WASHINGTON — Chairman Ron Johnson (R-Wis.) expressed his support for a right to try — allowing terminally ill patients access to drugs not yet approved by the Food and Drug Administration to save their own lives — at a hearing Thursday of the Senate Homeland Security and Governmental Affairs Committee. Witnesses at the hearing on connecting patients to new and potential life-saving treatments spoke of their need for treatments and the barriers posed by the FDA.
Click here to watch Chairman Johnson’s opening remarks
Johnson added, “The purpose of this hearing now is to put a face — a human face — so that we in Congress can make some intelligent decisions here, so that we can try and break through the legitimate concerns, whether it’s the FDA or the drug manufacturers. And give people, give patients the freedom and the access so they have hope. And that’s really what this hearing is all about.”
During the hearing, Johnson read a letter submitted by Tim Wendler of Waukesha, Wis., in support of a right to try. Excerpts from the letter are below:
“My wife Trickett Wendler passed on March 18, 2015, after a two-year battle with ALS. When she was first diagnosed, we scoured the country to find the best doctors, medicine, treatments, etc. The only treatment drug prescribed for my wife was the exact same drug that was prescribed to her father over 20 years ago—literally no progress. … I pray every day that progress is made to find a cure, and my children are not given the same drug that their mother and grandfather were given. But if none is made, I pray that my children will have the right to try.”
Mr. Wendler’s full letter can be seen by clicking here.
Laura McLinn and her 6-year-old son, Jordan, testified before the committee. Jordan was diagnosed with Duchenne Muscular Dystrophy just a few months before his fourth birthday.
Last spring, the Right to Try Law passed in Indiana. Laura McLinn said, “Please, in order to help Jordan and all other boys living with Duchenne, encourage the FDA to use the tools you have given them to expedite life-saving drugs to patients.”
Diego Morris, another witness at the hearing, was diagnosed with osteosarcoma at the age of 11 and traveled to Europe in order to access a drug needed to treat his cancer that was not available in the United States.
Morris added, “I hope and pray we can make it possible for Americans to have easier, faster access to critical medical treatment. Please help us give Americans a better chance to save their own lives and those of their loved ones. No guarantees — just hope.”
Click here to view highlights from the hearing
Darcy Olsen, the president and CEO of the Goldwater Institute, which advocates for right to try laws throughout the United States, said during the hearing, “The right to try to save your own life is the most personal right we have. It is unethical and unconstitutional for government to deny patients that right. In America today, terminal patients have the right to hasten their deaths through right to die laws, but they do not have the right to try to fight to live. You can get drugs to end your life but not to save it. I think most of us would agree there’s something desperately wrong with that.”
Sen. Johnson concluded, “We are in America. This is the land of the free, home of the brave. It should be up to patients, not the government to tell you what you can and can’t do.”
Johnson’s opening statement can be found here.
The full hearing can be found here.
Witness testimony can be found here.