Mr. Speaker, I ask unanimous consent that all Members have 5 legislative days in which to revise and extend their remarks and include extraneous material on the topic of this Special Order. Mr. Speaker, I am here this evening, along with…
Mr. Speaker, I ask unanimous consent that all Members have 5 legislative days in which to revise and extend their remarks and include extraneous material on the topic of this Special Order.
Mr. Speaker, I am here this evening, along with my friend and colleague, Representative Brian Fitzpatrick, as we advocate for the passage of the Right to Try Act. This bill, which we introduced together, has dozens of bipartisan cosponsors, including Members here tonight.
We are both supportive of Senator Ron Johnson's efforts to champion Right to Try in the Senate. He has been a tireless advocate of Right to Try for years, and his bill has already passed the Senate with unanimous consent. If you are watching the Senate very closely, you will know that nothing comes out of there, and certainly nothing with unanimous consent; so that tells how strong the sentiment is in favor of this bill.
Our legislation allows terminally ill patients who have no further options left--I repeat that, no further options left--the opportunity to try experimental drugs that could save their own lives.
Yes, there are also provisions in our bill to protect both the patients, as well as the pharmaceutical companies who want to participate, but those provisions are secondary to the primary purpose of this legislation. The primary purpose of the Right to Try Act is to give brave patients across this country some choice over their own destinies, when all other avenues are gone.
We want to give hope to these Americans, and we should all share that same goal of doing everything we can for patients fighting to save their lives. This policy has significant bipartisan support. The Trump administration strongly supports Right to Try, and President Trump has indicated he would likely sign this bill into law.
Time is of the essence, for time is one thing a terminally ill patient does not have. And the status quo is not the answer. The FDA and other agency officials claim that their own expanded access program is working and continues to improve. There may be some truth to that, but the program is simply not enough; and I know that because I have talked to dozens and dozens of patients, family members, and advocates who tell me it is not enough. They come to my office, they call me on the phone, they write me impassioned letters.
These same advocates have ensured that Right to Try has become law in 38 States. Think about that for a moment. With one more State, you could actually ratify a Constitutional amendment. And in half of those 38 States, Right to Try laws passed with unanimous support. In my home State of Arizona, voters approved that initiative by 80 percent of the popular vote.
At a time when pundits are claiming that our politics are broken, and Republicans and Democrats can't come together on anything, here is a cause that Americans of all political stripes can unite in.
Mr. Speaker, I yield to the gentleman from Pennsylvania (Mr. Fitzpatrick).
Mr. Speaker, I thank Mr. Fitzpatrick; I appreciate all that he has done and continues to do in this cause, this important cause. He is a great leader in this, and I am grateful for all of his effort here.
At this point, Mr. Speaker, I am pleased to yield to the gentleman from Florida (Mr. Gaetz).
Mr. Speaker, I thank the gentleman from Florida for his impassioned speech, his position, his comments regarding the bill, and his desire to see it altered, but I do appreciate his support of the bill.
Mr. Speaker, I am certainly grateful to have this opportunity to yield to the gentleman from Pennsylvania (Mr. Smucker).
Mr. Speaker, I thank Mr. Smucker; I appreciate his comments and his willingness to participate this evening.
Mr. Speaker, I am pleased to yield to the gentleman from Arizona (Mr. Gosar).
Mr. Speaker, I thank all of my colleagues who have joined us tonight to champion the cause and inquire how much time I have remaining.
Mr. Speaker, in closing, I want to mention how I came to really be converted to the cause of right to try.
I served in the Arizona State Legislature with Laura Knaperek, who was also serving in the legislature when I first met her. By 2014, she was no longer serving in the State legislature. She was an advocate. That year, Laura was in the fight of her life against ovarian cancer, and her mission was to see right-to-try legislation passed into law.
In the end, her efforts for this cause succeeded beyond everyone's wildest expectations when 80 percent of the electorate in Arizona voted to enact right to try. But, unfortunately, Laura is not with us because she lost her brave battle with cancer last year. Her legacy as a tireless patient advocate lives on.
I will continue to carry on the fight not just for Laura Knaperek, but for all those patients across this country who are battling against the odds every day.
I am joined by those who are here tonight, those who have cosponsored this bill, and many other advocacy groups, such as the Goldwater Institute in Arizona that continues to fight for this.
I fight for Bertrand Might. Bertrand is a very special little boy. He was the first person ever to be diagnosed with a rare, fatal genetic disorder called NGLY1 that has left this 7-year-old paralyzed. Because the disease was only identified by scientists in 2012 and only a few people worldwide have been diagnosed with it, there is no cure and no treatment available. Because the disorder is so rare, a drug may never be developed to treat it.
But scientists have found that Bertrand responds to certain investigational therapies. So Bertrand's family will have to rely on trying those new investigational medications as long as they have access to them. That is why we need this right-to-try legislation.
I fight for Jordan McLinn. Seven-year-old Jordan says he wants to grow up to be a firefighter so he can save lives. He has Duchenne muscular dystrophy, which could leave him paralyzed within 5 years and shortens his life expectancy to only 20 years. There is a drug now being used in clinical trials that is helping young people like Jordan, but it could take another 7 years for that drug to be available on the market. His parents cannot afford to wait for the FDA to give that drug its final approval. He could be in a wheelchair by then. This investigational drug could add years to Jordan's life, which would give him the chance to save others.
We have already heard, when Representative Fitzpatrick discussed Matt Bellina, his needs and his advocacy. We fight for him, and we fight for Mikaela Knapp.
At 24, Mikaela was diagnosed with a deadly form of kidney cancer that had already migrated into her bones before she even knew she was sick. She went through every known treatment in a matter of months and nothing worked. Her high school sweetheart, Keith, heard about a drug under development that was successfully treating people with this same cancer, but Mikaela was not allowed to enroll in the clinical trial. Mikaela and Keith launched a social media campaign to try to get access to the drug, but it wasn't enough. The FDA didn't help.
Mikaela died on April 24, 2014. Five months later, on September 4, the FDA gave final approval to the drug that might have saved her.
I fight for Diego Morris. When he was 10 years old, Diego woke up with a sore leg that his mom thought was just another sports injury, but the pain didn't go away. They knew something was wrong, but they never expected osteosarcoma, a rare form of bone cancer.
After exhausting all treatments available, Diego's doctors recommended he try mifamurtide, which wasn't available in the United States but was being safely used and had been given the Prix Galien Award, the gold medal for pharmaceutical development in England. The Morris family wasted no time and made the move abroad to try to save Diego's life. The treatments worked. Now Diego is back home in Phoenix and back to playing his favorite sports.
We fight unitedly for the countless other patients who deserve a right to try. We must act without further delay. Again, I thank those who have been here to testify tonight.
Mr. Speaker, I yield back the balance of my time.