Another of my colleagues here at FtB has skidded off the smoothly paved road of life: Ashley Miller has been diagnosed with narcolepsy and lost her job. She’s set up a patreon account — you should go help her out. And don’t forget Dana, too.
Pharyngula
Evolution, development, and random biological ejaculations from a godless liberal
I’ve had a cold for the past week, can I get some donations too?
[I hope you can extract your head from your ass to mumble an apology, or you’re gone. I also hope your cold gets better. –pzm]
@1 I’m a white guy, can I make snarky belittling comments as well.
RettopNoj
Bless your heart.
@RettopNoj #1 So, troll, you’re seriously comparing manflu with joblessness, narcolepsy and ending up homeless on the sidewalk? Also you’re using “donations” to describe what is actually “readers and fans of a blog paying the blogger for their time and words”. Go pull the other one shorty, it has got bells on it.
Well, no. Being a troll, the backwards Jon Potter accuses Ashley Miller of lying – of having at most a cold, but wanting sweet, sweet donations.
That would be remarkably short-sighted: present company is not quite the sort of people that holds Republican fundraiser dinners. But that doesn’t matter: the point is to troll.
RettopNoj
How many fucks shall I give? Perhaps a millifuck, given that illness is a condition I’m abhorred by and would like to see an end to.
&nglt;turns out pockets&nbgt;
Sorry, that was it.
I thoroughly fucked up my html whatevers, can I get a donation from RettopNoj now?
Without knowing Ashley’s situation, it is discrimination to be sacked if you suffer from narcolepsy unless the cataplexy and sleep attacks endanger yourself or others on the job (eg. pilot, driving a commercial motor vehicle, etc..). Also there are a number of medications that successfully treat both cataplexy and hypersomnolence. Unfortunately, these drugs are expensive and without health insurance, the cumulative costs can be worse than a college debt or a mortgage. I wish we had the public option.
To add to this misery is the frightening nature of sleep paralysis. I’ve experienced this a few times and even coming from someone who rejects anything supernatural, these episodes are f—ing scary. I recall one episode of a sensation of being pinned down by a prickly Shrike (need to stay away from Dan Simmons novels). My heartfelt sympathies to Ashley.
They decided to restructure at work, my job is a casualty — it’s a lay off, not a firing. It’s just really badly timed. I work from home in communications, so I don’t even endanger myself with driving to work. The average cost of Xyrem, which is what they’re putting me on, is around $10k a month. Weeeeee!
The only thing I find upsetting is they’ve apparently known it was coming for months and didn’t mention anything when I was buying a house or just in general. So now I have a mortgage I got based on my supposedly secure (based on performance reports) job.
I’ve apparently had undiagnosed narcolepsy since I was a teenager, it’s just gotten more symptomatic in the last year.
Thank you PZ, for posting!
Oh, man. So sorry you have to deal with all this, Ashley. If you’ve been suffering since young adulthood, on some level it must be a relief to have a diagnosis and understand what you’ve been struggling against. But bum luck all around. I don’t think narcolepsy is something the average person ever worries about. I admit, I had no idea it was a genetic disease, nor that it is suspected of being an evolutionary atavism. I hope your fortunes turn around soon. Eventually they will.
I really hope that $10k a month price-tag wasn’t influenced by a pharmaceutical rep giving your doctor a steak and potato lunch. If so, they should have held out for the lobster with gold-flaked truffles.
It’s the only drug that treats cataplexy with real success, and only just over 10,000 people take it, so they’ve got special leeway in what they charge because it’s an “orphan drug”. It’s basically GHB, so only one company is allowed to produce it and they just raise their prices a lot every year. 10 years ago, it cost like a tenth of what it does now. http://www.anh-usa.org/monopoly-drug-moneymaker/
The other drug they’re likely to put me on after I’ve titrated on Xyrem is Provigil or Nuvigil, both of which cost around $1000 for a one month prescription. You can buy both of them from India and have them mailed for less than a tenth that. AMERICA.
Well, kind of betting the ones from India are “cloned”, as in not from the US Pharma, but either independently invented, or stolen. But, yeah, this is one of the huge idiocies in Pharma – how much something costs the people that need it, or even if they get it, has jack all to do with what it costs to make, but whether a) its paid itself off, b) what percentage of the population needs it, so *can* pay for it, and c) if its still under patent. No one is making this stuff with pure gold and rare earth elements, or some shit that actually “cost” what they demand. Kind of makes me wonder though.. if they upped the cost of asprin, or some other “cheap” product, by like 1%, how much could they afford to drop the price on the, “rare stuff, most people don’t need.”, categories? Yeah.. like that is going to f-ing happen, any more than it does for anything else.
Well, other than, ironically, hospitals, which often get pissed on because they do, in fact, sometimes up everyone’s costs, to subsidize the drugs needed for patients that can’t afford their life saving meds.. All anyone knows about the practice, sadly, is, “It costs me too much!”, not why you pay twice as much for a pill at the doctor, than you do at the pharmacy. But then, this is the same argument some idiots make against insurance, or Social Security, or **everything else** – why, oh why, do I have to pay for someone else!!! And, all I can say to these people is, “Yeah, well, suck it up, because you might be the poor bastard that needs someone else’s traded costs some day.” Not that most of them will, for one minute, believe this is the case, until it happens.
The internet informs me that GHB (and therefore, ultimately, the important bit of xyrem) is surprisingly easy to manufacture. Seems like you can even get the ingredients legally and off the shelf in my neighbourhood, though I guess since the US won the war on drugs it’ll be a bit trickier in your part of the world.
Price of some pharmaceuticals in the US is mad though. Some guy was genuinely considering the economic practicality of chartering a cruise ship, filling it with cheap Indian generic drugs and parking it in international waters off california. Turns out it isn’t entirely crazy, but you can’t actually bring in more than $1500 or so worth of pharmaceuticals back into the US (at US prices, naturally) so it seems like a bit of a non-starter. http://www.bloomberg.com/news/articles/2015-06-01/hepatitis-cruise-india-trips-among-plans-to-save-on-1-000-pill
Cheap indian drugs won’t save the day just yet though. Too many cases of corruption, incompetence, corner-cutting and outright fraud still going on :-( http://timesofindia.indiatimes.com/india/Chhattisgarh-botched-operations-Minister-confirms-rat-poison-in-drugs/articleshow/45253635.cms
I don’t know whether this may be of use, but here’s a link to the web site for Jazz Pharmaceuticals (Xyrem maker) reimbursement assistance. These programs are a bit pathetic in there way, but sometimes they can provide useful assistance. This link has been a bit odd, hope it works: http://www.jazzpharma.com/reimbursement-assistance/
India recognizes composition of matter patents, but not process patents. Changing the process to something more efficient will lock out US/European generics, but not from India. They will legally (within India), copy your process and sell it internationally.
I should add that I don’t know anything about Jazz in particular. The majors have more room to be generous usually. (Also, “there way”? Damn commenting systems, inserting mistakes!)
I gave him 24 hours. No apology from RettopNoj, so RettopNoj is DENNAB.
Is that the cost of the drugs with insurance? I believe you are eligible to sign up for Obamacare midyear because of the layoff, and if your income will be less than 2.5x the federal poverty level for the year, you will qualify for a CSR (cost sharing reduction) plan with much lower deductibles, which could save you a lot of money when buying your drugs. You really should check it out, and note, any donations will count toward you Modified Adjusted Gross Income which is used to calculate your subsidy and qualification for a CSR plan.
I don’t know what the cost of the drugs with insurance will be, I’m still waiting to hear back from them. They’re really slow at getting this stuff together, unfortunately, so I’m in limbo trying to plan finances with no information. They haven’t even verified the prescription, which was written over a week ago.
My insurance is already through ACA, so I won’t be losing it — unfortunately, even though it’s the best available plan through the ACA, it’s not great and doesn’t cover a lot of stuff and most doctors don’t accept it, even though it’s a subsidiary of Blue Choice. I also think I wouldn’t qualify for a lower price, and I’m not sure if I would get any special enrollment since I didn’t lose my health insurance, just how I was paying for it.
Ah, okay. Having not discovered the CSR versions of the plans until I was in the process of applying for insurance last year, I just wanted to make sure that wasn’t an option you had overlooked. It’s true that you would have to earn less than $29,450 to qualify for CSR.
If you want to change your insurance (perhaps another company would cover more of your medication costs) then you might still be able to switch plans midstream, since “Had a change in income” is listed as a (possible) qualifying “life event” — there’s a screener here: https://www.healthcare.gov/screener/
If your present insurance company refuses to cover your medication, it might be worth checking out, just in case.