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#Orkambi

From TheJournal.ie 'If I didn't take part in a clinical trial, I would have died' Better Care

'If I didn't take part in a clinical trial, I would have died'

Patients in Ireland are being encouraged to ask their doctors about clinical trials.

From TheJournal.ie 'She was just so ill, it was horrible to see my child like that' 65 Roses Day

'She was just so ill, it was horrible to see my child like that'

Darcy Grainger is one of about 1,300 people in Ireland who have cystic fibrosis.

From TheJournal.ie 'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug Cystic Fibrosis

'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug

Children between the ages of six and 11 will now be able to access the drug in Ireland after yesterday’s announcement.

From TheJournal.ie 'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal Cystic Fibrosis This post contains videos

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal Exclusive

HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.

From TheJournal.ie Campaign to raise money for Orla Tinsley's lung transplant care hits target Cystic Fibrosis

Campaign to raise money for Orla Tinsley's lung transplant care hits target

A fundraiser has been set up to help Irish journalist Orla Tinsley raise money for a lung transplant aftercare.

From TheJournal.ie 'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi Cystic Fibrosis

'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi

A deal on the cystic fibrosis drug was finally reached last month.

From TheJournal.ie 'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis 65 Roses Day

'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis

Cystic fibrosis can be a life-changing condition for entire families.

From TheJournal.ie 'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi End Of A Long Road

'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi

Orkambi – as well as the drug Kalydeco – will now be available for CF sufferers from 1 May.

From TheJournal.ie 'Life changing' cystic fibrosis drug Orkambi will be available from next month Deal Reached

'Life changing' cystic fibrosis drug Orkambi will be available from next month

Simon Harris made the announcement today in the Dáil.

From TheJournal.ie 'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white' Organ Donation

'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white'

Shauna Morrissey has cystic fibrosis and is campaigning for an opt-out organ donation system.

From TheJournal.ie Deal on 'miracle' cystic fibrosis drug expected in a matter of weeks Orkambi

Deal on 'miracle' cystic fibrosis drug expected in a matter of weeks

Health Minister Simon Harris said that he wants a good deal for the taxpayer and, most importantly, for patients.

From TheJournal.ie Taoiseach told 'several children have died' waiting for Orkambi drug decision Cystic Fibrosis

Taoiseach told 'several children have died' waiting for Orkambi drug decision

Orkambi is estimated to cost €159,000 per patient.

From TheJournal.ie 'Not fit for purpose': How an 'arbitrary' system decides what drugs get funded in Ireland Value Of Life

'Not fit for purpose': How an 'arbitrary' system decides what drugs get funded in Ireland

Within the finite resources of the health system, expensive drugs are routinely turned down.

From TheJournal.ie Your crash course in... Ireland's battle with Big Pharma for a 'miracle' cystic fibrosis drug Health

Your crash course in... Ireland's battle with Big Pharma for a 'miracle' cystic fibrosis drug

The government is making a last-ditch attempt to settle a better price for Orkambi.

From TheJournal.ie Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations Too Expensive

Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations

The drugs are currently too expensive for the HSE to make available to patients.

From TheJournal.ie Vertex to re-open talks on Orkambi with HSE Cystic Fibrosis

Vertex to re-open talks on Orkambi with HSE

Earlier, hundreds of people attended a protest outside Leinster House calling for action on the drug.

From TheJournal.ie Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi Cystic Fibrosis

Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi

The health minister said he wants “further engagement” between Vertex and the HSE.

From TheJournal.ie Simon Harris writes to other health ministers in bid to reduce cost of CF drug Orkambi

Simon Harris writes to other health ministers in bid to reduce cost of CF drug

The Health minister wants to team up with England, Scotland, Canada and Australia.

From TheJournal.ie Opinion: 'My little boy isn't worth the cost of Orkambi' Cystic Fibrosis

Opinion: 'My little boy isn't worth the cost of Orkambi'

News broke last night on Twitter that the Government have rejected a drug – Orkambi – that could stop my son’s pain, suffering and lengthen his life, writes Elmarie Tipper.

From TheJournal.ie HSE drug advisor says life-changing cystic fibrosis drug is "not value for money" Orkambi

HSE drug advisor says life-changing cystic fibrosis drug is "not value for money"

It was reported yesterday that the HSE would not be financing the drug.

From TheJournal.ie Cystic fibrosis patients 'dismayed' at decision to not fund life-changing drug Orkambi

Cystic fibrosis patients 'dismayed' at decision to not fund life-changing drug

Simon Harris has said he has not yet received a decision from the HSE regarding Orkambi.

From TheJournal.ie Simon Harris wants to bring down the cost of expensive drugs by buying in bulk High Prices

Simon Harris wants to bring down the cost of expensive drugs by buying in bulk

The minister says he is exploring options with other EU countries to bring the cost down.

From TheJournal.ie 'Orkambi saved my life, other people should get access to it' Cystic Fibrosis

'Orkambi saved my life, other people should get access to it'

The drug, which costs about €160,000 per patient per year, is giving some people with cystic fibrosis a new lease of life.

From TheJournal.ie 'I want to be a reliable friend. A better family member. I want to be present. I want Orkambi' Orkambi

'I want to be a reliable friend. A better family member. I want to be present. I want Orkambi'

TheJournal.ie talks to three people with cystic fibrosis about what has been a difficult week.