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Right to Try bill passes House

Threegoofs said:
Oh good lord.

This is like an advertisement for snake oil! We can’t afford to study it, but try it! It works!
Who needs that complicated sciencey stuff anyhow- it just knocks 90% of drugs out of the running because they don’t work or aren’t safe!


And....

17 antiarrthmics in 18 months, huh?

Geez. Wait till all the Electrophysiologists I work with find out.

Which one are you on? Cinnamon and honey, or freeze dried red tea?
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Instead of speaking with technicians, try speaking with the Rockefeller University Cardiac Board. You're in for a surprise.

I drink red tea often, no caffeine, and I like it. I get enough caffeine from my Puerto Rican estate coffees. Maybe you remember when cardiologists advised against coffee intake for cardiac patients. Now they recommend it. The best topical for an open wound, honey. And it is naturally antibiotic without any side effects. You were saying?

If aspirin were a recent discovery, it would be a controlled substance. Still just bark scrapings. Coca Cola was a snake oil, and Dr. Pepper's. Enjoy. I still clean stains with seltzer. The salts in club soda remove the dye.
 
OldFatGuy said:
I tell you from personal experience, very personal experience, this is not true. My wife was denied an experimental cure for Leukemia. She died. Four weeks later, the drug was approved as a therapy for her type of Leukemia. It has enjoyed a 63% cure rate for the patients who have received it.

I was approved for an experimental anti arrhythmia medication to prevent sudden death syndrome. It still keeps me alive. 98% of the US patients who needed this therapy were denied access at that time. All but two are dead. That was 34 months ago. A year later the medication received approval here, but not in Europe. And because of the co-payment expense, many patients are taking less expensive alternatives which have significantly higher death ratios.

Until this bill, nothing had changed. I hope you never suffer what so many have not enjoyed.
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169 Congressmen, exclusively Democrats, voted against this bill. Their concern seems to have been that voting for it would, in the eyes of their constituents, give Trump a "win". Party over the people, that's what we've got going on in DC. There is NO WAY this bill should have been opposed by anybody.

http://clerk.house.gov/evs/2018/roll214.xml
https://www.congress.gov/bill/115th-congress/senate-bill/204/text
 
Lutherf said:
169 Congressmen, exclusively Democrats, voted against this bill. Their concern seems to have been that voting for it would, in the eyes of their constituents, give Trump a "win". Party over the people, that's what we've got going on in DC. There is NO WAY this bill should have been opposed by anybody.

http://clerk.house.gov/evs/2018/roll214.xml
https://www.congress.gov/bill/115th-congress/senate-bill/204/text
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Yes, there was a good reason to vote against it.

Read the links, and lay off the Fox News.
 
Threegoofs said:
Yes, there was a good reason to vote against it.

Read the links, and lay off the Fox News.
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Hey, I get it. You prefer the government deciding what drugs a terminally ill patient can try instead of letting the patient and his or her doctors decide. I understand. You believe that a bureaucracy best serves the interests of the people and that if the people don't like the bureaucracy that's because they're too dumb to be allowed to think for themselves and, therefore, need a bureaucracy to do their thinking for them.
 
Threegoofs said:
A compassionate program already exists. 99% of applicants get the experimental drugs already.
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Not nearly enough of them, and not nearly enough quantity.
Ain't nowhere NEAR 99%, plus this may open doors for people who do not have terminal illnesses but who are desperate to try an experimental drug to give them some of their life BACK.

My SON is ready, willing and able to volunteer for a cloned heart procedure, or even a procedure where he can "grow a new heart" using his DNA while using the connective tissue of a donor heart, i.e., a heart transplant with NO REJECTION ISSUES.

Perhaps bills like this one may open the door to something like that a little further.
I'm sure he would like to live past his thirtieth birthday.
 
OldFatGuy said:
I tell you from personal experience, very personal experience, this is not true. My wife was denied an experimental cure for Leukemia. She died. Four weeks later, the drug was approved as a therapy for her type of Leukemia. It has enjoyed a 63% cure rate for the patients who have received it.
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Good Lord, that IS A HEARTBREAK.
I am so sorry.
I don't think I'd survive if my wife went through something like that. I don't think I could handle it.
Much respect.
 
Lutherf said:
Hey, I get it. You prefer the government deciding what drugs a terminally ill patient can try instead of letting the patient and his or her doctors decide. I understand. You believe that a bureaucracy best serves the interests of the people and that if the people don't like the bureaucracy that's because they're too dumb to be allowed to think for themselves and, therefore, need a bureaucracy to do their thinking for them.
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Just require that they sign a waiver, that's all.
If I'm terminal, and I still wanted to stick around a while, and all I had to do is sign a waiver, I'll know that at least I got to have a shot at giving it a try and if it doesn't work out, I get to say I gave it my best shot.
 
Lutherf said:
169 Congressmen, exclusively Democrats, voted against this bill. Their concern seems to have been that voting for it would, in the eyes of their constituents, give Trump a "win". Party over the people, that's what we've got going on in DC. There is NO WAY this bill should have been opposed by anybody.

http://clerk.house.gov/evs/2018/roll214.xml
https://www.congress.gov/bill/115th-congress/senate-bill/204/text
Click to expand...

I hope you did not infer that strictly from the text of the bill that you linked to.
Thus it begs the question, where did you get your inference from?
Gut feeling?
 
Lutherf said:
Hey, I get it. You prefer the government deciding what drugs a terminally ill patient can try instead of letting the patient and his or her doctors decide. I understand. You believe that a bureaucracy best serves the interests of the people and that if the people don't like the bureaucracy that's because they're too dumb to be allowed to think for themselves and, therefore, need a bureaucracy to do their thinking for them.
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I guess you didn’t bother to actually understand it.

I miss interacting with educated posters...
 
Checkerboard Strangler said:
I hope you did not infer that strictly from the text of the bill that you linked to.
Thus it begs the question, where did you get your inference from?
Gut feeling?
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When all the "Nay" votes come from one side of the aisle, especially on an issue like this and on a "clean" bill (no amendments tacked on), it's rather obvious that the motivation is political.
 
Lutherf said:
When all the "Nay" votes come from one side of the aisle, especially on an issue like this and on a "clean" bill (no amendments tacked on), it's rather obvious that the motivation is political.
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Gut feeling.
I'm going to dive in later and see what there is to be seen.
Meantime, I sure hope you don't think the Dems are unique in this.

We had to put up with EIGHT YEARS of this crap from your side.
Not justifying what they did, but don't pretend, that's all I'm going to say.
 
Lutherf said:
Hey, I get it. You prefer the government deciding what drugs a terminally ill patient can try instead of letting the patient and his or her doctors decide. I understand. You believe that a bureaucracy best serves the interests of the people and that if the people don't like the bureaucracy that's because they're too dumb to be allowed to think for themselves and, therefore, need a bureaucracy to do their thinking for them.
Click to expand...

Hmmm... Where did you get your degree in pharmacology? Seriously.. why do you have the expectation that the average guy.. understands pharmacology better than experts whose sole purpose is to determine whether a particular drug is safe and effective?

This isn't the case of "people thinking for themselves"... its people having independent experts that get no financial incentive for studying these drugs, making a determination whether the drugs are safe and effective.

People and the families of people that are terminally ill are extremely vulnerable to being fleeced by "snake oil salesman".. that will sell dangerous drugs to desperate people.

the irony is that people forget where "snake oil salesman" comes from. People used to actually sell dangerous chemicals, etc.. to people to "cure" them.
 
Checkerboard Strangler said:
Good Lord, that IS A HEARTBREAK.
I am so sorry.
I don't think I'd survive if my wife went through something like that. I don't think I could handle it.
Much respect.
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I didn't handle it well. Were it not for my kids and grandkids, especially the grandkids at the time, my wife is in each of them, I wouldn't have survived.
 
OldFatGuy said:
I didn't handle it well. Were it not for my kids and grandkids, especially the grandkids at the time, my wife is in each of them, I wouldn't have survived.
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Burying a child is the Sword of Damocles that has hovered over our heads ever since our son was born.
I know that there are innumerable families out there who have been living with this same problem.
 
jaeger19 said:
People and the families of people that are terminally ill are extremely vulnerable to being fleeced by "snake oil salesman".. that will sell dangerous drugs to desperate people.

the irony is that people forget where "snake oil salesman" comes from. People used to actually sell dangerous chemicals, etc.. to people to "cure" them.
Click to expand...

At this point in time, this is an empty, specious argument. Neither this bill, nor any argument has anything to do with diminishing supervision of pharmacological experimentation and quality of pharmacological products. This is about fast tracking pharmocological products that appear promising, experimenting with consent, upon those with no other hope for continuation of life. Hyperventilating and hyperbolic discourse will help no one.

The FDA is underfunded and understaffed. It's job of guaranteeing the quality of our food supplies is enormous, and considering how much of our foodstuffs are imported, the applicable knowledge by our Customs department is also not in place. It is almost incredible that we don't suffer more illness from food. That is because food suppliers are more concerned with suffering liability law actions and damage to reputation, than FDA actions. When it comes to pharmacology and other medical technology approval processes, part of the delay is again underfunding and insufficient manpower. All too often, the problem for movement toward generic alternatives for many medical therapies is the lack of manpower for the approval process to run smoothly and timely.

When you can claim aspirin, honey, nettle teas, lanolin skin creams, and a thousand other natural products in use for thousands of years and with no side effects, but successful treatments for human maladies, you can explain how they are "snake oil" products. With all the concern about antibiotic resistant bacteria developing, medical practitioners are experimenting with the use of long abandoned sulfur drugs. They never worked as well as antibiotics, but often they did function as quality therapies. The FDA's position is that they haven't tested the efficacy of sulfur drugs for more than 50 years, and they shouldn't be used. Yet, medical practitioners who are prescribing them for their patients are finding some success when antibiotic resistant bacteria are the problem. Hospitals which use topical treatment of honey for post surgical wounds, are showing severely diminished ratios of sepsis infections. But nevertheless, you can go cry "snake oil." I like honey in my tea, and when kids had sore throats, a teaspoon of honey offered far more relief that OTC market, or prescriptions. The problem, finding unadulterated honey. Honey without corn syrup from unscrupulous vendors.

Re-examining FDA policies and correcting those that are insufficient for our needs is not a call for getting rid of the FDA, at least until we have something far better as a replacement. Such is not likely.
 
OldFatGuy said:
At this point in time, this is an empty, specious argument. Neither this bill, nor any argument has anything to do with diminishing supervision of pharmacological experimentation and quality of pharmacological products. This is about fast tracking pharmocological products that appear promising, experimenting with consent, upon those with no other hope for continuation of life. Hyperventilating and hyperbolic discourse will help no one.

The FDA is underfunded and understaffed. It's job of guaranteeing the quality of our food supplies is enormous, and considering how much of our foodstuffs are imported, the applicable knowledge by our Customs department is also not in place. It is almost incredible that we don't suffer more illness from food. That is because food suppliers are more concerned with suffering liability law actions and damage to reputation, than FDA actions. When it comes to pharmacology and other medical technology approval processes, part of the delay is again underfunding and insufficient manpower. All too often, the problem for movement toward generic alternatives for many medical therapies is the lack of manpower for the approval process to run smoothly and timely.

When you can claim aspirin, honey, nettle teas, lanolin skin creams, and a thousand other natural products in use for thousands of years and with no side effects, but successful treatments for human maladies, you can explain how they are "snake oil" products. With all the concern about antibiotic resistant bacteria developing, medical practitioners are experimenting with the use of long abandoned sulfur drugs. They never worked as well as antibiotics, but often they did function as quality therapies. The FDA's position is that they haven't tested the efficacy of sulfur drugs for more than 50 years, and they shouldn't be used. Yet, medical practitioners who are prescribing them for their patients are finding some success when antibiotic resistant bacteria are the problem. Hospitals which use topical treatment of honey for post surgical wounds, are showing severely diminished ratios of sepsis infections. But nevertheless, you can go cry "snake oil." I like honey in my tea, and when kids had sore throats, a teaspoon of honey offered far more relief that OTC market, or prescriptions. The problem, finding unadulterated honey. Honey without corn syrup from unscrupulous vendors.

Re-examining FDA policies and correcting those that are insufficient for our needs is not a call for getting rid of the FDA, at least until we have something far better as a replacement. Such is not likely.
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That’s like an advertisement for snake oil...
 
Checkerboard Strangler said:
Burying a child is the Sword of Damocles that has hovered over our heads ever since our son was born.
I know that there are innumerable families out there who have been living with this same problem.
Click to expand...

I can't think of any experience worse than burying a child. As much as I grieved for my wife, for both of us, the loss of a child, which always looms because of the fragility of life, would have been and would be far worse. As I'm sure you are, we were acquainted with those who lost a child. The emotional devastation that followed was always far more traumatic than any experienced by their other losses or self damage.
 
Threegoofs said:
That’s like an advertisement for snake oil...
Click to expand...

Still remains an empty and specious argument. Next time someone you love dearly is on the edge of death, talk to that person about snake oil and then "Take two aspirin and call me tomorrow."
 
OldFatGuy said:
Still remains an empty and specious argument. Next time someone you love dearly is on the edge of death, talk to that person about snake oil and then "Take two aspirin and call me tomorrow."
Click to expand...

Give me the name of that Leukemia drug.
 
OldFatGuy said:
I can't think of any experience worse than burying a child. As much as I grieved for my wife, for both of us, the loss of a child, which always looms because of the fragility of life, would have been and would be far worse. As I'm sure you are, we were acquainted with those who lost a child. The emotional devastation that followed was always far more traumatic than any experienced by their other losses or self damage.
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My oldest brother has buried two young sons, one from a drug overdose/possible suicide and the other from a fatal car accident.
Both in the prime of life.
I daresay that if one has been pondering something like this for twenty plus years it's traumatic but it is not the same as suddenly waking up and getting the news. It devastated the whole family, including the remaining three sons.
Not that it's better. I don't mean that, I mean we're grateful we've had our son this long. He wasn't supposed to make it at all.

And he's not at death's door either...if you meet him, he's a fairly normal happy kid.
And HE has pondered this issue right along with us, we did not lay it all on him as a youngster but we did not shelter him from the reality.
He wants to try new approaches if they become available.

I am unable to truly grasp comparisons though. A loved one is a loved one, be they a wife, child or anyone else.
Our kids know that we love them.
 
Threegoofs said:
Give me the name of that Leukemia drug.
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No. It was a tyrosine kinase inhibitor. I don't recall which one. Merely to resolve your animosity and meager attempt to discredit me gives me no cause to review my wife's medical records. I don't want that pain back in my life. You have earned no right to make that demand.

Live with your paranoia. Others now have the choice to live without your paranoia.
 
Checkerboard Strangler said:
Our kids know that we love them.
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Quantifying emotional pain is beyond me also. Ultimately, knowledge by our children, of our unconditional love for our children is what matters most.

It's a bit after 1am here. If my 8 yr old grandson doesn't get his rear end into bed and asleep, I'm gonna kick him in the pants seat. :) No, the cat doesn't want to play, she wants to sleep undisturbed by his attentions. She's exhausted from chasing and being chased by the dog around my home most of the day. Life is ruff for the two of them.

My cardiologist tells me this in the near future, nearer than we might think. He says the primary goal is a second mini heart insertion as an assist until the entire heart can be replaced. This link he sent me is from January of this year.

https://www.fastcompany.com/4051964...ll-soon-be-3d-printed-from-patients-own-cells

He's not working specifically on this program as it exists at Rockefeller University, but he's on the cardiological board there, and keeps up with the latest advances. RU has a similar program to the one mentioned in the link. He heads the cardiology board at Cornell Columbia Presbyterian, next door to RU, on York Ave in Manhattan. He tells me I will volunteer for one of the early assists, doesn't give me choice. For some strange reason, he wants to keep me around and kicking. They won't be waiting for FDA approval. They rarely do. CCP was the first American hospital to use the Israeli made artificial skin for burn victim skin reconstruction, made from the patient's stem cells. The FDA fined them $20k, yet to be collected. Meanwhile, the burn center now uses that artificial skin for every patient that needs it. Their burn unit is the best in the greater metropolitan area.
 
OldFatGuy said:
Quantifying emotional pain is beyond me also. Ultimately, knowledge by our children, of our unconditional love for our children is what matters most.

It's a bit after 1am here. If my 8 yr old grandson doesn't get his rear end into bed and asleep, I'm gonna kick him in the pants seat. :) No, the cat doesn't want to play, she wants to sleep undisturbed by his attentions. She's exhausted from chasing and being chased by the dog around my home most of the day. Life is ruff for the two of them.

My cardiologist tells me this in the near future, nearer than we might think. He says the primary goal is a second mini heart insertion as an assist until the entire heart can be replaced. This link he sent me is from January of this year.

https://www.fastcompany.com/4051964...ll-soon-be-3d-printed-from-patients-own-cells

He's not working specifically on this program as it exists at Rockefeller University, but he's on the cardiological board there, and keeps up with the latest advances. RU has a similar program to the one mentioned in the link. He heads the cardiology board at Cornell Columbia Presbyterian, next door to RU, on York Ave in Manhattan. He tells me I will volunteer for one of the early assists, doesn't give me choice. For some strange reason, he wants to keep me around and kicking. They won't be waiting for FDA approval. They rarely do. CCP was the first American hospital to use the Israeli made artificial skin for burn victim skin reconstruction, made from the patient's stem cells. The FDA fined them $20k, yet to be collected. Meanwhile, the burn center now uses that artificial skin for every patient that needs it. Their burn unit is the best in the greater metropolitan area.
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Yes, I've been keeping steady watch on the various outfits that are trying out various related ideas.
Our dog thinks both cats are her chew toys but she's never managed to catch either one of them yet.
They, on the other hand, lure her and once she's close enough, THWAP!!!

Betty_kitties1.jpg

So you might get a chance to test drive the new units, eh? Keep us posted. Daryl thinks it might be neat to have an extra heart.
 
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