Patients Rising Podcast Patients Rising

Power to patients! A new price transparency rule from the U.S. Department of Health and Human Services will allow you to see exactly what you’re paying for. Terry and Dr. Bob discuss the rule that will require private insurers to publish their negotiated rates. Cynthia Fisher shares how the rule will give patients greater control over their healthcare decisions. 
Guest:
Cynthia Fisher
Founder and Chairman, Patients Rights Advocate
Cynthia A. Fisher is a life sciences entrepreneur, independent investor, and corporate board director. She founded WaterRev, LLC to invest in novel technologies that enable sustainable practices in water use. 
Cynthia is best known for her pioneering work as Founder and CEO of ViaCord, Inc., a leading umbilical cord blood stem cell banking service which she started in 1993. In 2000, she co-founded and was President of the cellular medicines company, ViaCell, Inc. (VIAC). Prior to founding ViaCord, Cynthia ran the Blood Bank Division of Haemonetics Corporation, a medical equipment manufacturer. She began her career in sales at IBM focusing on healthcare IT, insurance, and defense industries. 
Cynthia holds an MBA from Harvard Business School, as well as an Honorary Doctorate of Science and BS in Biophysics from Ursinus College.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
Links:
Cynthia Fisher
Patient Rights Advocate
HHS Finalizes Rule on Insurer Price Transparency
Patients Rising Concierge 
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.

As a heated election season wraps up, Terry and Dr. Bob examine the latest results and what they mean for patients and federal healthcare policy. Dr. Madelaine Feldman discusses tactics used by pharmacy benefit managers (PBMs) to profit at the expense of patients. Also, Kate speaks with TikTok sensation Marc Winski about his stutter and the ways he’s embraced it on social media to educate others about the condition.
Guest:
Madelaine Feldman, MD, FACR
President, Coalition of State Rheumatology Organizations
Dr. Madelaine Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans, LA. She is President of the Coalition of State Rheumatology Organizations, Chair of the Alliance for Safe Biologic Medicines, and past member of the American College of Rheumatology Insurance Subcommittee.
Dr. Feldman is a Clinical Assistant Professor of Medicine at the Tulane University School of Medicine, and lectures extensively to patients, physicians, regulators, and legislators, both locally and nationally, speaking before the House Energy and Commerce Committee Health Subcommittee in 2019.   She has spoken and written on the drug supply chain, particularly the effect that formulary construction and utilization management tools have on pricing and access to drugs, related to availability and affordability.
Dr. Feldman received her medical degree from the Tulane University School of Medicine.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
Links:
Dr. Madelaine Feldman
Marc Winski
Insurers Must Stop the Tricks, New Rule Says, Offering Consumers a Treat
Patients Rising Concierge 
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
 

Gene therapies can be lifesaving for many patients. But accessing them can be a challenge of its own. Terry and Dr. Bob discuss the private sector’s work to improve accessibility with Biotech executive John Crowley, who shares his views on the moral obligations companies have to patients. Also, Ciji Green shares her battle with her insurance company to access spinal muscular atrophy gene therapy for her daughter.
Guest:
John Crowley
Chairman of the Board, Chief Executive Officer, Amicus Therapeutics
John’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe disease—a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he left his position at Bristol-Myers Squibb and became an entrepreneur as the Co-founder, President, and CEO of Novazyme Pharmaceuticals, a biotech start-up conducting research on a new experimental treatment for Pompe disease (which he credits as ultimately saving his children’s lives). In 2001, Novazyme was acquired by Genzyme Corporation where John continued to play a lead role in the development of a drug for Pompe disease as Senior Vice President, Genzyme Therapeutics.
John and his family have been profiled on the front page of The Wall Street Journal and are the subjects of a book by Pulitzer prize-winning journalist Geeta Anand, “The Cure: How a Father Raised $100 Million - And Bucked the Medical Establishment - In a Quest to Save His Children.” The major motion picture, Extraordinary Measures, starring Brendan Fraser and Harrison Ford, is inspired by the Crowley family journey. John also is the author of a personal memoir: Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy.
John is a commissioned officer in the U.S. Navy Reserve, assigned to the United States Special Operations Command, and is a veteran of the global war on terrorism, with service in Afghanistan. He graduated with a B.S. in Foreign Service from Georgetown University, and earned a J.D. from the University of Notre Dame Law School, and an M.B.A. from Harvard. 
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
Links:
John Crowley
Amicus Therapeutics
‘Maisie’s Army’: How a grassroots group is mobilizing to help toddlers access a lifesaving drug
Patients Rising Concierge 
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
 

States have begun to release their vaccine distribution plans, and President Trump and Biden spent the final debate sparring over the vaccine delivery timeline. The media says conflicting things. What should you believe, and how do you sift through all of these competing ideas? Terry and Dr. Bob discuss the latest on the vaccine front, and in true Patients Rising fashion, offer straight talk on interpreting the messages. Plus, Dr. Hugh Rosen breaks down COVID-19 testing, emerging vaccines and therapeutics. 
 
Guest:
 
Hugh Rosen, M.D., Ph.D.
Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.
 
Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions. 
 
Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals. 
 
Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmaceutical company focused on the research and development of molecular drugs. 
 
Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford. 
 
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
 
Links:
 
Dr. Hugh Rosen
 
Voices from the Pandemic: Ian Haydon
 
Patients Rising Concierge 
 
 
Need help?
 
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
 
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
 
Drop us a line: podcast@patientsrising.org
 
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
 

Drug pricing continues to make the news, so we’re revisiting our conversation with Dr. Janet Woodcock of the FDA about bringing drug manufacturing back to the U.S. Hear how American-made drugs might lower costs and improve overall safety. Plus, get caught up on this week’s healthcare news headlines in our weekly news roundup.
Guest
Janet Woodcock, M.D. 
Director, Center for Drug Evaluation and Research (CDER) at the Food and Drug Administration (FDA)
Since Dr. Janet Woodcock joined the FDA in 1986, she has led numerous FDA drug initiatives while maintaining the reliability of the FDA’s regulatory process. She worked to incorporate risk management practices into evaluating drug safety and has taken the lead on efforts to update drug manufacturing procedures and regulations, known as the “Pharmaceutical Quality for the 21st Initiative.”
Dr. Woodcock also recently launched two new drug safety initiatives to improve safety management and regulation both within and outside the FDA. 
Currently, Dr. Woodcock is the Director of the Center for Drug Evaluation and Research (CDER) which ensures the effectiveness of drugs, provides data and instructions to health care providers and patients, and monitors clinical trials of new drugs. 
Dr. Woodcock received her bachelor’s degree in chemistry from Bucknell University in Lewisburg, Pennsylvania, and her doctor of medicine degree from the Feinberg School of Medicine at Northwestern University Medical School in Chicago, Illinois. 
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
Links:
Patients Rising Concierge 
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.

President Trump’s apparent quick and successful battle with the COVID-19 virus should set the standard for care that all Americans should receive. 
Terry and Dr. Bob look at how the White House is grappling with spreading infections, and Dr. Mark Fendrick shares the impact of value-based insurance design on lowering patient costs and improving outcomes. Plus, Kate is joined by Carly Flumer, a patient living with a rare cancer. She tells the story of her journey and how it led her to patient advocacy. 
Guest:
A. Mark Fendrick, M.D.
University of Michigan’s Value-Based Insurance Design, Director
Dr. Fendrick conceptualized and coined the term Value-Based Insurance Design (V-BID) and currently directs the V-BID Center at the University of Michigan, the leading advocate for development, implementation, and evaluation of innovative health benefit plans. His research focuses on how clinician payment and consumer engagement initiatives impact access to care, quality of care, and health care costs. 
He has authored over 250 articles and book chapters and has received numerous awards for the creation and implementation of value-based insurance design. His perspective and understanding of clinical and economic issues have fostered collaborations with numerous government agencies, health plans, professional societies, and health care companies.
Dr. Fendrick is an elected member of the National Academy of Medicine (formerly IOM), serves on the Medicare Coverage Advisory Committee, and has been invited to present testimony before the U.S. Senate Committee on Health, Education, Labor and Pensions, the U.S. House of Representatives Ways and Means Subcommittee on Health, and the U.S. Senate Committee on Armed Services Subcommittee on Personnel.
He is the co-editor in chief of the American Journal of Managed Care and is an editorial board member for 3 additional peer-reviewed publications.  He is also a member of the Institute for Healthcare Policy and Innovation at the University of Michigan, where he remains clinically active in the practice of general internal medicine.
Dr. Fendrick received a bachelor’s degree in economics and chemistry from the University of Pennsylvania and his medical degree from Harvard Medical School.  He completed his residency in internal medicine at the University of Pennsylvania where he was a fellow in the Robert Wood Johnson Foundation Clinical Scholars Program.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent 
Links:
Dr. A. Mark Fendrick
Applying Value-Based Insurance Design to Low-Value Health Services
Putting the Human Back in Healthcare
Diagnosed, Not Defeated
Patients Rising Concierge 
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.