independent

Friday 19 September 2014

Wonder drug blow for MS sufferers

Niamh Keegan

Published 27/05/2014 | 05:42

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Gorey man Fintan Lambe is one of the more than 8,000 Multiple Sclerosis (MS) sufferers nationwide who will be facing huge bills from July onwards for a wonder drug that boosts their ability to walk and work, and generally live a quality life.

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The drug Fampyra has been available free of charge for the past two years directly from the manufacturing company BioGen Idec, while it was awaiting approval for commercial distribution.

However, despite the drug being proved to assist adults with MS to walk, it has not been approved for funding by the government under the Drugs Payment Scheme or the Long Term Illness Scheme, so sufferers like Fintan will be obliged from July 1 to pay for it themselves.

'This week I got a letter from my pharmacist Paddy McCauley, who absolutely did his best to find alternative funding for the drug, but he drew a blank, so I have no choice but to pay a hefty €280 a month to stay mobile,' said Fintan, a journalist based in the Gorey office of People Newspapers Ltd.

'As far as the Government is concerned, that bill is cheap in comparison to what will happen if I don't take it, since I would be permanently in a wheelchair, requiring home help, and maybe unable to work, aside from the expenses involved in adapting my home. The government should recognise the savings in funding this drug far outweigh the cost of not making it available to MS suffers,' he added.

'This is not all about me either. There are many people with MS in this country who rely on this drug and while I am fortunate to have a job and I can find a way to pay for it, there are many people with MS who simply cannot work and cannot pay.

'All we can do is lobby government and hope they see sense,' he said.

Michael Barry, Clinical Director of Pharmacoeconomics in St James's Hospital, the board that determines which drugs are eligible for funding on government schemes, said on Friday that the decision to refuse funding for Fampyra could be revised should numbers of patients using the drug prove higher than initially anticipated, and if the company reduces the price.

Multiple Sclerosis Ireland is calling for HSE to provide access to approved treatment for sufferers of the conditon particularly those which allow people to remain independant.

CEO of the organisation, Ava Battles, said Fampyra has been shown to have clear benefits for mobility among people with MS and the organisation is lobbying the HSE to make it available through one of its payment schemes. 'We have one of the highest rates of this neurological condition in the world and Ireland cannot afford to fall behind in the availability of approved MS treatments,' she said.

MS is the most disabling neurological condition in the country and is usually diagnosed between the ages of 20 and 40 and there is no known cause or cure.

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