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#Orkambi

# orkambi - Monday 3 December, 2018

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

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

Dec 3rd 2018, 6:30 AM 19,579 Views 13 Comments

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

# orkambi - Friday 13 April, 2018

'She was just so ill, it was horrible to see my child like that'
# 65 Roses Day
# 65 Roses Day

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

Apr 13th 2018, 6:15 AM 17,298 Views 4 Comments

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

# orkambi - Thursday 11 January, 2018

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

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

Jan 11th 2018, 6:10 AM 7,862 Views 9 Comments

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

# orkambi - Saturday 26 August, 2017

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

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

Aug 26th 2017, 12:05 AM 12,497 Views 11 Comments

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

# orkambi - Monday 24 July, 2017

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

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

Jul 24th 2017, 4:16 PM 19,695 Views 13 Comments

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

# orkambi - Sunday 7 May, 2017

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

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

May 7th 2017, 6:45 AM 11,888 Views 5 Comments

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

# orkambi - Thursday 13 April, 2017

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

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

Apr 13th 2017, 6:07 AM 7,768 Views 5 Comments

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

# orkambi - Wednesday 12 April, 2017

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

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

Apr 12th 2017, 6:00 AM 6,591 Views 9 Comments

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

# orkambi - Tuesday 11 April, 2017

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

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

Apr 11th 2017, 6:08 PM 29,724 Views 35 Comments

Simon Harris made the announcement today in the Dáil.

# orkambi - Monday 3 April, 2017

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

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

Apr 3rd 2017, 6:30 AM 19,926 Views 10 Comments

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

# orkambi - Monday 6 March, 2017

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

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

Mar 6th 2017, 1:24 PM 9,830 Views 15 Comments

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

# orkambi - Tuesday 21 February, 2017

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

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

Feb 21st 2017, 8:06 PM 18,034 Views 53 Comments

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

# orkambi - Wednesday 4 January, 2017

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

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

Jan 4th 2017, 7:00 AM 9,886 Views 45 Comments

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

# orkambi - Sunday 18 December, 2016

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

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

Dec 18th 2016, 7:00 AM 8,347 Views 33 Comments

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

# orkambi - Thursday 8 December, 2016

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

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

Dec 8th 2016, 4:51 PM 7,474 Views 24 Comments

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

# orkambi - Wednesday 7 December, 2016

Vertex to re-open talks on Orkambi with HSE
# Cystic Fibrosis
# Cystic Fibrosis

Vertex to re-open talks on Orkambi with HSE

Dec 7th 2016, 6:30 PM 14,119 Views 61 Comments

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

# orkambi - Thursday 1 December, 2016

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

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

Dec 1st 2016, 9:50 PM 20,220 Views 37 Comments

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

# orkambi - Tuesday 29 November, 2016

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

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

Nov 29th 2016, 7:29 PM 11,047 Views 31 Comments

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

# orkambi - Monday 28 November, 2016

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

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

Nov 28th 2016, 8:30 PM 741 Views 77 Comments

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.

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

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

Nov 28th 2016, 10:14 AM 11,887 Views 48 Comments

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

# orkambi - Sunday 27 November, 2016

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

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

Nov 27th 2016, 3:35 PM 16,729 Views 52 Comments

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

# orkambi - Monday 14 November, 2016

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

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

Nov 14th 2016, 6:15 AM 10,474 Views 44 Comments

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

# orkambi - Monday 31 October, 2016

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

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

Oct 31st 2016, 7:30 AM 18,158 Views 23 Comments

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

# orkambi - Saturday 4 June, 2016

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

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

Jun 4th 2016, 10:00 PM 31,143 Views 52 Comments

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