A Sensitive Topic - Page 2

smilecentral · May 3rd, 2005, 12:28 AM

I completely understand the struggle. If money was no object, this conversation would not be held - the boy would receive his treatment without second thought.

But what morality ought to be the ruling one? Treat one individual for greater than $850,000 per year, or treat many more with other conditions. How many heart surgeries, stroke treatments, or kidney transplants can be completed for the same cost? I honestly don't know, but likely more than one. Is one life worth sacrificing other lives? How many people are on waiting lists for surgeries because the resources are so few? How many of these people will die?

What about hip replacements or cataract surgeries? Sure, these aren't "life-saving" surgeries, but they drastically improve the quality of life for many people. Isn't our society about giving our people the best quality of life possible? If not, then why fund public education, why fund adult training, why fund welfare or even the health care system at all?

And Carex raises an excellent point. Why not put this money toward stopping AIDS or malaria in Africa? Why not put this money toward supplementing iodine in the diets of iodine-deficient countries - this alone would prevent the birth of many many children with congenital hypothyroidism (the most common preventable form of mental retardation in the world).
http://en.wikipedia.org/wiki/Congenital_hypothyroidism

On the other hand, can we put a value on a single life? Sadly, situations like this price out life every single day.

These are not easy questions, and I certainly don't have the answers. It's easy to fault pharmaceutical companies, but they are the ones investing billions into producing drugs (the vast majority of which will never, ever see the market). How do we figure this out?

I don't think this it is a matter of medicine versus nature. Man has always fought with nature, just as he grows and learns from it. As we evolve to fight the diseases nature gives us, nature brings others forth. Despite the staggering amount of medical research going on in the world, these is little doubt that disease of some nature will be around for many, many years. Man has the brain capacity (a gift of nature!) to create things to improve his life. Extending our lives is not a "fault" of medicine, just as disease is not a "fault" of nature.

This problem is, sadly, one of resources. And it's a dilemma that will keep coming up, as we fight disease. What we need is a broad, logical and fair way of looking at these situations - because they aren't going away. Any suggestions?

MacDoc · May 3rd, 2005, 12:44 AM

Smile - but the boy has a contract with the rest of Canada. He's covered.
He's a minor, our society has a responsibility.

If your car hits a powerstation and causes a million in damage your insurer covers it. That's the contract. Rare yes, but it happens. How can you consider changing a contract in mid stream because it happens to cost a lot in this rare case.??

I certainly agree that as a principle the medical community with feedback from the participants...that's us....... have to decide WHERE to apply funds to best effect.

But you can't apply that general situation to the specific contract here in my mind. He's covered, period.

Wanna change the rules???.....fine, but that requires it be applied to all, not arbitrarily to one.

To keep this on track Ithnk we need to separate the "individual" as contract holder from general principles applied to "coverage".

••••

Carex - I think Bono is trying for a "contract" for aid........ 0.7 % of GNP.
It is a way for societies to allocate finite resources. Set up attainable contracts and review them from time to time.

used to be jwoodget · May 3rd, 2005, 06:53 AM

Actually, the Alberta and the federal government were being sued by the family of this boy who is aboriginal and so should be covered by the federal insurance scheme.

The company making the drug (a simple enzyme) based it on a publically funded research program at NIH. The NIH researcher involved is stunned and disgusted at the cost. Of course, the company has to recover costs but this is plainly ridiculous. The disorder is very rare but because there wasn't a drug, there are very few survivors. This will change as the drug will allow these kids to live longer. The ethical dilemma is clear. There are countless labs that could produce this protein for 5% of the cost it is being sold at. The company would probably sue but perhaps their patent doesn't cover Canada.

Personally, I find it repugnant to have to pay such extortionate costs. Drugs are denied thousands of people in North America every day because of arbitrary decisions on insurance coverage or whether the right conditions are met. But this child will die otherwise. We need to find better solutions to avoid such agonizing decisions (because helping this child live will mean others will die).

A horrible choice.

MacDoc · May 3rd, 2005, 07:57 AM

Jim, aren't you extrapolating from a particular case to a generalized observation.
You say "others will die"........yes the health care resources are finite but they are not inadequate in this particular case.
You are not lining up 10 people and saying this ONE gets the treatment - these 9 do not.

That's what I was concerned about in trying to get useful discussion - specifics versus extrapolation.

You have no specific knowledge of the outcome of the spending. The money flowing to the drug company COULD result in hiring more people that results in a life saving or cost saving elsewhere. Know one KNOWS the downstream results in any particular situation, it's only speculation while the outcomeof no treatment in this particular case has a known consequence.

The general threat to the system tho by drug companies "over charging" where cost of production bears no relation to the price charged and development costs are nebulous must be addressed.
But I don't think it is correctly addressed by cutting off this particular boy's treatment.

Canada has already arm wrestled the drugcos into lowering prices ( hence the "bus trips from the US ) and there is a "contract" between the Canadian health care system and the drugcos tht is continually being addressed.

The threat to the drugcos on one side being nationalization of key drugs ( Brazil threatened with AIDs drugs and India has made noises as well ) while the threat to the health care system being out of control drug costs bankrupting the system entirely.

So this a battle between large scale systems ........individuals where possible should not get used as pawns in it in specific cases.

Obviously those getting healthcare as a whole are impacted as are those trying to provide it and this is a cautionary incident that requires looking at for it's implications.

Pay for the kid, fix the system so it's sustainable.

SINC · May 3rd, 2005, 08:53 AM

So far, the replies to this thread are nothing less than I expected from fellow ehMacers. Your arguments both for and against are done with thoughtful consideration and careful planning so as to offend no one.

I am at the age where I need to consider a living will, something I have avoided to date, but will surely have to do in the near future.

I like Margaret, have no desire for extraordinary measures to keep me around if my quality of life is in question.

That in my mind brings forward the debate on what is "quality of life" and is society simply "keeping alive" many whose quality of life is in question, and if so, why? That is the hard question that needs to be addressed, and perhaps sooner than we want.

Bolor · May 3rd, 2005, 09:16 AM

smilecentral said:
"On the other hand, can we put a value on a single life? Sadly, situations like this price out life every single day."
I wonder how we can put a price on a single life? Companies spend millions on safety for their workers in order to save life and limb (and compensation payments). I believe that we owe it to society to support those who come into a disease through no fault of their own as this young lad has. As have most young people stricken with all types of diseases.

2/3 of all cancers can be prevented through healthy lifestyles. 1/3 of all cancers are caused by tobacco. Maybe if we can educate Canadians to improve their lifestyle, the health system may be able to afford the things it does not now cover.

We can afford to give junkies in Vancouver their daily fix, we should be able to help all those that need medical help through the health care system.

MacDoc · May 3rd, 2005, 09:26 AM

Sinc I think individuals really need to make statements about what they specifically want.
It's very difficult for others to make "hard decisions" when it's making them for somebody else. Easier if the directions are there already to follow.
In my mind that's the ONLY immediate step that can help the system.

Top down and "decision by others" can only go so far and can go very fast in changing things. But individual decisions about their own "fate" if you like can give medical care givers specific directions to follow.
Partners are the first step - sounds like you have had that "conversation".
Written "living wills" or directions even better.

Nasty things to deal with.......but I can see no other approach....we have to make decisions for ourselves for now at least to help healthcare professionals and the system itself.

For the moment the kids got a valid contract - honour it.
If we can rescue a recreational hiker, somebody stuck on a mountain etc at high cost.......this has to be done as well.

THEN deal with the implications to the system.

Personally I think a battle is looming between national interests and drug cos. It's been simmering for a while now. Not an easy one to navigate either.

SINC · May 3rd, 2005, 09:38 AM

Drug costs are rising at an alarming rate. My own meds after my heart attacks used to run me about $300 for 90 days supply five years ago. While I now take less of every one of the same drugs, the cost has jumped to nearly $600 for 90 days. If I was buying the same quantities as five years ago, it would be nearer $800.

How do drug companies justify that kind of increase? Every 90 days, my meds cost more and it is a lot more than the cost of living rise. Methinks someone is getting rich on the backs of the ill.

Carex · May 3rd, 2005, 10:34 AM

The way Jim explains above, it is an example of free market economics not working. The drug company's thinking was likely that the ailment was rare and they wouldn't be selling to hundreds of thousands of people without hardons, just a handful of genetically unfortunate individuals. I wonder if originally, they understood that most cases would subsidized by governments and they were able to somehow justify their high cost. Once the government steps out, and a life or quality of life is at stake, the drug company gets bad press, and their pricing structure (in this case unjustified according to Jim) is exposed.

MacDoc · May 3rd, 2005, 12:42 PM

I think there is more too it - I've been casually following the Orphan drug situation

http://asia.businessweek.com/technol...21213_0830.htm

	Quote:
	For years, Big Pharma ignored orphan-drug licenses, seeing such niche markets as too small to be worth the trouble. But as Genzyme is proving with Cerezyme, there may be gold in niche drugs. Genzyme won exclusive rights to the Gaucher-disease market with the introduction of Cerezyme in the early 1990s. That gave Genzyme the freedom to charge perhaps the highest markup on any prescription drug.

I'd suggest a google on "orphan drug laws" may be revealing on a number of levels.