Right to Try Law passed!! But help still needed...

Ok Updated info if anyone is still involved with this.

Right to Try bill for Terminally Ill patients...

The newer updated Right to Try bill has passed in the house after failing last week. Although a great step in the right direction I’m not sure if it’s enough.

Since this isn’t the original Senate bill that I’ve wanted them to proceed with, instead a newer bill, it now must go to the Senate to pass if it’s going to be signed into law.

A bad strategy, imo but since a few of the people’s who’s names on the bill considered to be the “faces of the right to Try movement” decided to follow a freshman congressman that went in this direction. Its all we have right now.

Even on an issue like this the internal politics is severely aggravating and disgusting to me but that’s what we get for staying out of those meetings I guess.

So this is where you can help.

We need to start getting to our Senators now.

Inform them and tell them to support and pass the Right to Try bill when it comes to the Senate.

Dont let them get away with the lies that the opposition is selling.

-It does not remove FDA from the drug regulation processes. Only drugs that have passed FDA regulated Phase 1 Safety trials may be available.

-Expanded Access isn’t nearly enough and “99% approved cases” statistic they use doesn’t tell the whole story. The roughly 1500 cases a year that do get approved are a drop in the bucket compared to how many people could be served and are mostly from Research hospitals and specialty care hospitals. So that limits access in and of itself.

-This is 100% voluntary. No one will be forced to do anything. It’s voluntary for the DRs. They won’t be forced to give patients drugs, nor would they do it if they didn’t think the drug could help. It’s voluntary for the drug companies. As well as the patients. 

- Claims of false hope and the patient community being taken advantage of are straight up condescending. Drug companies can’t market drugs that haven’t yet been fully approved by the FDA, so that ends that BS. Also this is about personal freedom to do what you want for your health and well being. It’s not the responsibility of some political group, patient advocacy group or bioethicists to tell a dying person that they are only trying to protect them when they are actually tying the hands of the patients. It is up to the patient, their Dr, and their families that care for them to decide what is best for that patient. 

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

Everyone needs to get on this. There’s not a person alive who doesn’t know someone who who knows someone that could have benefitted and/or at least had the opportunity to try to extend or cure a life. 

 

Im not a wordsmith, but I am passionate about this.  There’s no reason that terminal patients shouldn’t have access to every available treatment. 

 

The fact that this isn’t a law and is being held up by politics absolutely sickens me. There is no reason not to contact your senators, make sure they know that when the time comes, you at the very least deserve their compassion and a Right To Try. 

RTT

ABCTT_Ninpo Silva -

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

No questions, but I applaud your strength and feel for you and your family. My nephew just wrapped up a battle with leukemia as an infant. The emotional strain was awful for extended family, let alone his parents.

PelosiesPanties -

I hope it passes

Give your senator a call, you’d be surprised what can happen if you take a simple action. 

ABCTT_Ninpo Silva -

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

Hi there Silva. Wonder if you have any light o shed on this quote about it:

 

 

“The fact is when a patient is denied access to an experiential treatment, it is because a company has said no, not the FDA. So let's be clear about what this legislation is. It's an attempt to undermine the authority of the expert public health agencies charged with reviewing drugs to ensure their safety and efficacy,” Pallone said during House debate of the bill.

 

Its from a Politico article: https://www.politico.com/story/2018/03/21/drugs-right-to-try-congress-434677

 

According to that quote, is the companies and not the FDA who refuses?

luctaro -
ABCTT_Ninpo Silva -

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

Hi there Silva. Wonder if you have any light o shed on this quote about it:

 

 

“The fact is when a patient is denied access to an experiential treatment, it is because a company has said no, not the FDA. So let's be clear about what this legislation is. It's an attempt to undermine the authority of the expert public health agencies charged with reviewing drugs to ensure their safety and efficacy,” Pallone said during House debate of the bill.

 

Its from a Politico article: https://www.politico.com/story/2018/03/21/drugs-right-to-try-congress-434677

 

According to that quote, is the companies and not the FDA who refuses?

Pallone doesn’t seem to get the very basic premise that this isn’t about cutting out the FDA. The FDA has regulation control of all phases of clinical trials and are always involved in ANY drugs development. He’s playing politics making those claims. Because the FDA is who judges the drug safe in the 1st phase of Clinical trials, which are the only drugs this bill would allow access to.

Drug companies do have the right to not give their drug to someone. Some companies don’t want to take the risk. They have a lot of investors involved, and want to protect their products. This bill would not force their hand and that’s not the intent of the law. 

Some companies DO want to give their drugs to see if they would help patients, they just don’t want their drug to be held accountable if the patient dies, because that could happen and it not be the drug that caused it. Being that these are most often people further along in their disease and if they die they don’t want that to have a negative impact on the drugs clinical trials.

This bill opens that up so that the people can make an educated decision on what’s best for them. They know it can be a long shot. But it’s all they have left most of the time.

Him claiming the FDA doesn’t deny access is also false. They do it by threats to DRs that want to give experimental drugs to their patients in States that have passed the R2T.

 

I hope that answers the question. Pallone is a PoS in my not so humble opinion.

PelosiesPanties -

I hope it passes

We need more than hope, like I said, we need help.

Call your state senators, and Tell others about this. Facebook/ Instagram that shit.

That alone speaks volumes and will help, even if you don’t think it will.

Share this with everyone you know, have no shame, just do it©.

ABCTT_Ninpo Silva -
luctaro -
ABCTT_Ninpo Silva -

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

Hi there Silva. Wonder if you have any light o shed on this quote about it:

 

 

“The fact is when a patient is denied access to an experiential treatment, it is because a company has said no, not the FDA. So let's be clear about what this legislation is. It's an attempt to undermine the authority of the expert public health agencies charged with reviewing drugs to ensure their safety and efficacy,” Pallone said during House debate of the bill.

 

Its from a Politico article: https://www.politico.com/story/2018/03/21/drugs-right-to-try-congress-434677

 

According to that quote, is the companies and not the FDA who refuses?

Pallone doesn’t seem to get the very basic premise that this isn’t about cutting out the FDA. The FDA has regulation control of all phases of clinical trials and are always involved in ANY drugs development. He’s playing politics making those claims. Because the FDA is who judges the drug safe in the 1st phase of Clinical trials, which are the only drugs this bill would allow access to.

Drug companies do have the right to not give their drug to someone. Some companies don’t want to take the risk. They have a lot of investors involved, and want to protect their products. This bill would not force their hand and that’s not the intent of the law. 

Some companies DO want to give their drugs to see if they would help patients, they just don’t want their drug to be held accountable if the patient dies, because that could happen and it not be the drug that caused it. Being that these are most often people further along in their disease and if they die they don’t want that to have a negative impact on the drugs clinical trials.

This bill opens that up so that the people can make an educated decision on what’s best for them. They know it can be a long shot. But it’s all they have left most of the time.

Him claiming the FDA doesn’t deny access is also false. They do it by threats to DRs that want to give experimental drugs to their patients in States that have passed the R2T.

 

I hope that answers the question. Pallone is a PoS in my not so humble opinion.

It does. I read the full article and smell very partisan to me, because they didnt bring out a strong voice for the bill and instead was full of political quotes like the one I shared, but I still wanted your opinion on them.

 

Thank you and hopefully it goes through the Senate.

luctaro -
ABCTT_Ninpo Silva -
luctaro -
ABCTT_Ninpo Silva -

As a parent with a child that was given an experimental drug and still living, even though they said he’d be dead years ago, I have a pretty unique perspective on this topic and know this, if signed into law, can help a lot of people.

Ill answer any questions you might have, when I can.

Hi there Silva. Wonder if you have any light o shed on this quote about it:

 

 

“The fact is when a patient is denied access to an experiential treatment, it is because a company has said no, not the FDA. So let's be clear about what this legislation is. It's an attempt to undermine the authority of the expert public health agencies charged with reviewing drugs to ensure their safety and efficacy,” Pallone said during House debate of the bill.

 

Its from a Politico article: https://www.politico.com/story/2018/03/21/drugs-right-to-try-congress-434677

 

According to that quote, is the companies and not the FDA who refuses?

Pallone doesn’t seem to get the very basic premise that this isn’t about cutting out the FDA. The FDA has regulation control of all phases of clinical trials and are always involved in ANY drugs development. He’s playing politics making those claims. Because the FDA is who judges the drug safe in the 1st phase of Clinical trials, which are the only drugs this bill would allow access to.

Drug companies do have the right to not give their drug to someone. Some companies don’t want to take the risk. They have a lot of investors involved, and want to protect their products. This bill would not force their hand and that’s not the intent of the law. 

Some companies DO want to give their drugs to see if they would help patients, they just don’t want their drug to be held accountable if the patient dies, because that could happen and it not be the drug that caused it. Being that these are most often people further along in their disease and if they die they don’t want that to have a negative impact on the drugs clinical trials.

This bill opens that up so that the people can make an educated decision on what’s best for them. They know it can be a long shot. But it’s all they have left most of the time.

Him claiming the FDA doesn’t deny access is also false. They do it by threats to DRs that want to give experimental drugs to their patients in States that have passed the R2T.

 

I hope that answers the question. Pallone is a PoS in my not so humble opinion.

It does. I read the full article and smell very partisan to me, because they didnt bring out a strong voice for the bill and instead was full of political quotes like the one I shared, but I still wanted your opinion on them.

 

Thank you and hopefully it goes through the Senate.

Most of the articles I’ve read on the issue are so way off and make the same faulty claims because patient advocacy groups, most of whom take political money, are straight up lying and it’s obvious they have yet to read the 4 page bill.

Its frustrating as hell. I shake my damn head everytime I read an article or see a clip about it on CNN.

https://m.facebook.com/story.php?story_fbid=2042325459129638&id=186181661410703&refsrc=https%3A%2F%2Fm.facebook.com%2Fsenronjohnson%2Fvideos%2F2042325459129638%2F&_rdr

RTT

 

Senate Rejects Bid for Quick Action on Right-to-Try Bill

WASHINGTON — US Sen. Ron Johnson (R-WI) on Friday morning failed in a bid for quick action on a House-passed bill that he says would increase the access of terminally ill patients to experimental drugs.

Critics of the measure contend it would fall short of this aim and would also undermine federal regulators and hinder medical research.

Johnson took to the Senate floor after the chamber passed a massive spending package(HR 1625) shortly after midnight on Thursday. He asked for unanimous consent for the Senate to proceed to the immediate consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2018 (HR 5247), which the House passed by a vote of 267 to 149 on March 21.

Senate Minority Leader Charles E. Schumer (D-NY) quickly rebuffed Johnson's late-night bid, and assured his colleague that he intended to join him in efforts to help more people gain access to experimental therapies.

"We will work together to get something done and done quickly, because this is an important, important issue," Schumer said on the Senate floor early Friday. "People that have terminal illnesses deserve every option and chance at survival."

"The Right Thing to Do"

Schumer and Johnson differ, though, on the role of the US Food and Drug Administration (FDA) in these efforts.

Johnson said he is seeking to create a pathway to allow people who are dying or could face premature death to decide about taking unproven medicines rather than having a "faceless bureaucrat at the FDA make that decision.

"It makes so much sense to give those terminally ill patients the freedom to make these decisions themselves," Johnson said.

He stressed that the experimental medicines in question would need to have cleared phase 1 testing, citing this as evidence of their safety and fitness for use without intense FDA monitoring. But critics of right-to-try measures note that phase 1 is an initial step largely meant to determine whether medicines are safe enough to advance in testing. Phase 1 studies are usually conducted in healthy volunteers, with medicines tested in about 20 to 80 people, according to the FDA's website.

Thus, Schumer and many Democratic colleagues say they are intent on preserving the FDA's role as a watchdog while working to encourage drugmakers to provide more people who are dying with access to experimental drugs outside of clinical trials. Rep. Frank Pallone Jr (D-NJ), for example, this week put forward a proposal intended to address concerns of drugmakers about allowing expanded use of unproven drugs. This proposal would build on the expanded access program that the FDA already has in place, Pallone said.

Johnson does have the ardent support of a Democratic colleague for his right-to-try legislation. Sen. Joe Donnelly (D-IN) was an original cosponsor of Johnson's right-to-try bill (S 204), which the Senate passed last year by unanimous consent. Johnson on Friday reiterated his call that the House vote on that measure and clear it for President Donald J. Trump.

Joining Johnson in late-night Senate floor speeches, Donnelly said he's "hopeful" that Congress will soon complete right-to-try legislation. "We will continue to work nonstop to get this done, because it's the right thing to do," Donnelly said.

 

https://www.medscape.com/viewarticle/894413

 

TTTry!