Bill to create Rare Disease Advisory Council moves to governor’s desk

A bill to establish an advisory council on rare diseases has passed both houses of the California State Legislature and now awaits the governor’s signature, Assemblyman Rick Chavez Zbur, D-Hollywood, announced Wednesday.

Assembly Bill 2613 seeks to establish the Jacqueline Marie Zbur Rare Disease Advisory Council composed of patients, caregivers, medical experts and advocates. The council’s task will be to identify gaps in care, recommend improvements to programs such as Medi-Cal and promote research and innovation, according to Chavez Zbur’s office.

More than 10,000 rare diseases affect 10% of the state’s residents, and the bill aims to help state policies better reflect the needs of this vulnerable population, Chavez Zbur said, adding that key policy decisions often happen without input from those most affected, which in turn raises the risk of unfavorable outcomes for patients’ health and finances.

“AB 2613 represents a significant step forward in our efforts to support the millions of Californians living with rare diseases,” Chavez Zbur said in a statement. “This bill is deeply personal for me, inspired by my sister Jackie, whose struggle with ALS highlighted the shortcomings of our broken healthcare system. She made me promise to do whatever I could to fix it, and this bill is one of the ways I am fulfilling that promise. I believe it will make a real difference for countless families across our state, and amplify the voices of those affected while providing the Legislature with the guidance needed to create meaningful policies that address the unique challenges faced by the rare disease community.”

Lindsey Viscarra, state policy manager for the National Organization for Rare Disorders, said in a statement, “We are thankful to Assemblymember Zbur for championing this important legislation to create the Jacqueline Marie Zbur Rare Disease Advisory Council in California, and the rare disease patients and caregivers whose advocacy efforts helped this bill pass both houses of the Legislature unanimously. There are more than 10,000 rare diseases and while each is unique, common challenges exist for patients, which can be improved by giving the rare disease community a prominent voice in state government decision making. We urge Governor Newsom to sign AB2613 into law as soon as possible.”

The governor has until Sept. 30 to sign the bill.