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28 May 2013 @ 12:02 am
 finds the nights so beautiful here, in a quiet room with a window opening into the city.

the lights are golden, with soft green, and you can look at each window, guessing at what each occupant is doing.
very like Rear Window, but hopefully, no murders.
the last time i was here was during the hockey riots. that was... interesting.

i wrote that two weeks ago. 

i couldn't concentrate to finish, and i'm not sure i can now. though i can look at my cat and to her meows, make kissy noises at her while typing. no comparison to a few long pets. but now she's found her stinky little lamb toy she can kick senseless, i think i'll write a little of what i've been thinking about. i've mostly been thinking aloud on facebook. 

there is a peace of mind there i don't have right now.

this kalydeco business is scaring the fuck out of me. 
the waiting is worse than waiting for the actual drug. before i got it, i thought, hey, no bother, i'm at where i'm at, i have my regular meds, i can go into hospital if i need to, no problem. 
and now that i HAVE it.. i'm terrified i'm going to have it taken away. 
my mother's plan changes in June. due to my mother's union busting her drug plan's nuts, they've agreed for me to be given two months more funding. after that... we're hoping Pharmacare will have made up their mind about it in BC. 
Quebec is making their decision on the 2nd of June, and Alberta will soon follow. 
i don't think i need to go into too many details about why they might refuse it. 300,000$ per YEAR? i'm convinced BC would prefer paying for services they'd be forced to pay for, like hospitalizations, other less expensive medications and transplants. 
it scares me because i'm better. i'm WELL. i've not been this well for over 6 months, over the time i've been trying to shake the breathlessness and low exercise tolerance. i couldn't walk across a room at a normal pace without coughing. now, my mother, who has a healthcare worker's walk, finds it difficult to keep up with me. 

i don't know if it's the combination of the cayston and the kalydeco. i don't know. 

and then i think about people who have died because they couldn't get this medication, people still waiting for it, people who are desperately holding on to get the combination drug- maybe VX 809 and K. 
the children who are too young for it, because they don't know the effect it would have on young young kids (and are probably only guessing on those still not in their teens yet). 

for all my wellness, i have no energy. partly, this comes from 6 months of hermitage in not being able to move far. also, i'm terrified. no panic attacks or anything like that. 

what is this miracle outweighs itself? 

what if it stops? 
what if they say, "No, we're a bunch of cheap bastards who would prefer to see you sliced open like a carcass and have your pus-filled lungs snipped/scraped out than give you a chance at a normal life"?

it makes me think of the days where there people recoiled from monetary gain at the expense of the suffering. 
like with insulin. 
it didn't happen often, i KNOW, but the logistics of how Kalydeco happened, and how it will be paid for, rankles at me. it rankles at doctors who treat CF patients, CFers, their parents (all who have raised money for something like this, only to be given an impossible price tag). can one person purchase an entire mortgage per year?

CFers should have been given shares in the company, just to be able to afford the medication. (some of the cost). 

it was easier before they gave it to me. way easier. 
all i've been doing is talking about it. there's no room for talking about human things.
CF has always been on my back, and now it's enveloped me, mocking me. 

i've seen someone die with pulmonary fibrosis (medication caused, not another reason). i don't want to die that way. 

caseytalkcaseytalk on May 28th, 2013 05:24 pm (UTC)
It's so wrong that people have to face such issues. $300K/year is impossible for anyone other than the wildly wealthy. They will HAVE to change the pricing on it. How many fabulously wealthy people have CF, and the strain of CF that responds to K? It has to be a tiny number of people, if any. The K people will have to bring the price down. That the research was funded so heavily by donations makes it particularly egregious.

Hugs. It's wrong. Just. . . wrong.
addyit: come to addyaddyit on May 28th, 2013 11:31 pm (UTC)
the price is up because it will only help, on its own, 4% of the CF population. i think there are a baker's dozen in my province.
the first person on it in my clinic must be rolling in it, for she went to the US when it first became available and is paying for her medication herself. i'm the 4th.
they want to milk as much out as they can before the medication becomes generic. trouble is, the drug that they'll use with the regular population (in combination with K) may be ready before then... 2 years, tops, even with the red tape. who knows what they'll charge for THAT.
Diane: KittehYinYangmissdiane on May 28th, 2013 05:43 pm (UTC)
With all the bullshit and the loopholes and the unwillingness to take that chance that something NEW might work, it's amazing that people even try to discover new cures and treatments for things nowadays. Thankfully there are still some stubborn researchers and doctors and other patient advocates still around and I hope they still are for a long time.

I'll keep my fingers crossed that they approve it for BC soon, very soon.
addyit: come to addyaddyit on May 28th, 2013 11:32 pm (UTC)
this medication may help people with CF, COPD, lung cancer... another variant is being tested for muscular dystrophy.
veganhothead: dead parrotveganhothead on May 28th, 2013 10:07 pm (UTC)
What Casey and D said. Right now I can't say it any different. But I will say:

...but hopefully, no murders.

You are awesome!
addyit: come to addyaddyit on May 29th, 2013 12:34 am (UTC)
not yet. :-(