Parties involved need to “show generosity of spirit” to seal Orkambi deal
The government has been called on to speed up ongoing discussions surrounding the purchasing of the drug Orkambi, with hundreds of Cystic Fibrosis sufferer waiting for the life-saving drug.
Discussions between the Irish Government and Orkambi manufacturer Vertex Pharmaceuticals have been ongoing for several months.
Speaking at the launch of Cystic Fibrosis National Awareness Week, CEO of Cystic Fibrosis Ireland Philip Watt asked all parties involved to “show generosity of spirit in quickly finalising a mutually-satisfactory arrangement”.
Mr Watt went on to say: “Benefits of Orkambi and Kalydeco are well documented in increasing lung function and slowing progression of the disease, in decreasing hospitalisations and dependency on other medications and in improving the quality of life for a substantial number of patients.”
One of these patients is nine-year-old Saoirse Brophy from Tallaght who spent this St Patrick’s Day in Tallaght Hospital.
Minister Harris please feel free to come to tallaght hosp and explain to saoirse why she is here again and missing out on life. #YesOrkambi pic.twitter.com/7Uq2kjBVgJ
— Shiv Brophy (@siobhanbrophyie) March 10, 2017
— Shiv Brophy (@siobhanbrophyie) March 17, 2017
Her mother Siobhan, driven by frustration, took to Twitter last week to remind Minister for Health, Simon Harris that her daughter is missing out on life as discussions over Orkambi continue.
In her post she said: “Minister Harris please feel free to come to Tallaght hosp and explain to Saoirse why she is here again and missing out on life.”
Cystic Fibrosis National Awareness Week takes place from Monday April 10th to Sunday April 16th, with 65 Roses Day taking place on Thursday April 13th.
65 Roses Day is the National Fundraising Day for Cystic Fibrosis Ireland and takes place on Thursday April 13th.
’65 Roses’ is how some children first learn how to say ‘Cystic Fibrosis’. The symbol in Ireland for Cystic Fibrosis is a purple rose.
CF Ireland are looking for support to help raise funds and increase awareness of Cystic Fibrosis throughout the country.
CF Ireland volunteers will be out nationwide on ‘65 Roses Day’, Thursday April 13th selling purple roses for €2.
You can purchase a purple rose online today through the online shop, simply HERE.
