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Old Nov 27th 2017, 7:44 pm   #1
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Default Rare diseases and cost of medications

So there have been a few of these stories recently about folks who have a rare or less common disease and being denied access to life saving medication, although in some cases the gov't does end up covering it, but in others they refuse.

For one who has cystic fibrosis, her medication costs $250,000/yr and instead of suppressing the symptoms the drug treats the underlying cause of the disease. This drug is apparently not covered in any province.

She had coverage through her university, but the health coverage no longer covers it. (although the student association voted to provide one additional month for her, and the company who produces the drug provided a 90 day supply.)

For another also a student who has atypical hemolytic uremic syndrome she got approval for the medication eventually after the province initially said no, but this medication is covered in some provinces. Cost per year 750,000.

Apparently 60% of rare disease drugs that are approved for use in Canada are not covered in BC.





So what is a life worth? Should the healthcare system cover these medications for patients?

I believe folks with rare diseases should have access to the medications that will be most beneficial to them to treat their disease, and at the cost of these drugs, aside from the super wealthy, who could possibly pay out of pocket?


http://www.cbc.ca/news/canada/britis...imbo-1.4419928
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Old Nov 27th 2017, 7:52 pm   #2
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Default Re: Rare diseases and cost of medications

Healthcare systems have finite funding, the money has to be spent to deliver as much treatment to as many people as possible. Inevitably that means rare conditions fall outside the bounds of the system. I would not support spending $250,000/year on one patient if it meant 10 people/year could not have a relatively routine treatment. I'm not sure what $25,000 buys, a stent maybe; 10 hearts patched up and the owners back at work is more valuable to society than one very sick person kept alive.
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Old Nov 27th 2017, 7:56 pm   #3
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Default Re: Rare diseases and cost of medications

Agreed, and there should also be realistic conversations about expensive public medical care for the very elderly.

The 3/6d that they paid in every week shouldn't entitle an entire generation to millions of geriatric medical care.

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Old Nov 27th 2017, 7:58 pm   #4
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Default Re: Rare diseases and cost of medications

No easy answers on that one. Think it does have to be case by case. But the lack of transparency is a concern, health authorities should make the decision process clear to the public.
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Old Nov 27th 2017, 8:02 pm   #5
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Default Re: Rare diseases and cost of medications

One of my girlfriend's friends had his heart fail last year, and figured the province had spent over a million dollars on him before he left the hospital. Apparently no other province would have covered the treatment, so he'd have died if it had happened anywhere else.
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Old Nov 27th 2017, 8:03 pm   #6
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Default Re: Rare diseases and cost of medications

Should lifestyle choices impact public health funding? There can scarcely be a soul alive in the West who doesn't know that smoking is terrible for you, or that smoking cessation support is available... should smokers take second place in the health queue?
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Old Nov 27th 2017, 8:04 pm   #7
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Default Re: Rare diseases and cost of medications

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Originally Posted by Jingsamichty View Post
Agreed, and there should also be realistic conversations about expensive public medical care for the very elderly.
Just wait until they all want rejuvenation treatment in a few years.
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Old Nov 27th 2017, 8:15 pm   #8
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Default Re: Rare diseases and cost of medications

There are no easy answers but the wider question is 'What is the best use for most where funding is finite?'.

If the population as a whole considers that health funding is of paramount importance then it shouldn't moan about increases taxation to pay for it. Unfortunately health is not treated on an equal footing with other national priorities. Defense spending is generally not put to the question and from a government standpoint it cost what it costs and if the odd minister or 4 star general finds employment in the defense sector later in life then, well it must be because he/she deserved it.

I'm getting on a bit so I'd like funding for the elderly to be limitless but I understand that 750kpa for a single individual should not enter the realms of politics but be treated on an actuarial basis because like it or not 750k to one individual probably means that many others get less than adequate care. But it does. Hard cases make bad law and when you're presented as a heartless b*****d every night on the tv as a politician for not providing the funds then bad news = no votes when it matters.

I'd like everyone to be given the best treatment available, but sometimes it just isn't possible.
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Old Nov 27th 2017, 8:21 pm   #9
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Default Re: Rare diseases and cost of medications

Quote:
Originally Posted by Jingsamichty View Post
Should lifestyle choices impact public health funding? There can scarcely be a soul alive in the West who doesn't know that smoking is terrible for you, or that smoking cessation support is available... should smokers take second place in the health queue?
No. Otherwise judgment is needed on all lawful lifestyle choices, idiots who go to the gym each week and wear out their knees wouldn't have lower body coverage, bicyclists couldn't be treated for impotency, on and on.
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Old Nov 27th 2017, 8:22 pm   #10
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Default Re: Rare diseases and cost of medications

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No. Otherwise judgment is needed on all lawful lifestyle choices, idiots who go to the gym each week and wear out their knees wouldn't have lower body coverage, bicyclists couldn't be treated for impotency, on and on.
That's the rub.
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Old Nov 27th 2017, 9:34 pm   #11
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Default Re: Rare diseases and cost of medications

Perhaps one of the things to be considered is that the drug companies are asking insane prices for their drugs, so they can recover the research and development costs (at least that is the reason they give).

The company that makes that $250,000 a year drug sell it to other provinces fro less than that, but are also apparently being investigated for excessive charging.

Do drug companies deserve to be recompensed for money spent on research and development?


This really does open a can of worms ................ including should premature children be saved, should cures be developed for currently terminal illnesses, how much is too much to spend, etc etc
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Old Nov 27th 2017, 9:53 pm   #12
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Default Re: Rare diseases and cost of medications

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Originally Posted by scilly View Post
Perhaps one of the things to be considered is that the drug companies are asking insane prices for their drugs, so they can recover the research and development costs (at least that is the reason they give).

The company that makes that $250,000 a year drug sell it to other provinces fro less than that, but are also apparently being investigated for excessive charging.

Do drug companies deserve to be recompensed for money spent on research and development?


This really does open a can of worms ................ including should premature children be saved, should cures be developed for currently terminal illnesses, how much is too much to spend, etc etc
Of course they do, if they didn't we would not have many drugs and without the ability to recoup the costs, there would be no incentive or reason to develop these drugs.
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Old Nov 27th 2017, 10:05 pm   #13
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Default Re: Rare diseases and cost of medications

Quote:
Originally Posted by scilly

Do drug companies deserve to be recompensed for money spent on research and development?




Quote:
Originally Posted by Jsmth321 View Post
Of course they do, if they didn't we would not have many drugs and without the ability to recoup the costs, there would be no incentive or reason to develop these drugs.

So how many more extremely expensive drugs can the governments afford to fund?

$250,000 is actually a lot cheaper than some other drugs than have been on offer!
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Old Nov 28th 2017, 3:17 am   #14
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Default Re: Rare diseases and cost of medications

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That's the rub.
And to take it one stage further - people who are just waiting out their time with incurable conditions, often in great pain, and no longer want to live. If they were not forced to struggle on, but could take an easy way out of the world - how much money would that save for treating patients who do want to live?
I now its a whole different issue, but the premise is the same. Use the money for those who want to live on rather than those who don't. Not that different from use the money for those who have an immaculate vice-free lifestyle, rather than for those of us who don't.

Personally I want out of this world at the earliest opportunity, I don't want my life extended so someone else has to care for me, and if that leaves more money for treating others, so much the better.
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Old Nov 28th 2017, 10:18 am   #15
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And to take it one stage further - people who are just waiting out their time with incurable conditions, often in great pain, and no longer want to live. If they were not forced to struggle on, but could take an easy way out of the world - how much money would that save for treating patients who do want to live?
I now its a whole different issue, but the premise is the same. Use the money for those who want to live on rather than those who don't. Not that different from use the money for those who have an immaculate vice-free lifestyle, rather than for those of us who don't.

Personally I want out of this world at the earliest opportunity, I don't want my life extended so someone else has to care for me, and if that leaves more money for treating others, so much the better.
Yes, absolutely. Good point. We need to be less sanctimonious about life.
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