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THE HSE HAS been urged to approve funding for the use of the drug Spinraza in the treatment of spinal muscular atrophy (SMA) in Ireland following approval by the NHS.
SMA is a rare, debilitating and life-threatening disease that affects nerves in the spinal cord, making muscles weaker and causing problems with movement, breathing and swallowing.
Where it develops in babies and toddlers it can significantly reduce life expectancy.
While it is not a cure, trials have shown that Spinraza, also known as nusinersen, can slow the effects of SMA in some cases.
NHS England today said it has approved the drug for use after an agreement with its makers, Biogaen, to fund treatment for a limited time to allow more data to be collected on its effectiveness.
The treatment will be made available to the youngest and most severely affected patients immediately.
The HSE has previously said it will not reimburse for the drug at its current price, stating it would cost more than €20 million over a five-year period. Around 26 children in Ireland with SMA could benefit from Spinraza.
Labour TD Alan Kelly said it is time now for the HSE to follow the lead of the NHS and sanction funding for the “life-changing” drug. He said families here have been “crying out” for the drug to be made available and the news from the UK “will give many people hope”.
“Ireland is now one of the only countries in the European Union to have not approved this drug. We need to do right by the small number of families whose loved ones have this debilitating condition.”
Also commenting on the announcement, Sinn Féin senator Rose-Conway Walsh pointed out that it appears the price has been lowered compared to previous cases, including the offer that was made to the HSE.
“It is vital that this is taken into consideration as the HSE considers its next move in negotiations with the company,” she said.
In a statement, Biogen today said it has submitted a revised proposal for reimbursement that it hopes the HSE will respond to in a “similarly positive way” to the NHS.
To date, more than 7,500 patients worldwide have been treated with nusinersen, from infants to adults.
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How about debating medical card holders not pension holders paying 10 euro per doctor visit. When your paying 55 quid per visit and you can’t see a doctor for 3 days because he’s booked solid with medical card holders with colds and aches blocking up the system.
If they were charged they wot be visiting until they need to like the rest of us.
@Funfair: that’s a question for the government to answer not a trade union conference
@Boganity: why is a trade union conference debating our drink driving laws then ?
@Funfair: because doctors are reminicing the old irish local junta system. The doctor, the priest and the garda seargent that kept all the peasants in their place. They still have the ear of government and think by virtue of a few years in trinity they should set policy. Drink driving needs to be tackled, but we have a government getting paid to do that.
@Funfair: it’s not pension card holder or medical card holder blocking up the waiting room..but women with there kids .kids with nothing wrong with them..except for a cough or runny nose..
@mad_fluffy: which are mostly medical card holders …
Why make these laws & then debate them, drink driving should be a ban at all times. People know the law & some people are willing to drink & drive. If they take the chance they should be prepared to take the punishment!
@Liam John Bradshaw: and what’s it got to do with doctors or their trade union conference
All EU countries ban drink drivers – and we should be no different.
Being tired behind the wheel is even worse than having one drink ,twelve hour night shifts ,!
@Gerard Heery: has this scientific finding of yours been peer reviewed ?
@Boganity: poking figurative holes in someone’s argument would be best backed up by an informed rebuttal of your own, Bog…
@Gerard Heery: as someone who works 12hr night shifts I completely agree..i put it in the same bracket as having about 6-7 drinks
@Boganity: it happens all the time but theres no prove ,only to say must of being speeding at three in the morning.
@Boganity: ok I will say in the early Ninetys worked shift and left work completely knackered after 12 hours as did other workers on the shift I’ll leave at that,
Ross should put more effort into enforcing the laws already in place. I’m all for zero tolerance, but what’s the point in this legislation when the guards don’t enforce the current laws with any real regularity (not in rural areas anyway). Not to detract from the issue of rural isolation (not that it’s any excuse for drink driving) but Ross needs to look outside the pale and sort out some decent rural transport links. But, knowing him, that’s probably outside his remit…
@Kian: one death saved is enough to justify the ban, 35 that’s a no brainer
@Boganity: it Is, but he’d save even more lives with better enforcement
@Boganity: the roads are busier than ever a road fatality is enviable.. nothing can avoid that
As the journal fact find article pointed out it uncertain whether the ‘lives saved’ would ever result in any of this kind of action. We have to remember we are addressing issues so infintesmally small in quantity we couldn’t't legislate to eradicate. Fatal outcomes represent 0.0000007% of road activity. Maybe concentrating on mental health issues would have greater effect on society. But sure the corporate which is the RSA, can’t get revenue from that.
When did doctors become law makers!
There should be breathalyser kits in each car. So drivers can test themselves before they drive. So no excuses.
If you fail both blood and urine tests then obviously drink drivers should be band. End of story, otherwise why bother testing in first place.
Like to remind Mr Ross and his supporters that text driving has been proven to be more dangerous than drink driving. So why not give them an auto ban? Or what about banning all drivers for distractive driving?
What’s to debate? Automatic ban is a good strategy. Revisit impact in five years to renew or abandon.
Funny thing about all these new laws ,if Kim Un Jong sets off a nuke these laws won’t mean a thing they’ll be alot more worrying issues come to mind like we’re did I put my 1995 iodine tablet.
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