Zbur Bill to Create a Rare Disease Advisory Council Advances to the Senate

For immediate release:

Friday, May 24, 2024

The Jacqueline Marie Zbur Rare Disease Advisory Council, named in memory of Assemblymember Zbur's sister, passes the Assembly and advances to the Senate

SACRAMENTO, CA - Assembly Democratic Caucus Chair Rick Chavez Zbur (D-Hollywood) announced that the California State Assembly passed AB 2613, the Jacqueline Marie Zbur Rare Disease Advisory Council with zero "No" votes, and now advances to the California State Senate. AB 2613, named after Assemblymember Zbur's late sister, aims to create a Rare Disease Advisory Council (RDAC) in California, comprised of experts and stakeholders across the rare disease community, to serve as an advisory body to the Legislature to develop policy recommendations. The bill is proudly sponsored by the National Organization for Rare Disorders (NORD), a leading nonprofit patient advocacy organization dedicated to helping the estimated 1-in-10 Californians living with rare diseases.

"My sister Jackie was diagnosed with ALS in 2017, and bravely fought every day until her death in 2020," said Assemblymember Rick Chavez Zbur. "I watched, with horror, as her body betrayed her and she lost the use of her legs, her arms, and even the ability to swallow, necessitating the use of a feeding tube. I also watched as she tried to navigate the complex and unforgiving medical system that failed to support her - treating her as a fatality while she was still alive and refusing her access to prescribed experimental treatments because they were off-label. She deserved better. With the creation of the Jacqueline Marie Zbur Rare Disease Advisory Council, I hope that we can give all people with rare diseases a voice in the Legislature to guide and inform changes to the medical, legal, and social systems that impact them."

A rare disease is defined by the U.S. Food and Drug Administration as one that affects 200,000 or fewer Americans. There are approximately 10,000 rare diseases collectively impacting more than 30 million individuals, half of whom are children. Many rare diseases are life-limiting or life-threatening and 95% do not yet have a safe and effective FDA-approved treatment. Rare disease patients face unique challenges every day, from obtaining an accurate and timely diagnosis and accessing medical specialists with knowledge of their condition, to battling for access to quality care and therapies, and receiving fair insurance coverage for their treatment and care. It is difficult for state policymakers and government officials to have an in-depth understanding of the issues faced by rare disease community members, and the resources needed to support them.

AB 2613 will create a Rare Disease Advisory Council (RDAC) in California, serving as a vital platform to amplify the voices of millions of Californians grappling with rare diseases. This council would engage with the Medi-Cal Drug Use Review Board, make recommendations for the improvement of Medi-Cal and state-regulated private health insurance, and identify areas of unmet need for research and opportunities for collaboration with stakeholders and RDACs in other states that can inform future RDAC work. This bill would also require the RDAC to submit a report of their work to the legislature.

"We are thankful to Assemblymember Zbur for championing this pivotal legislation to create a Rare Disease Advisory Council to help the millions of Californians with rare diseases," said Lindsey Viscarra, State Policy Manager at the National Organization for Rare Disorders. "There are more than 10,000 rare diseases and while each is unique, common challenges exist for patients, which can be improved by policies and legislation. We are encouraged by California's efforts to advance AB 2613 and join the28 states that already have established an RDAC. We are grateful to Assemblymember Zbur for sharing his story, which helps show no one is unaffected by rare disease, and for his efforts to ensure California families do not need to navigate the barriers to care that his sister did as a rare disease patient."

AB 2613 now moves to the California State Senate where it will be heard in the coming weeks.

Assemblymember Rick Chavez Zbur serves as the Democratic Caucus Chair for the California State Assembly and represents the 51st Assembly District, which includes Universal City, Hollywood, Hancock Park, West Hollywood, Beverly Hills, Westwood, West Los Angeles, Santa Monica, and other portions of Los Angeles.

CONTACT: Vienna Montague, (916) 319-2051, [email protected]