On this episode of Doctor in the House, Congressman Burgess is joined by Senator Ron Johnson to discuss the passage and enactment of the Right to Try Act.
On this episode of Doctor in the House, Congressman Burgess is joined by Senator Ron Johnson to discuss the passage and enactment of the Right to Try Act.
Well, I want to welcome everyone to another episode of Doctor in the House. Today is the fifth anniversary of President Trump signing the right to Tri Act . Uh, this was a big deal During the, at the time of the bill signing, the , uh, old executive office building was filled with patients who were looking forward to being able to access treatments that previously had been denied to them. In fact, the president had said during his State of the Union address that it wasn't right, that patients with severe illnesses had to travel from country to country trying to find , uh, a treatment for their disease when the treatment had been developed and was unavailable to them in the United States of America. So it was a big deal the day that Bill was signed. And I'll have to acknowledge that the principle reason that the bill got signed into law was because of the efforts of Senator Ron Johnson from Wisconsin. And I'm very fortunate to have Senator Johnson with me here today on this episode of, of , of Doctor in the House. And Senator Johnson, let me just ask you, what was it that caused you to become interested in the whole concept of Right to try ? Well ,
Speaker 2:First of all, Congressman Doctor , I think you'd probably prefer the , the latter title.
Speaker 1:It pulls a lot better. <laugh>.
Speaker 2:Well, listen , I , I appreciate you being a doctor. Uh , my first child, my daughter care was born of the transfer of the Great Arteries. So , uh, first day of life, a , a wonderful man, Dr . John Thomas came in and , and saved her life for the balloon smy. And then eight months later, her heart decided a small plum, they reconstructed the opportunity of her heart. So her heart operates backwards, but she just turned 40. So I, I have a great reverence for doctors. So tha thank you for being one . Yes, sir . And thank , thank you for serving your country and being a champion of , uh, this bill on, on the house side . But what got me , uh, committed to championing on the Senate side was I met with a , a young mom , uh, Trickett Wendler. And , uh, she had als Yes, sir. And she came in, I had just probably met with the Goldwater Institute maybe three or four weeks before that I'd always been in favor of Right . To try . I mean , I'm , I ran a platform of freedom, what a concept. Right. And , uh, so the proximity of meeting with Goldwater, and of course they were, they were trying to push rights, try on a state by state basis. They wanted to get enough states. Yes . And again, this is a smart strategy. They got enough states passing it and then basically teeing it up for, for a federal law. And , uh, so I mentioned Trickett . I said, you know , I'm big supportive, right. To try and, and , uh, tears started sweeping me on her cheeks. And that's, that was the moment I said, okay, I'm gonna champion this in the US Senate.
Speaker 1:Well, absolutely, and thank goodness you did. And , uh, you got it passed in conjunction with an FDA reauthorization that August and then a mere <laugh> 10 or 11 months later, which is rapid for Washington time. Uh, we were at the bill signing , uh, in the old executive office building down on the, on the White House Complex. It was , uh, you got it passed over on the Senate side. And I, I don't know if anyone over here on the house side thought that it was going to happen, but when it did, then of course we had to reengage. Uh, uh, I'm on the committee on Energy and Commerce. This is within our jurisdiction, and we had to reengage and basically pass your bill , uh, because nothing else was gonna be satisfactory. And I know there's some, some back and forth, but I'm glad you stuck. I'm glad you stuck to your principles and we got a good bill passed. And you know, I just have to tell you, every time , uh, president Trump stands up and starts talking about healthcare , he almost immediately goes to Right to try because it was such a big deal. And in that day, in that auditorium, the , uh, the sense of relief from the patients who were in that room who had been waiting for that day , uh, it was palpable. Was it?
Speaker 2:Well , it , it was , um, but let's get down the weeds a little bit in terms of how this was passed. Cuz I think it's instructive in terms of what we need to do moving forward in the future. Uh, the only reason I got it passed in the Senate was because we had that , uh, FD user fee bill. Yes . It was , it was a must pass piece of legislation.
Speaker 1:I remember
Speaker 2:Nobody thought that there'd be any problems getting it through, but that was my opportunity. Um , no committee was gonna take it up. Uh, so when I objected to bringing that thing up to the floor for quick unanim , unanimous consent passage , uh, that got people's attention, and all of a sudden I've got , uh, Lamar Alexander and Patty Murray , the , the chairman and ranking member of, of the , uh, help committee to start talking to me. And we started doing negotiations. We also brought big pharma in . Now big Pharma. Uh, we accommodated some of their concerns, and I understand they got legitimate concerns. Sure . And because we accommodated their language and said, well, we're not gonna support this, but we're not gonna sabotage it. And then I would argue they came over to the house here and basically sabotage it . Because what ended up happening in the house is it became a partisan issue. We , we passed it by unanimous consent in the Senate. Correct. Okay. But all of a sudden it was , it was a partisan issue over here. And I know you guys, cuz you wanted to write pass , or wanted to pass Right. To try . You passed your version. But as , as you're aware, and President Trump became aware, there was no way we were gonna be able to take it up Correct. In, in the Senate. So the only way pass Right. To try was to pass the Senate version. And you folks fortunately did that, but, but it just shows you the power of big pharma because they, they said they weren't gonna sabotage it , but somehow I just have a feeling that they maneuvered things in the house and they came pretty close to sabotaging it.
Speaker 1:Well , yeah , we , uh, we resisted doing the right thing for a period of time. I was always with you. Just, just for the record.
Speaker 2:Oh, I know, I know. You were.
Speaker 1:But it , and I can still remember those debates on the, on the floor. Um , in fact, I was digging around through my archives and interestingly enough, there was a , uh, a Dallas lawyer who , uh, died at , uh, 61 years of age from multiple Myeloma. And in his last month of life, the Speaker Pelosi actually interceded on his behalf to get him access to a , a drug that was under investigation for treating multiple myeloma. Uh , the drug company obviously does not want anything that's gonna deflect from their ability to get their drug approved for the, for the primary purpose. But it always struck me as somewhat unfair that someone would have access to the, the highest levels of, of leadership in the House of Representatives and be able to get access to this medicine where the average person would not have the availability of doing that. Right. So, without mentioning any other names other than, than Speaker Pelosi, I mean, that was, that was one of the things that sort of drove me in this discussion that, hey, if it was right in 2008, when, when, when this unfortunate individual had his, his run-in with multiple myeloma and the Speaker of the house was able to get him access to a drug that no one else in the country would've had AC had access to , uh, we ought to be, we ought to be listening when people are, people are in tough conditions and they're, they're asking for help.
Speaker 2:But as you well know, rights Tribe is not guaranteed that it's gonna be a cure. Uh , what Rights Tribe gives patients hope and gives 'em a little more freedom. Uh, you ought at that point in time when there's no other options. I mean, you , you don't qualify for clinical trial. Your terminal, you have no place else to turn rights . Try is there for you and your doctor to try something, and that ought to be your right as an American. And that's what Right. To Try Does. But it is just a first step. It's, it's not, it's not the panacea. Right. Uh , I , I would argue, and I have introduced piece of legislation now called Right to Treat , uh, shouldn't be necessary , uh, because doctors have off-label prescription rights. But we saw during Covid, we saw during Covid that , uh, fully FDA-approved drugs that were, have been safe for years. Actually, a Nobel PRI Award , uh, winning drug , uh, all of a sudden was not available to doctors. And that's just wrong. So I think we , uh, probably need to pass something called Right to treat, to compliment . Right. To try .
Speaker 1:Well, look, I'll , uh, I don't know who , who you've got working on that, but we'll be happy to take it up on the house side because that is an important concept. And of course, any physician colleague would argue that, Hey, any FDA approved drug, I can use off-label for whatever purpose side I see fit. And we as doctors hold that. Uh , I mean that's, that's sacrosanct to us. But yes, you're quite correct. Uh , we came through a time, not just a few months ago, where authorities were used to, to stop to interfere with that process. And again, that's , uh, that's just pretty dangerous if we start interfering with, with, with clinical judgment. I'll also share with you that as a result of having that signing ceremony , uh, a couple came in to see me in my office back in the district shortly after that. They weren't constituents, but they had a son who unfortunately had mu um , muscular dystrophy and they saw the , uh, um, the bill signing. It was carried on on television, I guess. And they came in to thank me because their son had been in a clinical trial with a new medication. The FDA advisory Board said, no, and there's not enough benefit here. But their observation was, this helped our son a lot and if we stop now, he's going to lose what he has gained. So they were very excited about Right. To try and the ability to pursue what otherwise would not be available to them. Cuz the FDA had said, no, this, this is not gonna work enough for us to put a stamp of approval on it. They just, it underscored for me the power of Right to try again. They weren't constituents, but they were in my, my part of the state. And it was , uh, it was a pretty powerful , uh, pretty powerful meeting that we had.
Speaker 2:No , I've heard , uh, you know, during covid there was a , a drug , uh, ail . Uh , the trade name was isi , uh, one hospital in Texas, I think it was in Houston. Uh , I , I talked to the doctor who treated, I think she said 19 patients. That's off the top of my head, I think. And she said 16 patients walked out. They , they , these were terminal yes cases. They , they were gonna die. They were writing the last wheel testament. I asked the doctor, I said, well, so what , what extent of lung damage? I mean, what, you know, how , how'd they leave the hospital? And she said, no , Senator . These people were healed. And , uh, so that's just one example. I , I've talked to other doctors who are involved in , uh, you know, working with the fda , different medical research. They're using it for different purposes. So again, not necessarily panacea, but it does , it does provide that hope. But it , it , it's the freedom aspect of this. I mean, why , why shouldn't Americans have the freedom to make these choices , uh, in it's their life? Yeah.
Speaker 1:I had similar experience with Cami in , in a hospital just outside of my district, and they invited me to come and talk to them one afternoon. And the , the doctor who, who ran the icu, again, similar story, similar numbers to what you just reported. And at the time, I guess this was February of last year , uh, they were told by the FDA that , uh, well, we won't get around to looking at an emergency use authorization until September or October <laugh> . And in the meantime, I mean, these are patients who write, they're in the icu, they're on ventilatory support. We all know that the , uh, the survivability of that part of, of a covid infection is pretty low. And yet they were getting some mer what I would say would be miraculous saves with no subsequent sequelae. They didn't go home on high, high flow oxygen. They went home and they were better. And the only way that these patients got the medication was the manufacturer agreed to make it available on a right to try type of basis. It , that, you know, means the hospital was absorbing a lot of the expense. Uh, the pharmaceutical manufacturer was not really receiving , uh, what they would consider appropriate compensation. But at the same time, it was the right thing to do for these patients. And, you know, God bless this doctor, she stepped up and, and did the right thing. Uh , and I know , uh, I , I know there are others who've had similar experiences with that drug. And I , I'll tell you, I mean, I , we , we, we went right to the Democrats were in charge of the house back then. Uh , Dr . Harris and I went to the top of the Democratic leadership and said, help us with the fda , help us get them to understand this, this should be looked at. And we just drew a blank. And so it was a , a bureaucratic dead end. But fortunately, those patients who did have the availability because of the right to try because of your, your bill that you got signed into law, those patients were saved.
Speaker 2:Yeah . Unfortunately, it was too few. Um, but that , that's what we need to address. I mean , we need, now I've been fairly critical of the fda , of the , uh, CDC at the NIH during, during the pandemic. I think, I think our response has been a miserable failure. Uh , but we do need a federal agency that is in charge of food and drug safety. Um, and I understand when you're in charge of safety, you , you're gonna be pretty risk averse , which is why you need to, with full consent, fully informed consent, allow patients to make that choice. You know, we also need a CDC that is in charge of gathering , uh, openly and honestly and transparently information, then disseminating this the exact same way. Uh, that hasn't been the case with this CDC either. So the , from my standpoint, COVID exposed an awful lot of problems in our federal health agencies. The capture of , of those agencies by big pharma, as well as the capture of the media by big pharma, all those, you know, billions of dollars ads and , you know , advertising drugs that , uh, they always have to list just might kill you. Uh , so it's not, not a real convincing sales pitch. Those advertising dollars are , are meant to capture the narrative to , to capture the media. And tho these are things we need to look at in Congress.
Speaker 1:We sure do. And , um, you know, the , the whole discussion of the CDC and , and the fda , the N I H and the post covid environment is a much longer discussion. But I , I certainly agree with you that those, those agencies now have an enormous problem ahead of them in reestablishing credibility. They've, I mean, nobody else did it to them. They did it to themselves. It wasn't your criticism or my criticism or any other , uh, member's criticism or senator's criticism. They did it to themselves by being provably and consistently wrong and then never being willing to acknowledge that the world had shifted under their feet. Oh my gosh. It was a novel virus who could know everything about it from the get-go. And yet they want to present themselves as if they did. And you, you know, the only way to survive it is do exactly what they say until they change what they say later on. I didn't mean to go down there. We do have to, you know, there is a longer discussion about the CDC for, for the future. But , um, you know, I think I , I guess I just finish up by asking you, what do you see as the, what do you see as the next steps, the next, the next pathways that we should follow in this realm?
Speaker 2:Well , fir first to add on to what you said, you know, trust is something someone gives to you. And I think the American public had given our federal health agencies trust, and we hope that that trust would be rewarded. Uh , but they violated that trust. And trust is something very difficult , uh, when , when you lose it , uh, to , to gain it back. So that , that's something we , we need to work on. Uh , it's, it's important that the American public have yes , federal health , health agencies that are worthy of our trust, and we wanna be able to trust them . We wanna be able to trust our medical establishment. So the , the only way you reestablish that trust is by exposing the truth. You can't bury it. You can't hide it. You can't run away from it. You've gotta take a look. Okay, well, this is what happened. Let's be open and let's be transparent about it. This is what , these are the mistakes that were made. These are the lies that were told that this is what we weren't transparent about and that we can do through congressional hearings. I know you've got a committee in the house that are looking at these things. And I tell you , I , I saw the testimony. I wish I knew the , the woman's name from N nih . Um, I was more than pleasantly surprised at the honesty that she talked about saying that we, we just weren't following the science. We didn't follow the science on, on school closures. We didn't follow the science on natural immunity. Uh, we , we had our narrative. We had, you know, our response in place. And, you know, we weren't gonna let the facts for the truth get in the way. And so it's that type of openness and transparency and honesty that , uh, we're gonna need the heads of the fda , the cdc . Not not just somebody, you know , but but the fact that , uh, you know, chairman Wester got , uh, this , uh, woman to testify and she testified, honestly, there , there's a very good first start. But it's, it's about the truth.
Speaker 1:Well, it absolutely isn't. You know, have some humility when you're going into a situation that nobody's ever been in before. And you may not get it right on your first guess, and you may have to come back and revisit what you told people.
Speaker 2:You know, one , one thing, again, I'm not a doctorate like you, not a medical researcher, but I've been connected to a global network of Emily qualified doctors and researchers that just had a different approach and different opinion on how we should handle this. And by the way, isn't that we were always told about medicine, always get a second opinion. Yeah. Um, but one thing I've learned in the email groups is I've always known this, this is true about life. I mean , what we don't know so vastly exceeds what we do. And you just talked about, you know, a little more humility, a little more modesty. That's, let's be humble from the standpoint that, you know, this marvel of creation is something that is a big mystery, and there little is much more that we don't know, be humble about that seek greater wisdom. Uh , that , that's a big lesson I think that we should, should take away from , uh, the pandemic.
Speaker 1:And in the meantime, we've got to help those agencies reestablish their credibility. And we can only do that by demanding complete transparency from them going forward. And it's , uh, you know, it , it's tough job that they had through the pandemic, but Doug Audit , if conditions change you around, you be upfront . I mean , I don't know how many times I saw the CDC director go on , uh, um, Brett Bayer on Fox News in the evening, and, and basically it was a proclamation. It wasn't an acknowledgement. Yeah. Well, the science has changed underneath us, but that's what is so necessary. People need to hear that. And they were, they were anxious to hear that. And instead what they got was, this is the way you must do it. And there is no, there's no alteration from what we've already prescribed. Yeah , yeah .
Speaker 2:We , we , we all realized early on that nobody knew what this virus was and how deadly it might be and what our response ought to be. So the American public , uh, would've been, I think actually had been very forgiving of people with the awesome responsibility of making very tough decisions with very limited information. I think where you start losing that forgiveness is when in the face of other evidence, you stubbornly hung on and were more dictatorial in your pronouncements and , and your judgements you just weren't willing to change with, with the science. And that's really what that , uh, witness from N NIH was talking about. Just they declared themselves the science and then they refused to follow it,
Speaker 1:Which of course is what scientific investigation has always been about. You test your hypothesis, and if you found out you went down the wrong trail, you double back and try another one. And
Speaker 2:You be , you always be skeptical
Speaker 1:And record your results so you don't make the same mistake twice. Well, listen, Senator Johnson , I can't thank you enough for coming in to , uh, to talk about this important anniversary for the Right to Tri Act. It was indeed a milestone in the care of America's patients and the furtherance of science and, and American medical knowledge. So thank you very much for what you did to make this a reality. And , uh, we'll look forward to talking again real soon.
Speaker 2:Well, thanks for having me on. Thanks for being a doctor and thanks for helping Shepherd Right to try through the house we needed you . Thank you.
Speaker 1:Wonderful. Thank you. And we'll cue the dramatic music. This , uh, is available any place you get your podcast. And be sure to listen to all of the valuable podcasts that are available at that site.