held outside the Dáil at lunchtime today for those who have lost their lives to Cystic Fibrosis.
Nicole Gernon reports:

 


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