Johnson pushes ‘right-to-try’
Bill would aid terminally ill
U.S. Sen. Ron Johnson reintroduced “right-to-try” legislation Tuesday in a bid to allow terminally ill patients to receive experimental drugs not approved by the U.S. Food and Drug Administration.
The Republican from Oshkosh chairs the Senate Homeland Security & Governmental Affairs Committee. He sought to move similar legislation last year, but his effort was blocked by then-Senate Minority Leader Harry Reid of Nevada.
Johnson has named his bill after Trickett Wendler of Pewaukee, who in 2015 died from amyotrophic lateral sclerosis, known as ALS. The measure is a federal counterpart to legislation that has passed in 33 states. Johnson’s legislation, with 43 co-sponsors, would prohibit the federal government from taking action to prevent patient access to experimental medications when several conditions are met.
Supporters say rightto-try 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.
Critics say the legislation offers false hope, because the laws don’t require a company to grant a patient’s request. They say patients can gain access to experimental drugs through the FDA’s policy of expanded access.
“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 Tuesday. “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. These patients don’t have the time to wait — often years and years — for the FDA to grant final approval. For countless Americans facing terminal illnesses, now is the time to give them a chance to save their lives — to give them hope.”
This month, Johnson and right-to-try advocate Frank Mongiello, who has ALS, wrote to Vice President Mike Pence about the legislation.
“This bill is, and will remain, a top priority for myself and Frank,” the letter said. “We believe that with the presidentelect’s and your leadership, we can begin to remove barriers to treatment and finally provide patients with the hope they deserve.”