California lawmakers introduced bipartisan legislation aimed at blocking insurers from imposing prior authorization and step therapy requirements on FDA-approved rare disease treatments.
Supporters of Assembly Bill 1887 say the measure would remove administrative barriers facing roughly one in 10 Californians living with rare conditions.
Assemblymember Rick Chavez Zbur said current utilization controls function less as cost management and more as delay. For patients with progressive, life-threatening diseases, he argued, delay translates into disability or hospitalization.
The bill would prohibit insurers from requiring fail first protocols when a specialist prescribes an FDA-approved therapy for a rare disease and no generic or biosimilar alternative exists. Lawmakers framed the change as targeted rather than broad market reform.
Under existing practice, patients who often wait seven to eight years for a diagnosis must still clear prior authorization reviews or attempt therapies their physicians consider ineffective.
According to Beinsure analysts, step therapy remains a common cost containment tool in specialty drug coverage, especially where annual treatment costs reach six figures.
Zbur described the issue as personal. His sister, diagnosed with ALS in 2017, lost mobility and later the ability to swallow. When her specialist prescribed symptom management therapies, some claims were denied as off-label. He said an insurance reviewer overrode the treating physician’s judgment.
Republican Assemblymember Jeff Gonzalez joined Democratic colleagues in backing the bill, citing his experience advocating for his son with cerebral palsy and a seizure disorder.
Bipartisan alignment around access issues remains uncommon in Sacramento. This one drew a crowd.
Dr. Pedro Sanchez of Cedars-Sinai Medical Center spoke as both pediatric geneticist and parent of a child with severe hemophilia A. His son participated in clinical trials for drugs now approved. Sanchez warned that treatments cleared by the FDA risk stalling in authorization queues.
He argued treatment delays reflect policy design rather than scientific limits. For progressive pediatric disorders, lost time often means irreversible harm.
Supporters contend the proposal would carry limited financial impact for insurers because it applies narrowly to FDA-approved rare disease drugs without lower-cost equivalents.
They argue earlier access could reduce downstream hospitalizations and complication costs.
Bridget Yates of BioMarin, which employs more than 1,600 people in California, urged passage, linking patient access to the state’s position in biotechnology research.
Assemblymember Diane Papan, who lost her brother to a rare disease, said regulatory systems should not obstruct prescribed care.
The Assembly also advanced a resolution designating Feb. 28, 2026, as Rare Disease Day with more than 74 votes. Lawmakers have since sought to join the rare disease caucus as debate over insurer utilization controls expands.
We think the fight now shifts to cost modeling and actuarial review. Access arguments resonate. Premium math still decides.
