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CLSA Wire

CLSA Hosts Successful Legislative Briefings on Diabetes and Gene Therapy

By Brett Johnson
August 20, 2018

August has been a successful month for CLSA in educating the California state legislature on issues of critical importance to the life sciences industry in California.

Diabetes Briefing

On Aug. 8, CLSA welcomed a packed house of mostly legislative staff to the California State Capitol’s Eureka Room for a legislative briefing on diabetes prevention and care in California’s communities of color. The briefing was conducted in partnership with the California Latino Legislative Caucus and the California Legislative Black Caucus and specifically focused on the challenges, approaches, and potential future for diabetes prevention and care in California’s underrepresented communities.

 A number of legislators attended and participated in the program. Senator Ben Hueso, Chair of the California Latino Legislative Caucus, provided opening remarks, and Assemblymember Jim Cooper provided remarks on behalf of the California Legislative Black Caucus. Dr. Joaquin Arambula, as the California legislature’s only Latino medical doctor, also provided an in-depth look at how diabetes impacted Fresno County and how environmental factors, such as a lack of parks and poor water quality, contributed to diabetes. Senator Jerry Hill and Assemblymember Cecilia Aguiar-Curry were also in attendance.

Panelists included representatives from the American Diabetes Association, the Latino Coalition for a Healthy California, Eli Lilly, Sanofi, Boehringer Ingelheim, and Abbott Diabetes Care. Sara Radcliffe, President and CEO of CLSA, provided closing remarks.

Gene Therapy Briefing

The following week, on Aug.  14, CLSA, in partnership with Cal RARE, the California Legislative Rare Disease Caucus, the California Legislative Select Committee on Biotechnology, BioMarin, UltraGenyx and Audentes, hosted a legislative briefing on the transformative potential of gene therapy and its implication for patients affected by rare diseases.

Assemblymember Kevin Mullin (Chair, Select Committee on Biotechnology), Assemblymember Rob Bonta (Chair, Rare Disease Caucus), and Assemblymember Brian Maienschein (Vice Chair, Rare Disease Caucus) provided opening remarks and an overview of the role both the Select Committee on Biotechnology and the Rare Disease Caucus play to ensure the industry thrives in its innovation towards cures and treatments in the rare disease space.

Among the presenters, Angela Ramirez, founder of Cal RARE, described the challenges faced by many patients who are struggling with rare diseases. She also discussed Cal RARE’s goal to raise awareness among the public and policymakers regarding rare diseases. “We want to bring awareness to the issues rare disease patients face and continue the work to ensure access to physicians and treatments,” said Ramirez.

Dr. Mark Kay, a professor and head of human gene therapy division at Stanford University, touched upon the science behind gene therapy. His presentation included information about the mechanism of gene therapies in a human body, what the researchers are trying to accomplish in terms of fixing a mutation in the genes, and the recent successes in curing retinal eye blindness, Car-T for certain blood cancers, and Parkinson’s disease.

Several patients provided their perspectives regarding living with Hemophilia A or raising a child with Duchenne Muscular Dystrophy. Oliver Rocroi, Senior Director, State Government Relations for CLSA, provided insight on what the industry is doing to make sure policymakers are continuously being educated about gene therapy and empowered to shape sound public policy advancing innovation that improves access and patients’ lives.

If you have any thoughts on potential topics for future legislative briefings or would like to participate in or help coordinate future briefings, please contact Manny Heer, Director, Alliance Development & Advocacy (mheer@califesciences.org) or Brett Johnson, Senior Director, Policy & Regulatory Affairs, (bjohnson@califesciences.org).