Health Affairs https://www.healthaffairs.org May issue devoted to Precision Medicine discusses policy issues, engaging patients, and how pharmaceutical innovations relate to precision medicine.
At the event held May 8, 2018 at the National Press Club to discuss the May issue, Alan Weil, Editor-in-Chief, for Health Affairs said, “There are tremendous opportunities in precision medicine to drive medicine forward in this century but unfortunately policies have not kept up with precision medicine.”
He added, “There needs to be coverage not only for testing but also for linking tests to treatments, addressing payment considerations, determining the patient’s role in dealing with data, and examining issues related to drug development.”
A panel discussion was held with Geoffrey Ginsburg M.D, PhD, Director, Center for Applied Genomics & Precision Medicine, at Duke University and co-author of the study “Precision Medicine: From Science to Value” along with Kathryn A. Phillips M.D, Professor at the University of California’s San Francisco Center for Translational and Policy Research.
Dr Ginsburg explained, “An action plan is needed to enable patients to participate in important decisions related to their health. Strategies need to be discussed on how to develop an effective workforce to meet the needs required in precision medicine plus we need to further develop skills to enhance international collaboration and the sharing of data.”
Dr. Kathryn Phillips continued the conversation by saying, “A study at UCSF addressed the important issue of genetic testing and spending in terms of now and in the future. The results from the study show that as of August 2017, there were approximately 75,000 genetic tests on the market plus the fact that the market for genetic tests is still rapidly growing.
According to Dr. Phillips, “The large amount of genetic tests required brings challenges for clinicians and payers. Clinicians have to determine what tests are needed and then decide if the tests will provide enough value in caring for the patient.”
As she explained, “The largest number of genetic tests are done in pediatrics, rare diseases, neurology, and increasingly to address cancer risks for prenatal hereditary concerns.”
Given the rapid increase in genetic tests, the study points out how patients may begin to face high out-of-pocket spending for many genetic tests. Dr. Phillips hopes this study will help inform the policy community about regulatory decisions that need to be made related to the expansion of genetic testing.
Alessandro Blasimme PhD, Senior Researcher in the Health Ethics & Policy Lab at the Department of Health Sciences and Technology ETH Zurich, Switzerland, and co-author of the article “Data Sharing for Precision Medicine: Policy Lessons and Future Directions”, said, “Even though numerous organizations are providing guidance on data sharing, the data is still not being shared enough to enable a data driven revolution to take place in precision medicine.”
He recommends developing innovative policy tools while still providing for privacy. Also, he wants to see improvements in data quality, make certain grantee data available, and policy makers need to provide guidance on how to effectively share data.
A second panel on “Precision Medicine in the Real World” included Daryl Pritchard, Senior Vice President of Science Policy, Personalized Medicine Coalition, Marc S. Williams, Director, Genomic Medicine Institute at Geisinger, and Carol Horowitz, MD, Professor of Population Health Science and Policy and Professor of Medicine at Icahn School of Medicine at Mount Sinai.
Panelists in the third panel “Engaging Patients in Precision Medicine” included Latrice Landry Fellow, Partner’s Personalized Medicine, Cinnamon Bloss, Associate Professor Department of Psychiatry, Megan Roberts, Cancer Prevention Fellow, Division of Cancer Control and Population Sciences at NCI, and Benjamin Wilfond, Director Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital
The concluding panel “Pharmaceutical Innovation in Precision Medicine” included Sean Khozin, Associate Director (Acting) FDA Oncology Center of Excellence, Jonathan J. Darrow, Faculty, Researcher, Division of Pharmacoepidemiology and Pharmacoeonomics, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, Stacie Dusetzina Associate Professor of Health Policy and Ingram Associate Professor of Cancer Research at Vanderbilt University School of Medicine
Support for the May Health Affairs issue was provided by RWJF, Illumina, PhRMA, PCORI, AMA, Leonard D. Schaeffer Center for Health Policy and Economics at the University of Southern California, and the Personalized Medicine Coalition.