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Fampyra Making Headlines

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Monday May 26 2014 11:41 AM

MS Ireland raises topical issue

On Friday, 23rd May MS Ireland featured on RTÉ's Morning Ireland and the Six One News to voice rising serious concern about how the changes to the accessibility of Fampyra will affect the lives of people with MS.

People receiving Fampyra, for the symptomatic treatment of walking impairment, were left reeling following the announcement that from 1st July Fampyra will only be available at a personal cost of between €225 and €400 per month. This ongoing cost would be prohibitive for many who have been receiving the treatment for free up to this point on a named patient basis.

Morning Ireland journalist Justin McCarty interviewed two MS Ireland spokespeople around the issue. Mayo natives Seamus Burke and Sharon Dillon spoke in depth about how their daily lives have greatly improved since first starting the treatment.

Both felt that the drug had improved their mobility to the point that simple daily tasks they could not accomplish before were now much easier. In a statement that echoes many others Seamus and Sharon both saidthat they would not be able to afford the drug at the cost quoted to them.

Ava battles, MS Ireland Chief Execuitve, commented about how the drug allows those using it to become active members of society and without it they will lose their ability to remain independent. Neurologist at St Vincent's Hostpital Dublin, Dr Chris McGuigan highlighted the improvements in mobility and quality of life for MS patients using Fampyra.

Despite having previousl been denied by the National Centre for Pharmacoeconomics (NCPE) at St. James’s Hospital, Clinical Director Michael Barry commented that the decision may be revised if new figures showed the drug helped more people than originally thought – based on the current figures 1/3 of patients using Fampyra saw an improvement on the drug. He also said that the decision may also be revised if Biogen Idec reduced the price of the drug.

We will provide further updates as progress is made.

Further information

 

Author: MS Ireland

Tags: msireland, morningireland, rte, avabattles, fampyra, chrismcguigan, biogenidec

Comments

Maura Finucane- Murphy

Friday June 06 2014 20:05

The drug Fampyra which has a noticeable good effect on the mobility of M.S. patients we would ask the H.S.E. to please make this drug available through the medical card system five

Louise Kiely

Monday June 09 2014 13:15

I have been taking Fampyra since January of this year and haven't had half as many problems with walking since. I was falling over my dropped foot regularly, (up to 3 times a day), and since I started Fampyra I haven't fallen over once. I can now even do the simple task of putting on and taking off my shoes without the help of my 6 year old daughter. It is expensive and I dread the day that I can't afford it anymore. If the H.S.E. need proof of this drugs worth I would be happy for them to visit my home and see the effects of it. Is there a petition yet to have it included on either the drug payment scheme or the long term illness scheme? Sign me up if there is!
Sincerely
Louise Kiely

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