Hopes rise for Galway MS sufferers after price breakthrough on wonder drug

Hundreds of people in Galway who suffer from Multiple Sclerosis (MS) are keeping their fingers crossed that they will soon have a ‘wonder drug’ made freely available to them again.

Deputy Noel Grealish said that there had been a breakthrough in talks between the makers of the drug Fampyra at the HSE on the price of the life-changing drug and called on the Government to immediately make it available.

In Galway, between 400 and 500 people live with the progressive neurological condition. With 8,000 living with MS, Ireland has one of the highest incidences in the world.

Pharmaceuticals giant Biogen Idec had made Fampridine, branded Fampyra, available free of charge to people with MS in Ireland for almost three years as part of a trial — studies have shown it greatly enhances the ability to walk among a substantial number of MS sufferers.

However, the free trial ended last July after the drug was licensed in Ireland — and a dispute between the company and the HSE over price meant it wasn’t provided under the long-term illness scheme.

Galway West Independent TD Noel Grealish, who has raised the matter with the Minister for Health, said that with agreement secured on a price for the drug, there was no reason to further delay its free availability again.

“People with MS who had been receiving this drug for two and a half years up to last summer were left with no option but to fork out anything up to €400 a month if they wanted to continue to get Fampyra.

“Many of these people would, as a result of their condition, have very limited means and many had to take the traumatic decision to give up the drug entirely.

“This was a cruel blow for people whose mobility and independence had been greatly improved by this drug. It doesn’t actually cure the illness, but works in such a way that people’s walking ability is greatly improved and it can make all the difference in the world to their lives.

“I have tabled a Parliamentary Question on this issue and I intend to raise it in the Dail with the Minister for Health — I see no reason to delay making this drug freely available again now that there has been a breakthrough on the price negotiations,” added Deputy Grealish.

To the fore in highlighting the plight of the thousands of people with MS whose lives could be transformed by the drug is Galway MS campaigner Rosaleen Rafter, from Killeeneen, Craughwell, who made national headlines when she raised the matter during the People’s Debate with Vincent Browne in Galway in April.

This week, she revealed that she has had to spend €3,300 on the purchase of the drug since the free trial ended last summer.

See full story in this week’s Connacht Tribune.