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Terminally ill patients seeking experimental drugs

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#1
bopeep1909

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http://www.foxnews.c...tients-seeking/

Should people fighting for their lives have to battle red tape?

That’s the question lawmakers are considering in four states where the “Right to Try” act is moving forward – proposed legislation aimed at giving terminally ill people access to experimental, but potentially life-saving, drugs before they have FDA approval.

Americans like Keith Knapp, of California, have fought hard for this kind of legislation.

Keith Knapp married his high school sweetheart Mikaela. He and Mikaela thought they had their whole lives ahead of them --- until last year, when she was diagnosed with a terminal form of kidney cancer. This began a fight that the two of them never imagined, as they tried to gain access to a promising, but not-yet-FDA-approved, drug that was doing well in clinical trials. The couple learned that without being in one of these trials, current law would not allow them access to the experimental treatment.

From her hospital bed, Mikaela said recently: “People die from not being able to access these drugs all the time. I don't want to be one of them.”

But sadly, she was. Despite her husband’s passionate efforts to lobby members of Congress, pharmaceutical companies and the FDA -- and a huge media campaign -- Mikaela lost her battle just two weeks ago.

“The amount of effort you have to put into doing this is just far too much at this time in our life when you really just want to slow things down and enjoy being together,” Keith said.

Currently, it takes the FDA about 10 years to complete a clinical trial on a new drug -- and while many try, only 3 percent will gain access to a trial during that time. Meanwhile, 500,000 Americans died last year from cancer alone, with thousands more dying of other illnesses.

In states where the “Right to Try” act has been introduced, bill sponsors often have personal reasons for pushing the issue. In Missouri, state Rep. Jim Neely is trying to save his dying daughter. In Colorado , the law is sponsored by a clinical pharmacologist fighting for her dying brother. In Arizona, the driver of the bill is a man who lost his wife. A similar bill also has been introduced in Louisiana.

For many people who get a terminal diagnosis, they’re willing to try anything -- but once a clinical trial is closed, patients cannot get access to the potentially life-saving medication until it is approved by the government.

A family in Vermont is facing a similar situation. Jennifer McNary’s two young sons Max and Austin have the same disease. Max got into a clinical trial for an experimental drug called eteplirsen and is doing better. Austin did not get into the trial, and is getting worse.

“If Austin is never given the chance to get on eteplirsen, we know with 100 percent certainty that he will die,” she said.

Austin wants access to the drug that he’s seen make a big difference for his little brother. “My brother Max can run and walk, I can only sit in my wheelchair and watch him. He’s been on eteplirsen for two years -- it’s safe and effective and I want access,” he said.

Despite the heart-wrenching stories, many doctors warn against this -- saying these drugs could actually lessen quality of life and heighten the risk of side effects.

“You don't know that it's better than nothing,” UCLA endocrinologist Dr. Stanley Korenman said. “You don't know that this won't reduce your life expectancy rather than increase your life expectancy because you don't know what the side effects are.”

Other doctors agree, saying that many of these drugs turn out to be useless and give false hope. They also say it can lead to “snake-oil salesmen” taking advantage of desperate, dying people.

But the Goldwater Institute’s Darcy Olsen believes it’s time for a change. “Every day thousands of Americans are dying when there are potentially life-saving drugs that they could be taking if we simply got this regulatory process up to date and modernized,” Olsen said.

And Keith Knapp agrees.

“This is one area in which policy just does not match what the American people would want, and I would love to see that change so people don't have to go through this in the future,” he said.



#2
the_patriot2014

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Im in favor of it-if theyre terminally ill and they understand the risks, why not let them try it? I mean seriously, whats it going to do, kill them? It was one thing if the company was trying to trick people into taking it to experiment on them without their knowledge-but if the person knows that this is a experimental drug that may not work or even if it does have other side effects, or even end worse, then whats the harm?



#3
ayin jade

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And when they die, and their survivors decide to sue the company, the companies have to shell out a lot of money. Insurance companies will not pay for treatment either, so either the families have to pay for it, and its often expensive, or the company has to give it to them for free. 

 

There is a lot more to this than yall realize.



#4
Rustyangel

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I remember when John Wayne was in the last stages of the lung cancer that took him.  He said they could do whatever they wanted to do on him.  He knew he have little time left and if it could help someone else go for it.  No they should not have to fight red tape.



#5
bopeep1909

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The jury is still out for me.I have heard that prisoners can sign a release to use themselves as a guinea pig for experimental drugs.With some of those drugs you do not know what you are getting into.There can be some really bad side-effects.So you are taking a huge risk  if a person thinks that they will help.Some physicians are really frustrated about some very promising drugs that will not be passed by the FDA for years.



#6
Butero

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I am all for it, and it is long overdue.  Someone who is terminally ill should be able to try any experimental treatment they wish.  They should be fully informed of the risks, and sign a consent form.  The law should be set up where nobody can sue the drug companies, as the person chose to take the experimental drugs knowing the risk.  They have nothing to lose. 



#7
ayin jade

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Who pays for it?



#8
1x1is1

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I am all for it, and it is long overdue.  Someone who is terminally ill should be able to try any experimental treatment they wish.  They should be fully informed of the risks, and sign a consent form.  The law should be set up where nobody can sue the drug companies, as the person chose to take the experimental drugs knowing the risk.  They have nothing to lose. 

 

I agree. Just add in that the drug companies have to offer the drug for free. 



#9
LadyC

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i'm glad the FDA has stringent requirements on drugs, and sometimes think they're not stringent enough. how many class action lawsuits arise every year because of a drug that wasn't as safe as it was thought to be when it got approved?

 

BUT... for terminally ill patients, it would be nice if clinical trials were more accessible... or if travelling to another country where the drug is legal were more affordable.



#10
enoob57

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I'm caught up in the reasoning of how our lives do not belong to us... how we have been purchased
by The Lord to live in the eternal light of life. As we are unwilling to wrench ourselves from the
aspects of the first begin... how can we grow in the second and eternal begin?
    Here is the Scripturally designed focus of New Birth
Col 3:1-3
3 If ye then be risen with Christ, seek those things which are above,
where Christ sitteth on the right hand of God. 2 Set your affection
on things above, not on things on the earth. 3 For ye are dead, and
your life is hid with Christ in God.
KJV


as this is clearly defined here in letting go of that which God is not keeping and embracing that
which He 'IS'... is this not the war we are in with ourselves and others in a moment by moment
exist in this place? The radical inverse of the born again does not get caught up in the
temporary aspects of the first begin but only to increase the second begin!
radical.jpg
Love, Steven

#11
Butero

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It still comes down to a personal choice.  If someone wishes to use every means possible to slow down the progression of a terminal illness, and take any experimental drug out there, that should be their right.  The government has no business telling them they cannot do it.  As far as the spiritual aspects go, that is a personal choice too.  If the person doesn't want to use every means possible, and is content to die so they can go on to be with the Lord, so be it.  This is about whether or not the government should be able to make that decision for them, and I say no. 

 

As to who is going to pay for it, I would suggest that the drug companies would in most cases to test the products.  I hear ads all the time for new medicines where the drug companies treat people for free in exchange for using them as guinea pigs. 



#12
LadyC

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this thread reminds me i need to watch the dallas buyer's club



#13
ayin jade

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I am all for it, and it is long overdue.  Someone who is terminally ill should be able to try any experimental treatment they wish.  They should be fully informed of the risks, and sign a consent form.  The law should be set up where nobody can sue the drug companies, as the person chose to take the experimental drugs knowing the risk.  They have nothing to lose. 

 

I agree. Just add in that the drug companies have to offer the drug for free. 

 

 

Why should they have to offer it for free? Should you be ordered by law to give something for free to others?



#14
ayin jade

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It still comes down to a personal choice.  If someone wishes to use every means possible to slow down the progression of a terminal illness, and take any experimental drug out there, that should be their right.  The government has no business telling them they cannot do it.  As far as the spiritual aspects go, that is a personal choice too.  If the person doesn't want to use every means possible, and is content to die so they can go on to be with the Lord, so be it.  This is about whether or not the government should be able to make that decision for them, and I say no. 

 

As to who is going to pay for it, I would suggest that the drug companies would in most cases to test the products.  I hear ads all the time for new medicines where the drug companies treat people for free in exchange for using them as guinea pigs. 

 

The drug companies would not be able to use the data from that for proof of efficacy since it is not in double blind studies etc. The drug companies should not be forced to pay for it. 

 

As for signing waivers, lawyers can always get around it and sue the drug company. It has happened in the past. 



#15
bopeep1909

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It still comes down to a personal choice.  If someone wishes to use every means possible to slow down the progression of a terminal illness, and take any experimental drug out there, that should be their right.  The government has no business telling them they cannot do it.  As far as the spiritual aspects go, that is a personal choice too.  If the person doesn't want to use every means possible, and is content to die so they can go on to be with the Lord, so be it.  This is about whether or not the government should be able to make that decision for them, and I say no. 

 

As to who is going to pay for it, I would suggest that the drug companies would in most cases to test the products.  I hear ads all the time for new medicines where the drug companies treat people for free in exchange for using them as guinea pigs. 

 

The drug companies would not be able to use the data from that for proof of efficacy since it is not in double blind studies etc. The drug companies should not be forced to pay for it. 

 

As for signing waivers, lawyers can always get around it and sue the drug company. It has happened in the past. 

 

Yes. :mgcheerful:



#16
Qnts2

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It still comes down to a personal choice.  If someone wishes to use every means possible to slow down the progression of a terminal illness, and take any experimental drug out there, that should be their right.  The government has no business telling them they cannot do it.  As far as the spiritual aspects go, that is a personal choice too.  If the person doesn't want to use every means possible, and is content to die so they can go on to be with the Lord, so be it.  This is about whether or not the government should be able to make that decision for them, and I say no. 

 

As to who is going to pay for it, I would suggest that the drug companies would in most cases to test the products.  I hear ads all the time for new medicines where the drug companies treat people for free in exchange for using them as guinea pigs. 

 

When a drug company tests new medicines, they pre-screen the people who are asking to be the test subjects to ensure there is nothing in their medical history, or any other factors, which might skew the data. They also avoid redundant subjects, so that the data is coming from a diverse enough test cases.  Plus, there is another catch. Not all test subjects receive the medicine. Some receive placebos, to eliminate the possibility of a placebo effect. These tests are to provide data to the FDA to receive their stamp of approval. The tests must conform to statistical test standards, so, not just anyone will be a good subject for the trial, and not all will actually receive the medicine.

 

I understand the problem with the slow process of bringing a medicine to market. The approval process in the U.S. is known for it's slowness. Plus, as I understand it, there are effective medicines in other countries which do not make it to the U.S. because no drug company wants to invest to take the drug thru the FDA process, as it is not profitable.  



#17
the_patriot2014

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And when they die, and their survivors decide to sue the company, the companies have to shell out a lot of money. Insurance companies will not pay for treatment either, so either the families have to pay for it, and its often expensive, or the company has to give it to them for free. 

 

There is a lot more to this than yall realize.

yes well, thats the problem with todays society-people are suit happy. They need to sign a form releasing them of all liability-and the court needs to uphold that and throw out all silly lawsuits.



#18
enoob57

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this thread reminds me i need to watch the dallas buyer's club

Ewwwwing JR votes oil well...

#19
enoob57

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I think we should make the Vikings pay for it :happyhappy:

#20
kwikphilly

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Of course the drug companies should pay for the use of their drugs on test subjects,,,,they same way they pay for the tests done on rats,dogs & monkeys....if they would like to have human subjects,it should cost them...............they have no problem with raking in the profits once their products are approved & hit the market,please....






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