It’s been a tumultuous week. I had my neurological checkup 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 while. Off I went so re-adjusting my hopes.
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. In short, she’s the expert, and my love-hate relationship with Copaxone will last a bit longer than expected.
Over the last 8 weeks there has been a public outcry over Gilenya, the new first oral drug for MS, because the Irish Health Executive is dragging their heels releasing it, despite it being labelled as cost-effective by the NCPE in September 2011. Because of all this I started daydreaming… I wanted something better than Copaxone. There’s enough choice out there now, isn’t it?
The outcry over the HSE not allowing Gilenya on the Irish market due to lack of funds has had people talking the past 2 months, because seriously ill people should have the right to proper healthcare. I’ve been interviewed by 3 different Irish newspapers 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 costs to the HSE were also discussed.
Hence the stance of the HSE to keep people on a waiting list for +10 months. How do you measure what worth medication will have if you do not allow it for certain people with MS? I find it unbelievable that a health department cannot envisage how much people’s lives would improve, and how they don’t see how important being in good health is to those that are chronically ill.
While there supposedly wasn’t any money for pivotal medication for melanoma patients and for people with MS, 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 realised that the HSE is completely out of their depth on this.
If the HSE does not have double standards, they have tripled them instead by allowing a good-time-drug and denying seriously ill people the right to a better health. Having erectile dysfunctions is hardly a battle of life and death, compare it to Gilenya or cancer medication. I understand some men might feel very disadvantaged not being able to have intercourse but since when is having sex more important than giving seriously ill people a better life?
People with MS carry a lifelong, degenerative illness, emphasis on “degenerative” and “lifelong”. 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.
It’s grossly unjust 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.
© WVE and Ireland, MS and Me, 2011-2013. Unauthorized 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.