Cystic Fibrosis Lady

[Merry]

This article is referring to the situation in the States, but I still think it's relevant to this discussion

The drug companies say they need the additional profits to pay for researching and developing new drugs.

But the government supplies much of the research Big Pharma relies on, through the National Institutes of Health.

Meanwhile, Big Pharma is spending more on advertising and marketing than on research and development – often tens of millions to promote a single drug.

And it’s spending hundreds of millions more every year lobbying. Last year alone, the lobbying tab came to $225 million, according to the Center for Responsive Politics.

That’s more than the formidable lobbying expenditures of America’s military contractors.

http://robertreich.org/post/99279814665

Our Government also spends money on research so, the question becomes, how much of the "research and development" big Pharma always claims is actually taxpayer cash (both U.S. and Canadian) and how much is from the company itself? And how does what they spend compare with the amount they spend on direct to consumer advertising, and political lobbying?

[inquisitive]

another thing i find odd is she started taking it in 2016 a year ago and never said peep to bclib goverment but now seems compelled to try make the ndp look bad ? something seems off

.
Please, please,don't turn this into a political thing. Please, don't!
In 2016 the patient was receiving her drugs, benefiting from them, and her life was approaching (only approaching) a more normal level of life - we cannot be in her shoes and therefore cannot distinguish what that means to her. In those circumstances and at the time that another government was in power, she had no reason to think political thoughts as her life was progressing as planned - and, furthermore, I doubt whether she has since that time put politics into play.
This political thing you have brought up just attempts to divert attention from the desperate situation that this young lady finds herself in.
We can, as individuals, now that we have learned of her fight for life, can support her by ensuring a strong message gets to the movers and shakers in government heed her pleas and furthermore shine a spotlight on the pricing of humanitarian drugs that are priced, for the sake of increased profits, within a reasonable reach of the very human beings for which they were developed. Are you one of those who will go the extra mile on behalf of this young lady?

[khutchi]

I'd like to share something i learned from the book : Doctors in Denial: Why Big Pharma and the Canadian medical profession are too close for comfort. It's a great book and shows a lot of the problems with Canada's health care system

A while ago in this country we used to have this thing called "compulsory licensing" which meant that if the government thought you were charging way too much for a drug they could license another pharmaceutical company without the patent to produce the drug themselves and there was nothing the original owner of the drug could do about it.Their patents would not be honoured. It was unrivalled in keeping drug costs down at the time!

Well on June 23,1992 (Three days before i was born), the federal conservative party under Brian Mulroney introduced Bill C-91 which eliminated all forms of compulsory licensing. It was a key election issue and the tories were lobbied hard with campaign donations and promises of future research spending and jobs. The Quebec liberals fared no better and were only able to fight off the lobbying by conceding 4 year exclusivity rights and negotiated royalty rates (the Eastman commission).

My heart bleeds for people who can't get affordable drugs but the blood really isn't on the NDP's hands... they've been calling for a true pharmacare program in Canada since the days of the CCF and Tommy Douglas...

[GordonH]

I'd like to share something i learned from the book : Doctors in Denial: Why Big Pharma and the Canadian medical profession are too close for comfort. It's a great book and shows a lot of the problems with Canada's health care system

A while ago in this country we used to have this thing called "compulsory licensing" which meant that if the government thought you were charging way too much for a drug they could license another pharmaceutical company without the patent to produce the drug themselves and there was nothing the original owner of the drug could do about it.Their patents would not be honoured. It was unrivalled in keeping drug costs down at the time!

Well on June 23,1992 (Three days before i was born), the federal conservative party under Brian Mulroney introduced Bill C-91 which eliminated all forms of compulsory licensing. It was a key election issue and the tories were lobbied hard with campaign donations and promises of future research spending and jobs. The Quebec liberals fared no better and were only able to fight off the lobbying by conceding 4 year exclusivity rights and negotiated royalty rates (the Eastman commission).

My heart bleeds for people who can't get affordable drugs but the blood really isn't on the NDP's hands... they've been calling for a true pharmacare program in Canada since the days of the CCF and Tommy Douglas...

Typical politicians screwing people over, so Bill C-91should be removed ASAP. Tell pharmaceutical companies to go f themselves.

[Silverstarqueen]

Canada typically provides seven to nine years of patent protection for drugs. So a pharma co. has about that long to recoup the costs of research and development (and yes, advertising,and any other overhead), before other producers can horn in and come up with their copy-cat versions. Other countries, it seems provide longer patent protection. So where do you think companies will go to develop their drugs? Not necessarily Canada. Our patients therefore miss out on the funded trials which is about the only way some people could afford even part of the cost.
Canada could also engage in a national drug program where they can buy large quantities of more commonly used drugs at better prices. Which still unfortunately would not apply to a new, relatively uncommonly used medication such as for CF.
The problem is not really about one person, it's about affordability of drugs for every person who might need a phenomenally expensive treatment. Either we all kick in another 10 or 15,000 per year for a drug program to cover everyone, or we don't. Pharma companies are not puppets of the government, they are businesses like any other, and balance the cost of their product according to what the market will bear. If no one buys their more pricier products, they might just have to adjust their prices.
Governments can't regulate the price of products from private companies, or even force them to reveal the costs of their research and development. But they can decide whether or not they want to pay the going price for a drug in an effort to force prices down. This is practically the only way the government could keep costs down , if it had a drug program, which right now it doesn't. The argument is really about whether the Canadian government should have a drug program, and what kind of cap they might want to put on any person's drug coverage,not whether one person should be funded for a 1/4 Mill per year for a drug.

[GordonH]

Canada typically provides seven to nine years of patent protection for drugs. So a pharma co. has about that long to recoup the costs of research and development (and yes, advertising,and any other overhead), before other producers can horn in and come up with their copy-cat versions. Other countries, it seems provide longer patent protection. So where do you think companies will go to develop their drugs? Not necessarily Canada. Our patients therefore miss out on the funded trials which is about the only way some people could afford even part of the cost.
Canada could also engage in a national drug program where they can buy large quantities of more commonly used drugs at better prices. Which still unfortunately would not apply to a new, relatively uncommonly used medication such as for CF.
The problem is not really about one person, it's about affordability of drugs for every person who might need a phenomenally expensive treatment. Either we all kick in another 10 or 15,000 per year for a drug program to cover everyone, or we don't. Pharma companies are not puppets of the government, they are businesses like any other, and balance the cost of their product according to what the market will bear. If no one buys their more pricier products, they might just have to adjust their prices.

http://www.bbc.com/news/business-28212223
Just so fat cat shareholders can get fatter, those who could benefit from these breakthroughs get screwed out of their live savings..... nice.

[Silverstarqueen]

That is exactly why I believe the most effective tactic is to boycott drug companies, or at least boycott those drugs which are seriously overpriced. The only reason they get away with the pricing that they do, is because people pay it. It's a lot like robbery. If some robber thinks he can make a bunch by holding people up, or robbing a bank, that's just what he will do. If we make it difficult or impossible to do that, then there are a lot fewer robberies.Unfortunately, given the nature of the free market place, drug companies are not any more regulated regarding price than any other companies. If we were a communist country we could force all these companies to produce goods for cheap. As it is, if we could force them to drop prices, they can just take their ball and go home, and not bother producing newer drugs.

[kgcayenne]

Big-pharma driven industry = socio-economic genocide: "It seems that you are just not wealthy enough to live."

[Silverstarqueen]

I looked up the profit returns for Pharmaceutical co's. They are higher than some industries (like home construction) and lower than some others (like oil and gas, restaurants), so they are about middle of the pack.

Not being rich enough to live, in the case of this drug (and a some others) means you would have to be a multi-millionaire (and not just a few millions) to afford the drug. That would be a famous hockey player, musician or ceo (preferably of a drug company). Many doctors do not make enough money to afford drugs at this level. The question that comes to mind is, should four million B.C. residents who probably could not afford this drug, and equally expensive drugs or treatments, have to fund it for those who do need it. Someone would have to pay for those drugs for how ever many people needed them, so who would that be that is going to pay for it? For this reason, even if you had a drug insurance coverage program (which we don't), it would probably not include drugs in this cost range.

[inquisitive]

This thread has obviously struck a nerve in so many of us, but how many of us has actually taken another moment or two and made contact with, say, Adrian Dix, our health minister, as we were all implored to do by Ms. Melissa Verleg?
Yes, the pharmacare situation regarding the pricing of these exotic drugs needs to be aired in places like Castanet, but, again, much as publicising our thoughts and opinions on Castanet and the like, thus reaching a wider audience with shared information, it is far more important that our messages expressed here actually reach the movers and shakers also who, as our servants, might/could be moved to actually initiate action resulting, in this case, the release of this drug so badly needed (not wanted), and now so badly missed by Ms. Verleg.
Let the discourse on unjust drug pricing continue via the likes of Castanet as long as our interest is engaged but please, go back to the original message entitled The Cystic Fibrosis Lady and send your message to Mr. Dix and to our local legislative representative, at least, and we will be truly furthering the cause of Ms. Melissa Verleg, who, by now, is deteriorating once again, having exhausted her supply of Orkambi.

[Silverstarqueen]

What would make a lot more sense would be to have prenatal blood tests of prospective parents to determine if they are carrying a CF gene (cost 5 million in b.c. per year).

[kgcayenne]

Oh! Hey! I saw that movie!

[Silverstarqueen]

This drug apparently had a whopping improvement of 4 to 7% points in respiratory function of treated patients(doesn't work for all patients). I would expect a better result for a drug costing $20,000 per month.

[inquisitive]

What would make a lot more sense would be to have prenatal blood tests of prospective parents to determine if they are carrying a CF gene (cost 5 million in b.c. per year).

It's a sweat test that detects the CF gene, not a blood test. It involves a lot of physical effort over a significant amount of time incurred by each person to get to the point where the specimens are acceptable for analysis, and then there's the lab tests (and costs) to confirm yea or nay.

[Silverstarqueen]

What would make a lot more sense would be to have prenatal blood tests of prospective parents to determine if they are carrying a CF gene (cost 5 million in b.c. per year).

It's a sweat test that detects the CF gene, not a blood test. It involves a lot of physical effort over a significant amount of time incurred by each person to get to the point where the specimens are acceptable for analysis, and then there's the lab tests (and costs) to confirm yea or nay.

CF is diagnosed in newborns, I doubt they are performing much physical effort over any amount of time.
Parents can also get genetic testing to see if they are carriers, since they might not have CF themselves but can pass it on. If they are carriers, I doubt it's going to come up in a sweat test. My point being, prevention (thru genetic testing of population) would be very worthwhile, given the phenomenal expense of the drugs over a lifetime (plus enzymes, testing, hospital stays, transplants, disability).