Wow this is a monster- I had started a thread earlier about a similar case in the Eastern provinces - higher dollars. $350k a year. There is more than one in Canada.
To some degree the money spent on these treatment flows back through the economy so it ca be a zero sum game unless huge amounts start flowing outside the community that is paying for the protection by way of taxes which are in effect health insurance premiums.
Ethically, morally it gets into everything from herioc efforts, to assisted suicide to what to do with severely deformed/ill infants to prolonging life at all costs to quality of life.
No easy answers in any of them and more and more these will be hard questions for society and individuals and families to deal with.
The upcoming numbers are horrific in quantity - people living longer, being able to be kept alive.
There is also a "lottery" aspect.
We all pay for our "health tickets" but in this case our winning is never having to cost the health care system a dime.
If society has million dollar winners - then it CAN have million dollar losers. A few too many in the million dollar category and lottery system goes broke. Health care unlike the lotteries has no consistent %s to deal with....only large epidemicological stats that says this kind of disease is rare.
IF the system can handle the furthest edge of the bell curve for costs.......then given our social contract amongst Canadians - most would agree it should.
Additional personal medical insurance COULD give the public system additional funds for the exceptional costs for those that chose to participate but limits are there as well.
We've had enough social issues surrounding dealing with population control BEFORE conception and/or birth.
Dealing with life extension/high cost treatments is going to be far far more difficult.
I'm not sure there is ONE method of dealing with issues like these.
We spend $500,000 on SAR search for a lost yacht
, or fisherman, or hunter or......
Those sorts of expenditures tend to flow back through the economy and we accept them as part of a safety net - ....like firemen we all pay for and rarely use but realllllllly want to be there if we do need them.
In this case - my feeling is - the system can handle it ....it's a rare condition.
OTHER cases that are much less rare yet costly......my son's pump for instance for Type 1 Diabetes which is skyrocketing.
He CAN get by on less costly technology. We CHOOSE to provide him better technology.
Surprising - neither is covered by public health care.......as yet.
Fortunately insulin is relatively cheap -
In the case of this boy - the treatment is very expensive tho a rare condition.
Diabetic costs to the health care system run in the 5 billion per annum range.
We treat them.....to a degree.......we must treat this boy.
This case I'd say is straight forward. Rare, high cost but as a condition the treatments x those afflicted is likely pretty small compared to other disease category costs......say lung cancer which some would say is a life style consequence.
We treat those - we treat the boy.
HE falls well within the structure of the social contract for health care in my mind.
BUT I'd love to see this discussion cover the other I would consider more difficult aspects, life extension without regard to cost, ... assisted suicide etc.
Personally I think we should be more proactive as individuals in helping the healthcare situation in the high cost areas.
SIGN THE DAMN DONOR CARDS or even better require OPT OUT signatures if someone objects.
Have a living will laying out limits to treatment, life extension/heroic effort.
Allow doctors under oversight to aid in assisted suicide.
If the boy's a Canadian he's part of the net.......money better spent than on land mines......or submarines.
The ONLY big solution is for individuals to set their own limits and if they WANT everything possible done- perhaps buy premium coverage.
Until there is enough mass of individually decided limits......effective answers will be hard to come by.
Perhaps as a free society....our personal understanding of freedom has include how to die as well.
Not an easy task for many.
But this boy?????........just get it done.........and in cases like these the drug companies often will be part of the solution.
Carex it's really hard NOT to ramble on this topic of "limits". This case I think is pretty straight forward but the extension of it by implication into other areas of "cost limits" do not lend themselves to simple solutions.