Cystic Fibrosis Lady

[inquisitive]

First, do no harm - so our medical practitioners are charged. A simple ideal but, oh! so difficult to apply.
As in all walks of life's situations, follow the money.
I know, this isn't what this thread is all about, but it does play a huge part in this patient's - to put a face on it, Mrs. Vargas 's - plight.
Our governments, plural, have failed to rein in the practice of ethical drug over-pricing (in the eyes of the medical profession and of the patients) and this is entirely, or almost so, because of the success of the pharma industry's lobbyists. A successful lobbyist is one who has planted in the mind (and, regretfully, sometimes in the pocket) of a politician the righteousness of his claims, claims that are almost exclusively tied to the principle of increasing the value of the company's shareholders' investments.
The roads to hell are paved with stories of unscrupulous practices on every front that detract from the will of the people to achieve affordable ethical drugs, in order to cure them, or at least mitigate their unhealthy lives.
Human nature being what it is, the will to overcome these obstacles, both the legal ones - the lobbyists - and the illegal ones - the unscrupulous pols (and their supporters, staff and others with their feet in the trough), just brings us to where we are at this moment - stymied, and so far powerless to achieve our objectives.
What is needed is star power, (think the likes of Jimmy Kimmel here) someone in our world who is capable of reaching, in a meaningful way, the ear of, say, our Premier or our Prime Minister, and persuade him to foster the political will sufficient to bring the plight of their otherwise powerless constituents to the forefront and bringing the unjust practices of global pharma to a quick end.
European governments have had greater success in this field than we Canadians.
I realize that what has just been written here is probably common knowledge to Castanet readers, but surely it bears being brought to the front of our minds once more, and perhaps to galvanize our desire to do something positive in this matter.
Surely this is more than a pipe dream?
Mrs. Melissa Vargas, there are many people on your side wishing you well. Hopefully their goodwill is sufficient to place positive thoughts in the minds of our politicians and galvanize them into action on your (our) behalf.

[Silverstarqueen]

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

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

So optimistically the mother suggests that there will be a treatment in the future for CF. (this $250,000 per year drug is probably not it since improvements are not that great). But there likely will be other treatments, suppose they cost half a million per year, or a million per year (not inconceivable). At what cost? Who will pay?
You might think this will not become more common in future, but as more and more CF patients survive into teenage and adulthood, more children will be born to those with CF. It is already happening. So If instead of 3000 CF patients in Canada, there would be more survivors (which of course is great), and more babies born to them at risk of CF (Great that there would be more babies, not great that they would have CF). So the large cost of funding a pricey drug (ten times the annual cost of current treatments), would be multiplied by more survivors (estimate double or more), and more children born with CF, (Double that cost). Incidentally Canada already has a higher rate of CF patients per population than many other countries. So this is of concern. Ireland however has a higher rate, and more families with more than one child with CF (an idea that was scoffed at when I presented it the other day) "In 2005 we (Ireland) documented many sibling pairs and triples,” it said. There are 527 families represented in the registry (about half of CF cases are registered) and it found there were 45 sibling pairs, including three sets of twins. There are also four families with three children with cystic fibrosis." Not such a crazy idea, eh? and why not, it is their right.(still they aren't asking for a multi-million dollar treatment for people with CF.... yet).

Right, so we are back to reality here, at what point do we say a drug cannot be funded by our system? At what point do we get back to my (apparently horrifying suggestion) that people take a simple blood test to determine their chance of having a child with CF. If a woman with CF has a child and her partner does not take the test and is a carrier (1/25 chance), there is a very high chance of the child having CF. So what is so horrifying about them deciding to reduce their chances and have a child by surrogate pregnancy or adopt? If two people both test as carriers for a CF gene (each person has a 1/25 chance of carrying a CF gene) and decide they don't like their odds what is wrong with them adopting or having a child by a healthy surrogate mother? and what is wrong with them just going ahead and having a CF baby? Nothing, they can take their chances, and do not let us suggest that we should not bear the current cost of regular treatment (at $10-30,000 and up per year) or the Gold Star treatment that might be $ 1/4 million per year and up for life.

[inquisitive]

Lest anyone pick up wrongly on a passage in my last post, I did not suggest that Jimmy Kimmel be approached on our behalf - I used his name only as an example of Star Quality used to further a cause when dealing with the government, in the case of Mrs. Melissa Verleg (whose name I wrongly spelled so many times here - I apologize now for that).

[mexi cali]

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

If you're referring to inquisitive, you missed the point. Go back and read it more slowly. It was an analogy.

[Merry]

Much as we'd like to cover every single drug for every single patient, regardless of cost, the reality is that it simply isn't possible. Particularly when Drug companies are charging such outrageous prices for drugs that are of questionable value.

Until we find a way to make drug companies charge more reasonable prices (or at the very least provide adequate justification for charging the prices they do) we will never be able to solve this problem.

[inquisitive]

Having read Castanet's article today - "Priceless treatment or costly unproven drug?" I started a rudimentary research, and quickly found that the US FDA has approved the use of Orkambi via worldwide recognized drug testing protocol.
Italy has also approved its use and provides it to CF patients via its National Health Program at no additional cost to patients.
There may very well be other countries that include this drug for CF patients via national health schemes at no extra cost?
So, the Castanet author's statement should perhaps have included this snippet to provide a more balanced overview for we, it's readership?
Surely BC is a more wealthy entity than is Italy?
Nevertheless, I still accuse the ethical drug company of gouging, and hope that BC will at last employ its highly qualified health staff professionals to identify a true market cost using recognizable and indisputable methods to do so. Other authorities have done so with respect to other overpriced drugs to great effect for the users.
Keep thinking about Mrs. Melissa Verleg's plight (and others??)

[inquisitive]

I really must slap the wrist of my editor - me. Today, under the subject of Cystic Fibrosis Lady, I attributed an article to Castanet when it should have been to The Tyee. I apologize for this. (The article was entitled Priceless treatment or costly unproven drug?)