Leadership & Members

Inspired By Need, Triumphant Through Action

California Chronic Care Coalition Leadership

While passion is often the fuel that inspires us to action, the CCCC’s core leadership is comprised of established professionals with the knowledge and experience to make change possible.

Elizabeth Helms

President and CEO

Liz Helms has been a leader within the patient’s rights movement since her recovery from Temporomandibular Joint Disorder (TMJ) in the mid-1990s. Her vision, breadth of knowledge and unwavering commitment to coalition building, grassroots advocacy, strategic planning, and policy development has earned her immense recognition and respect throughout California and nationally.

After co-founding the TMJ Society of California, a 501(c) 3 non-profit organization dedicated to bringing about changes in health care practices and laws to improve treatment for TMJ sufferers, she has helped shepherd many broad-based, first of-it’s-kind patient rights laws in California. Liz currently is the President/CEO of the California Chronic Care Coalition, an alliance of non-profit, social consumer and provider organizations united to improve the health of Californians with chronic conditions or diseases. Liz leads the National Stakeholders Specialty Medication Collaboratory, working to ensure access to affordable medications and advocates for the enforcement of anti-discrimination laws in the ACA. Liz was instrumental in bringing the clinical pharmacist on the care team to the Right Care Initiative which won her the Michelotti Public Health Prize from the CA Pharmacy Foundation. In addition to her CCCC leadership roles, Ms. Helms has been the catalyst within the chronic disease community working with the California administration’s health policy division on health care reform, including implementation of prevention, wellness and coordination of care. In 2013 she was elected to the board of directors to the California Healthcare Performance Information System (CHPI) representing California’s consumers and serves on many advisory committees including:
California Department of Public Health, Chronic Disease Division, Prevention 21, which includes: Comprehensive Medication Management, SALT, Healthy Hearts CA. Additionally, she is a member or advisor on CA Telehealth Coalition; UC Berkeley, School of Public Health – PCORI grant: “The Comparative Impact of Patient Activation and Engagement on Improving Patient-Centered Outcomes of Care in Accountable Care Organizations”, and is a member of the CA Right Care Initiative. Recently Liz was elected to a national AIMM board, (Alliance of Integrated Medication Management).

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Estela Mata-Carcamo

Board Chair

Estela Mata-Carcamo is the President and co-founder of Looms for Lupus, a non-profit organization providing lupus, fibromyalgia and mental health awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers.

Estela is also an ambassador of hope and co-founder of Mata Advocacy and Support (MAS) an advocacy consulting firm dedicated to improving the lives of those in need, where her 30 years of healthcare experience combined with her personal experience as a patient and caregiver help bridge the connection and fosters continuous engagement between all stakeholders (industry and patient).  As a community leader and healthcare advocate she partners and works on initiatives in collaboration with local, national, and global organizations including the U.S. Department of Health and Human Services’ Office of Minority Health and the U.S. Food and Drug Administration’s Office of Minority Health and Health to increase awareness on the need for diversity in lupus clinical trials. She is a Virtual Advisor Team member for both the All of us Research Program and the Scripps Research Digital Trials Center and participant in the Congresswoman Grace Napolitano’s Mental Health Consortium.

 

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Lynne Kinst

Vice-Chair

Lynne Kinst was the Executive Director of Central California Hemophilia Foundation (CCHF) from July 2017 until December 2019. As Executive Director of CCHF she implemented many new programs and increased revenue by 100%. Previously she worked for California State Board of Equalization Board Members George Runner and Diane Harkey, and the Taxpayer’s Rights Advocate. As a tax services specialist Lynne worked on improving the taxpayer experience, assisted taxpayers with their concerns, coordinated educational events and worked on legislative and tax policy.

In addition, Lynne spent eight years as director of administration with a non-profit organization now known as Capitol Commission, where she supported ministry leadership in establishing ministries, partner development, fundraising, event coordination and human resources. Prior to working at the non-profit she had four years of political experience working for state elected officials in a variety of capacities.

Born and raised in Sacramento, Lynne attended the University of California, Davis earning a bachelor’s degree in political science, with minors in human development and religious studies. Lynne also has a master of arts in biblical counseling from The Master’s University.

Her father, Jim Carey, was an active member of the CCHF Board, serving as treasurer since the chapter’s founding until his death in 1994. CCHF’s Jim Carey Scholarship is named in his honor. Previously, Lynne served on both the CCHF and Hemophilia Council of California Boards of Directors. Lynne is herself a carrier of Hemophilia. She and her husband David live in Rocklin, CA with their son Zach, and daughter Ashley.

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Michelle Rivas

Secretary

Michelle Rivas has built an extensive career in legislative affairs and public policy, with a focus on advocacy, external relations, and strategic leadership across multiple sectors.

Rivas spent 11 years with the California Dental Association (CDA), serving as both Manager of External Affairs and Legislative Advocate. In these roles, she successfully advanced the association’s legislative priorities and helped elect two dentists to the state Legislature.

Subsequently, Rivas held prominent leadership positions, including Executive Director of the California Hospital Association’s Political Action Committee. She also served as the Director of Development and Fundraising for the CDA Foundation, where she led efforts to secure resources and expand the organization’s impact on oral health for the underserved.

Currently, Rivas is the Executive Vice President of Government Relations & Corporate Affairs at the California Pharmacists Association, where she oversees the organization’s legislative strategy, public policy initiatives, and corporate communications.

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Tim Madden

Tresurer

Tim Madden is a principal with Madden Quiñonez Advocacy which is a government relations and consulting firm that evolved from Randlett Nelson Madden, established in 1976. Tim has been with the firm since February 2004. His focus has been on the firm’s healthcare clients, including drafting legislation, testifying on bills and regulations, lobbying Members of the Legislature and agency officials, and organizing and implementing key contact and PAC contribution programs.

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Adrienne Shapiro

Director

Adrienne is a Sickle Cell Disease and stem cell patient advocate, the founder and Science Administrator of the Axis Advocacy Foundation, and a fifth-generation mother of a child with Sickle Cell Disease. She is a recipient of the highest honor in the regenerative medicine community, the 2018 Stem Cell and Regenerative Medicine Action Inspiration Award. She was one of the first supporters of the work done by UCLA’s Dr. Don Kohn in bone marrow and later stem cell transplants. She is a firm believer that stem cell science will cure Sickle Cell Disease and has dedicated a large portion of her life to improving the lives and overall healthcare of those living with the disease. Adrienne participates in educational conferences and seminars, meets with lawmakers to advocate for the Sickle Cell affected population, and supports funding for clinical trials. Adrienne also serves as an ambassador for the Americans for Cures Foundation.

 

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Conor Sweeney

Director

Conor Sweeney leads state policy and legislative advocacy for Susan G. Komen across the Western United States. He champions healthcare policies that primarily support breast cancer patients and frequently engages on broader issues affecting the chronic disease community. Previously, Conor was a Government Affairs Specialist with the California Association of Health Facilities (CAHF), a major trade association for long-term care facilities, where he shaped lobbying strategies, managed the political action committee, and led grassroots advocacy. He also brings legislative experience from his time with California Assemblymember Tim Grayson. Outside of work, Conor enjoys golfing near his Curtis Park home and cheering on the Sacramento Kings at Golden 1 Center.

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Joan Werblun, RN (ret)

Ex-officio

Joan Werblun is Vice Chair of the Board of Directors of the California Health Collaborative, a nonprofit organization administering programs throughout California to promote quality life and health care in the underserved populations.

She has spent over thirty years as the Diabetes Nurse Expert for the UC Davis Hospital and Medical School. She was recruited by the State of California Health Department to head a project to develop a statewide program for standards of care and management of Diabetes and she chaired this project for two years. She was the Chair of the program which became the Diabetes Coalition of California and was given a proclamation, by then-Governor Pete Wilson, for her work in Diabetes. She served on local, state and national boards and committees of the American Diabetes Association for 27 years. She was awarded a grant from the American Pharmacists Association Foundation and spent a year with migrant farm laborers in the Lost Hills, California area as part of the Project Impact, a national study of patient empowerment and care in the field of Diabetes. She has spent time in Nigeria and Ghana working in villages and hospitals teaching diabetes management to hospital staff and patients. She served as the founding chair of Citizens for the Right to Know, a nonprofit patient activist organization and worked with legislation to create the Department of Managed Care. She is retired from UC Davis but continues her work in Diabetes throughout the state.

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Senior Policy Counsel

Alex Khan

Communications Chair

Chuck Dorcich, Advisor, Cutting Edge Productions

Emeritus Board Members

Liz Helms

Joan Stevie

Bill Remak, CA Hepatitis C Task Force

California Chronic Care Coalition Members. Visit their websites to learn more about the organizations and the people they assist and represent.

Corporate Members