Cystic Fibrosis Lady

[Silverstarqueen]

Yes I did. Multiple times to make sure I read it right.[/color]

You suggest that my idea is to deny people having children. Which is not what I suggested at all.
Yeah, you kinda did....
No, I didn't. I suggested that they make an informed choice about passing on genes for a very serious condition, right now most people don't even know they are doing that.

"People would have a choice, to greatly reduce the chance of having a child with CF simply by taking a blood test. People who don't want such a test, certainly don't have to get it. This is already done for many conditions, by many people (you may not be aware of that), but they may not be aware that 1/25 caucasions carry a CF gene."


I am not talking about something minor like colorblindness, we are talking about a very serious condition which most people would choose not to have and not to pass on, I would think.

Yes, and I clearly pointed out other conditions which can have genetic causality.
None of which are part of the problem of Cystic fibrosis or how to prevent it, therefore reducing huge costs and a great deal of hardship.

Right now anyone is actually entitled to have as many children as they wish with a particular condition, and that is great.
But suppose some couples wanted to have four kids with CF, do you think that is a great idea?

Did you really write that? But suppose some couples wanted to have four kids with CF Seriously? Do you have any idea of what is involved in looking after someone with CF???? Do you think families would WANT to have 4 kids with CF?
So wouldn't it make sense to have no kids with CF if possible, just take the gene tests and most cases would not occur.


and should the government be on the hook for a treatment that would cost $10 million each over the course of their lifetime?(not to mention the normal costs of treating CF which are significant.)

Isn't it likely that couples knowing that the government would pay all costs, unlimited, for some CF treatment, would be less likely to want to prevent having a child with CF? It's unfortunate that this becomes a burden on society, but it is a fact.

Again...Wow.

Many people might wish to reduce their chances of having a child with a condition as serious as CF, and opt rather to have a child by surrogacy or adoption, or not. No one is suggesting that people cannot have children if they don't mind their chances of having CF, but shouldn't they be aware of their chances before deciding to pass on such a serious condition?

So everyone who ever considers having a child should be tested for all expensive genetic conditions...right, got it

Not only that, but a whole separate issue is that a drug like Orkambi can actually increase the chance that a woman with CF will have a child with CF.
Many women with CF (and without CF)
choose not to use birth control, and that is certainly their right. YES IT IS.
But that would increase the number of children with CF, wouldn't it be better not to do that?

But should we be on the hook for millions of dollars in health care, if that's what she want's to do?

Like we are doing for the woman with the conjoined twins in Vernon. (Who by the way is and was on social assistance from the get go.)
You have proved my point here. If the mother of the conjoined twins could have magically taken a test before becoming pregnant, AND if she was not getting all costs paid for, is it likely she would have chosen this? She didn't have a choice, once she had conjoined twins. And the treatment for these two girls is not half a million per year, which is what it would be fore twins with CF. They are getting checkups, a few medications, not surgeries, not lung transplants, not repeated hosptilizations, not medications costing $250,000 apiece per year.

Would a woman with CF be less inclined to prevent having a child with CF if she knew all the costs (unlimited) would be carried by the government?

Gee, don't you think someone who has CF is already aware of all the costs. Don't you think someone who has CF knows very well how difficult their own life has been?

Obviously, we know that, but it isn't stopping people from having kids with CF. I never said she wouldn't be aware of the costs. But if government pays all those costs (example conjoined twins) some people will be less diligent in not passing on the CF gene. My point was , if people believe every possible cost will be covered they are less motivated to take prevent having a child with CF.

[/quote]
I must say I can't figure out why you are so horrified at a simple, painless test, which could help couples decide NOT to pass on a very serious, fatal condition. Which would not only save them and the health care system millions of dollars, but would also save a lot of grief for those involved.

[Silverstarqueen]

If we can afford to safe harbour 35000 foreign refugees in the last 2 years to the tune of over a Billion and we can afford to pay the Indians another 800-900 million on top of the trillions we already paid for some BS deal then we can afford to help CF sufferers that need this drug

The refugees will not cost a billion per year, every year. This drug alone (not counting all other treatments required for CF) would. In the studies it improved respiratory function about 5%. That's a very large cost for a very underwhelming return. Currently costs per CF patient are already $10 -30,000 per year, this drug would add another $250,000 per patient. A very different range of cost.
And if we did that for CF patients, we would also be obligated to do that for every other patient of every other condition. THe costs would be astronomical. So if we are going to afford it, it wouldn't be with the current cost structures. Health care premiums would go up to the same kinds of levels that Americans pay, Probably $5-10- thousand per person per year.

It's easy to say we can afford it, and maybe we can, if you can tell me who wants to pay that kind of health premiums.

I think it would be more feasible to have a funding campaign for CF to cover cost above what the health care system provides.That way at least those who were paying would be doing so voluntarily. The Terry Fox campaign has raised millions for cancer research, other campaigns have raised for breast cancer or heart disease, why not CF?

[inquisitive]

If we can afford to safe harbour 35000 foreign refugees in the last 2 years to the tune of over a Billion and we can afford to pay the Indians another 800-900 million on top of the trillions we already paid for some BS deal then we can afford to help CF sufferers that need this drug

.

Thank you for expressing this Orkambi (and others) drug denial to patients in a clearly discriminatory light. I can only hope that our Health Minister, or some of his senior staff, will read this thread and add it to the list of items required to properly evaluate the current situation re. Ms. Melissa Verleg and also the big picture over the long haul regarding prohibitively priced drugs that have been developed for the greater good of mankind.
(Automobile manufacturers - and other commercial venturers - also engage in expensive R and D but they do not price their end products out of the reach of their intended customers).

[Silverstarqueen]

Now you claim that the refusal to fund a quarter of a million per year for life,per patient is discriminatory?
The refugees are funded (roughly) at a rate of a few thousand per year, per person, for a limited period.
All other Canadians are funded re: health care at an average of about $6000 per year, obviously some more, some less.
Cf patients might require $10,000-$30,000 per year,for current treatments, much of that is covered or co-covered by medical insurance, similar to other Canadian patients. AND no one has suggested they should not be cared for as well as any other Canadian patients.
So the suggestion that CF patients are being discriminated against is preposterous.
I don't know of any Canadians that are funded at a rate of a quarter million per year per patient, indefinitely, for drug treatment, or any other type of treatment, do you?

In fact, if we fund this one condition, at this level, it would be discriminatory if we did not fund any other conditions to a similar level. Heart,cancer, disabled, patients would demand that they get huge amounts to cover the amazing care they could get from hundreds of thousands per year to ease their suffering. This is the reason these kinds of costs are not approved or covered by our system, there is no way it could be provided without discrimination for all patients.

[Silverstarqueen]

Thank you for expressing this Orkambi (and others) drug denial to patients in a clearly discriminatory light. I can only hope that our Health Minister, or some of his senior staff, will read this thread and add it to the list of items required to properly evaluate the current situation re. Ms. Melissa Verleg and also the big picture over the long haul regarding prohibitively priced drugs that have been developed for the greater good of mankind.
(Automobile manufacturers - and other commercial venturers - also engage in expensive R and D but they do not price their end products out of the reach of their intended customers).

Automobile manufacturers (and many other producers) often price their goods out of reach of average earners. They have vehicles well over $100,000, they have vehicles at $30 to $20,000, still out of range for many people. No one is asking our government to fund the purchase of vehicles for those who can't afford them,and certainly not at the rate of 1/4 million per year. So another crazy point being made here, that makes no sense, and has nothing to do with funding pricier drugs for Canadian patients.
OUr health care system funds up to a (general) certain point for health care, sometimes tens of thousands per year, not hundreds of thousands year after year, for anyone.

[kgcayenne]

Basically, what you are trying to say is, "Dear treatable cystic fibrosis suffers: We, your countrymen, do not feel you are a worthy enough cause for our money."

[GordonH]

Anyone who compares a living breathing person to a non living thing i.e a vehicle, is in my books a f ing moron & needs serious help.

Added: I'm not apologetic for my choice of words

[Merry]

Problems such as that faced by this lady are never going to be solved unless we make the drug companies more accountable for the prices they charge.

There is ample evidence that drug prices have been pushed to astronomical heights for no reason other than the desire of drug makers to maximize profits. Prices in many cases far exceed what’s needed to cover the costs of research and clinical trials, and some companies have found ways to rake in profits even without shouldering the cost of drug development.

The two worst offenders are bottom feeders that simply buy companies they believe have underpriced their drugs and then quickly raise prices to astronomical levels

even some mainstream companies have set high prices that seem hard to justify. Eli Lilly said its new lung cancer drug, Portrazza, would cost about $11,430 a month in the United States, six times the $1,870 price that leading oncologists said in a recent journal article would be a fair reflection of the benefit the drug offers compared with older therapies.

Similarly, Pfizer set the list price for Ibrance, a drug to treat a form of advanced breast cancer, at $9,850 a month, a price that remains high even after the 20 percent discount demanded by insurers. The price was not based on manufacturing costs or research costs, according to an analysis by The Wall Street Journal. Rather, Pfizer set the price as high as it could without causing doctors and insurers to favor an alternative drug.

https://www.nytimes.com/2015/12/20/opin ... rices.html

[Merry]

Cancer drugs cost far less to develop than industry-backed research asserts, an analysis published Monday asserts. Research and development costs are a major reason that drug companies justify high prices, so this dispute has a direct bearing on the cost of medical care.

The analysis, published in the current issue of JAMA Internal Medicine, concludes that it costs, on average, $650 million to develop a new cancer drug. The authors add in another $100 million or so to account for income those companies could have had if that money had been invested in the stock market instead of in new products.

That total is far lower than the $2.7 billion figure that the drug industry frequently points to when it justifies the soaring cost of medicine. (It's far higher than $320 million — an inflation-adjusted figure from a 2001 study by the consumer group Public Citizen).

To arrive at this new figure, cancer physicians Vinay Prasad, at Oregon Health and Science University, and Sham Mailankody, at the Memorial Sloan Kettering Cancer Center, took a novel approach. They identified 10 companies that each had a single cancer drug on the market. They looked up the companies' research and development costs, as reported in their federal stock reporting paperwork, to come up with the average figure of $650 million.

The companies reaped substantial rewards. On average, the study found each product produced seven times as much revenue as it cost in research and development — and the drugs will yield profits for years to come.

"I think these results would suggest that pharmaceutical drug development is extremely lucrative and the current drug prices are not necessarily justified by the R & D [research and development] spending on these drugs," Mailankody says.

http://www.npr.org/sections/health-shot ... tudy-finds

[Merry]

Pharma companies often argue that they must raise the price of their most successful drugs to recoup the costs for research and development. Developing a new drug isn’t cheap: Some studies have estimated that it costs more than $2.6 billion. Pharma lobbyists will often say that the profits will help companies research additional uses for the product that can deliver more value to patients.

But critics say that these studies will often overstate costs, and are unfairly used to justify price hiking. Moreover, pharma companies will often point to R&D costs, but they rarely discuss how much of their profit is earmarked for marketing. As the Washington Post—and the comedian Jamie Oliver–point out, most drugmakers spend far more on marketing their products to doctors than investing in innovation. For instance, Johnson & Johnson shelled out $17.5 billion on sales and marketing in 2013, compared with $8.2 billion for R&D. Moreover, pharmaceutical companies have some of the largest profit margins in the health care industry.

It’s a common strategy among drugmakers to buy up drugs that they perceive as undervalued, and hike up the price without making any meaningful changes to the product. In 2015 Valiant Pharmaceuticals did just that: The company bought the rights to a pair of life-saving heart drugs, and increased the list prices 525% and 212%.

https://www.fastcompany.com/3056374/fac ... rug-prices

[inquisitive]

Anyone who compares a living breathing person to a non living thing i.e a vehicle, is in my books a f ing moron & needs serious help.

Added: I'm not apologetic for my choice of words

Too bad that you chose to misrepresent my words as I was not comparing a CF patient to a car!
Too bad that name-calling came into an otherwise civilized discussion.

Back to the topic, though, as you mentioned "a living breathing person". This is the very reason that we are so riled up (and rightly so) over the patient's dilemma. She literally has real problems over living and breathing every moment of her life, and we are asked via "The CF Lady " thread to be understanding of this and, if you are so inclined, go the extra mile to do something tangible in the way of support for her.
As things stand currently her life expectancy is in the region of fifty years. What is your expectancy? Probably in the region of eighty-five glorious years.

[Merry]

The number of new drugs licensed remains at the long term average range of 15-25 a year
However, 85-90% of new products over the past 50 years have provided few benefits and considerable harms

The pharmaceutical industry devotes most research funds to developing scores of minor variations that produce a steady stream of profits

Heavy promotion of these drugs contributes to overuse and accounts for as much as 80% of a nation’s increase in drug expenditure

Overinflated estimates of the average cost of research and development are used to lobby for more protection from free market competition

http://www.bmj.com/bmj/section-pdf/1876 ... s.full.pdf

[GordonH]

I wonder out of 25 most expensive meds on market today curious how many are actual covered by BC PharmaCare

[gardengirl]

To anyone who thinks Orkambi would ENCOURAGE CF carriers to have more children, watch this!

https://www.youtube.com/watch?v=hiyT68ClDko

[Silverstarqueen]

Basically, what you are trying to say is, "Dear treatable cystic fibrosis suffers: We, your countrymen, do not feel you are a worthy enough cause for our money."

No that isn't what we are saying. Because it isn't just about cystic fibrosis sufferers, it's about the viability of our health care system for everyone with a treatable condition. If all we had to do was cover CF, it would be simple wouldn't it? But do we cover every serious condition at astronomical cost for a relatively small return? There are only 3-4000 people with CF, so that would only cost a Billion. But if you include all the heart disease, cancer, disabilities and other health conditions, treated with the Gold Star approach, the costs would be completely unsupportable. We don't treat any other disease to that degree of cost, there are limits. So why choose only the CF patients for this special treatment
If you want special treatment for a particular condition, then you are looking at private donations. Those are doable, because they select only specific people for assistance and the donations are voluntary, so they can be as much or as little as people decide to give. Meanwhile of course, other conditions will get the regular medical treatment, but that is obviously not of concern to CF patients.
In general, CF patients have lived longer and done better in Canada, that those in the U.S. so I don't believe we can claim that Canada somehow is not caring for them pretty well.