Posts tagged ‘Fampyra’

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 http://wp.me/p4ezB1-7P 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.

Hooray!!!!!!!!!!!!!

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 www.change.org 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

James Reilly burst my balloon!

Beware of expletive acronyms! I’m mad as hell.

In my last post, I asked what exactly I had to celebrate about living with MS. I found quite a lot to celebrate in my life, all except from the damn disease itself! I ‘celebrated’ World MS Day by sitting in a dark conference room on a sunny day, listening to speakers, chatting to friends, eating some salmon, dozing off once or twice (I blame a full tummy and warm air!), then getting out into the sunshine afterwards as fast as my legs would take me! Hooray Vitamin D here I come.

Our Minister for Health Dr. James Reilly and his department, picked a great week to dump the news on us MS patients that they will NOT be funding a new drug Fampyra, that a lot of us have been taking on a trial basis, some of us (including me) getting great results.

Picture James Reilly taking a pin to my celebratory balloon.

Hit me while I’m down, why not give me a kick too while you’re at it? Seriously… WTF?

WTF HSE?! To clarify any confusion over the acronym… HSE = Health Service Executive (of Ireland). To continue taking this new drug Fampyra will now cost me up to 400 euro per month! You have met my wayward left arm in an earlier blog post (http://wp.me/p4ezB1-2h). He’s currently queuing up at the back door of a dodgy bar on the wrong side of town. Getting ready to  paaarrrttttaayyyy!

I remember four days after starting the trial on Famprya, reaching for my glass of water with my left hand automatically without thinking (I always used my right at the time), taking a drink, and my heart skipping a beat. My son was sitting beside me and witnessed my outpouring of emotion. It was the smallest, simplest thing; my left arm wasn’t shaking any more! I phoned my dad and closest friends immediately, delight euphoria and tears of joy followed. This new drug was working! When I had calmed down enough to go to bed, my balance seemed better allowing me to pull off my jumper over my head WITHOUT having to sit on my bed, again a tiny thing, but to me it was a massive joyous occurrence.  In the following weeks my walk improved so much – my friends called me Speedy Gonzales.

Now this new drug is not being funded through any scheme within our Irish health system. I have two weeks supply left. I am keeping them for the weeks coming up to my holidays in the hope that after four days, I’ll feel benefits again. It’s bloody hard enough managing MS symptoms without an effective drug being taken off you. No chance I can afford it. I doubt many MS patients can. Only time will tell how I will be affected by it’s loss. I sincerely hope I don’t suffer many ill effects, if I do, I may have to try and fund it myself somehow. How dare civil servants within the HSE decide on a whim to reduce my chances at battling this disease? Fampyra is a drop in their Health Budget ocean! This little fish’s celebrations have been seriously dampened. WTF?

I have already been shouting, appealing and nagging about this petition on Facebook and Twitter, thank you all who have already signed it. For those of you who haven’t seen it yet, please take a moment to sign this petition, aimed at highlighting the need to provide funding through the Long Term Illness scheme for MS patients who benefit from Fampyra, to Mr. James Reilly TD, Minister for Health in Ireland.

http://www.change.org/en-GB/petitions/james-reilly-td-fund-fampyra-for-people-with-ms-in-ireland

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