California Assembly Bill AR16

California 2023-2024 Regular Session

• Introduced: 2/17/23
• Refer: 2/23/23
• Passed: 3/2/23

Caption

Relative to Rare Disease Day.

Impact

By proclaiming February 28 as Rare Disease Day in California, AR16 aims to raise public awareness and promote understanding of the challenges faced by individuals and families affected by rare diseases. The resolution also highlights the urgent need for increased funding for research and advocacy to develop new treatments for these conditions, many of which remain unaddressed by current medical advancements. Although over 600 treatments for rare diseases exist, millions continue to live without viable options, underscoring the importance of public support and awareness.

Summary

House Resolution No. 16 (AR16) introduced by Assembly Member Maienschein emphasizes the significance of Rare Disease Day, which is observed on February 28 each year. This resolution recognizes the impact of nearly 7,000 rare diseases that affect less than 200,000 individuals each in the United States, collectively impacting around 30 million Americans. It calls attention to the struggles faced by patients with rare diseases, including diagnostic delays and limited access to effective treatments.

Contention

While the resolution is largely non-controversial and received broad support in the legislature, some discussions surrounding similar initiatives often revolve around resource allocation for rare disease research versus more prevalent health issues. Advocates for rare diseases argue that these conditions deserve equal attention to improve diagnostic capabilities and treatment access, while critics raise concerns about the possibility of marginalizing other health priorities. Nevertheless, the resolution aligns with broader public health goals in California to improve healthcare systems and patient outcomes across the board.