It’s an incredibly popular initiative called “Right to Try.” The idea is to give terminally ill patients better access to experimental drugs. It has bipartisan support across the country. But a bill that would make it the law of the land is stuck in Congress. Its sponsor is Senator Ron Johnson.
Sharyl Attkisson: So give us a thumbnail sketch of what Right-to-Try is.
Sen. Ron Johnson: It's hope. Bottom line it's hope for terminal patients that have nowhere else to turn. Specifically, all it does is it allows patients and their families to access a drug that is already past Phase I, the safety approval process of the FDA, and still going through approval which means the manufacturers have no obligation to provide these, although if they do provide it, they can only charge what it costs.
Sharyl: The idea is that they have nothing much to lose if they take an experimental drug, and maybe it helps things?
Johnson: It gives them some hope. It's not a panacea, it's not going to necessarily cure diseases, but we have absolutely cases where people's lives have been saved. One of the namesakes on Right-to-Try, Matt Bellina, former Navy pilot, has ALS. And he has two drug manufacturers that have experimental drugs, that would qualify - that would give him access to, with Right-to-Try, once he has that liability protection. They won't give him access to that under the Expanded Access Program of the FDA. So Matt Bellina is saying, ‘a vote against Right-to-Try is literally a vote to kill me.’ He's putting it in that stark of terms. That’s what he believes.
Sharyl: Right-to-Try then indemnifies or exempts from legal action the drug companies that do take part and allow this to happen?
Johnson: It provides liability protection, not against willful negligence, but just liability protection for those drug manufacturers, in case they offer a drug to a terminal patient and that patient dies. And trust me, these terminal patients will sign, you know, stacks of paper providing those liability waivers.
Sharyl: What is the history of this type of legislation at the state level?
Johnson: So, just recently the 40th state passed Right-to-Try. When it passes the states, almost 98% of state legislators who vote on this, vote yes. Just a fraction over 2% vote no. In the Senate, 100% of senators -- we passed this by unanimous consent. And then we moved over to the House and they didn't act on it, until President Trump made that a priority in the "State of the Union" address in January 2018.
President Trump: I want to give them a chance, right here at home, it’s time for Congress to give these wonderful, incredible Americans the Right to Try.
Johnson: I could not have been happier, I leapt to my feet.
Sharyl: After the President’s call, the House passed its own “Right to Try” bill. But the way Congress works, the House and Senate have to pass the exact same version before it becomes law. And so far, the House won’t allow a vote on the Senate version.
Sharyl: People will not understand why Republican leadership in the House aren't calling this for a vote.
Johnson: There are forces in the House, I can't identify them, they're trying to undermine this. I'm afraid that every day that goes by, those forces might become more and more successful. This is our opportunity. If Democrats gain control, it was Representative Pallone that lobbied against it as did former Speaker Pelosi. So if the Democrats get control of the House, Right-to-Try dies. And that would be a travesty.
Sharyl: When you said Speaker Pelosi lobbied against it, what are the objections they raised publicly to this idea?
Johnson: It makes no sense to me why anybody would be opposed to this. It's about freedom. This is about hope. But they say, you know, you're creating false hope. You're giving patients false hope. I don't believe so. I have faith in the individuals, dying patients to be able to make those decisions for themselves. And again, this is all about freedom, it's about providing people some hope.
We asked Nancy Pelosi, the Democrats’ leader in the House, why she objects to Right to Try. We also asked House Speaker Paul Ryan why Republicans won’t allow the Senate version to be voted on. Neither responded to our requests.