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One of my best friends has a rare blood disease that is usually fatal withing 10 years of diagnoses(he is on year 11). However recently there has been found a possible cure or treatment to combat the disease. Although there is a new cure/treatment to obtain it requires and astronomical amount of money. Even in Canada where we are praised for our health-care system my friend has fallen through the cracks because of the price tag of the treatment.
He is currently on a treatment that is not very effective and has serious consequences after long term use (e.g. more than 1 year) and he needs this medicine to continue to live a full life.
The drug company charges this huge price for there cure because of the illnesses rarity and that there is not a huge target market and they say for them to make profit on their investment of finding a cure they need to charge this impossible amount to pay for a regular citizen.
He is currently trying to get the Provincial government to cover his drug costs but so far there has been little progress on that front.
Article
So any thoughts or ideas would be helpful and just wanted to create awareness of rare illnesses that fall through the cracks because of cost.
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Wow, that is really sad and inspiring. I hope your friend can continue to fignt this, and that somehow he can get the medicine that he needs. Not sure what can be done, but i am sure that something will happen.
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I thought Canada had universal healthcare? Or is this friend in the US?
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On June 22 2011 11:27 Barrin wrote:
Wow that's crazy...
I know that for desperate cases like this you can get a lot of sympathy (and donations) by doing things like blogging or maybe even youtube videos.
It cost $500k a year. Poor guy is screwed
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Is the new drug significantly more promising than the old stuff? Like Barrin said you can always organize a charity drive; if enough caring people work hard enough, you'll get the money eventually.
Edit: 500k a year? maybe not.
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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...
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On June 22 2011 11:32 BlackJack wrote:Show nested quote +On June 22 2011 11:27 Barrin wrote:
Wow that's crazy...
I know that for desperate cases like this you can get a lot of sympathy (and donations) by doing things like blogging or maybe even youtube videos. It cost $500k a year. Poor guy is screwed
Dear god $500k/year definitely constitutes as outrageous. Wow well the only thing I can think of is for your friend to make a really popular iphone app. You can get millions if its really good. Feel bad for your friend though, hopefully he can figure something out. It's sad when something can be done but money gets in the way.
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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.
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On June 22 2011 11:32 BlackJack wrote:Show nested quote +On June 22 2011 11:27 Barrin wrote:
Wow that's crazy...
I know that for desperate cases like this you can get a lot of sympathy (and donations) by doing things like blogging or maybe even youtube videos. It cost $500k a year. Poor guy is screwed
Hope he finds a way to get his treatment, sounds like a terrible situation he's in.
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On June 22 2011 11:39 GreEny K wrote:Show nested quote +On June 22 2011 11:32 BlackJack wrote:On June 22 2011 11:27 Barrin wrote:
Wow that's crazy...
I know that for desperate cases like this you can get a lot of sympathy (and donations) by doing things like blogging or maybe even youtube videos. It cost $500k a year. Poor guy is screwed Hope he finds a way to get his treatment, sounds like a terrible situation he's in. You should read the article in the OP.
Edit: You edit fast. 
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It takes ~$1 billion for a company to bring a drug to market, years of R&D, studies, and meeting FDA regulations.
When a drug is produced to treat a rare disease/condition, costs like these are unfortunate but expected.
Edit:
(I assume costs to bring a drug to market is similar in Canada, but I'm less familiar with the specifics)
Hmm...in the article it states that someone made a complete recovery after 'a few infusions,' which are given every 2 weeks.
Assuming the cost of the drug (given in the article) is accurate, it works out to ~$19,000 per infusion.
Edit2:
Oh, misread the part where it specified that the patient has to receive the treatment for the rest of his life.
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T.O.P.
Hong Kong4685 Posts
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.
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On June 22 2011 11:31 Voltaire wrote:
I thought Canada had universal healthcare? Or is this friend in the US?
Just because we have universal health care, doesn't mean we still don't pay for medication we need to take.
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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.
Yeah but those guys make way too much money. I understand it takes excellent minds to develop this stuff but commanding 7 figure salaries for executive types, not even the researchers, and asking for more is a tad ridiculous.
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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.
not so sure about that. considering that he had this condition since he was a little kid, it might have been labeled as a pre-existing condition. insurance sure as hell would use any excuse they can to get out of a $500,000 per year expense
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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.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
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Zeesh that price sounds like it's made form unicorn blood.
On June 22 2011 11:43 KonohaFlash wrote:Show nested quote +On June 22 2011 11:31 Voltaire wrote:
I thought Canada had universal healthcare? Or is this friend in the US? Just because we have universal health care, doesn't mean we still don't pay for medication we need to take.
Just wanted to highlight this, i also do believe in recent years there have been changes to canada's version of universal healthcare in that you can pay for treatments yourself if you don't want to have to wait or something isn't normally going to get covered it's not completely up to the state.
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On June 22 2011 11:49 OsoVega wrote:
It's unfortunate that here in Canada we don't have the option to buy insurance for children in case anything like this happens.
Whoa whoa whoa hold the phone.
Canada doesn't have supplemental medical insurance??
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EPT
