Waukesha family wants "right to try" for the terminally ill
Tim Wendler says when his wife Trickett was diagnosed with ALS, they spent a full year searching for a cure.
"Everybody's working hard," Wendler said. "Everybody's trying to find a cure, but there is no cure. It's a terminal illness."
Eventually, they exhausted their efforts.
"You're taking a look at the clock, and you're saying how much time is left? Are we going to spend our time, in clinical trials, where we know there is no cure, or are we going to spend time with our loved ones and family?"
They found Sen. Ron Johnson, R-WI, who's goal to give terminally ill the "right to try" non-FDA approved medicine, gave them hope.
"We're not talking about snake oil," Johnson said. "We're talking about drugs that manufacturers are pouring millions of dollars into getting eventual approval, but we just haven't passed that final hurdle."
Pew research shows nearly half of Americans have a friend or relative who's been diagnosed with a terminal illness in the last five years. Johnson included Trickett's name in his "right to try" bill, and has continued pushing it for years.
"I think a number of terminally ill patients, probably thousands, haven't had access to drugs that might have had a positive effect on their condition," Johnson said.
But it stalled, and Trickett passed away three years ago. Wendler continued the fight for his kids. Trickett had a rare form of hereditary ALS.
"The kids don't have a mom," Wendler said. "And they're predisposed for a disease that has a terminal diagnoses with it...obviously, there's no more important mission in life for us than to find a cure."
They now have hope. President Donald Trump supported "right to try" in his state of the union speech, and it's a priority for Vice President Mike Pence, who invited the Wendler family to the White House.
"President Trump in announcing his strong support in the state of the union, really kickstarted this process," Johnson said.
But groups like Susan G Komen say it puts patients at an unnecessary risk, when the FDA approves 99 percent of experimental requests for the terminally ill anyway.
Tim Wendler says he doesn't think right to try could have saved his wife, but it might save his kids.
"So creating a sense of urgency for folks," Wendler said. "Making them understand that we're talking about people who are dying. Every day."
A version of "Right to try" passed the House last week, but Johnson is calling on House Speaker Paul Ryan to pass his version, which made it out of the Senate unanimously.