“My life would grind to a halt without Fampyra. I would lose my independence and, for me, that would be a disaster,” said the mum of two from Killeeneen, Co Galway.
Since July last year, Fampyra has only been available to people with multiple sclerosis who can afford to pay for it.
Rosaleen has paid €3,850 to keep taking the drug she previously received for free on a ‘named patient’ basis as part of two and a half year medical trial.
“I have been paying my chemist €275 every 28 days for the drug since August last year – I got the drug free for some reason in July. My chemist gives me the drug at cost price. I checked the price of drug in other chemists and one was charging €320.”
Rosaleen, 61, said she would not be able to walk very well if she did not take Fampyra: “I would be able to drive my car to the supermarket but that would be no good if I could not walk around the store.”
Her daughter, Caitriona, launched a campaign on Facebook last summer in a bid to get the HSE to cover the cost of the drug for her mother. Caitriona said she was overwhelmed by the support from family, friends, local politicians, the Galway branch of Multiple Sclerosis Ireland and strangers.
Because it is expected that the HSE’s reimbursement scheme will begin next month, Rosaleen said she would rely on a friend to give her some of her own supply of Fampyra to tide her over.
“Hopefully, I will get through the month but, if the worst comes to the worst, paying another €275 will not kill me. If it is to be the last time I will have to pay for the drug, I can’t complain.”
The HSE said it expects to confirm the reimbursement date soon. It pointed out that it will repay the cost of the drug where people with MS have responded positively to the drug.
MS Ireland chief executive Ava Battles said people who had been forced to live without the drug, even for a short period of time, had found that their ability to complete even the simplest of tasks was severely restricted.
Ms Battles said MS Ireland had been calling for access to this approved treatment on behalf of their members because the drug gave them increased mobility and a better quality of life.
“We are thrilled that Fampyra is now accessible for those who respond to the drug,” she said.
Consultant neurologist Dr Chris McGuigan, one of the investigators in the clinical trials in Ireland, said Fampyra was the only therapy available to treat walking disability associated with MS.
“I am delighted that people living with relapsing and progressive MS may benefit from this treatment,” said Dr McGuigan.
Meanwhile, the Irish Pharmaceutical Healthcare Association is to propose an early access scheme for new medicines so that Irish patients can be among the first in Europe to have new medicines in a way that is affordable for the State and commercially viable for pharmaceutical companies.