Fortenberry introduces legislation to help with access to critical ALS therapies

Staff Writer
Syracuse Journal-Democrat

Congressman Jeff Fortenberry (NE-01) offered the following statement on June 16 after introducing the Accelerating Access to Critical Therapies for ALS Act in the U.S. House of Representatives. The bill expands ALS patient access to promising treatments beyond the clinical trial and establishes a Center of Excellence for Neurodegenerative Diseases at the FDA to accelerate development and approval of such therapies.

“Just over one month ago, my wife’s brother died from ALS. He was 37, with a wife and four small children. His suffering, the heartache, the toll on his family is repeated over and over in families throughout America,” Fortenberry said.

“New treatments for ALS are bringing hope. But drug trials can drag on for a decade or longer. Victims of fast-moving ALS do not have that kind of time. Our regulatory process does not match the urgency of the disease. It’s killing hope. Let’s do something about it,” Fortenberry added.

Rick Laswell of Lincoln added: “Having ALS has led me to want to do whatever I can to help others with the same awful disease. Congressman Fortenberry’s bill ACT for ALS gives me hope that people in Washington are listening to our cry for help.”

Link to Bill:

Congressman Jeff Fortenberry is the Ranking Member of the House Appropriations Subcommittee on Agriculture, Rural Development, and Food and Drug Administration (FDA).