ICYMI: Ron Johnson Fights for Terminally Ill Patients with Right to Try Legislation

“Literally, tears started streaming down her cheeks”
In case you missed it, Ron continues his work to pass legislation to give terminally ill patients the right to try experimental drugs and treatments that may save their lives. During an interview with the Milwaukee Journal Sentinel, Ron told the story of meeting Trickett Wendler – a Waukesha woman who died of ALS – and how she has been his inspiration to help terminally ill patients by introducing the Trickett Wendler Right to Try Act.

Ron has written op-eds on his right to try bill in the Wall Street Journal and today in the Racine Journal Times. And you can read the full story from the Milwaukee Journal Sentinel here or read key excerpts below:

Milwaukee Journal Sentinel: Ron Johnson pushes right to try law

By Bill Glauber – September 27, 2016

Tim Wendler doesn’t give up easily.

More than a year after his wife Trickett Wendler died from amyotrophic lateral sclerosis (ALS), he is giving voice to a congressional bill in her name.

The Trickett Wendler Right to Try Act, authored by Republican U.S. Sen. Ron Johnson, would allow terminally ill patients to receive experimental drugs — which have not been approved by the Food and Drug Administration — and where no alternative exists. There is a companion bill in the House.

With 40 Republicans and two Democrats co-sponsoring the legislation, Johnson plans to try to get the measure passed by unanimous consent, perhaps as early as Wednesday. The parliamentary maneuver is unlikely to succeed, since a single senator can block the request. But the issue probably won’t fade away.

“I want to create a sense of urgency around this,” said Wendler, who lives in Pewaukee with the couple’s three children. “The bill was introduced in May and here we are in September and we’re talking about procedural things. I’m a big boy. I understand how the process is drawn out. I would like the conversation to take place much, much sooner.”

Thirty-one states have passed right-to-try laws based on model legislation created by the Goldwater Institute, a libertarian think tank. Republicans in the Wisconsin Assembly have a goal to pass such a bill in the upcoming session.

Supporters say such legislation enables those with terminal illnesses to access experimental drugs and new treatments early in the development pipeline. Eligible medications have to pass phase one of clinical trials.

“Everyone is always uncomfortable with change,” said Matt Bellina, 32, a U.S. Navy veteran from Pennsylvania who has ALS and testified last week on behalf of Johnson’s bill. “I think over time when we look back on this we’ll see that. there is no negative. You’re talking about people dying from some pretty nasty things that have no hope.”

Johnson said his measure is a federal counterpart to the state right-to-try laws. His legislation would prohibit the federal government from taking action to prevent patient access to experimental medications when several conditions are met.

Johnson introduced his bill in May and recently sent out a letter to other senators seeking their support. If he fails to get the measure passed this week, Johnson said he would seek to attach the legislation to another bill after the election.

“This isn’t a right to cure. This isn’t a right to access,” Johnson said. “It’s just giving people the freedom, if they can access, if they can afford it. It’s not forcing a manufacturer to provide it, to provide it at cost or free. It’s just providing that right to try.”

Johnson added: “This is not an anti-FDA bill. The FDA plays a vital role in terms of safety and efficacy.”

Johnson’s said his interest in the issue blossomed in 2014. He met with representatives of the Goldwater Institute, who were beginning their right-to-try push in the states. Johnson said advocates of right to try mapped out a two-step process, to show support in the states before bringing federal legislation.

Around a week later, Johnson said, he met with a group advocating for ALS patients, including Trickett Wendler. He told her he supported a federal law.

“Literally, tears started streaming down her cheeks,” he said. “There’s a moment you realize, this is really important for a person. This isn’t some theoretical good government policy thing. This is something important, I’m going to pursue it.”