, ,

Wisconsin Lawmakers Consider Right-To-Try Bill

Committee Will Vote On Proposal Next Week

Wisconsin state Capitol
Rob Chandanals (CC BY-NC-ND 2.0)

On Wednesday, families who have lost loved ones with ALS told lawmakers that Wisconsin should join 33 other states and pass a so-called “right-to-try” law.

Such laws allow terminally ill patients to try drugs not yet approved by the Food and Drug Administration.

Rep. Patrick Snyder, R-Schofield, is one author of the state bill. He said Wednesday at a hearing before the Assembly Committee on Health that drug approvals can take years and that some people can’t get in clinical trials to access experimental treatments being tested.

Stay informed on the latest news

Sign up for WPR’s email newsletter.

This field is for validation purposes and should be left unchanged.

“Far too often in our current system, by the time the drug is available, it is too late,” Snyder said.

Tim Wendler and his daughter Tealyn of Pewaukee both spoke in favor of the law. Wendler’s wife, and Tealyn’s mother – Trickett – died of ALS in 2015.

“I’m not naive or arrogant enough to stand here before you and say if this bill were in place five or 10 years ago, that Trickett would be here … that we would have found a cure for ALS. What I will say, without hesitation, is that this bill would have provided hope for us,” Tim Wendler said.

Mark Grapentine from the Wisconsin Medical Society said the “author (of the bill) brings a lot of genuine desire to help.” But Grapentine said just because the drugs must pass a phase one clinical trial, that doesn’t mean they are effective, rather it’s to determine whether the drug is toxic.

“You have that lottery ticket type hope that you think (the treatment or drug) is going to be the key to either recovery or making your conditions less worse to deal with,” Grapentine said.

The Wisconsin Medical Society is also concerned patients who could be in FDA-approved clinical trials might instead go the experimental route, Grapentine said.

“There are concerns that through more widespread utilization of a bill like this you can actually retard efforts to let the science move forward in the best way for the most people,” Grapentine said.

Wendler testified that his wife participated in two clinical trials for ALS and was turned down for three others.

Peter Moe, who also has ALS, told lawmakers he’s been turned down for a dozen clinical trials. The Seymour resident also looked into a separate, FDA-approved program called “compassionate use,” which allows expanded use of experimental drugs not in clinical trials. But he said the paperwork was cumbersome.

“For people like me, time is a pretty precious commodity. I don’t have time for that,” Moe said.

Grapentine said doctors understand patient’s desire for speed, but he said the FDA and doctors need data on what works and what doesn’t.

“Everybody wants to move swiftly because we want to help people,” Grapentine said. “We get that, and physicians get that. But science sometimes has to take its time. You have to do the research you have to do the studies.”

But Moe said that shouldn’t be for the government to decide unilaterally.

“I believe I have a constitutional right and the ability to make an informed decision on experimental drugs – the benefits versus the risks,” Moe said.

But even a supporter of the bill, Rep. David Murphy, R-Greenville, expressed concerns that the bill might give people false hope. The bill does not require companies to provide experimental drugs.

The committee will vote on the bill Wednesday.