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#Spinraza
# spinraza - Tuesday 11 June, 2019
Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease
The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.
# spinraza - Wednesday 15 May, 2019
'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.
# spinraza - Sunday 10 March, 2019
'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on
Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.
# spinraza - Thursday 28 February, 2019
'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication
About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.
# spinraza - Monday 25 February, 2019
'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition
The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.
# spinraza - Sunday 3 February, 2019
'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'
Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.
# spinraza - Saturday 7 January, 2017
'If she gets another chest infection she probably won't make it, that’s the reality'
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.
Your say
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Poll: Is it fair to ask politicians about their own personal drug use?
TAOISEACH LEO VARADKAR and Fianna Fáil leader Micheál Martin went head-to-head in the first live televised election debate last night where a range of issues from healthcare to housing were discussed.
One moment that set people talking was towards the end of the debate when presenter Pat Kenny asked each of the candidates if they have ever used illegal drugs.
While Martin instantly replied that he has never taken illegal drugs, Varadkar said he already nswered this question in an interview several years ago. After he was pressed for an answer from Kenny and Martin, Varadkar admitted he had used illegal drugs but not for a long time.
Speaking on the Tonight Show after the debate, Fr Peter McVerry dismissed it as a pointless question, adding that only people buying drugs regularly should have to account for their moral decision.
It is clear that a wider debate is to be had around personal drug use and how much of this should be shared by those running for elected office.
So today we’re asking you: Is it fair to ask politicians about their own personal drug use?
Poll Results:
Yes (1714)
No (1063)
I'm not sure (149)
Share your story: voices@thejournal.ie
Lise Hand: Will they? Won't they? Shades of Love Island as big parties can't avoid recoupling talk
By Lise Hand - @liseinthecity
Opinion: Young people don't vote? You may be right, but we might surprise you
By Adam Hallissey and Ben Quigley - @progressbrief
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