Gene therapies and other novel treatments are being developed for an increasing number of conditions. Hemophilia is at the forefront of this wave of new therapies and will be a proving ground for new policies and models. These therapies have the potential to transform hemophilia care, but they may also transform California’s system of care.
In order to bring key stakeholders together for a discourse on the politics, policy, and political economy of novel therapies and access to care in California, the Hemophilia Council of California (HCC) is launching Hemophilia CANEXTions. This brand new event, which will be held on November 5th, 2019 in Sacramento, will educate California policy makers and payers on novel therapies in development, how they may affect health care systems within the state, and key considerations for patient access to care.
What: Interactive Novel Therapies conference for hemophilia stakeholders & payers focused on access to care and possible impact on California’s health care systems.
When: November 5th, 2019 (Sacramento, CA)
Who: Health payers (public and private), specialty care centers, patient advocates, and novel therapy manufacturers.
We’re excited to have experts in access to care drawn from across the United States and right here in California present at Hemophilia CANEXTions. Meet our session speakers:
Jane F. Barlow, MD, MBA, MPH
Senior Advisor to the MIT Center for Biomedical Innovation NEWDIGS Project
Dr. Jane Barlow is a clinical and strategic executive consultant with over 25 years of healthcare leadership experience. She is Chief Clinical Officer of Real Endpoints, a market access company, serves as Senior Advisor to the MIT Center for Biomedical Innovation NEWDIGS project on Financing of Curative Therapies and is a board director of TherapeuticsMD. Dr. Barlow focuses on evaluating the economic impact and value of pharmaceuticals and diagnostics to aid in defining access and coverage strategies with a focus on outcomes and innovative contracting. Dr. Barlow attended medical school at Creighton University and completed her residency training in occupational medicine at Johns Hopkins University. She holds masters’ degrees in business administration and public health and is a Certified Physician Executive with a certificate in Health Information Technology from the American College of Physician Executives.
Director of External Affairs, National Hemophilia Foundation
Brendan Hayes is the Director of External Affairs at the National Hemophilia Foundation (NHF) and leads NHF’s Gene Therapy Initiative, which includes developing accurate, non-biased educational content on gene therapy, working with payers and policymakers to ensure patients have access to these groundbreaking therapies, and strengthening collaborations with national rare disease and patient advocacy organizations. In addition, she provides policy and advocacy expertise to NHF Chapters at the state and federal level. Brendan serves on national committees, task forces and working groups focused on gene therapy for rare disorders. She is both a speaker and moderator at national conferences and weaves in the importance of engaging patients in drug and novel technologies development. She graduated from the University of Texas at Austin with a business degree in Finance and Risk Management and Insurance.
Steven Pipe, MD
Professor, University of Michigan, Ann Arbor
Dr. Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan, Ann Arbor. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr. Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has served on the board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and currently as Chair of the Medical and Scientific Advisory Committee to the National Hemophilia Foundation Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr. Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation.
Jonathan Ducore, MD, MPH
Hematology/Oncology Director, UC Davis Hemostasis and Thrombosis Center and Professor Emeritus, UC Davis Department of Pediatrics
Dr. Jonathan Ducore has over 40 years of experience in Pediatric Hematology/Oncology. He has been the Co-Director and Director of the Hemophilia Treatment Center (now Hemostasis and Thrombosis Center) at UC Davis for 25 years. Dr. Ducore has spent ever-increasing time in the field of non-malignant hematology and is heavily invested in clinical research. His primary research interests are in gene therapy for hemophilia and the development of new agents for the treatment of bleeding and thrombotic disorders. While the care of children with bleeding disorders is well-organized, the Hemostasis and Thrombosis Center is actively working to coordinate the care of children with thrombotic problems as well as by investigating anti-thrombotic therapies in children. Dr. Ducore has also been working in the area of the impact of new therapies on the use and cost of hemophilia products and care.