Ron is working for Wisconsin families by introducing a bill, named after a Waukesha woman, that would allow terminally ill patients the right to try experimental drugs that may save their lives. As Ron said, “In 2014, I met with a brave Wisconsin woman, Trickett Wendler, who was fighting ALS. Trickett passed away last year, but her spirit and her fight are among the reasons I am passionate about this issue — because I know that today, and every day, millions of Americans are fighting similar life-and-death battles to save themselves and their loved ones.”
Weakened from the devastating effects of amyotrophic lateral sclerosis, Trickett Wendler showed her internal strength in a 2014 video appeal.
“I have ALS. Last year I was a healthy 39-year-old and balancing a career and 10 years of marriage. And this year I am battling for my life,” the Waukesha mother of three said in 3-minute video titled “Trickett’s Story.”
It was filmed in 2014.
In March 2015, Wendler lost her courageous battle against the “nightmare disease.”
Often referred to as Lou Gehrig’s disease because of the baseball legend who died of the neurological condition, ALS is a thief. A bully. A kidnapper. A murderer. ALS doesn’t allow your muscles to take commands from your mind anymore.
“Eventually you are not able to move or breathe,” Wendler said in the video. “This nightmare disease considers everyone fair game. I was literally taking Zumba classes in March and in a wheelchair by July.”
While her husband, Tim, her three young children, the world, lost this courageous woman to ALS, the work she did to shine light on the disease lives on.
On Tuesday, U.S. Sen. Ron Johnson, R-Oshkosh, introduced the Trickett Wendler Right to Try Act of 2016. A similar bill was introduced in the House in 2015.
The bill aims to ensure that terminally ill patients, their doctors, and pharmaceutical manufacturers are allowed to administer investigational treatments where no approved alternative exists.
“Many of us have felt that sense of desperation – of urgency – when we learn that we or someone we love is fighting for their life,” Johnson said in a statement following a meeting with ALS patients and those affected by the glacial federal drug approval processes.
There is no cure, and only one drug approved by the U.S. Food and Drug Administration modestly extends survival, according to the ALS Association.
“In an era of unprecedented medical innovation, we have to do more to ensure that patients facing terminal illnesses have access to potentially life-saving treatments,” Johnson said. “These patients don’t have the time to wait – often years and years – for the FDA to grant final approval. For Trickett, and for countless others facing terminal illnesses, now is the time to give more patients a chance to save their lives.”
When all other treatments have failed for people who are terminally ill, some hope to try experimental drugs. However, federal law limits access to such treatments, in most cases, unless patients have been accepted into a clinical trial. One of Wisconsin’s U.S. senators is trying to gut that restriction.
Sen. Ron Johnson wants terminally ill patients to be able to use experimental drugs when no other alternatives remain. His proposal would apply to people with conditions such as ALS, which took the life of Waukesha resident Trickett Wendler in March of 2015. During her two-year battle, Wendler documented its devastation in a series of TV interviews on Channel 6.
“There aren’t survivors from ALS. It is a disease that causes your brain to stop communicating to your nerves. Your nerves don’t talk to your muscles anymore. And eventually you’re not able to move and talk…breathing usually becomes the biggest problem,” Trickett Wendler said.
Trickett Wendler was survived by three children and her husband, Tim. He traveled to Washington, D.C. to lend his support Tuesday to Sen. Johnson as the Republican announced his Right to Try bill. Tim Wendler told us he favors allowing people to take experimental drugs, even if they’re not participating in a clinical trial. He says the standard treatment his wife received was inadequate.
“Trickett was diagnosed three years ago, and she was prescribed the same drug that her father was prescribed 25 years ago…I mean, it’s disappointing, there’s literally been no progress,” he says. Tim Wendler says a Right to Try law would come too late to help his wife. However, he says it could be vital to their children.
“We’ve got three kids — 12, 10 and eight. And 20 years from now, God forbid, if my kids or other kids are diagnosed with ALS, it cannot be the same drug prescribed. We should be doing everything that we can to loosen up those regulations, to allow people to have the choice, the right to try,” he says.
From the Waukesha Freeman: