Yep, it’s time for another rant!
If you’ve been reading my blog posts, you know how many problems there has been with the medication my son receives and how many times we have had to switch brand because all of a sudden a pharmaceutical company doesn’t make it anymore and so forth.
I have to call the pharmacy to order these pills once a month so today I called as I always do.
The pharmacist asks me what exactly I had to order (she had Tobias’ security number and was standing with his journal) but I understand her confusing, I’m just as confused as her if not more. Because the last time I had to call in to order the medication, I didn’t get what they told me because in the meanwhile the existing company couldn’t deliver anyways. Result: new pills again and a new (high) price.
The pharmacist called their wholesaler and got back to me. She told me that none of the two ‘old’ brands I usually buy is available anymore.
Really? Why am I not surprised?!
BUT if I have complained about how expensive the medications (folate pills) have been, I would soon be shocked!
Tobias has to get 3×15 mg each day and normally that’s 3 pills but no no! Since we can only get the new pills (Isovorin) containing 7,5 mg he now has to have 6 pills a day!
And the price?
10 pills costs around $65,5 and my son needs 6 pills a day! That means I would have to get new pills each day in order to have his doze at home all the time. $65,5 x 30 = $1965 each month!
Who can pay that? Not me, that’s for sure!
In a year and a half I’ve spent: $2620 on medication for Tobias. But luckily in Denmark, we’re fortunate (because of our extremely high taxes). If you have a sick child, you can get some of the money back if you use more than a certain amount so I went down to my son’s caseworker and handed her all the receipts. She called me some days after and said that she couldn’t do anything because normally they don’t give anything back when the amount is that high?! Hmm, what? No, apparently there’s a special arrangement for people getting the same medication every day (if they’re chronically ill) and I should have asked for that solution. But how on earth do I seek for something I didn’t know existed? I’ve even asked both doctors, people at the pharmacy and the old caseworker we had, if there was any way I could get help with the payment of the medications and the answer was no!
How screwed up is that?
I’m perfectly aware that people in other countries can’t get any help whatsoever when it comes to payments etc and maybe you’ll read this and think I’m ungrateful and that’s fine but since I live in this country where our taxes are damn high in order for people to receive all kinds of help, I would expect that when I need it as well!
Hopefully I can apply for the ‘chronically ill’ grant for my son because otherwise I have no clue on how to get these pills for him!
It makes me extremely angry and frustrated not only the price, but the fact that they change his pills all the freaking time! They say that the content of the pills are the same. Yeah that might be true but why is it that when I read the leaflet that there’s always something ‘extra’ in whatever pills we receive? I’m pretty sure it’s not healthy for my son’s body to get different pills all the time! It needs to be stable. Next thing that annoys me and this is the worst part! Why on earth are the doctors not checking if my son’s body even absorbs the pills? I’ve said it so many times. It doesn’t matter if the level of folate is normal in his spinal fluid when you take a spinal biopsy, it needs to ‘travel’ throughout his brain and body as well but no no the doctors keep saying that’s not the deal. Hmm, why is it that every one abroad tells me then? Are you just that damn arrogant and think you are freaking god? Stop the arrogance and start working!
You haven’t found the answer to my son’s illness so how dare you keep saying no to check if he’s absorbing them?
If it’s about the economy of it all, I’m pretty sure that the government would appreciate it a lot, if a doctor finds out if Tobias absorbs the pills or not. If the case is, that he doesn’t then there really isn’t any reason to keep giving him these pills, no reason for me to pay a ridiculous amount of money each month and no reason for me to seek for even more help with financing the pills! See, win win!
The last time I asked the doctor how they find out if he absorbs the pills or not, she simply just said:
“Whenever you feel like it, you can just stop giving him the pills and then time will tell if he gets sick or not. If he does get sick, that must mean that his body did absorb the pills and needed them and he if doesn’t get sick, then he’s developing the folate himself.”
NB: Normally, we develop folate ourselves. A couple of years ago, Tobias had a spinal biopsy and they discovered that he had almost zero levels of folate in his spinal fluid. Then he started getting folate pills. After almost a year, he had another spinal biopsy and now the level of folate was normal. But no doctor thought about looking into why he was missing it in the first place or if he’s developing itself or if the pills are the reason for the level of folate.
So many things are wrong with the doctor’s answer and really time will tell?!
1: If my son gets sick? He IS sick already!
2: How sick does he has to be before you do something?
3: What exactly is a doctor’s role in all of this? Hmm, I would think, the doctor should be the one giving me answers! Not the other way around!
4: I am NOT gambling with my son’s life! Before he got folate pills, he was extremely weak and I was told he wouldn’t survive so why the fuck would I ever take away the pills before knowing what the deal is?
I’m aware that there might be doctors out there with passion for what they do but I’m sorry, I haven’t met one here in Denmark. It sickens me to discover how terrible we are treating sick people in our country!
I’m just so frustrated, angry and furious!
Five years of this is starting to piss me of as you might have discovered!