Teen urges Wisconsin lawmakers to back right-to-try bill after death of mother
MADISON - The 13-year-old untucked her knees from beneath her chin and stepped up to tell lawmakers about March 18, 2015 — the day she lost her mother.
Seated in a hearing room Wednesday instead of her eighth-grade classroom, Tealyn Wendler of Pewaukee helped her father, Tim, make the case for so-called right-to-try legislation, which could help terminally ill patients with no other options try experimental drugs and unproven treatments.
"To this day, we all wait for someone to do something but not any more," Tealyn said in an unwavering voice. "It’s time for a movement, a change and a cure. And that begins with right to try."
Her testimony showcased the emotional power of the proposal and the challenge ahead for opponents, who say the bill offers false hope to vulnerable families and could do more harm than good.
Assembly Bill 69 has the backing of some of the most conservative and liberal lawmakers in Wisconsin, giving it a strong chance of passing over the next year. The legislation would allow terminally ill patients and their doctors to choose together to try treatments that have not received full approval from the federal Food and Drug Administration.
Rep. Pat Snyder (R-Schofield), the bill's lead sponsor, said that he believed patients would understand the risks. The treatments allowed under the bill have passed a phase one FDA test, meaning that they've been judged less likely to kill patients but still haven't been shown to help them.
"This is the last chance. They are terminal. They are going to die and this is maybe giving them a little bit of hope," Snyder said.
Similar legislation has passed in 31 states and is being pushed in Congress by U.S. Sen. Ron Johnson of Wisconsin. The Wendler family — including Tealyn — has pushed for the bill on Capitol Hill and met earlier this month with Vice President Mike Pence to tell its story.
"It was surreal," the teen says of the White House visit, during which Pence shot a selfie with Tealyn on her phone.
Tealyn's mother had amyotrophic lateral sclerosis, often known as ALS or Lou Gehrig's disease, and lost her fight with it after participating in two clinical trials and trying to participate in more.
The state legislation isn't a guarantee for families like the Wendlers. It's also being opposed by the Wisconsin Medical Society because it could disrupt the existing system of clinical trials that help determine whether drugs work safely and effectively for a broader group of patients.
Mark Grapentine, a lobbyist for the state doctors group, said it is hard for patients and families facing death to make decisions with a cool head. It's tough for lawmakers, too, he said.
"It’s very, very difficult when the emotions are high in rooms like this," he said.
The Assembly Health Committee met on the bill on the same day that Gov. Scott Walker ordered that flags at the Capitol be lowered on March 4 for Rep. Tom Larson, who died last week. Rep. Kathleen Bernier (R-Chippewa Falls) tearfully recalled Larson's unsuccessful fight against cancer and said the bill could help others in that situation.
"We have hope again," Bernier said.
But critics say supporters of the legislation may be disappointed since it doesn't require a drug company or a patient's doctor to grant a patient's request. The bill also doesn't require health insurers to cover the treatments and leaves open the question of whether a patient could be on the hook if the experimental treatment worsens their condition and leaves them with more medical bills.
The proposal's opponents say patients can gain access to experimental drugs through the FDA's policy of expanded access.
Rep. Debra Kolste (D-Janesville), a medical technician who formerly ran a health clinic, said hope had to be backed up with results.
"I have been in medicine for five decades and I have a lot of concerns about this bill," Kolste said. "This feels like a good bill … but we have to rely on good science."
Alison Bateman-House, a bioethicist and public health researcher at New York University Langone Medical Center, said in an interview last year that right-to-try laws are misguided and deceptive.
"The present system, which is expanded access through the FDA, actually gets people access to drugs," she said. "There is no confirmed instance of anyone getting a drug through right-to-try. On the face of it, one policy works, one policy doesn't."