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Thursday 29 October 2020
Luke Doherty was added to the transplant waiting list when one of his lungs collapsed.
Orla Tinsley told RTÉ’s Six One News that she feels like a “new woman”.
Darcy Grainger is one of about 1,300 people in Ireland who have cystic fibrosis.
Ireland has more cases of cystic fibrosis per head of population than any other country.
Orla Tinsley has been instrumental in raising awareness of gaps in CF services over the years.
HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.
A fundraiser has been set up to help Irish journalist Orla Tinsley raise money for a lung transplant aftercare.
A deal on the cystic fibrosis drug was finally reached last month.
Cystic fibrosis can be a life-changing condition for entire families.
Orkambi – as well as the drug Kalydeco – will now be available for CF sufferers from 1 May.
Simon Harris made the announcement today in the Dáil.
Shauna Morrissey has cystic fibrosis and is campaigning for an opt-out organ donation system.
Helen Taylor died while waiting for a double lung transplant in 2014.
Earlier, hundreds of people attended a protest outside Leinster House calling for action on the drug.
The health minister said he wants “further engagement” between Vertex and the HSE.
The Health minister wants to team up with England, Scotland, Canada and Australia.
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.
It was reported yesterday that the HSE would not be financing the drug.
Simon Harris has said he has not yet received a decision from the HSE regarding Orkambi.
The drug, which costs about €160,000 per patient per year, is giving some people with cystic fibrosis a new lease of life.
Meanwhile, the cancer drug Pembrolizumab has been approved for reimbursement by the HSE.
The state-of-the-art new cystic fibrosis unit in University Hospital Limerick was built thanks to charitable fundraising efforts.
Nine-year old Cody Nolan will be a guest in the striker’s private box at the Aviva.
“She wanted to live with every fibre of her being.”
Helen Taylor, a Cystic Fibrosis sufferer, has been on the organ transplant waiting list for almost a year.
Most people are unable to spot the warning signs of the disease.
In the past, people with cystic fibrosis typically died in childhood. But now that we have longer lifespans we are often faced with a new problem: infertility.
TheJournal.ie speaks to mum of two-year-old Mason and 20-year-old student Amy about their day-to-day experiences with the chronic illness.
For one Kerry-born woman, it was just a case of having the right friend.
The decision was announced today by Minister James Reilly after an agreement was reached with the HSE and the manufacturers of the drug.
Irish health authorities will negotiate the price of a “groundbreaking” new treatment for cystic fibrosis, which would currently cost the State more than €28 million annually.
Two in-patient rooms will be held in reserve for emergency CF admissions – but patients say the arrangement falls short.
A new study from the Royal College of Surgeons in Ireland shows that the female hormone oestrogen has a role to play in this.
The ‘Podhaler’ is a wireless inhaler that reduces the time needed to receive antibiotic treatment from almost an hour a day to just five or six minutes.
President Mary McAleese will be at Our Lady’s Children’s Hospital today to open a state-of-the-art, four-bed ward for patients with Cystic Fibrosis.
The HSE has announced that it plans to introduce a newborn screening programme for cystic fibrosis.
Nine things you need to know by 9am: Deadlines loom for would-be Fianna Fail leaders, for a final date for General Election 2011 – and for the person who wants to be the one to flick the ‘crush’ switch on Sean FitzPatrick’s BMW.
St Vincent’s Hopsital says it will finalise the agreement to build its special unit in the next 24 hours.
Cystic Fibrosis sufferers could see a specialised unit open in 18 months.
9 things you absolutely need to know by 9am.
MEMBERS OF THE Association of Secondary Teachers in Ireland (ASTI) yesterday voted to take industrial action unless the government addresses several issues related to Covid-19 in schools by 30 October.
The issues in question include the need for a comprehensive testing programme, rapid testing and turnaround times, along with resources for schools to ensure continuation of learning if schools are closed or people are self-isolating.
The ASTI president Ann Piggott said: “ASTI members are clearly stating that they want schools to remain open for students during this pandemic.”
She said teachers are “demanding that the government step up” and provide solutions to these issues.
So, today we want to know: Would you support teachers striking over Covid-19 safety concerns?
Poll Results:
Share your story: voices@thejournal.ie
The goalposts – and polling analysis – have shifted since 2016, Noel Rock writes.
Rain tapering off; breezy this afternoon
Max: 15 °C
Min: 10 °C
Mostly cloudy with a couple of showers
Max: 12 °C
Min: 9 °C
Rather cloudy, a little rain; windy
Max: 13 °C
Min: 7 °C
