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On June 22 2011 21:37 mcc wrote:Show nested quote +On June 22 2011 21:09 Arnstein wrote:On June 22 2011 20:47 mcc wrote:On June 22 2011 12:14 Arnstein wrote:
Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free. I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered. It is. Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
I have a friend with a muscular disease that is at least as expensive as this, and he only pay 300 dollars a year for his medicine. It's not the same disease, but its cost is the same, if not higher for my friend.
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On June 22 2011 21:37 mcc wrote:Show nested quote +On June 22 2011 21:09 Arnstein wrote:On June 22 2011 20:47 mcc wrote:On June 22 2011 12:14 Arnstein wrote:
Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free. I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered. It is. Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
I'm pretty sure we have a roof for how high the cost can be as well.
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On June 22 2011 11:40 T.O.P. wrote:Show nested quote +On June 22 2011 11:35 Kamais_Ookin wrote:
What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now... If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it. It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
if I was an insurance company, I would hire goons to figure out how to cause disease in the population. kachinnnnnggggggg
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I just hate when these situations happen. A person should who cannot afford to survive by himself SHOULD get help from the government. That's what the government is for right? Protecting the mass and the individual.
But I do understand how this is a weird problem if it costs so much and is a very rare case. Hope your friend will somehow make ends meet... :/
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On June 22 2011 21:52 Laevateinn wrote:Show nested quote +On June 22 2011 21:37 mcc wrote:On June 22 2011 21:09 Arnstein wrote:On June 22 2011 20:47 mcc wrote:On June 22 2011 12:14 Arnstein wrote:
Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free. I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered. It is. Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ? I'm pretty sure we have a roof for how high the cost can be as well.
Maybe, but at least the guy in the OP is under that roof 
Edit: Maybe not if he moves to Norway just to get free healthcare though. I guess the government don't want people to do this.
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Normally there are no "roofs" per person, BUT it has to be damn sure that the treatment is effective and improves the situation by a significant amount before anyone gets it. If there is doubt, well.... No Insurance/State/Whatever will pay for a Treatment as expensive as that. That is the real problem for the Health-Care institutions.
In some cases this sounds really heartless but it's the only way to make "solid" rules for the whole health-care/insurance sector... Else suddenly anything would have to be paid just on the chance that it would work.
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On June 22 2011 11:38 Igakusei wrote:Show nested quote +On June 22 2011 11:35 Kamais_Ookin wrote:
What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now... Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
Attention readers, attention readers, number have just been pulled out of an *xxxrrchhchch*. Please resume discussion with facts only, I repeat: please resume discussion with facts only.
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Would someone please change "drug" to "medicine" or "medication" in the thread title? It's misleading (especially when seen next to the Amy Winehouse thread).
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I work in the pharma industry, helping to run clinical trials. Currently a japanese company is running a £300 million trial. These drugs aren't cheap to get onto the market, and for every one that makes it 20 have failed. Not trying to justify the pricing, but if you maybe understood the actual cost of getting a drug licensed. The cost will eventually drop, and im sad to hear about your friend and I hope he gets sorted out.
Sad, but such is life... maybe if we were a communistic society it would be different but alas people like money it seems.
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The situation is the same in the UK, rare treatments are charged away from the NHS. This was highlighted fairly recently by Author Terry Pratchett who has a rare form of Alzheimers. Being a world renowned best selling author he can afford the treatment, but chose to speak out against it, because if he hadn't have been who he is, he'd have been denied the treatment.
I won't go into how he's now crusading for Euthanasia etc but it's a topic that's recently been discussed widely in Britain to do with costs, and research money etc.
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Capitalism makes me sick sometimes.. Like, sure, it may have cost ridiculous amount of time and resources to come up with the drug. But now IT'S THERE. You can simply save person's life if you give it to him. But you don't because he doesn't pay you money..
Yea, I know that's how world works (someone made a point about vaccinations not being given to people in 3rd world countries, for example, due to monetary reasons), but it's just depressing when you start thinking about it..
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Blah, you might as well complain that farmers in America aren't donating their corn to starving ethiopian children, or even to the beggers on the streets.
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As weird as it may sound, I would look into the "water cure." While I haven't done enough reading or research on the subject, I have heard of a few people who have adopted the program into their daily routines and have found that their general health has improved from it.
Even if your friend were to drink a good amount of water and not even worry about the salt intake (there is so much salt in foods now anyway), it may be something that could lead to better health. Who knows and I don't really see any downside to drinking a good amount of water other than going to the bathroom more than normal.
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Talk to some TV channel, use charity gathering funds. Usual deal in our country. People do help.
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United States43979 Posts
On June 22 2011 22:45 I_am_that_bad wrote:
As weird as it may sound, I would look into the "water cure." While I haven't done enough reading or research on the subject, I have heard of a few people who have adopted the program into their daily routines and have found that their general health has improved from it.
Even if your friend were to drink a good amount of water and not even worry about the salt intake (there is so much salt in foods now anyway), it may be something that could lead to better health. Who knows and I don't really see any downside to drinking a good amount of water other than going to the bathroom more than normal.
Water is not a panacea.
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Wow, that makes the $50k+ a year my meds and treatments run sound downright trivial, and I wouldn't be able to get those if I hadn't gotten medical retirement out of the military. That sucks indeed. As for prolonged massive doses of prednisone, that's not even fun, all the side effects get horrendous, even after just a few months. I can't imagine going as long as he has.
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Some things that need to be done (some of which are from what I'm reading):
. See if there is a country that has a reciprocal health care agreement with Canada that funds Soliris (which is why your friend is trying to get UK citizenship if i read the thread properly?)
. Get them on the global bone marrow transplant register as it seems this is the only cure. Bone marrow transplants are risky business and are horrific to go through however, so this needs to be weighed up heavily. Have their siblings tested for blood typing too. Siblings are the best chance of a blood match.
. Lobby your local politicians and engage with Canadian PNH support groups
If the TL community wants to help, get your blood tested and list your self as a bone marrow donor. You will save lives! (I have a family experience with a bone marrow recipient, its such a worthwhile thing to do).
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I'm so sorry to hear about your friend, its truly terrible, but I'm not sure what can be done.
I know its terrible to say that it shouldn't be paid for by the government, but the healthcare budget is not unlimited and $500k per year is an outrageous cost. I don't think the healthcare budget paying for it can be justified when you think about how many other lives can potentially be saved for that cost.
It really comes down to the drugs companies. They want to make money so will charge as much as they can, but if there is stronger regulation on prices they just won't develop drugs like this, because they don't think they can make a profit on them. The ball is just so far in the drug companies court. We all need the drugs companies to develop these new drugs (assuming we want to live longer) and because of that they can charge whatever they want.
The only thing to ease the overall problem I can think is an international agreement to tax the drugs companies more, and then invest that money back into funding research and lowering the costs of drugs. But that tax cost will probably come out of raising prices, so in the end would make no difference.
Again, I'm so sorry so hear about your friend. I hope somehow it works out for him. Your best bet is probably to raise awareness, possibly by creating a short film or something that can get a lot of exposure easily.
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Move to sweden, everyone can get a citizenship.
Free healthcare should solve the problem.
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This the problem guys . I understand that the companies have to make money... but with such a high cost only 1 thing can be done..
He obviously can't pay that , and so does the goverment. Because if the gov. pays for him , other people are going to complain.
So if something does happen . it must happen without the media or internet knowing about it.
He must go to the company , explain the situation and hope they will help him.
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EPT
