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Comment Re:what the unholy &^%$#!!!! (Score 1) 311

$89,000/yr for deflazacort? Big Pharm clearly has the US health industry blindfolded, bent over and reamed but good doesn't it? My son has Duchenne's Muscular Dystrophy and is taking deflazacort for it. It hasn't been approved for general prescription here in Canada, but getting approval for it to treat DMD is a straightforward rubber stamp through the exceptional access program. Because it isn't formally approved, we have to pay for it and then get reimbursed for it, Also because it's an EAP drug, we're paying only a little over wholesale. Currently we pay 85$ for a three month supply, or 340/yr. That includes shipping from the pharmacy associated with the research and teaching hospital my son is being treated by.

1) Another Canadian DMD dad here. I almost hope that Deflazacort doesn't get approved in Canada. I couldn't afford it then! 2) My son is eligible for Etiplirsen - but there's no way I can afford $300k+ per year. My health care insurance only works on drugs available in Canada. 3) I've testified at the FDA Adcom for a drug in this rare disease world. What a headache. The degree of profit mongering, paperwork generating hurdles that are out there are mind blowing. I don't know if it's corruption, the free market gone wild, self-important bureaucracy, or if the circus was in town. But I can tell you that the FDA process ESPECIALLY for rare drugs is screwed up. I don't have answers. I do have a couple of thoughts though. 1) Hug your kids. Time can be short. 2) Point all the fingers you want at the Canadian medical system - I'm not complaining. (and I see a LOT more of it than 99.99% of the people whining and complaining about it) For the most part - I get to make life altering decisions for my family without having to worry about the bill.

XBox (Games)

Modded Xbox Bans Prompt EFF Warning About Terms of Service 254

Last month we discussed news that Microsoft had banned hundreds of thousands of Xbox users for using modified consoles. The Electronic Frontier Foundation has now pointed to this round of bans as a prime example of the power given to providers of online services through 'Terms of Service' and other usage agreements. "No matter how much we rely on them to get on with our everyday lives, access to online services — like email, social networking sites, and (wait for it) online gaming — can never be guaranteed. ... he who writes the TOS makes the rules, and when it comes to enforcing them, the service provider often behaves as though it is also the judge, jury and executioner. ... While the mass ban provides a useful illustration of their danger, these terms can be found in nearly all TOS agreements for all kinds of services. There have been virtually no legal challenges to these kinds of arbitrary termination clauses, but we imagine this will be a growth area for lawyers."

Comment Re:Be useful. (Score 2, Insightful) 381

This is a winner. Last Christmas, I put "spend $25 doing something nice for a complete stranger" on my Christmas list. Best Christmas gift I ever got. A couple stories of people who had something done for them for no reason at all. The stories were priceless, and made the turkey taste all the more better. If the poster doesn't send you his contact info, prove your geekness by tracking him down yourself.

Comment Funny story - Power (Score 1) 298

Had a client that had some outsourced rack space. They had spent some time ensuring relatively HA for their cluster. They chose a hosting provider that provided redundant network connections, UPS, etc. This is what happened: - There was a fire in the power conduits under the street taking down a big piece of the electrical grid - UPS kicked in - servers stayed up - Building was on a generator, so when power to the building when out, the generators kicked in - (lots of fuel for the generators) - Fire department showed up, and started to put out fire under the street - Hydrant use dropped water pressure - Reduced water pressure dropped cooling ability of the generator - Generator shut off to prevent damage - UPSs ran down quickly - Servers crashed hard Nobody included the city WATER supply in the redundancy plan.

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