About the 50-State Network

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Vision:

Our vision is to ensure that people living with any diagnosed, chronic illness maintain and grow their voices – lending personal perspective to Washington, DC or throughout the 50 State Capitols, hearing rooms, regulatory meetings and other public forums around the country. Healthcare conversations that impact our access to care must include the voices most impacted: patients and our families.

Mission:

Seth’s 50-State Network is dedicated to the safety, healing and self-determination of people living with chronic illness. Through outreach, education, and advocacy, we strive to create a world in which patients know that they are not alone and that their unique perspective is informing policymakers in the creation of health policy.

We take action through advocacy, education, and outreach. Seth’s 50-State Network engages with its members daily, coordinates weekly, and educates monthly, ensuring that state and federal governments serve their citizens responsibly

Background:

Informed by our work with our patient population CreakyJoints and our parent organization Global Healthy Living Foundation, the 50-State Network is a community of advocates dedicated to ensuring that legislation and public policies promote better access to healthcare.

For example, patients who need non-preferred or specialty tierdrugs often go into medical debt and bankruptcy in efforts to continue their life-saving treatment. Seth’s 50-State Network understand this and fights to contain costs, to help the patient avoid medical debt and to continue monthly treatment. Through advocacy efforts, patients help patients stay on their treatments, and potentially save from loss of productivity. The community also saves the nation billions of dollars in direct costs to the health care system.

 

Team:

Seth Ginsberg

Seth Ginsberg was diagnosed at 13 with a form of arthritis called Spondylarthritis, and, at 18, he helped pioneer the world’s first Online Patient Community for the millions of people worldwide suffering from arthritis, called CreakyJoints (www.CreakyJoints.org). Today, CreakyJoints is part of the non-profit Global Healthy Living Foundation(www.GHLF.org) (also co-founded by Ginsberg), which has the mission to improve access to care for people living with all forms of chronic illness. Ginsberg served as the patient representative and advocate on the 2014-2015 American College of Rheumatology (ACR) Rheumatoid Arthritis Treatment Guidelines Committee, which is the body that sets guidelines for the care and management of Rheumatoid Arthritis.

Ginsberg works closely with Congress and health-related Congressional Committees, the U.S. Department of Health and Human Services (HHS) and its regulatory agency the Food and Drug Administration (FDA), as well as state governors and legislature leadership on behalf of others living with chronic illness.

 

Stephen Marmaras

StephenMarmarasStephen M. Marmaras serves as Manager, State and National Advocacy at Global Healthy Living Foundation (GHLF). At GHLF, Stephen advocates for improved access to care by educating the community about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement and therapeutic compliance. Stephen’s passion is toward innovative communication with patients, caregivers, healthcare providers and other stakeholders. This includes social media and mobile media—leveraging new technology to address old paradigm healthcare problems. Prior to joining GHLF, Stephen worked at the Biotechnology Industry Organization (BIO) where he was coordinator, Health Policy –Vaccines, Immunotherapeutics and Diagnostics. Previously at BIO he was in State Government Relations –Alliance Development. Stephen graduated with a Bachelor of Arts in Communications from Purdue University.

 

Sarah Aoanan

SarahAoananSarah Mendoza Aoanan is a Health Advocacy Fellow at GHLF. She facilitates membership for Seth’s 50-State Network, encouraging patients on a daily basis to share their stories and be heard. To better care for and understand her best friend’s journey with chronic illness, Sarah received her Masters in Health Advocacy from Sarah Lawrence College.  While in school, she advocated for women’s health, navigating healthcare systems for patients with breast cancer and survivors of sexual violence. Sarah joins us from Cinemoi North America, a television network that she helped launch and curate.

 

Joseph Coe

JosephCoeJoseph is the patient advocate at the Global Healthy Living Foundation where he works on behalf of patients. He was drawn to this work from his deep thirst for justice and fair treatment for all. Joe works with all segments of the organization to ensure that the patient’s voice remains central. He holds a BA (cum laude/ English Honors Distinction) from SUNY Albany and he attended Marist College in Poughkeepsie NY, were he earned a Master’s in Public Administration and was inducted as a member of Phi Alpha Alpha the National Honor Society for Public Affairs & Public Administration.