Get the Facts: Right to Try
I met Trickett Wendler on May 8, 2014, approximately two weeks after meeting with the Goldwater Institute on their strategy to pass Right to Try legislation on a state-by-state basis. Right to Try laws allow patients with terminal diagnoses to utilize drugs and medical treatments before they are fully approved by the FDA. In the land of the free, home of the brave, these laws made perfect sense to me, and I have always been supportive of them.
Trickett was a young mother of three beautiful children, and she had recently been diagnosed with ALS, frequently referred to as Lou Gehrig’s disease. There are no known cures, and the disease is always fatal. Trickett was in D.C. advocating for herself and others stricken with this horrible disease. When I mentioned my meeting with, and support for, the Goldwater Institute’s efforts regarding Right to Try, tears began streaming down Trickett’s cheeks. It was at that moment I decided to champion federal Right to Try legislation.
Little did I know how much resistance I would encounter during the four-year path to its final passage. Opposition to Right to Try came from both Big PHARMA and the FDA. Drug companies have legitimate concerns that terminal patients using their experimental drugs will lead to adverse effects and prevent drugs that should be approved from gaining FDA approval. The FDA’s opposition was more baffling. I assume it’s either its risk-averse nature or regulatory capture of the agency by Big PHARMA.
Before I go on, it is important to understand that I am generally supportive of the pharmaceutical industry. I want them to succeed so they can research and develop life-saving and life-improving drugs. But my experience passing Right to Try and now advocating for early treatment of COVID and the COVID vaccine-injured has opened my eyes to the unacceptable amount of power and influence they exert.
At first, we made very little progress. PHARMA’s resistance and influence were simply too pervasive and powerful. But then an opportunity arose. A bill Big PHARMA and the FDA needed, the FDA User Fee Bill, had been passed by the House and needed to pass in the Senate. I won’t go into the current dysfunction of Congress, other than to say we don’t pass bills the way the founders envisioned. Instead of allowing the process to proceed with amendments being offered to improve or make changes, leadership decides on the final bill and rams it through once they know they have the votes. But this process often requires the consent of every Senator, and on this bill, I threatened to withhold my consent on what was considered a “must-pass” piece of legislation.
As you can imagine, that certainly got everyone’s attention. They had not left enough time to go through regular order, just assuming they would easily pass the bill – so they needed unanimous consent for a vote. By threatening to withhold consent, I finally started making progress. Big PHARMA became more accommodating, as did the Chair and Ranking Member of the committee of jurisdiction. In the end, we hammered out a compromise, and my Right to Try legislation passed the Senate on August 3, 2017, by unanimous consent. But now we had to pass it in the House.
As part of the negotiations, Big PHARMA did not support the legislation, but they agreed to not oppose it in either the Senate or the House. Curiously, however, in the House, we ran into opposition from the Democrat Ranking Member of the committee of jurisdiction. Because the House only requires a simple majority, Democrat opposition should have been meaningless, particularly when President Trump and Vice President Pence had made Right to Try an administration priority.
But all of a sudden, what had appeared to be a certain path to House passage, became a surreal kabuki dance designed to prevent Right to Try from becoming law. Even though they had agreed not to oppose its passage, I smelled the influence of Big PHARMA. I made the White House and Republican House leadership fully aware of the fact that the Senate would not be able to pass another version of Right to Try. But in spite of my warnings, the House proceeded to pass a partisan bill that they knew full well would NEVER pass the Senate. They knew in doing so, they were killing Right to Try, along with the hopes of all the terminal patients and their families who had been advocating for it for years.
That included three ALS patients and a little boy suffering from Duchenne Muscular Dystrophy who were the namesakes of the Senate Bill: Trickett Wendler, Frank Mongiello, Matthew Bellina, and 8-year-old Jordan McLinn. House members actually had Jordan on the House floor during the debate on their bill as they knew they were killing Right to Try. Out of many examples, that was probably one of the most disgusting and craven political maneuvers I’ve witnessed serving in Congress.
Fortunately, President Trump was dedicated to seeing Right to Try pass. He twisted the arms of House leadership and got them to pass the Senate version, which he signed into law on May 30, 2018.
Since passage, Right to Try has provided a little more freedom and hope to terminal patients and their families. Recently, at one hospital, 19 end-stage COVID patients used Right to Try to access a new drug, Zyesami. For 16 of the 19 patients, Zyesami cleared up their lungs and saved their lives.
I couldn’t be happier for those patients and their families. It is humbling to know that something you did actually saved another person’s life. In an election, it’s also important that voters know the truth about what a candidate has done and who a candidate really is. Unfortunately, the Democrats and their allies in the media continue to peddle lies, distort my record and what I say, and engage in the politics of personal destruction. That is one of the reasons I am announcing a new ad today highlighting the way Right to Try changed the lives of Kelley Sweet and Mark Akins, whose mom was saved by drugs made available because of my legislation. Watch the new ad HERE.
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