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Cystic Fibrosis Lady

Re: Cystic Fibrosis Lady

Postby GordonH » Oct 7th, 2017, 5:27 pm

Silverstarqueen wrote: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).


Talk about throwing a hot potato into the whole abortion debate. I'll stand back and watch fireworks go off on this one.
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Re: Cystic Fibrosis Lady

Postby Silverstarqueen » Oct 7th, 2017, 5:43 pm

Prenatal testing is often done for various genetic conditions. If parents don't want to know whether they carry a CF gene, they don't have to. It gives them a choice tho, before they become pregnant, so that type of testing would actually reduce the number of babies born with CF, even if abortion was not part of the issue.
On the other hand someone who was actually pregnant, if they want to have the baby tested (they certainly don't have to), it would also give them a choice. If the test was positive for CF, they do not have to abort the pregnancy, but they could plan for a different type of future for their baby and start treatments sooner.
I am not proposing that people be forced to have an abortion simply because they test positive for being a carrier of a CF gene. Obviously that is a matter of choice, and should remain so.
1 in 25 people in the white population carry a CF gene, I should think they would want to know if their partner did too, so that they could decide if they want to take the chance on having a child with CF . Again all this can be determined before they become pregnant. Wouldn't that be so much easier than trying to explain to your son or daughter why you cannot afford $250,000 per year for their CF medication?
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Re: Cystic Fibrosis Lady

Postby Merry » Oct 7th, 2017, 5:52 pm

Drug companies outrageous profits, which they try to justify by quoting over inflated R& D costs, are a big part of the problem.
If you are making $3bn a year on [cancer drug] Gleevec, could you get by with $2bn? When do you cross the line from essential profits to profiteering?

The above comment of Dr Brian Druker's was quoted in the article Gordon H cited earlier (http://www.bbc.com/news/business-28212223) and it really resonated with me. Because this is the issue in a nutshell; how much profit is enough, when the price of that profit is people's lives?

Nobody expects drug companies not to make a profit, but there's a difference between honest profit and gouging people, and I suspect the drug companies are guilty of the latter. They charge outrageous prices and then "play the sympathy card" by making sure the Public finds out about some poor person who is suffering and/or dying because they can't afford it, and then use such stories to put Public pressure on Governments to cover the cost.

Many are now questioning the Pharmaceutical companies claims regarding their R&D costs
Pharma companies are notoriously secretive about the costs associated with developing new drugs.

https://gizmodo.com/drug-companies-may- ... 1733610990
The article I got that quote from points out that when the companies do disclose costs they usually forget to include the tax breaks they got, which means the price quoted is an inflated one.

The following reinforces that point (my bold)

Inventing, testing and launching a drug costs $2.6 billion, calculates the Tufts Center for the Study of Drug Development. The industry substantially finances the center’s work, leading many to question its credibility. Drug companies use its conclusions to justify high prices and cite this figure at every turn.

Outside authorities criticize the research, saying it comes from untestable data, ignores enormous tax subsidies that reduce costs and inflates results with imaginary expenses, such as profits that could have been earned if drug companies invested research dollars elsewhere.

“These estimates are all based on secret, unverifiable numbers of unknown reliability from unknown companies about unnamed drugs,” said Donald Light, a health policy professor at Rowan University in New Jersey
.

http://www.huffingtonpost.com/entry/the ... 91bb107e19
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Re: Cystic Fibrosis Lady

Postby gardengirl » Oct 7th, 2017, 8:42 pm

Silverstarqueen wrote:Prenatal testing is often done for various genetic conditions. If parents don't want to know whether they carry a CF gene, they don't have to. It gives them a choice tho, before they become pregnant, so that type of testing would actually reduce the number of babies born with CF, even if abortion was not part of the issue.
On the other hand someone who was actually pregnant, if they want to have the baby tested (they certainly don't have to), it would also give them a choice. If the test was positive for CF, they do not have to abort the pregnancy, but they could plan for a different type of future for their baby and start treatments sooner.
I am not proposing that people be forced to have an abortion simply because they test positive for being a carrier of a CF gene. Obviously that is a matter of choice, and should remain so.
1 in 25 people in the white population carry a CF gene, I should think they would want to know if their partner did too, so that they could decide if they want to take the chance on having a child with CF . Again all this can be determined before they become pregnant. Wouldn't that be so much easier than trying to explain to your son or daughter why you cannot afford $250,000 per year for their CF medication?


Wow. Just Wow....
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Re: Cystic Fibrosis Lady

Postby gardengirl » Oct 7th, 2017, 8:44 pm

inquisitive wrote: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.


Yes. I have sent a letter.
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Re: Cystic Fibrosis Lady

Postby gardengirl » Oct 7th, 2017, 8:53 pm

Silverstarqueen wrote: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).


How lucky for you that you are genetically blessed.
Your idea could single-handedly eliminate all sorts of pesky conditions. Genetic testing could be done for everyone.

Got a family history of cancer? Ok, no kids for you. Why should you have a family which will be a burden on society?
Heart conditions? Ditto.
Diabetes? Of course.
Dwarfism? Who wants that?
Downs? Oh goodness no.
Colorblindness in the family? Well, that could be seen as a disability...
Life is a banquet and most poor suckers are starving to death.

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Re: Cystic Fibrosis Lady

Postby kgcayenne » Oct 7th, 2017, 10:06 pm

Just in case no one recalls, the movie was Gattica.
https://en.m.wikipedia.org/wiki/Gattaca
"without knowledge, he multiplies mere words."
Insanity is hereditary, you get it from your kids.

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Re: Cystic Fibrosis Lady

Postby Silverstarqueen » Oct 8th, 2017, 5:06 am

Silverstarqueen wrote: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).

gardengirl wrote:How lucky for you that you are genetically blessed.
Your idea could single-handedly eliminate all sorts of pesky conditions. Genetic testing could be done for everyone.

Got a family history of cancer? Ok, no kids for you. Why should you have a family which will be a burden on society?
Heart conditions? Ditto.
Diabetes? Of course.
Dwarfism? Who wants that?
Downs? Oh goodness no.
Colorblindness in the family? Well, that could be seen as a disability...


Did you even read my post?
You suggest that my idea is to deny people having children. Which is not what I suggested at all.
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.
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?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.

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?
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 choose not to use birth control, and that is certainly their right. But should we be on the hook for millions of dollars in health care, if that's what she want's to do? 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?
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Re: Cystic Fibrosis Lady

Postby inquisitive » Oct 8th, 2017, 7:41 am

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).[/quote]
Believe me - sweat tests do the trick.
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Re: Cystic Fibrosis Lady

Postby Silverstarqueen » Oct 8th, 2017, 8:05 am

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).[/quote]
inquisitive wrote:Believe me - sweat tests do the trick.

How does a sweat test detect a carrier?f "since they do not have CF themselves but can pass it on"
Last edited by Silverstarqueen on Oct 8th, 2017, 8:13 am, edited 1 time in total.
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Re: Cystic Fibrosis Lady

Postby inquisitive » Oct 8th, 2017, 8:08 am

inquisitive wrote:Believe me - sweat tests do the trick.

How does a sweat test detect a carrier?f "since they might not have CF themselves but can pass it on"[/quote].
Try Googleto find the answer.
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Re: Cystic Fibrosis Lady

Postby Silverstarqueen » Oct 8th, 2017, 8:15 am

According to Google if you don't have CF you will have a negative sweat test. So it will not identify a carrier.
So you still haven't answered the question. No need to be mysterious, just explain.
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Re: Cystic Fibrosis Lady

Postby inquisitive » Oct 8th, 2017, 9:13 am

Silverstarqueen wrote:According to Google if you don't have CF you will have a negative sweat test. So it will not identify a carrier.
So you still haven't answered the question. No need to be mysterious, just explain.

This sounds like it's turning into a pxxxing contest - so - the end. Let's go back to the plight of the CF lady and try to help her by direct action, yours and mine - that would be a far more effective pastime.
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Re: Cystic Fibrosis Lady

Postby gardengirl » Oct 8th, 2017, 11:36 am

Silverstarqueen wrote: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).

gardengirl wrote:How lucky for you that you are genetically blessed.
Your idea could single-handedly eliminate all sorts of pesky conditions. Genetic testing could be done for everyone.

Got a family history of cancer? Ok, no kids for you. Why should you have a family which will be a burden on society?
Heart conditions? Ditto.
Diabetes? Of course.
Dwarfism? Who wants that?
Downs? Oh goodness no.
Colorblindness in the family? Well, that could be seen as a disability...

Silverstarqueen wrote:
Did you even read my post?

Yes I did. Multiple times to make sure I read it right.


You suggest that my idea is to deny people having children. Which is not what I suggested at all.
Yeah, you kinda did....

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.

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?


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 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.)

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?





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Re: Cystic Fibrosis Lady

Postby dontrump » Oct 8th, 2017, 7:18 pm

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 :130:
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