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CLSA Wire

Sacramento at a Glance — March 6, 2015 — Deadline to Introduce Bills in State Legislature; Merger Update
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Deadline to Introduce Bills in Sacramento

Feb. 27 was the deadline for state lawmakers to introduce the bills they will consider for the current legislative year. From now until Sept. 11, 2015, legislators have the time to send these measures to the Governor for a signature or veto. For the past several weeks and throughout these next weeks, CHI will be analyzing the immense number of bills in order to continue advocating for policies that improve public health and ensure continued vitality of the life sciences sector.

If you would like to participate, the following is the information for the meeting:

Date:                   Monday, March 9
Time:                   3:30-5:00 pm PT
Location:            Manatt Conference Room
                           1215 K Street, Suite 1900

Phone:                We will provide you with an operator-assisted call in number.

Please contact Christina Hwee, CHI’s state government affairs associate (Hwee@chi.org or 916-233-3497) if you need more information.

BayBio and CHI Merge to Form the California Life Sciences Association (CLSA)

We are delighted to announce that BayBio and the California Healthcare Institute (CHI) legally merged on March 4, 2015 to form the California Life Sciences Association (CLSA) which will be led by Sara Radcliffe, CLSA’s newly announced President and CEO. Radcliffe has worked in life sciences advocacy and policy for more than two decades, most recently serving as Executive Vice President for Health for the Washington, D.C.-based Biotechnology Industry Organization (BIO).

Over the next two months, our integration teams will be working diligently to develop and unveil the new logo, website, DBA name, mission statement and other branding materials. Until then, employees of CLSA will continue operating under the BayBio and CHI brands. The California Life Sciences Association will be headquartered in California with offices in San Diego, South San Francisco and Sacramento, as well as Washington, D.C. We expect to announce our new combined organization membership rates during the second quarter of 2015. The new membership rates will go into effect starting Jan. 1, 2016.

We are also pleased to announce a new robust staff structure that will empower CLSA to be the largest and strongest statewide public policy and advocacy voice at the federal, state and local level for the continued growth and advancement of life sciences in California. Under the new structure, Todd Gillenwater will lead all global, federal and state public policy advocacy and communications efforts; Misha Tsirulnikov will lead programs, marketing and events; Holly Frisque will oversee our membership and administration efforts; and Molly Ingraham will lead business development ventures. In addition, Lori Lindburg will continue to serve as Executive Director of the BayBio Institute, which builds the life sciences sector by fostering STEM education, career development, and entrepreneurship.

As changes continue to occur, members should continue to work with their usual contacts from the respective BayBio and CHI teams. Internally, our integration teams continue to focus on matters such as customer experience under CLSA, integration of our policy and advocacy agendas, detailed articulation of our member value proposition, integration of our programming and events schedules, and operational integration and legal/regulatory compliance.

We thank you for your continued support and engagement during this merge, and look forward to serving you as one unified voice of the California life sciences sector in 2015 and beyond! For more information, please contact Will Zasadny, CHI’s manager – communications (Zasadny@chi.org or 858-456-8885).

CHI Spotlights Impact of Rare Diseases

On March 2, CHI partnered with Assemblymember Katcho Achadjian and the National Organization for Rare Disorders (NORD) to present an Assembly resolution that recognized Feb. 28, 2015 as Rare Disease Day for the families and healthcare professionals caring for millions of Californians living with nearly 7,000 rare diseases. The presentation included Senator Richard Pan, M.D.; Assemblymember Katcho Achadjian; William Zrnchik II, CEO, International Pemphigus and Pempigoid Fondation (IPPF); Andrea Vergne, the mother of a son with a rare disease; Gary Sherwood, Communications Director, National  Alopecia Areata Foundation (NAFF); and Eve Bukowski, Vice President of State Government Affairs, California Healthcare Institute. This ceremony was designed to raise awareness of rare diseases and bring together legislators, patient advocates, caregivers of patients with rare conditions, families, advocacy groups and those who continue to be affected by rare diseases.


Asm. Katcho Achadjian with patients & advocates on the State Capitol steps, March 2.

Andrea Vergne, the mother of a son with unbalanced translocation between chromosome 8p and 12 dup commented on the difficulties and struggles that come with having a child born with a rare disease. From medical treatments to misdiagnosis from medical professionals, it has been a struggle for both of them on this journey.

“We as parents and caregivers need to push forward so that one day our children can participate in activities of daily living and further advance their quality of life,” said Vergne. “Our schools can play a vital role in investing and preparing them to transition to independent living is essential. We need to support each other and acknowledge all small victories and celebrate triumphs.”

“The prevalence of rare diseases today should encourage patients, medical professionals, and Californians to come together to bring about a greater understanding of the over 7,000 rare diseases that currently exist,” said Assemblymember Achadjian. “I am proud to partner with the California Healthcare Institute to recognize Rare Disease Day in 2015 and raise awareness about this critical issue that affects nearly 30 million Americans.”


Sen. Richard Pan, M.D. makes remarks during Rare Disease Day activities at the State Capitol, March 2.

As a pediatrician who sees patients with rare diseases, Senator Richard Pan, M.D., added, “we want to be sure that particularly for people with rare conditions, that we not only continue to invest in new research but also the new treatments and cures for that as well. We need to move beyond treatments to cures, but that’s going to take continued investment.”


Eve Bukowski, CHI’s Vice President of State Government Affairs and a stage IV colon cancer survior makes remarks during Rare Disease Day activities at the State Capitol, March 2.

Rare Disease Day is dedicated to the families and caretakers who understand the difficulties that come with patients diagnosed with a rare condition. CHI remains committed to promoting and strengthening initiatives that support scientific innovation in California, so that one day we may find a cure. For more on Rare Diseases, please read our published article Combating Rare Diseases in the 21st Century. Click here to view the press release regarding the resolution and activities on March 2.

CHI and Legislative Events

Monthly Speaker Series

Senate Health Committee Vice Chair Janet Nguyen

Date:                     Wednesday, March 18, 2015, 12:00 pm
Location:
CMTA Conference Room
1115 11th Street
Sacramento, CA 95814

CHI Meet and Greets

Assemblymember Jay Obernolte

Date:            Tuesday, March 24, 3:30 pm
Location:       TBD

Assemblymember Freddie Rodriguez 

Date:            Monday, April 6, 4 pm
Location:       TBD

Upcoming Fundraisers

Senator Janet Nguyen

Date:            Monday, March 9, 5:30 pm
Location:
58 Degrees
1217 18th Street
Sacramento, CA 95816

Speaker Toni Atkins

Date:            Thursday, March 12, 2015, 6-8 pm
Location:
Hilton San Diego
1775 East Mission Bay Drive
San Diego, CA 92109

In the News

Vaccination Fight Comes to Capitol

Two State Senators Richard Pan, M.D. and Ben Allen are carrying Senate Bill 277 to eliminate the “personal belief” vaccine exemption. Several parents from both sides lobbied lawmakers about the bill. Proponents of it have argued that there is a need to protect their children, especially with the recent measles outbreaks in Disneyland this last month. Others argue that the government should not interfere with medical choices that should be left to the parents. Learn more and read the full article at The Modesto Bee.

13.5 Million Californians Affected by Anthem Cyberattack, Officials Say

Earlier this month, the nation’s second-largest health insurer, was affected by a massive data breach where up to 80 million American’s personal information, Social Security numbers, dates of birth and other sensitive details were exposed. Anthem has continued to investigate the data breech and is now offering two years of free identity theft protection and credit monitoring. Learn more and read the full article at the Los Angeles Times.

Covered California Launches Special Enrollment Period

Covered California will extend the deadline enrollment period from Feb. 23 to April 30for consumers who have been unaware of the new tax penalty for whose foregoing insurance. Covered California said in a statement, the fines will be based on personal income, and for many, this may be first time they are hit with a penalty. Learn more and read the full article at the Sacramento Business Journal.

Higher Demand Unlikely to Overwhelm Doctors in California, Other States

With the implementation of the ACA, many are concerned about having enough primary doctors to see patients. According to the Commonwealth Fund issue brief, new findings predict that on average there will be 13.04 addition emergency department visits and 1.16 additional primary care visits per week by newly insured individuals. Learn more and read the full article at California Healthline.