Monday 23 October 2017

Cystic Fibrosis Ireland call on Government to 'speed up' discussions on Orkambi drug as annual fundraiser launched

Tending carefully to the purple roses on display at the launch of the appeal in Dublin's Herbert Park was Cystic Fibrosis Ireland ambassador, RTÉ presenter, Keelin Shanley, who was joined by brother and sister Tom and Jessica Cassidy, from Co Meath, both of whom have cystic fibrosis.
Tending carefully to the purple roses on display at the launch of the appeal in Dublin's Herbert Park was Cystic Fibrosis Ireland ambassador, RTÉ presenter, Keelin Shanley, who was joined by brother and sister Tom and Jessica Cassidy, from Co Meath, both of whom have cystic fibrosis.

Cystic Fibrosis Ireland is today once again calling on the Government to conclude its discussions with the drug manufacturer Vertex Pharmaceuticals and to give swift approval for a life-saving drug.

The plea was made at the launch of Cystic Fibrosis National Awareness Week , which will take place between April 10 to April 16 to help raise funds.

The group are calling on the Government to approve the Orkambi therapy and the extension of the Kalydeco therapy for two to five-year-olds.

Philip Watt, CEO of Cystic Fibrosis Ireland, took the opportunity of the launch to again highlight the case for approval of the drugs Orkambi and Kalydeco for people with CF:

"Cystic Fibrosis Ireland is heartened by the recent comments of the Minister for Health, Simon Harris TD, that progress is being made in discussions on the approval of new therapies for people with cystic fibrosis.

"The 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 quality of life for a substantial number of patients.

"We agree that a fair deal should be struck and that is why we are calling on all sides to show generosity of spirit in quickly finalising a mutually-satisfactory arrangement. Patients have already been waiting nine months for a positive decision  ̶  time that is precious to them. The delays must stop now."

A charity event called the 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 on Thursday April 13 as volunteers take to the streets and shopping centres selling purple roses with the aim of raising €100,000.

Money 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.

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.

Members of the public can support people with cystic fibrosis (CF) on 65 Roses Day by:

  •     Buying a Purple Rose for €2
  •     Completing a 65 Roses Challenge – see www.65rosesday.ie for more details
  •     Texting "65 Roses" to 50300* to donate €2 or by donating online at www.65rosesday.ie

*Text costs €2. Cystic Fibrosis Ireland will receive a minimum of €1.63. Service Provider: LIKECHARITY. Helpline: 076 6805278.

Online Editors

Editor's Choice

Also in Irish News