Legislative Branch Appropriations Act, 2017--Continued
Floor Speech
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Mr. JOHNSON. Mr. President, I rise today to ask my colleagues to honor the life of Trickett Wendler, pictured here, who was a young mother of three who fought and lost her battle with ALS disease, and the lives of so many others who want the right to try to save their lives by passing the Trickett Wendler Right to Try Act of 2016.
Now, like so many of my colleagues, we are often visited by our constituents, people who are battling their own diseases, whether it is ALS or Duchenne muscular dystrophy, or different forms of cancer.
This is a very simple bill. What it is trying to do is very simple.
It is trying to restore freedom. It is trying to give patients and their families hope--the freedom and hope that is being denied them right now by our Federal bureaucracy.
This is a bill about people. Coming from my own standpoint, I think all of us recognize ALS as--initially, in its original name--Lou Gehrig's disease. I certainly understood a little bit more about ALS when I heard about Tom Watson's caddy. Then in Oshkosh, WI, a family member of our Lourdes High School family was stricken with ALS--Doug Potarske. He courageously battled the disease and lost his fight as well.
I met Trickett Wendler on May 23, 2014, when she came to Washington, DC, with a group of other advocates for ALS cures. Simply talking about my meeting with the Goldwater Institute and the bill they were promoting through the States--the Right to Try--and indicating to her my support for it, tears began streaming down her cheeks. She wanted that hope.
But along this path, as I have advocated for the Right to Try bill, I have met other individuals--people like Matt Bellina, a former Navy pilot who testified before our committee just yesterday. He is a father of two, with his wife expecting their third child. He is also fighting ALS. He wants hope.
During our press conference, when I introduced this piece of legislation, a man from Pennsylvania, Frank Mongiello, asked to say a few words. Already pretty far advanced in his ALS, it was difficult to understand Frank, but he quoted Abraham Lincoln. Abraham Lincoln said: ``If you get shot, you die once. If you dream, you die over and over again.'' He made the point that not having access to some of these treatments for ALS is like dying over and over again. He wants some hope to be able to stay alive for his wife and six children.
This bill isn't only about ALS, though. It is about other incurable diseases. It is about other terminal patients who have no further treatment options--little boys like Jordan McLinn, who also testified before our committee with his mother, Laura, a volunteer firefighter, and who is suffering from Duchenne muscular dystrophy, a disease that is also terminal.
This disease in particular indicates the problem we have with the FDA. There were more than 50 patients and advocates for an effective treatment, something that is being proven to be effective to extend the muscle function of these little boys. The FDA had an advisory committee meeting and listened to the testimony of over 50 Americans begging the FDA to allow and approve that treatment. The FDA advisory committee voted 7 to 3 and said no, we are not going to give you that right; we are not going to give you that hope.
Now, fortunately, I was overjoyed a couple of Mondays ago when the FDA overruled that advisory committee and actually approved those drugs and provided some hope.
If we want to understand how broken the process is, let me give a couple of metrics. In the decade of the 1990s, it took about 10 years from discovery to approval of a new drug. Today that time period stands at about 14 years. In today's dollars, in 2004, it cost about $1 billion for a successful drug to go through that approval process.
Today, it costs about $2.6 billion to have a drug approved. That indicates there is something wrong with the system. The Right to Try bill addresses what is wrong. It is not a panacea, but it is a good first step.
The last person I wish to speak about is someone I consider a hero, someone I consider as a whistleblower, a courageous oncologist from Houston, TX, whose name is Dr. Ebrahim Delpassand. Dr. Delpassand was part of a clinical trial treating neuroendocrine cancer with a therapeutic agent called LU-177 octreotate. He was, in his opinion, successfully treating these cancer patients. He was extending their lives, but he butted up against a limit in terms of a clinical trial of 150 patients. So he requested from the FDA to expand that to include another 78 of his patients who were terminal, who were dying from this aggressive form of cancer. The FDA said no.
Now, fortunately, for that doctor and those 78 patients, Texas had passed a Right to Try bill. The problem is the FDA has not weighed in. We don't know whether the FDA will challenge these Right to Try bills.
I could not get an answer from the FDA bureaucrats as to whether or not they are going to challenge it. So Dr. Delpassand took it upon himself and, on behalf of his patients, courageously began treating those additional 78 patients. They are alive today because of his courage, with no help from the FDA.
Thirty-two States now have enacted their own individual Right to Try legislation. In those States, 4,186 legislators--both Democrat and Republican--have voted on those bills. Only 108 have voted no, and 4,078 legislators--97.4 percent of legislators in 32 States--have voted yes to Right to Try. There is nothing partisan about this. This is a completely bipartisan effort--again, trying to restore freedom, trying to restore hope.
The latest State was California. Governor Brown just signed that bill into law. We had in front of our committee last week State assembly majority leader Ian Calderon--a Democrat, I might add--who is a sponsor of that Right to Try bill.
So all I am asking--we have 42 cosponsors of this bill in the Senate.
I have asked my other colleagues to join us as cosponsors. I realize that some of them don't want to go that far. All I am asking is that no Senator stand up and object to providing a little bit of freedom, a little bit of hope to patients who simply have no other avenue.
Now, to be respectful of people's time, let me move to my request. I see Senator Barrasso is here, and if he would also like to speak to this bill, I would like to give him that opportunity.
Mr. President, I ask unanimous consent that the Committee on Health, Education, Labor, and Pensions be discharged from further consideration of S. 2912 and the Senate proceed to its immediate consideration; and I ask unanimous consent that the bill be read a third time and passed, and the motion to reconsider be considered made and laid upon the table.
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Mr. JOHNSON. Mr. President, this is beyond disappointing that the minority leader would refer to this as potentially a partisan bill. Let me reiterate. In 32 States, where 4,186 State legislators have voted on this, 4,078 have voted yes, Republicans and Democrats alike--97.4 percent. This is a bipartisan effort. It provides freedom, it provides hope, and it is beyond disappointing that the minority leader would object.
I would ask my colleague Mr. Barrasso, the Senator from Wyoming, who has been a real leader on the issue, for example, with Duchenne muscular dystrophy, what has he heard from patients and his constituents in terms of the hope that this bill will provide them?
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Mr. JOHNSON. Mr. President, I thank the Senator from Wyoming for his leadership on this issue. I want to also point out how bad I feel and how sad it truly is because some of those individuals I spoke of--some of those patients and families--were watching on C-SPAN today. They had their hopes up that the minority leader would not play politics with this issue, would not play politics with their lives. In the last 15 minutes, those hopes have also been dashed. I care about that.
I note for the Record that in my committee we have held two hearings on this Right to Try bill so the minority leader is simply incorrect when he says we have not held hearings. We have fully vetted this piece of legislation.
I once again point out how bipartisan this has been in the States-- 97.4 percent of State legislators who voted on this have voted in
support of it.
I have another colleague, the Senator from Indiana, who has joined me in a number of instances in writing to the FDA to try and break the logjam on some of these treatments, making them available to people, giving them hope.
I would ask the Senator from Indiana what stories he has to tell about his constituents who are asking for that freedom, that right to try, that right to hope?
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Mr. JOHNSON. I certainly thank the Senator from Indiana for his support on this issue. I will conclude by saying, this is a sad day for the U.S. Senate; that the minority leader would turn his back on terminal patients and their families, deny them that freedom, that right to try, that right to hope, to score a political point--it is a sad day for the U.S. Senate.
I yield the floor.
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