Gilenya in Ireland, part 2

It’s been a tumultuous week. I didn’t win the lottery or meet my knight in shining armour, but I had my MS/neurological check-up in one of Dublin’s biggest hospitals. It created ripples of emotions, questions and very few answers and as expected, Copaxone will remain my disease modifying drug (DMD) for the next few… hhmm… years perhaps? I expected – or hoped – to hear about new drugs on the MS-horizon as there are silent whispers about more new meds coming out later this year, but none of that happened. Off I went so re-adjusting my beliefs, my hopes and my dreams. I just wasn’t happy about having to stay on Copaxone; in my eyes it just wasn’t effective anymore.

I should have known better. My neurologist has studied at one of the best Irish universities as well as Harvard, so she knows a thing or two about MS. I tend to think of myself as “an expert-patient of myself” because I know how this or that symptom feels, while my neurologist knows the place of the neurons, myelin sheets and where the damage really is in my brain. She’s the expert-expert and I needn’t have thought I’d be able to let her know how desperate I am to get back to normal life, because I am sick and tired of well… being sick and tired. “You’re doing well with your Copaxone, no change in medication for you.” That’s that. My neuro’s always been one to be straightforward, which is just the way I like my doctors so I knew there and then that asking and/or begging for more would be futile. My love-hate relationship with Copaxone will last a bit longer than expected so, and if or when Gilenya would become available, I’ll leave it for worse MSers than myself on this wonderful island of Ireland.

So onwards and upwards I go with my daily injections (bweurk… I know… The daily needles and my mind are still in full-blown war without prospect of a fine interbellum or two). Honestly, I had my mind so fixed on wanting better medication that I lost sight on how my MS really is right now. Sure, my fatigue is still through the roof, and I can still only take 2 Provigil tablets a day to keep me awake before they unscrew my head from the rest of my body. I’ve been put on more medication to tackle the daily/nightly aches and pains but they only work for a while. My vertigo is still being treated, as well as my eye pains and headaches but I wanted to get rid of all that and replace it with a super-drug. Yes… I was living in “anything-but-Copaxone-land”, that’s for sure.

Over the last 8 weeks there  has been a public outcry over Gilenya, the new first oral drug for MS, because it is not allowed by the Irish Health Executive – despite being labelled as cost-effective by the NCPE in September 2011. Because of all this I started daydreaming… what if… what if I could just get on other DMDs like Tysabri maybe? I wanted something better than Copaxone, my daily injection DMD, or if Gilenya would eventually be approved, to move over to the new wonder-drug. There’s enough choice out there now, isn’t it?

The public outcry over the HSE (Health Service Executive in Ireland) not allowing Gilenya on the Irish market due to lack of funds by the said HSE, has spawned many a good talk over the past 2 months because seriously ill people (should) have the right to proper healthcare. I’ve been interviewed by 3 different Irish newspapers myself about the issue, and the RTÉ program Prime Time showed a short documentary about what not-allowing lifesaving medication means to people who really need them. Professor Orla Hardiman talked about the benefits of allowing such medication but there was also talk of the costs to the HSE.

Hence the stance of the HSE to keep people on a waiting list for +10 months for Gilenya. How do you measure what worth medication will have if you do not allow it for certain MSers? I find it unbelievable that a health department does not calculate how much people’s lives would improve, and how they don’t think about how important being in good health is to those that are ill. So while there supposedly wasn’t any money for pivotal medication for melanoma patients and for MSers… Viagra IS funded by the Health Service Executive!

Thank god one senior member of the HSE stepped up earlier this year and said that “the money the State spends on Viagra and other erectile dysfunction medication is no longer justified.” ( Cllr Brian Meaney is a sound chap, and he realizes that the HSE is out of their depth on this. If the HSE does not have double standards, they have tripled them instead by allowing a party-drug (what would you otherwise call it?) and denying seriously ill people the right to a better health. Because let’s be honest, having erectile dysfunctions is hardly a battle of life and death, isn’t it? Viagra is just a party-drug if you compare it to the likes of Gilenya or cancer medication. I understand some men might feel very disadvantaged not being able to have sex anymore and that it can have an emotional impact on them, but hello? Since when is having sex more important than giving seriously ill people a better life?

I know this sounds terribly awful to men in this situation but people with MS… they carry a lifelong, degenerative illness inside them… emphasis on “degenerative” and well maybe the emphasis could be on “lifelong” too. They might have to quit their job because their MS is preventing them from doing any type of work anymore, whereas they could remain in the workforce if Gilenya would be approved. I am not sounding the horn for my own profit here, but I find it grossly unjust, scandalous and revolting that people are just not getting what they should to be able to live a normal life. They might end up in a wheelchair, not being able to hold their children anymore and having the need for a 24h carer to wipe you clean. Ending up alone, in pain and deprived, without the financial savings they once had and without the view on ever returning to the workforce. And this stacks up against what? Four tablets per month to be able to have sex?

I may not be physically ready yet (if ever) for Gilenya, at least I will keep on fighting for other people with MS who do really need treatment. This is a surreal disadvantage ill people have to endure because of a health department’s absolutely outlandish, ridiculous stance on this.

Again: how does Viagra stack up against life-changing drugs for people with a degenerative, life-long illness? My choice is biased but it’s one quickly made. It’s now up to you HSE. Just for once, be the change you want to see in the world.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2012. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

8 thoughts on “Gilenya in Ireland, part 2

  1. whoah this blog is magnificent i really like studying your
    posts. Stay up the great work! You understand, a lot of individuals are searching around for this information,
    you could aid them greatly.

  2. Usually I do not read article on blogs, however I would like to
    say that this write-up very pressured me to try and do it!

    Your writing taste has been surprised me. Thank you, quite nice post.

  3. Very sound writing. I’m sure there is need to voice these concerns and I wish you the strength to continue doing so. All the best.

    1. Thanks for taking the time to read this Anna! There is a big need because a lot of people are missing out on medication that can help them forward in life. Thanks for your Rhodes card! It’s hanging proudly on the fridge :) Still missing you!

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