$89,000/yr for deflazacort? Big Pharm clearly has the US health industry blindfolded, bent over and reamed but good doesn't it? My son has Duchenne's Muscular Dystrophy and is taking deflazacort for it. It hasn't been approved for general prescription here in Canada, but getting approval for it to treat DMD is a straightforward rubber stamp through the exceptional access program. Because it isn't formally approved, we have to pay for it and then get reimbursed for it, Also because it's an EAP drug, we're paying only a little over wholesale. Currently we pay 85$ 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.
If the NSA is reading my e-mail, they will quickly discover that I "ne3d t0 lern to satisfy my w0man" and that my "pen!s is 2 small" and I need to buy some "v!agra for cheep!". I hate that. An invasion of my most intimate privacy.
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.
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.
I've been thinking about this topic for a while.
It almost always degenerates into a "I paid for X mbps, I should get to use it 100% of the time" vs. "You're killing my connection, and my XYZ traffic is getting hit even though I'm a good consumer, we should pay for each bit we use, and let the market sort it out."
What if we implement a QoS service level based largely on the existing pricing model. When you subscribe, you get a certain bandwidth of traffic that you are (almost) GUARANTEED (as if you were (almost) leasing a T1 to yourself) The ISP doesn't mess with it. The rest of your traffic is "best efforts" at between X and Y mbps. Let the ISP shape the "best efforts" bandwidth in whatever way they feel brings the best average consumer experience. Let the customer choose if they want to use their guaranteed traffic to surf the web, run VOIP, Games, BT etc. That way I'm not limiting your BT, and your BT isn't killing the voice quality of my phone.
Everyone talks like QoS, shaping, and throttling is a bad thing. I've used all 3 tools on my own LAN to IMPROVE the connection of my network for ALL it's users. Sure some HTTP traffic gets delayed while Voip jumps the queue, and when there's heavy surfing, BT slows down. Network bandwidth is a finite resource. Burning it up like fossil fuels in the 60s is a bad long term idea.
I can't afford a guaranteed bandwidth connection at home. I'd much rather participate in a MUCH bigger shared and shaped pipe than be stuck with what I can afford to buy all for myself.
I run VOIP over a cable connection, and fought with quality of voice call whenever I e-mailed out a large attachment, or had my file server DFS sync in the background.
- I found that QoS on the router by itself didn't help a whole lot. It made a small difference, but not the big one I was expecting.
- upgrading my bandwidth made a significant difference, even when doing large transfers. There was more space for the VOIP packets to "slip in", I guess. Still not acceptable performance though.
- throttling my upstream to 90% of my bandwidth made all the difference in the world. I was no longer creating a queue at the ISP end where apparently VOIP packets (being UDP?) were being bypassed by the TCP traffic I was sending. Even high priority UDP were below normal priority TCP.
So - my solution - which works for large outgoing transfers (e-mail and DFS sync) - is to get a Linksys WRT54GL and put dd-wrt on it. Set it up so that the VOIP device is the highest priority for QoS. Then set it up to limit your upstream traffic to 90% of your actual upstream bandwidth.
I use this for my daily use business phone. (remotely hosted VOIP switchboard)
I'm pretty sure, you WILL see logos on the athelete's gear. But you'll only see logos from the official sponsors. This is done to protect the sponsors, who have kicked in millions of dollars for the exclusive rights. Same with advertising inside the venues. It's there. But only for those who ponied up. Not letting anyone else have their logo there protects the millions that the sponsors kicked in.
But this isn't all that bad sometimes. Imagine how much the public taxpayer would be on the hook if companies like Lenovo weren't kicking in 80 million a piece. 80 million is a LOT of revenue to offset staging an event.
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$89,000/yr for deflazacort? Big Pharm clearly has the US health industry blindfolded, bent over and reamed but good doesn't it? My son has Duchenne's Muscular Dystrophy and is taking deflazacort for it. It hasn't been approved for general prescription here in Canada, but getting approval for it to treat DMD is a straightforward rubber stamp through the exceptional access program. Because it isn't formally approved, we have to pay for it and then get reimbursed for it, Also because it's an EAP drug, we're paying only a little over wholesale. Currently we pay 85$ 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.
"The closest bathroom is a quarter-mile away" and "I bring a water jug to campus and fill it up" pretty much says it all.
If the NSA is reading my e-mail, they will quickly discover that I "ne3d t0 lern to satisfy my w0man" and that my "pen!s is 2 small" and I need to buy some "v!agra for cheep!". I hate that. An invasion of my most intimate privacy.
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.
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.
I've been thinking about this topic for a while. It almost always degenerates into a "I paid for X mbps, I should get to use it 100% of the time" vs. "You're killing my connection, and my XYZ traffic is getting hit even though I'm a good consumer, we should pay for each bit we use, and let the market sort it out." What if we implement a QoS service level based largely on the existing pricing model. When you subscribe, you get a certain bandwidth of traffic that you are (almost) GUARANTEED (as if you were (almost) leasing a T1 to yourself) The ISP doesn't mess with it. The rest of your traffic is "best efforts" at between X and Y mbps. Let the ISP shape the "best efforts" bandwidth in whatever way they feel brings the best average consumer experience. Let the customer choose if they want to use their guaranteed traffic to surf the web, run VOIP, Games, BT etc. That way I'm not limiting your BT, and your BT isn't killing the voice quality of my phone. Everyone talks like QoS, shaping, and throttling is a bad thing. I've used all 3 tools on my own LAN to IMPROVE the connection of my network for ALL it's users. Sure some HTTP traffic gets delayed while Voip jumps the queue, and when there's heavy surfing, BT slows down. Network bandwidth is a finite resource. Burning it up like fossil fuels in the 60s is a bad long term idea. I can't afford a guaranteed bandwidth connection at home. I'd much rather participate in a MUCH bigger shared and shaped pipe than be stuck with what I can afford to buy all for myself.
I run VOIP over a cable connection, and fought with quality of voice call whenever I e-mailed out a large attachment, or had my file server DFS sync in the background.
- I found that QoS on the router by itself didn't help a whole lot. It made a small difference, but not the big one I was expecting.
- upgrading my bandwidth made a significant difference, even when doing large transfers. There was more space for the VOIP packets to "slip in", I guess. Still not acceptable performance though.
- throttling my upstream to 90% of my bandwidth made all the difference in the world. I was no longer creating a queue at the ISP end where apparently VOIP packets (being UDP?) were being bypassed by the TCP traffic I was sending. Even high priority UDP were below normal priority TCP.
So - my solution - which works for large outgoing transfers (e-mail and DFS sync) - is to get a Linksys WRT54GL and put dd-wrt on it. Set it up so that the VOIP device is the highest priority for QoS. Then set it up to limit your upstream traffic to 90% of your actual upstream bandwidth.
I use this for my daily use business phone. (remotely hosted VOIP switchboard)
I'm pretty sure, you WILL see logos on the athelete's gear. But you'll only see logos from the official sponsors. This is done to protect the sponsors, who have kicked in millions of dollars for the exclusive rights. Same with advertising inside the venues. It's there. But only for those who ponied up. Not letting anyone else have their logo there protects the millions that the sponsors kicked in.
But this isn't all that bad sometimes. Imagine how much the public taxpayer would be on the hook if companies like Lenovo weren't kicking in 80 million a piece. 80 million is a LOT of revenue to offset staging an event.