Sacramento, CA – Monday, Assemblymember Marie Waldron (R – Valley Center) introduced AB 1944, legislation to allow patients with rare and ultra-rare diseases to work with their doctors to seek cutting-edge individualized treatments.
Rapid advances in medical innovation enable researchers to design treatments specifically tailored to individual patients based on their genetic information. Sadly, many patients with rare diseases will never have the opportunity to try these groundbreaking treatments. The current FDA clinical trial process for new treatments is extremely expensive, can take more than a decade to complete, and is not designed with rare diseases or orphan drugs in mind.
AB 1944 seeks to correct this regulatory mismatch and put promising treatments within reach to improve quality of life and save lives. Building on the success and framework of California’s original, groundbreaking “Right to Try” law from 2016, this legislation creates an additional, safe pathway for patients with rare and ultra-rare diseases to seek investigational treatments designed just for them in federally approved facilities.
“Patients diagnosed with life-threatening diseases should be allowed access to individualized treatments based on their genetics. Existing regulations that create barriers to accessing innovating treatments should not stand in their way. Passage of AB 1944 will save lives and bring the promise of 21st century medicine to Californians TODAY,” said Waldron.
Assemblymember Marie Waldron, R- Valley Center, represents the 75th Assembly District in the California Legislature, which includes the cities of Poway, Santee, portions of the City of San Diego, and most of rural eastern and northern San Diego County.