Dear Minister Harris, please don't put a price on our lives.

Tell the Minister for Health to support the fight for Orkambi

#YesOrkambi

What is Cystic Fibrosis?

Cystic Fibrosis is a chronic, life-limiting illness that affects the whole body, particularly the respiratory and digestive systems. It causes the body to produce unusually thick, sticky mucus that:

  • clogs the lungs, leading to life-threatening infections; and
  • obstructs the pancreas, stopping natural enzymes from helping the body break down and absorb food.

People with CF have a gruelling daily routine of nebulised medications, chest physiotherapy and exercise to try and clear this thick mucus from their lungs. They live with breathing difficulties, persistent coughs, poor digestion and reduced life expectancy. Not to mention the elevated anxiety caused by these relentless symptoms and treatment regimes.

CF is a progressive illness for which there is currently no cure. The predicted median age of survival for a person with CF in Ireland is in the early to mid-30s, but many lives are still stolen much earlier than this. Hope comes in the form of Orkambi – a breakthrough medication that actually treats the cause of CF for people with Double Delta F508, the most common form of the illness. Orkambi has the potential to completely transform the lives of these patients.

How can Orkambi help?

  • Orkambi treats the underlying cause of CF in people with two copies of the Delta F508 mutation. Approximately 60% of Irish CF sufferers fit this profile.
  • Orkambi is not a cure, but it is a huge breakthrough for people with CF because it treats the cause, not just the symptoms.
  • In trials, Orkambi has been shown to reduce exacerbations and hospitalisations by up to 40%. It has also been shown to reduce antibiotic usage, increase weight gain and improve lung function. Patients have also reported an improvement in mental health and quality of life.

As Ireland has the highest incidence of Cystic Fibrosis in the world, we should be leading the way in CF healthcare. But by refusing to fund this drug, we have completely lost our way. We need to convince the Government to move from no to #YesOrkambi.

In the news

  • Irish CF Groups Disappointed in Government’s Funding Rejection of Orkambi
    05/06/2016

    Read the article

  • Irish Times
    Cystic fibrosis campaigners push for Orkambi funding
    04/06/2016

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  • Joe.ie
    VIDEO: The campaign to fund Cystic Fibrosis drug Orkambi starts here
    03/06/2016

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  • Irish Examiner
    Cystic fibrosis ‘wonderdrug’ could save State money
    03/06/2016

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  • Irish Times
    Orla Tinsley: Removal of Cystic Fibrosis drug Orkambi is a catapult towards death
    03/06/2016

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  • Irish Independent
    Cystic fibrosis drug Orkambi rejected despite patients' pleas for access
    03/06/2016

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  • Irish Times
    Cystic fibrosis patients dismayed as Orkambi rejected
    03/06/2016

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  • No to CF drug Orkambi at cost of €391 million over five years
    03/06/2016

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  • UTV Ireland
    CF patients fight to keep drug deemed 'too expensive’
    03/06/2016

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  • Rothco
    You pick on one of us; you pick on all of us.
    05/06/2016

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  • Irish Times
    Minister proposes EU bulk buying of drugs to lower costs
    03/06/2016

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  • Clare FM
    Shannon father says government must negotiate on Orkambi
    03/06/2016

    Read the article