A Sensitive Topic

SINC · May 2nd, 2005, 08:02 PM

This week a young boy in Alberta is being helped out by the federal Minister of Health because his funding for a rare disease was threatened to be cut off. The cost? $17,000 a week.

I would be very interested to know the opinions of ehMac members on such spending.

First let me be very clear that I take no issue with such expenditures.

But also let me note that 40 years ago nature took its course and many with ailments that were not known or understood did not survive.

Is mother natures way best, or should hundreds of thousands of health care dollars be spent to try and enhance the lives of those who would never have survived in earlier years?

Please save your derogatory comments for someone who deserves them. I am simply trying to gauge the opinion of average people about this issue which touches far too many of us in our lifetimes.

In other words, natural selection versus modern medicine. Does it work to society's benefit?

GWR · May 2nd, 2005, 08:28 PM

The preservation of life should always be our first consideration. 17 000$ a week is alot of money, but that is why we have a publicly funded healthcare system. To help those that cannot afford to pay for medical expenses themselves. IMHO treating this as a "natural selection versus modern medicine" question is inhumane. This is a case that clearly demostrates the need for the existence of a publicly funded healthcare system, as many private insurance companies would likely treat this case on a "cost/benefit" analysis and try to back out of making the payments.

autopilot · May 2nd, 2005, 08:33 PM

Sinc, this thought has occurred to me many times in the last few months. it hit me when i saw 3 commercials in a row for different events to fundraise for different ailments.

take it a step further: picture it 40 years from now, when cures for many of today's diseases will be found. no aids? no heart attacks? no ms? no cancer? don't get me wrong, a lot of special people are lost early to these awful diseases.

but yes, do we (should we) pass on genes that would not have survived in earlier generations?

tough question...

Carex · May 2nd, 2005, 09:55 PM

Is this the boy who was being provided drugs either by the drug company or the government for a period of time. I think usedtobejwoodget will have a good comment or two about this one if it is the same fellow.

We long ago affected "survival of the fittest" when we started saving lives, curing diseases, keeping premature babies alive to the point where the line is blurred. But maybe not; perhaps this altruistic behaviour is one of our survival traits.

My hope is, that in this case of the rare disease that the doctors learn something while helping this guy along. Kind of two birds with one stone. Save a life and learn some stuff.

I suspect that one of the reasons that the drugs are so expensive is that the disease is rare and the supply and demand model is not favorable. If he had acne, the pills or medicines would be 50 cents apiece.

MacGuiver · May 2nd, 2005, 10:02 PM

Hi Sinc

We have the same thing here in Ontario. There is a drug that is available to treat people with a rare condition called Fabres Disease (Not sure I spelled that right, pronouced fab-rays) that can basically save their lives. Its new but testing has shown its effective. The provincial government refuses to fund it at this point and its extremely expensive (about $30,000/month). I feel for the poor souls that suffer with this. It would be like being stranded on a desert island with a signal fire ready to go but you have no matches as you watch the plane fly over. We need to do something for these people. Its seems criminal that the drugs cost that much but then again I have no idea what kind of costs these drug companies go through to produce these drugs. But then again, what's the point of producing such a drug only to have nobody that can afford to buy it?

Cheers
MacGuiver

iLabmAn · May 2nd, 2005, 10:07 PM

Take autism.

The current rates of autism is staggering. Many are calling it a growth of epidemic proportions. In Brampton alone (my city), behavioural and medical specialists KNOW that autism is on the rise.

Why?

There are a growing number of people who attribute autism to the increase of environmental toxins which have infiltrated everything from our food to our medication (i.e. mercury in vaccinations etc.). One can get more information about this here:

Autism One

We need to spend money to help these children and adults who suffer from autism because we have created an environment which produces it at an exponential rate.

winwintoo · May 2nd, 2005, 10:41 PM

I've been known to exclaim in frustration "who the heck decided that we should all live forever? and when where they going to figure out who was going to take care of us all or pay for it?"

Trust me, it's a quick way to clear a room.

Or to bring tears to the eyes of 70 year old women in poor health themselves who are still caring for their 95 year old invalid mothers and mother-in-laws while worrying about their own 45 year old off spring who are undergoing chemo. Besides the financial cost, there is an enormous human cost.

Where will it end?

It's a conversation that needs to be held, but how to start it is a mystery to me.

My family knows that I would not want to be kept alive beyond a certain point - they've promised to set me adrift on an ice flow rather than put me in a care home - but when I'm no longer able to speak, I don't know what they'll decide.

I don't have an answer.

Margaret

CubaMark · May 2nd, 2005, 10:43 PM

The kid in question was receiving the enzyme-replacement therapy during drug trials for the pharmaceutical company. When the trial ended, so did the drug supply.

The cost of his care is approx. $884,000/year. Is that an unreasonable expense in a country with a GNP of $1.023-trillion (2004 est.)?

M

Carex · May 2nd, 2005, 10:51 PM

Margaret, there are no answers only points on a compass to consider.

I look at my post above and realize it was a rambling piece of junk. Sorry, I was trying to cook dinner at the same time.

There is another angle that one can consider when thinking about the moral dilemna that is this topic. Think of it in different scales. If you consider this person to be one anonymous individual out of 6 billion, it would be easy to say that the economics make now sense (how the costs are arrived at is another matter). If this person becomes your son, brother, father, close friend, you may begin to think of it on a more personal level and determine that no cost is too great.

It would be very difficult to think about this on another global scale, as in, if this person can be saved/treated through government or drug company subsidy, then why not drug cocktails for all of the AIDS sufferers in Africa that do not have the means to pay for their treatment, though it exists, forever beyond their grasps. Whole generations may be affected there.

MacDoc · May 2nd, 2005, 10:58 PM

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.

Some comments.
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.