Legislative Briefing Highlights Progress in Sickle Cell Disease Treatment & Policy

Monthly Newsletter

Legislative Briefing Highlights Progress in Sickle Cell Disease Treatment & Policy

May 2024

Legislative Briefing Highlights Progress in Sickle Cell Disease Treatment & Policy

Last week, CBF co-hosted a briefing about sickle cell disease care in California with Networking California for Sickle Cell Care, or NCSCC. From Policy to Progress: Improving Sickle Cell Care provided an overview of the progress being made to improve the lives of California adults living with sickle cell disease through high-quality, comprehensive, and equitable health care. Discussions highlighted the crucial impact statewide policies can have on this vulnerable patient population through care coordination and access to innovative medicines, as well as the model of care this Network is establishing for the rest of the country. Providers and patients also shared their firsthand experiences, detailing how care has dramatically improved since the establishment of NCSCC.

Speakers included Assemblymember Mike Gipson (D-Carson); CAPT David Wong, MD, Senior Advisor for Sickle Cell Disease, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services; Diane Nugent, MD, Founder and President, Center for Inherited Blood Disorders; Mary Brown, President and CEO, Sickle Cell Disease Foundation; Ted Love, MD, Chair, Board of Directors, Biotechnology Innovation Organization and former President and Chief Executive Officer of Global Blood Therapeutics, Inc; and a panel of provider and patients from UC Davis Sickle Cell Clinic, an NCSCC participating clinic.

Watch the May 14 recording here and watch more videos about NCSCC here.

California Life Science Community Commemorates Mental Health Month

May is Mental Health Month. It is a time to raise awareness of mental illness, erase stigma and discrimination surrounding mental health conditions, and prioritize our well-being by having open conversations about mental health. This year’s theme, Where to Start: Mental Health in a Changing World, reminds us that dealing with personal, professional, and societal pressures can be overwhelming, and everyone deserves to feel supported and empowered to seek help when needed.

Mental illness can happen to anyone. It affects every ethnic, racial, cultural, economic, and religious group, and impacts individuals of all ages and genders. Roughly 1 in every 5 adults and children – nearly 8 million Californians – will experience a diagnosable mental health issue during their lifetime. Research shows that two-thirds of those individuals may never seek professional help – despite a number of available therapies.

Many companies within the life science industry along with patient advocacy groups and community-based organizations have made it part of their mission to develop treatments and provide support to help people gain a measure of control over these types of medical conditions. In fact, there are currently more than 160 new treatments and therapies being developed by the biopharma industry to treat a complex array of mental health conditions.

CBF also wants to acknowledge some of the patient advocacy organizations who are working tirelessly for people living with mental illness and their families during this important month:

Stay informed on the latest news and trends on the economic and health benefits of this industry by visiting CABiotech.org

If you have any questions about hosting informational briefings for your colleagues serving in the legislature, contact California Biotechnology Foundation Executive Director Patty Cooper at (916)764-2434 or [email protected].