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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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What the hell are Homeland Security doing checking suspected video piracy in cinemas?
Deterring future occurences maybe?
That’s not their charter though…
“The U.S. Department of Homeland Security (DHS) is a cabinet department of the United States federal government, created in response to the September 11 attacks, and with the primary responsibilities of protecting the United States and its territories (including protectorates) from and responding to terrorist attacks, man-made accidents, and natural disasters.”
Video piracy is the remit of the FBI.
USA is now a police state in many ways
America is a very strange countries these days.
I’d imagine they were in the cinema to prevent any more mass murders, like the 24 deaths in the cinema in Aurora in 2012.
If Homeland Security don’t want anyone recording this movie then I REALLY have to see it, sounds like an endorsement to me. Can they do that?
“Writing anonymously” I.e. hes making it up. A far fetched story and not believable at all.
Are we sure that it wasn’t “Captain Phillips” that was showing.
Piracy funds terrorists. Or at least that’s what the start of all my DVDs tell me.
You wouldn’t steal a bag.
You wouldn’t steal a car.
Why would you steal a movie. Piracy funds terrorism.
You wouldn’t steal a handbag.
You wouldn’t steal a car.
You wouldn’t steal a baby.
You wouldn’t shoot a policeman.
And then steal his helmet.
You wouldn’t go to the toilet in his helmet.
And then send it to the policeman’s grieving widow.
And then steal it again!
Downloading films is stealing.
If you do it, you will face the consequences.
Given that it was in America it’s surprising the police didn’t shoot him dead
Shoot first, download files later..
It’s like what the USSR was in the 60′s, 70′s and 80′s. A police state with thousands of spies.
Haven’t much sympathy for him. Should have a normal pair of glasses too if he needs them to see. Same thing as holding up your phone pretending to record and then saying that’s fine because your phone was off. How are the staff supposed to be able to tell that you’re not recording without taking the device off of you? He was either looking for attention or just stupid
Let’s say he was stupid etc like you say, what’s it got to do with homeland security?
As stated by Alan Kennedy, the ICE branch of Homeland Security deals with piracy.
“the Glass user said that he had the device turned off during the screening, but still wore them for its prescription lenses.”
They were normal prescription glasses.
So you’d call glasses with videocapture capability as well as a host of other technology built in “normal prescription glasses.” I’d like to live in your world
Google glasses, I really hope they’re a complete failure, the thought of people walking about recording everything 24/7 kind of worries me and I’m pretty sure that they’re going to create a whole new set of problems for people down the road.
The implications of the use of the technology in this fashion have clearly not been fully thought through. At the very least there should be a light on the outside of the glasses to indicate you are being filmed & therefore decide if you want to be in shot or not. Hope these fail miserably…….Step too far for my liking
pros and cons, on the upside even car based ones will become more common so can sort out road rage etc. and otherwise a lot of bad behaviour , casual violence etc occurs because people assume they have a right to anonymity
There is an internet group (irony?) called “stop the cyborgs” or something similar highlighting such concerns.
Why wasn’t he stopped before he went in, why wait an hour into the screening
crazy stuff, even if he was the quality would be dire with a bobbing head for 90 minutes. The cinema Im sure is free to ban them. Just imagine if he’d eaten a pastry into the shape of a gun, it would have been death by cop.
Complete overkill. Homeland security getting involved had little relation to what occurred.
God bless America. Intrusive invention results in intrusive intervening.
There must be more too it.
Though it is america
So they invaded this man’s privacy among privacy fears? The US Government agencies are paranoid androids.
No, it wasn’t “privacy fears” and nor was his privacy invaded. He was suspected of movie piracy and was questioned. Which is what usually happens when you’re suspected of a crime.
Re the Glasses, never mind Piracy id be more wary about the implications on Privacy!!
As in when people where these & have their Camera consistently on without asking who they are viewing directly or indirectly their permission to film. Normal cameras are very obvious when photos/video is being taken so you can decide if you want to be in shot or not. These glasses do NOT give you that option. Huge Infringement on peoples privacy. So just for future ref if yer in my eyeshot in a restaurant or in a public place & you will be asked by me to turn the camera off.
Massive amount of overreaction here in the comments section at the mention of the US.
Police state my hairy hole.
As explained in the article the Homeland Security’s involvement is down to the officers involved were from homeland security’s ICE unit – which monitors piracy. ICE – US Immigration and *Customs Enforcement*.
Should’nt their responsibility be piracy, as in piracy on the sea, not piracy of goods.
Why don’t you go and marry America Alan!!
Your Ma would be lonely then, Colin.
Oh you’re THAT Alan Kennedy? Do you mind if i call you dad?
ICE is the equivalent of our customs and excise. This was not the DHS tasked with counter terrorism etc. misleading headline again there Journal….
Bs!! He was obviously of middle eastern decent, ice don’t work for Hollywood
Fret
have your say