Posts tagged ‘HSE’

The joy of Fampyra approval!

If James Reilly burst my balloon last year, Leo Varadkar just huffed and puffed and blew it right back up again!

See post where I asked for your help in signing a petition – appealing to the Irish government for funding the MS drug Fampyra, in May 2014.

In a statement issued today, the Irish Health Service Executive (HSE) stated that they have now reached an agreement with the manufacturers, Biogen Idec, to supply the drug Fampyra for patients who have responded positively to it on a trial basis.


In short, we won. The petition and online campaign carried out over the last year, were undoubtedly pivotal in repeatedly forcing the Fampyra decision back onto HSE and Biogen desks. Well, I like to think we had some influence. A big thank you and congratulations again to Triona who set up the petition, which received a whopping 3,874 signatures!

To put it mildly… I’m delighted!

For MS patients in Ireland, it means a drug that had proved to be very effective in initial trials, but had been declined for funding under any existing schemes within the Irish health system, has today been made available again through the Long term Illness scheme. There’s a cheerful sounding scheme in which I am a VIP Gold Lounge lifetime member.

Put simply, for MS patients this drug can mean the difference between being able to walk and not being able to leave their bed or chair.

Fampyra worked for roughly 50% of MS patients who partook in the trials, and when it worked, it WORKED! Taking two little tablets daily, could improve a patient’s mobility to the point that simple daily tasks they could not accomplish before were now much easier. For me personally, Fampyra improved my balance and a tremor in my left arm, no biggie you might think, but it made a big difference to my daily life.

The HSE expects to confirm the reimbursement date soon, but a Department of Health source said the scheme is likely to begin next month.

The bestest of best news! Queue happy dance…

MS Ireland have recently launched a handbook which is designed to help MS Patients in Ireland in understanding what their treatment options and rights are as well as giving practical advice on how to engage with the health system to ensure that patients have access to the medicines that are right for them.

You can download it here Accessing Medicines Handbook

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