Gerard Murphy at the Royal Hospital in Donnybrook , Dublin
A Multiple Sclerosis sufferer who was the first in the country to avail of a trial wonder drug has blasted the “cruel” HSE for refusing to make it widely available for free.
Gerard Murphy had to give up “miracle” drug Fampyra in January after five years receiving it for free because he couldn’t afford it.
Father-of-three Gerard, 49, is confined to a wheelchair and suffers “excruciating” pain every day.
Since he was forced to give up Fampyra – which can cost up to €500 a month – the campaigner from Balbriggan, North Dublin, has needed a carer for three extra hours a day and has spent the past few weeks in hospital.
Like so many MS sufferers who got a new lease of life thanks to the drug, he was devastated when he discovered last year his free prescription was ending.
Gerard knew he’d never be able to afford to pay for the drug.
Out of desperation, Gerard started taking one tablet a day instead of two in January 2014 to make his stash last longer.
But it ran out at the end of January this year and his condition has deteriorated since.
Blasting the “cruel” HSE from his hospital bed yesterday, he said he is now costing the State more than if they had funded Fampyra.
He fumed: “When I first got on Fampyra I had to fight my neurologist for it because it wasn’t licensed so I got it under what’s known as compassionate use and I responded pretty well to it.
“It provided symptomatic relief and it made the difference to being able to get off the bed and get to the toilet by myself.
“So yes I was pretty devastated when I found out it was being withdrawn.
“As soon as I stopped it, any improvements I had made reversed and since January my care needs have gone up by 50% so it’s actually costing the government more now to look after me.”
A policy change this year has meant that MS patients are given Fampyra for free for just a month, then told they have to pay for it if they want to continue.
One Limerick woman who contacted the Irish Mirror revealed she stood up for the first time in two decades after taking Fampyra for just a fortnight.
But because she can’t afford the estimated €400 a month she’d have to pay to stay on Fampyra, the 41-year-old is back to square one. She accused the HSE of “teasing her” by showing her how good life could be if she was rich.
Speaking to the Irish Mirror yesterday, Gerard said: “I’m disgusted at the Government not doing the right thing. It seems to me they’re very good at keeping the people who need help down and it’s appalling.”
A HSE spokeswoman said the executive is considering how to roll out a scheme where only patients who respond positively to Fampyra would get it funded.
She added: “In May 2013 the HSE decided that it could not approve the reimbursement of Fampridine under the GMS or other schemes as the
manufacturer had failed to demonstrate or provide any formal justification for the prices proposed.”
She added HSE’s decision was in line with other European countries.
Story Source: The above story is based on materials provided by IRISHMIRROR
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