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MULTIPLE SCLEROSIS SUVERERS are holding out hope that the ‘wonder drug’ Frampyra will soon become available by the HSE again.
Since the end of last month MS sufferers taking the drug have had to face a bill of €500 a month to keep on it.
It had been available to a number of sufferers for free for the past two years but was removed after the HSE said the manufacturer could not justify the prices in order for it to be refunded.
Tom Curran, the partner of the late Marie Fleming, is campaigning for the drug to be available at a reasonable price for MS sufferers.
He described it being withdrawn from the General Medical Scheme as “kicking the crutches from underneath sufferers”.
Manufacturer Biogen Idec met with the HSE recently to discuss a potential revised application.
The HSE told TheJournal.ie that it expects Biogen Idec will submit a revised application.
The HSE will then re-consider the application in as timely a fashion as possible in line with the agreed procedures and timescales for the assessment of new medicines.
Curran said, “the least we are asking is that some sort of arrangement could be arranged for the people who are already on it.
It’s a huge psychological problem as well and the stress affects MS badly- anytime Marie got stressed her MS would get worse.
He added that, “Biogen are not in a position to tell us how many people were on the trial but I know that there are around 20 people who now have to pay the full price.”
He described the results from the drug as ‘miraculous’.
Fine Gael TD Regina Doherty made the point that without access to this medicine, some people will no longer be able to work and so will be entitled to a €785 per month disability benefit payment.
Curran also said that the long term effect of taking the drug would mean some people might not need the same amount of help from the State, so it would be an investment by the health service.
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Great we can burn them instead of coal!!!
@Diarmuid O Brien:
U can but you’ll have to pay VAT on the matches to light them.
@Paul O Connor: the other alternative is use the newspapers to wipe your derrière
Finally something positive for the people in the budget. Can’t remember last time I bought a paper.
I suppose they have to make sure their spin doctors dinosaur media companies don’t die off.
@Jason Walsh: Guess you never came across spin and misinformation on the internet or social media.
How about getting rid of 13% vat on kerosene ,doing something useful for a change ????
Only 5% in north
An answer to a question nobody asked.. political/media bubble to be strengthened.
Who needs to buy a newspaper when you have the Journal :)
@Míleata Watch Co: Well it might now finally be printed including the comments.
The abolition of vat on insulation products might be more useful, beneficial to everyone and address the current problems around fuel costs and energy usage.
But hey, yay for fecking newpapers, the real question is, could Irelands government be any more detached from reality or their responsibilities?
Steam engine manufacturers are aggrieved!
The Sunday Times costs €4
Minus vat €3.64
It was cheaper a few months ago
@Kevin Carroll: Yea but the Irish times is expensive.
Most people now of day have newpapers on their fone
@David Corcoran: What papers do you have?
@David Corcoran: And that’s why they’re semi-literate
And the could also cut the VAT on dog nuts whilst their at it. No VAT on them. In the North
Positive move for the Journalists in employment with the Newspapers
These news outlets have been beneficiaries of incredible amounts of government (people’s) money during covid while readership numbers over the last decade plummeted. That money allowed failed business models to miraculously turn a tidy profit while basically acting as non critical mouthpieces of government. Now These repeaters of government propaganda are in for another tidy sum while periodicals like Village and Phoenix magazine, who have been critical of government policy, will not benefit from this generosity. I guess they always look after there friends so nobody should be surprised
Local newspapers are judged to be more important than national ones. If their journalists are independent, then they are great at exposing corruption at a local level.
@François Pignon: all local papers are owned by the National Newspaper groups
Haven’t bought one in years and don’t intend to ever again.
And is anyone under the illusion that any tax abolished will benefit the customer? Haha! In the board rooms they are salivating.
Sunday Business Post almost 4 Eur. It’s their own fault/greed people are not buying, shovelling their own grave.
As I read theJournal ie
Good news at last.
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