03-05-2005 12:34									#1
	Meds cost $17K per week? Tired of ads?

How?

Are they made of lunar minerals?

http://www.ctv.ca/servlet/ArticleNe..._35/?hub=Health

quote: Calgary boy gets help with expensive drug CTV.ca News Staff A young boy with a rare disease that requires a phenomenally expensive drug will get some temporary help with the cost from the Calgary Health Region. Mackenzie Olsen, 10, who lives on the Siksika First Nation east of Calgary, is afflicted with Hurler/Scheie syndrome. This rare disease is caused when a person lacks an enzyme called a-L-iduronidase. "Our first concern is Mackenzie's health and, as an interim solution, the Calgary Health Region will continue to provide therapy for Mackenzie," Leanne Niblock, health region's spokeswoman, said Monday. But the region wants the drug manufacturer and the federal government to address the issue, she said. Olsen had been getting the drug Aldurazyme, which replaces the missing enzyme, free as part of an international drug trial. However, the trial has ended. The boy's last treatment was Friday. The drug costs $17,000 per week. Health Canada does not cover its cost and says it is awaiting an independent review of whether it should be paid for. Lawyers were going to appear in court Tuesday to ask for an injunction requiring the region to continue Olsen's treatment. Have the health region's decision thrilled Raymond Amato, Mackenzie's father. "This interim thing is perfect,'' he told The Canadian Press. "That's all we were looking for, hoping for, but again this is just a Band-Aid on a problem until (Ujjal) Dosanjh and (Alberta Health Minister) Iris Evans sit down and figure out a solution.'' Dosanjh, the federal health minister, said Sunday he is willing to meet with Amato, but no date has been established. But Dosanjh has also said the provincial government should pick up the huge cost, while Alberta's Premier Ralph Klein said it should be the federal government's responsibility. Amato said he doesn't care who pays, so long as the boy continues to receive the treatment. "Even if he gets everything ... he's never going to be our age unless some miracle cure comes up,'' he said. Most children with Hurler/Scheie syndrome don't live past 20. Olsen has lost half his eyesight and hearing so far, but could lead a relatively normal life with treatment could lead a relatively normal life. The disease, however, is ultimately fatal. With files from The Canadian Press

I'm all for free markets, but I'm smelling a gouge.

How can $850K per year be justified for a drug treatment?

	03-05-2005 12:51									#2
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This seems to be an extremely poor use of public health funds.

	03-05-2005 13:06									#3
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It would seem to be a very poor use of anyone's health funds, unless you were very rich and had a spare $8.5 mil to splash down to keep junior alive til 20.

	03-05-2005 13:09									#4
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But the real point is, how the hell could a weeks wroth of pills be worth $17K?

	03-05-2005 14:05									#5
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Maybe the drug was über-expensive in terms of R and D and there's like 20 people on Earth who needs it.

	03-05-2005 14:31									#6
	Tired of ads?

It may cost that much. The billions spent on R&D is pretty easy to reclaim when it's a commonly used medicine. If you spend a billion dollars, but will sell a hundred million units, you only need to make a profit of $10 per unit to recoup it. However for an exceedingly rare disorder, you may only sell a few thousand units, in which case you start needs thousands of dollars per unit just to break even.

If he needs to take a few a day, $17000 a week isn't hard to imagine it costing. But sadly that's the way it works. If only one person was affected by a disorder, would it pay to use such huge manpower and costs to try to find a cure? Especially when that manpower could be used to try and find a cure for diabetes, or cancer.

Much as it seems really harsh, $17000 per week for the quality of life you'd get being half blind and deaf and knowing you're going to die at 20 seems a little much. That money could save more lives that have a higher chance of being enjoyable.

	03-05-2005 16:57									#7
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He needs a specific optical isomer. It's tricky and expensive to separate a L from a D. Plus the rareness of his disease, R and D costs, etc etc.

Modern medicine can work wonders but they don't always come cheap.

	03-05-2005 17:19									#8
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Since it is a rare disease, the replacement enzyme is probably:

1) grown in batches requiring a high level of manual guidance
2) from bacterial stock that must be continually replaced through genetic manipulation to make sure mutations do not creep in.
3) separated and purified in batches requiring a high level of manual guidance
4) created in a low yield process
5) done continuously in small batches to maintain a consistent, but small fresh supply (enzymes tend to have a very short half life)

	03-05-2005 20:38									#9
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This is a good article. If all the good things about Canada's health system that I hear from KrazyHorse are true, then you Canucks will mark this up to fulfilling the requirements for a civilized country and pay the bill happily.

	03-05-2005 20:48									#10
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I know here, many health care companies are encouraged to discover and create drugs for rare diseases and cover the costs... I think such programs should be more encouraged and even better compensated.

	03-05-2005 21:23									#11
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cost of preparation + R&D costs + greed and compensation of risk.

This price makes sense.

	03-05-2005 21:33									#12
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quote: Originally posted by DanS This is a good article. If all the good things about Canada's health system that I hear from KrazyHorse are true, then you Canucks will mark this up to fulfilling the requirements for a civilized country and pay the bill happily.

Well sort of.

The medicare program has never been a blank cheque to fund any treatment that people happen to want. But here I support the government funding the drug. Its available and the child can have a decent quality of life. If this costs 15 million dollars, so be it. We spend far more money on thisngs that are far less laudable.

I do think that the pricing should be examined so that it is reasonable but if it is expensive to discover and make, the drug company might be justified with even this high price

	03-05-2005 22:12									#13
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quote: Originally posted by DanS This is a good article. If all the good things about Canada's health system that I hear from KrazyHorse are true, then you Canucks will mark this up to fulfilling the requirements for a civilized country and pay the bill happily.

As opposed to the good old USA where we'd tell the kid to hurry up and die.

	03-05-2005 22:13									#14
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Which makes sense, *if* the money can be put to better use - such as saving multiple people.

	03-05-2005 23:28									#15
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quote: Originally posted by Kuciwalker Which makes sense, *if* the money can be put to better use - such as saving multiple people.

A very big "if"

If you save this million and have this individual die, I seriously doubt that you can point at the other life (lives) that would now be saved.

In any health system, add a million dollars to the overall funding . . . what's the impact?? here we know that 17000 a week will give a child a decent quality of life. Our health care system routinely spends more than that keeping 90 year olds with heart failure going through another week of dementia and pain with no hope of ever leaving a hospital bed ( Family requires that all steps be taken to preserve life). If you want to focus money better, I say you would be better served to look to this area.

Let the kid live!!!

	03-05-2005 23:55									#16
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I'm torn on this. I would love to say, let the state pay for this kid, but then what happens for other treatments that are very costly but not so narrowly confined?

What should the state cover as a medical procedure is a very interesting question, that I haven't seen much debate about here in Canada.

	03-05-2005 23:57									#17
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quote: here we know that 17000 a week will give a child a decent quality of life. Our health care system routinely spends more than that keeping 90 year olds with heart failure going through another week of dementia and pain with no hope of ever leaving a hospital bed

right, you also cover pain meds and that pain is only temporary...

Each case should be addressed independently. However, this is a president being set, but the humane one IMO.

Still, I think the burden should be taken by the drug manufacturer in return for something the company wants in the future; i.e. priority on drug approval lists, clinical trial assistance, tax breaks on other products, etc...

	04-05-2005 01:50									#18
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quote: Each case should be addressed independently. However, this is a president being set, but the humane one IMO.

precedent, not president.

Honestly? Sucks to be him. Were I making the call, I'd pay for it, but jeez... that's only 'cause I'm a softy, and would like to stretch out that kind of misery as long as possible.

	04-05-2005 01:52									#19
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quote: Originally posted by Flubber A very big "if" If you save this million and have this individual die, I seriously doubt that you can point at the other life (lives) that would now be saved.

Actually, you probably would save more lives and produce a greater net utility by giving it to, say, an emergency room or something like that. Or just find two kids who each have a disease that only costs 8.5k a week.

	04-05-2005 01:54									#20
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Yeah, Q^3, 'softy' is the first word that comes to my head when I see you post around the forums.

	04-05-2005 01:56									#21
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quote: precedent, not presiden

you new what i ment

	04-05-2005 02:00									#22
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quote: Originally posted by Q Cubed [ only 'cause I'm a softy, and would like to stretch out that kind of misery as long as possible.

Actually the article indicates that the treatment will allow the child to live fairly normally but that the disease will likely kill him by the time he is 20

	04-05-2005 02:02									#23
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Medicate him numb till he's dead. [/q^3]

	04-05-2005 02:05									#24
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quote: Yeah, Q^3, 'softy' is the first word that comes to my head when I see you post around the forums.

Isn't it? That's what I think of when I think of myself.

I Q^3, that softy...

	04-05-2005 02:06									#25
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quote: Actually the article indicates that the treatment will allow the child to live fairly normally but that the disease will likely kill him by the time he is 20

So he'll live fairly normally.

I don't see how that changes this:

quote: ...and would like to stretch out that kind of misery as long as possible.

	04-05-2005 02:07									#26
	Increase the size of your Attachments

quote: Medicate him numb till he's dead. [/q^3]

Morphine

	04-05-2005 02:14									#27
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quote: Originally posted by Ben Kenobi What should the state cover as a medical procedure is a very interesting question, that I haven't seen much debate about here in Canada.

Well people get costly treatments all the time with far less possible good effect.

Mrs Flubber is a nurse in a cardiac intensive care unit. In her unit they don't see that many no-hopers since the surgeons won't operate unless there is a decent chance for a reasonable outcome.

But in other intensive and chronic care units tou see bed after bed filled with people that will not get better and being supported by a battery of machines. They are there because their heart/lungs/liver/kidney /whatever are failing and nothing can be done to cure them. Mrs flubber has often come home upset because she "had to restart a patients heart so they can have another few days of pain".... our health care system does this all the time and the cost

Well lets see

1 to 1 nursing care at $30/hour=720 a day=5040 a week
doctors
respitory therapists
various techs and admin
drugs


etc etc--- I could easily see the number for a dying elderly person go up to 17,000 a week. Our system treats them willingly and nobody questions the cost.

If we want a system that denies a child the drug that will vastly improve and lengthen his life ( thats my assumption here, that the drug will help a lot), be prepared to have others look at medical expenses of other treatments. Wander through an ICU . . . . probably half the patients have no hope of a recovery. If you deny a child this drug on ECONOMIC grounds I wonder how you justify the economics of an 88 year old on a ventilator

	04-05-2005 02:15									#28
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quote: Originally posted by Q Cubed quote: Actually the article indicates that the treatment will allow the child to live fairly normally but that the disease will likely kill him by the time he is 20 So he'll live fairly normally. I don't see how that changes this: quote: ...and would like to stretch out that kind of misery as long as possible.

Ahh do you see a relatively normal life as "misery"??

I don't -- I love life .

	04-05-2005 02:17									#29
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$17k a week? That's expensive, but when you consider how much we waste on sports personalities glorified wage earnings its damn cheap.

	04-05-2005 02:25									#30
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quote: Ahh do you see a relatively normal life as "misery"??

Yup.

I'll admit it, I'm a softy.

quote: I don't -- I love life .

Clearly, you have a better dealer than I do. PM me his contact info?