MULTIPLE sclerosis sufferers are facing a monthly bill of up to €500 for a drug that they describe as "revolutionary" in helping them to walk.
The drug Fampyra has been made available free in the past two years to a number of patients with the disease by the pharmaceutical giant Biogen Idec.
However, this will finish at the end of June.
Patients whose disease has left them increasingly disabled said the drug has resulted in a huge improvement in their mobility and walking speed.
However, an initial assessment by the drugs sector of HSE has said it worked for just one-third of patients and would cost around €7m annually in five years, meaning it will not be included in any state scheme.
A spokeswoman said it is now up to the drug manufacturer to resubmit an application to have it assessed again.
Fintan Lambe (38), a journalist with the 'Gorey Guardian' in Wexford, said the drug allows him to continue to do a job he loves, pay taxes and not need any home care.
"I am on it for nearly three years," he said.
"There was one instance where I could not get it for two weeks. In that short time I went from using one stick to needing two sticks to walk.
"If I forget to take one of the tablets I am very unsteady and can barely walk. It gives me the strength to lift my feet up steps and basically get around the house and get in and out of work. In the evening when I have a double dose in my system I can even climb a flight of stairs."
Fintan said it also improved his balance and reduced his risk of falling.
"I have gone on to secondary progressive multiple sclerosis and there is no cure.
"All I can do is hope that it will not get bad quickly."
Fintan said he would pay around €240 a month for his supply from July and although it was a financial strain given other costs of the disease, he would fund it himself because it was so essential to him.
However, along with others who have benefited, he is appealing to the HSE to re-examine the drug for inclusion in its schemes as many people would not be able to afford it.
The drug could cost around €500 a month in some pharmacies although the McCabe chain has already said it would provide it at €278 with no mark-up.
A spokeswoman for the HSE told the Irish Independent that Biogen Idec failed to demonstrate or provide any formal justification of the prices proposed in May 2013.
"The HSE decided that it could not approve the reimbursement of Fampridine (Famprya) under the GMS or other schemes. Biogen Idec was formally notified of this decision.
"It is open, and still is, to Biogen Idec to submit a revised application," she added.