California legislators unveiled bipartisan legislation Tuesday that would eliminate insurance barriers preventing patients with rare diseases from accessing FDA-approved treatments, a measure supporters say could end dangerous delays for the estimated one in 10 Californians living with such conditions.
Assembly Bill 1887, introduced by Assemblymember Rick Chavez Zbur, D-Hollywood, would prohibit insurance companies from requiring prior authorization or "step therapy" — often called "fail first" policies — for rare disease treatments prescribed by specialists.
"That's not cost control, that's just delay," Zbur said at a Capitol press conference. "For patients living with rare, progressive and life-threatening conditions, those delays can mean permanent disability, hospitalization or even worse."
The legislation comes as California positions itself as a global leader in rare disease research and biotechnology, yet patients in the state often cannot access the cutting-edge therapies developed here due to administrative hurdles.
Under current insurance practices, patients who have often waited seven to eight years for a diagnosis must then navigate bureaucratic requirements that force them to try treatments their doctors know will not work before accessing appropriate care.
For Zbur, the issue is deeply personal. His sister Jackie was diagnosed with ALS — Lou Gehrig's disease — in 2017. He watched her lose mobility in her legs, then her arms, and eventually her ability to swallow. When her specialist prescribed treatments to manage her symptoms, some were denied by insurance because they were considered off-label.
"Her doctor, a specialist in ALS, determined what care she needed, but an insurance reviewer who never treated ALS and had never even met my sister got the final say," Zbur said. "Jackie wasn't denied because the treatment was unsafe. She was denied because of bureaucracy."
The bill has drawn unusual bipartisan support in a politically divided era. Republican Assemblymember Jeff Gonzalez of District 36, who advocates for his son with cerebral palsy and a seizure disorder, stood alongside Democratic colleagues at the announcement.
"You have Republicans and Democrats standing here together, saying we choose people over party," Gonzalez said. "We choose to unite and say we've got to get some work done."
Dr. Pedro Sanchez, a pediatrician and medical geneticist at Cedars-Sinai in Los Angeles, spoke both as a physician and as a father. His 10-year-old son Joaquin was born with severe hemophilia A and has participated in two clinical trials for medications now on the market.
"What a shame it would be for these rare disease therapies to get through the FDA and ultimately get stuck in prior authorization limbo," Sanchez said. "No family should have to fight both a rare disease and a system meant to support them."
Sanchez emphasized that delays in treatment are not failures of science but failures of policy.
"For a child with a progressive rare disease, every delay can mean irreversible harm," he said. "Administrative hurdles do not improve care. They prolong suffering."
The legislation stipulates that when no generic or biosimilar alternative exists for an FDA-approved rare disease treatment, insurers cannot impose additional requirements. Supporters argue this approach has minimal impact on insurer finances while reducing long-term costs from preventable complications and hospitalizations.
Bridget Yates, director of research and early development at BioMarin, a Marin County biotechnology company with more than 1,600 California employees, urged passage of the measure.
"By working together, we can ensure that California continues to be a leader in health innovation and compassion," Yates said.
Assemblymember Diane Papan, whose district includes the birthplace of biotechnology, lost her brother to a rare disease at age 21.
"Systems should not get in the way of treatment," Papan said. "That is where we as policymakers come in."
A related resolution designating Feb. 28, 2026, as Rare Disease Day passed the Assembly floor this week with more than 74 votes.
The rare disease caucus reported receiving multiple requests from lawmakers to join following the legislative push.