There is widespread disbelief among those families affected by Cystic Fibrosis as it has been confirmed that the Government will not fund the 'miracle' drug Orkambi.
The Health Service Executive (HSE) said the drug is considered to be unjustifiably
expensive and will not fund the ground-breaking drug for Cystic Fibrosis
The HSE also said it is disappointed the manufacturer, Vertex, will not lower what it has called "the exorbitant price."The drug was highlighted in Sligo when earlier this year Grainne 'GG' Golden, just one month before her death in February, signed a petition calling on the HSE to fund a life-changing Cystic Fibrosis (CF) drug Orkambi.
In that petition the brave Ballinode Community College student and CF activist wrote;
"I have cystic fibrosis.
This drug will change my life.
We all need this drug!
To put a price on Life is so unfair!
Shame on Irish Government!
And shame on Leo Varadkar."
Leo Varadkar was the Minister of Health at the time.Following her death her aunt Pauline Hickey recalled how Grainne, in her final moments, took the mask off and appealed to everyone to continue the campaign for the approval of life-saving drug Orkambi and a new “opt-out organ donation” into law.
Pauline said: “Our hearts are broken for ever at the loss of our beautiful GG who fought for her entire life against CF in order to live somewhat of a ‘normal’ life.
“GG did so much in her short life, but never without a fight against the ball and chain that is cystic fibrosis, GG, her family and friends fundraised at every opportunity in order to raise money to find a cure.“Her loss has left a huge hole in our lives. We believe she would still be with us now, lighting up our lives with her beautiful smile and hearty laugh, if that drug [Orkambi] was given to her by the Government.
Grainne's mum, Terri said about the drug at that sad time, “This gives patients a real chance at life, which is proven by the medical trials. Who knows what this could lead to, the possibilities are endless.”
She recalled Grainne was proud of her local Senator Marc MacSharry for proposing the drug be approved and repulsed by the politicians who voted No against Orkambi.Terri continued, “These people must not pay attention to their community as we have lost 23 young people in the North-West Region alone to cystic fibrosis in the last 20 years.
Grainne's sister Aisling described “GG” as a “true warrior” who “fought the good fight right through to the bitter end”. The late Grainne 'GG' Golden (L) with Mum Terri and sister Aisling
Marc McSharry, now a Fiann Fáil TD for the Sligo/Leitrim constituency, said yesterday, Sunday, that the government’s decision to refuse funding for the introduction of drug for people living with Cystic Fibrosis is absurd.
Following a meeting of the HSE Drugs Committee, it is expected that the government will formally announce its decision to refuse to provide the Orkambi drug to suitable CF sufferers.
Deputy Mac Sharry said, "Cystic fibrosis is a very debilitating condition and anything that can be brought forward to improve people’s quality of life and extend life expectancy should be made available immediately. More people are living with cystic fibrosis than ever before. “Ireland has the highest prevalence of CF in the world and therefore every effort should have been made to have this drug put on shelves in pharmacies nationwide.
“To learn that the government has rejected adding this game changing drug to the Long-Term Illness scheme for CF sufferers when lives have been significantly improved and saved, is deeply concerning.
“The Minister must now answer critical questions such as why the government and the HSE have decided not to grant access to the Orkambi drug, and why the cost of this drug is being prioritised over the value of saving lives.
“The value of life and clear savings of treatment with this drug through the reduced need for acute care far out ways any monetary cost. “This drug was approved by the EU Medicines Agency some time ago and has been proven to be of major benefit for cystic fibrosis sufferers. Furthermore, it has been shown to extend life expectancy and significantly improve quality of life for those who suffer from the disease. “Ultimately, that should far outweigh any criteria for assessment and the HSE should have kept that at the top of mind when it came to denying this medication.
“There must simply be a reversal of this decision for CF sufferers in Ireland and I intend on raising this in the Dáil this week,” concluded the Sligo based TD.
See also: Sligo Today 10/11/16Cystic Fibrosis Facebook (Sligo) Page