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The Patients Rising Podcast

Now we are bringing the news to you in a format that’s easy to take with you wherever you go. Every week, Patients Rising Podcast will dig deep into the week’s healthcare policy issues that impact you.

For years, Patients Rising has given patients the information they need about health policy developments from Washington, all while giving them a voice in the nation’s capital.

Now we are bringing the news to you in a format that’s easy to take with you wherever you go. Every week, Patients Rising Podcast will dig deep into the week’s healthcare policy issues that impact you. 

Each episode features the latest news, in-depth discussions with policymakers and patient advocates, and updates from patient correspondents around the country.

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Episode 18: Inequality in healthcare

Patients Rising Podcast

Ep 18: Inequality in Healthcare

Show Notes

COVID-19 has hit minority populations particularly hard, delivering a wake-up call to healthcare policymakers. How can we change the system to help marginalized communities get access to the care they need? Dr. Bob speaks with Dr. Frank L. Douglas, who describes his experiences fighting racism within the healthcare industry. And we hear from a member of the LGBTQ+ community battling the stigma of HIV. 

Guest:

Frank L. Douglas, M.D., Ph.D.

Dr. Frank L. Douglas has over thirty years of experience in the healthcare and pharmaceutical industry. Most recently, Dr. Douglas served as CEO of TheVax Genetics USA Inc. and Member of the Board of TheVax Genetics Vaccine Co.

Born in Guyana in 1943, Dr. Douglas traveled to America on a Fulbright scholarship to attend college. After completing his studies and receiving his medical degree, he went on to teach clinical pharmacology at the University of Chicago’s Pritzker School of Medicine. He’s also held positions as Chief Scientific Advisor of Bayer Healthcare, First Executive Director of the MIT Center for Biomedical Innovation, and co-founder of Douglas Ahmed Consulting.

In 2019, Dr. Douglas published his memoir Defining Moments of a Free Man from a Black Stream. It describes his experiences navigating racism within both university and professional settings in America.

Dr. Douglas earned his doctorate in physical chemistry and his medical degree from Cornell University in Ithaca, New York. 

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:

Frank L. Douglas, M.D., Ph.D.

 Defining Moments of a Free Man from a Black Stream

 COVID-19 Will Help Us Overhaul Clinical Trials

 

Patients Rising Concierge

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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.

 

Episode 17: Accessible Rare Disease Treatments

Patients Rising Podcast

Ep 17: Accessible Rare Disease Treatments

Show Notes

Patients with rare diseases may soon have better access to treatments. A second installment to the 21st Century Cures Act is in the works that would make improvements to telemedicine and digital health regulations. Find out what this means for the rare disease community in this interview with Diane Berry, Ph.D. And hear Kate’s interview with Lan Sena, a healthcare advocate who has been battling Hodgkin’s lymphoma for the past ten years.

Guest:

Diane Berry, Ph.D.

Senior VP, Global Health Policy, Government and Patient Affairs, Sarepta Therapeutics

Diane joined Sarepta Therapeutics in December of 2011 and serves as Vice President, Global Policy, Government & Patient Affairs. She engages policymakers at the federal, state, and local levels, as well as patient advocacy organizations. She works to advance critical policies related to newborn screening, regulatory policy, and reimbursement and access, with the goal of expediting development and patient access to genetic-based therapies for rare diseases.

Previously, Dr. Berry served in leadership roles for the federal government in both the legislative and executive branches, overseeing and implementing science, technology and public health activities. She served as a Subcommittee Staff Director and Senior Professional Staff Member for the U.S. House of Representatives Committee on Homeland Security and as Chief Scientist and Senior Biodefense Advisor at the Department of Homeland Security inside its Office of Health Affairs.

Dr. Berry was also a Senior Science Advisor at McKenna, Long, and Aldridge, and a Science and Technology Policy Advisor and Fellow within the Department of Defense through the American Association for the Advancement of Science.

Dr. Berry earned her Ph.D. in chemical engineering from Northwestern University and her B.S. and M.S. in chemical/biochemical engineering from Tufts University.

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:

Diane Berry, Ph.D 

Be The Match 

Doctors can still prescribe HCQ to patients, says U.S. Health Secretary

Patients Rising Concierge

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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.

 

Episode 16: Save + Cheaper Drugs

Patients Rising Podcast

Ep 16: Safe + Cheaper Drugs

Show Notes

Made in the USA: The return of drug manufacturing to the U.S. could help improve drug safety, cost, and accessibility for patients with chronic disease. Dr. Janet Woodcock is director of the FDA’s Center for Drug Evaluation and Research. She tells us about new technologies and processes to make this possible. Also, Dr. Bob celebrates his birthday by looking into Medicare options. Field correspondent Kate Pecora speaks with Mark Olsen, who describes the challenges of securing adequate healthcare and education for his son who lives with a rare disease.

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 has worked to incorporate risk management practices into evaluating drug safety and has taken the lead on efforts to update drug manufacturing procedures and regulations, an effort 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.

In her current position, Dr. Woodcock’s organization works to ensure 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.

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:

Asymptomatic spread of Coronavirus is ‘very rare,’ WHO says 

Manufacturing API, Drugs and Excipients (MADE) in America Act

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.

Episode 15: Denied access to treatment

Patients Rising Podcast

Ep 15: Denied Access to Treatment

Show Notes

A victory for patients in Oklahoma as the state bans a discriminatory healthcare metric. Quality-adjusted-life-years (QALYs) are used by numerous insurance companies to block coverage based on disability or age. Two mothers of children with spinal muscular atrophy (SMA) explain how QALYs impact their children’s access to affordable healthcare. 

Guest: 

Amanda Chaffin

Amanda Chaffin is the mother of Kayden, a seven-year-old who has spinal muscular atrophy (SMA). Amanda and her family reside in Norman, Oklahoma, where a ban on quality-adjusted-life-years was recently enacted. 

Following Kayden’s diagnosis, Amanda faced immense challenges in securing the medical equipment he needed, which propelled her into the patient advocacy space. She works with Cure SMA, an organization that drives funding for SMA research and provides support for families affected by the genetic disease. 

Kayden Chaffin made news headlines over the thousands of Christmas cards that strangers sent to him over the holidays. 

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:

Oklahoma QALY Ban

Patients Anticipate Future Access to Care Troubles from COVID-19

Kayden’s Christmas Cards

Cure SMA

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.

Episode 14: Your Patient data

Patients Rising Podcast

Ep 14: Your Patient Data

Show Notes

Higher quality care at lower prices might be possible. Some companies are harnessing the power of anonymous, patient data to improve patient protocols and replace pharmacy benefit managers. Dr. Bob sits down with two leaders in the health care data industry that are doing just that. And with Memorial Day weekend still fresh on our minds, Kate speaks with a veteran who makes a plea for protecting veteran care under the Veterans Administration. 

Guests: 

Travis Leonardi

Chief Executive Officer at Agilum Healthcare Intelligence

Travis Leonardi has been involved in the healthcare space for over 30 years. Mr. Leonardi is a pharmacist and entrepreneur who has combined his medical and business experiences to create several health care-focused companies. 

In 2004, Mr. Leonardi founded Sentry Data Systems, where he currently serves as President and CEO. The Florida-based company provides pharmacy procurement and utilization services and focuses on analyzing real-time data to improve the quality of care at lower costs. 

Currently, Mr. Leonardi also serves as the CEO at Agilum, a leading provider of Comparative Rapid Cycle Analytics for hospitals, life sciences companies, and payers. 

Travis Leonardi is a registered pharmacist and graduate of St. John’s Pharmacy School in New York City.

William Kirsh, D.O., M.P.H.

Chief Medical Information Officer at Agilum Healthcare Intelligence

Dr. William Kirsh has over 30 years of experience in the public health field, including clinical practice, healthcare insurance, and software development. Dr. Kirsh is certified to practice geriatric medicine, hospice and palliative medicine, and family medicine. Combined with a background in IT innovation, Dr. Kirsh brings a unique perspective to his current role as Chief Medical Information Officer at Agilum. 

Dr. Kirsh’s work is focused on applying data to solve population-based health problems in order to improve treatment practices and patient outcomes. His interests lie in public health and epidemiology. 

Previously, Dr. Kirsh served as the CEO and Chief Medical Officer at Foundation Health Plan of Florida and was the Vice President of Medical Affairs and Quality Assurance at the Physicians Corporation of America Inc. 

Currently, Dr. Kirsh continues to practice acute care medicine at several local hospitals and serves as a volunteer physician in the United States Coast Guard Auxiliary. 

Dr. Kirsh received his D.O. from Nova Southeastern University in Fort Lauderdale, Florida, and his M.P.H. from Johns Hopkins University in Baltimore, Maryland. 

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:

Agilum

Ted Corcoran

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.

 

Episode 13: exposing hidden health costs

Patients Rising Podcast

Ep 13: Exposing Hidden Health Costs

Show Notes

What will this cost? It’s the big question when it comes to healthcare, and it’s often impossible to answer. Healthcare policy expert David Balat explains how transparent pricing models put patients in control of their healthcare finances, and Kate speaks with Siobhan Benham, a nurse practitioner who explains the patient benefits of Direct Primary Care. 

Guest: 

David Balat 
Healthcare Policy Director for the Texas Public Policy Foundation

David Balat is a healthcare finance expert with over twenty years of experience and leadership in the healthcare industry. With his wealth of industry experience, he has served as the healthcare advisor for the Texas House of Representatives and has counseled numerous members of the U.S. Congress on healthcare policy. 

Currently, Mr. Balat serves as the Healthcare Policy Director for the Texas Public Policy Foundation, where he leads the Right on Healthcare Initiative, which aims to put patients in control of healthcare decisions through price transparency and expanded healthcare options. 

Mr. Balat has worked extensively within executive management positions in the healthcare field. Starting in 2013, Mr. Balat served as the Executive Director of Olive Branch Management Services, where he worked extensively within the healthcare field to improve patient access and processes while decreasing costs. Past experiences also including serving as the President of Torch Recovery Services, Interim CEO of Humble Surgical Hospital, LLC, and CFO of Mobile Diagnostics. 

Mr. Balat received a B.S. in biology from the University of Houston, and a joint M.B.A./M.H.A. from the University of Houston Clear Lake. 

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:

Colorado Changes How Coronavirus Deaths are Counted

Right on Healthcare Initiative 

Free to Care

Hearthside Family Health

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.

Episode 12: The Race for a covid-19 vaccine

Patients Rising Podcast

Ep 12: The Race for a COVID-19 Vaccine

Show Notes

The nation is focused on development of a COVID-19 vaccine. And there’s conflicting information from all sides. For those with chronic illnesses, a vaccine will be even more critical  if they hope to return to routine to offices and clinics for treatments and doctor visits. 

But what dangers lie in a vaccine being developed too quickly? 

On this episode, Dr. Paul Offit explores the current state of the COVID-19 vaccine. And recent college graduate Kate Pecora speaks with a patient whose health relies on the vaccination of others. 

Paul Offit, M.D.

Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia. 

Dr. Paul Offit has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. His expertise and research focus is on vaccines, immunology, and virology. 

Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.

Dr. Offit has published over 160 papers in medical journals dealing with his work on the rotavirus vaccine and overall vaccine safety practices. He has also authored eight books on vaccines and how they are communicated about with the general public. 

Previously, Dr. Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two. 

Dr. Offit earned a B.S. from Tufts University in Boston, and earned his M.D. from the University of Maryland, Baltimore. 

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. Paul Offit

Overkill: When Modern Medicine Goes Too Far

Rare Candace

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.

 

Episode 11: pricing patient lives

Patients Rising Podcast

Ep 11: Pricing Patient Lives

Show Notes

Health economist Dr. Paul C. Langley explains the faults in ICER’s price calculations. Dr. Bob discusses his antibody test for COVID-19, and Kate speaks with a mother whose late son passed away due to insulin rationing. 

Paul C. Langley, Ph.D. 

Health economist and adjunct professor in the College of Pharmacy, University of Minnesota 

Dr. Paul C. Langley is a health economist with an extensive background in drug evaluation for pharmacy and therapeutics companies. In the early 1990’s, Dr. Langley evaluated the economics for the introduction of new pharmaceutical products. In Australia, he worked to analyze cost-effectiveness cases brought forward by pharmaceutical companies introducing new products until 1994. 

After moving to America, Dr. Langley produced numerous research projects regarding evaluation techniques for the introduction of new pharmaceutical and therapeutic products to the United States. In 1997, he also established the Center for Pharmaceutical Economics at the University of Colorado.

From 1999 to 2005, Dr. Langley used his global experience and perspective in his role as International Manager, Health Economics at 3M Pharmaceuticals. 

Dr. Langley’s research papers largely focus on issues of population health. His recent publications have analyzed how ICER’s cost-effectiveness claims in the U.S. do not meet scientific standards. 

Currently, Dr. Langley is the director of Maimon Research LLC, an Arizona-based health economics consulting and research company. He also works as an adjunct professor at University of Minnesota’s College of Pharmacy. Dr. Langley is currently an Advisory Board Member and Research Director for the Institute of Patient Access. 

Dr. Langley earned his B.S. in economics from the University of Hull in the U.K., his M.A. from Carleton University, and his Ph.D. from Queen’s University in Canada. 

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:

Maimon Research LLC

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.

 

Episode 10: Last in Line: Chronic Illness

Patients Rising Podcast

Ep 10: Last in Line: Chronic Illness

Show Notes

Many patients with chronic illnesses have had their treatments delayed or postponed as healthcare shifts its focus to COVID-19. Lifesaving procedures for the chronically ill have been put on the backburner. How does the healthcare system prioritize who is worth immediate care, and what does that mean for the patients put at the end of the line?

On this episode, we explore these moral dilemmas in healthcare with the help of Dr. Camosy, a professor of bioethics. And Kate speaks with Jennifer McNary, a mother fighting against ICER’s pricing roadblocks in order to get her sons’ access to treatment for Duchenne Muscular Atrophy. 

Charles C. Camosy, Ph. D.  

Author and associate professor of theological and social ethics at Fordham University 

Dr. Charles C. Camosy is an award-winning author and avid researcher on issues related to bioethics, healthcare, moral anthropology, and more. Through his work on “intellectual solidarity,” he aims to unpack the often complex and highly emotional issues that are prevalent in societal discourse. 

Dr. Camosy has authored four books that analyze the polarization of topics including abortion, binaries in public discourse, treatment of animals, and healthcare. He has written numerous academic articles on issues of morality and bioethics. 

Currently, Dr. Camosy is an associate professor at Fordham University’s theology department. He serves on both the board of the College Theology Society and the advisory board of the New England Partnership for the Common Good. 

Dr. Camosy earned his B.A., M.A., and Ph.D. from the University of Notre Dame in Indiana. 

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. Charles C. Camosy 

The drugs and treatments that could stop COVID-19

Patients Rights Advocate

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.

Episode 9: Restoring the patient voice

Patients Rising Podcast

Ep 09: Restoring the Patient Voice

Show Notes

Restaurant menus list their prices. So why not hospitals? Unfortunately, patients usually don’t know the cost of their procedure or medication until they get the bill. Getting access to hospital pricing is also just as difficult as getting ahold of your own, digital medical records. So how can patients take back control over their healthcare decisions?

On this episode, we discuss the ins and outs of price transparency models, and how to pass legislation that will put you in control of your finances and health. 

Cynthia Fisher

Founder and CEO of ViaCord, Inc. 

Cynthia Fisher is an established science entrepreneur with over 25 years of experience in the life science industries. She is an advocate for real price transparency, having founded the non-profit Patient Rights Advocate in 2017. Under her leadership, the organization seeks to elevate the voices of patients that are burdened by healthcare costs and to raise awareness of price transparent healthcare models.  

Cynthia is best known for establishing ViaCord Inc. in 1993, a company that offers umbilical cord blood banking and genomic testing with the goal of potentially treating select cancers and genetic diseases. In 2000, Cynthia co-founded ViaCell Inc., which absorbed ViaCord Inc. as a new division. At ViaCell Inc., Cynthia served as President and sat on the Board of Directors. 

Her experience in healthcare advocacy also extends into the public sector. In 2017, Cynthia was appointed to the Health Information Technology Advisory Committee by former Speaker of the House Paul Ryan.  

Cynthia earned a B.S. in Biophysics from Ursinus College in Collegeville, Pennsylvania.  Ursinus College also awarded her an Honorary Doctorate in Science. She earned her MBA from Harvard Business School. 

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:

The APANDEMIC Initiative

Patients Rights Advocate

The Discomfort Zone

The Discomfort Zone Twitter

The Discomfort Zone Facebook

The Discomfort Zone Instagram

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.

Episode 8: How to avoid drug shortages

Patients Rising Podcast

Ep 08: How to Avoid Drug Shortages

Show Notes

COVID-19 has brought global attention to the fragility of the medical supply chain. For those with chronic illnesses, drug shortages and access to medication often are lifelong battles. As the coronavirus spread begins to slow, will the pandemic bring about increased awareness of the everyday struggles of patients with chronic diseases? And how can we bridge the gaps in the medical supply chain?

On this episode of the Patients Rising Podcast, we discuss new technologies that can quickly develop small-batch drugs in high demand among patients. We also look into how the pandemic has slowed the supply chain’s transportation of APIs (active pharmaceutical ingredients). 

Lili Valletta

Founder and CEO of CIEN+, and Marketing Executive at Bright Path Laboratories.

Lili Valletta is a marketing professional with over 20 years of experience, specifically in the medical and pharmaceutical industries. In 2010, Lili co-founded CIEN+, which is a Cultural Intelligence Engine designed to help companies bring cultural trends into their business designs and solutions. 

In conjunction with CIEN+, where Lili continues to serve as the CEO, she is a marketing executive and strategic partner at Bright Path Laboratories. Bright Path focuses on pharmaceutical manufacturing technology for API production designed to meet drug shortages in the supply chain due to its scalable design. 

For 10 years, Lili worked as the Director of Global Marketing at Johnson & Johnson, where she developed numerous diversity marketing initiatives, including the company’s first multicultural marketing strategy. PRWeek named Lili one of its Top 50 Healthcare Influencers. 

Lili earned her Masters in Business Administration from the University of Colorado in Colorado Springs. 

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:

Bright Path Laboratories 

The APANDEMIC Initiative

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 positions of Patients Rising.

 

Episode 7: COVID-19 Treatments

Patients Rising Podcast

Ep 07: New COVID-19 Treatments

Show Notes

Medical supply chains that transport medications for chronically ill patients are at risk of shutting down due to COVID-19. And for those that have contracted the disease, getting access to clinical trials is not an easy process. For at-risk patients, accessing life-saving medications is becoming increasingly more difficult. 

This week on the Patients Rising Podcast, we discuss treatment testing for coronavirus. We also discuss how the strain on the medical supply chain is impacting the routine medications relied on by thousands of chronically ill Americans. Finally, we follow up with some good patient news on Michael Goldsmith’s acceptance into a coronavirus clinical trial. 

Robert Hariri, M.D, Ph.D

Chairman, Founder, and CEO of Celularity

Dr. Robert Hariri is an experienced surgeon and biomedical scientist. His research focuses on utilizing stem cells for the treatment of numerous human diseases, particularly in the areas of immuno-oncology and cell therapy. Dr. Hariri’s major medical discoveries include his findings on human placenta-derived stem cells, which include pluripotent stem cells and novel immune cells. 

For nearly 14 years, Dr. Hariri served as the CEO of Celgene’s Cellular Therapeutics division, a global pharmaceutical company. In 2014, he co-founded Human Longevity, Inc., a genomics-based biotechnology company. 

Currently, Dr. Hariri serves as Chairman and CEO of Celularity. The biotech company focuses on cell therapy research based on Dr. Hariri’s findings on the uses of postpartum placenta cells. This research guides Celularity’s work in immuno-oncology and hematology. 

Dr. Hariri earned his B.A. in Biological Anthropology from Columbia University and his M.D. and Ph.D. from Cornell University. 

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:

Fight Like a Warrior

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

Episode 6: COVID-19 Epicenters

Patients Rising Podcast

Ep 06: COVID-19 Epicenters

Show Notes

As coronavirus continues to spread across New York City, other virus hot spots are emerging across the country, including Detroit and New Orleans. These epicenters are seeing a surge in coronavirus patients but lack the medical supplies and staff to combat this growing crisis. But how exactly do these coronavirus epicenters come to be? And what does this mean for immunodeficient patients living in these places? 

This week on the Patients Rising Podcast, we have part two of Dr. Bob’s interview with Dr. Hugh Rosen, who explains how and why these COVID-19 hotspots emerge. He also discusses experimental treatments for those who have contracted the virus. 

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 biopharmeceutical 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:

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

Episode 5: COVID-19 Treatments

Patients Rising Podcast

Ep 05: COVID-19 Treatments

Show Notes

Both the federal and state governments have begun turning to the private sector for solutions on supplying tests, masks, and other necessary materials for fighting COVID-19. The private sector may also have potential coronavirus treatments, some of which are already in use for other diseases.

On Episode 5 of the Patients Rising Podcast, we discuss the potential treatment options for COVID-19 and the other ways in which the private sector is helping to alleviate the impact of coronavirus. 

Guests:

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. 

Sara Goldberg, Clinical Social Worker

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



Episode 4: Covid-19 and Supplies

Patients Rising Podcast

Ep 04: Covid-19 and Supplies

Show Notes

Fears of shortages of critical health supplies like hospital gowns, masks and drugs are a big topic on every media channel. Public health leaders are concerned about reports healthcare professionals are running short of the personal protective equipment they need. Government officials are working to address the supply chain in time, and this week President Trump invoked the Defense Production Act of 1950 to address predicted supply shortfalls. 

On Episode 4 of the Patients Rising Podcast, we discuss how the current pandemic is putting the medical supply chain to the test and how this affects patients with chronic disease. 

Guest:

Marion Mass, M.D., a Philadelphia-area pediatrician 

Dr. Marion Mass has worked as a Philadelphia-area pediatrician for over 20 years. She also currently serves as a board member of the Bucks County Health Initiative and as a delegate to the Pennsylvania Medical Society. Dr. Mass has previously been on the board of Physicians Working Together, a grassroots advocacy group focused on educating patients on healthcare issues and empowering doctors to join the healthcare reform movement.

Alongside her extensive medical career, Dr. Mass has also focused on advocating for sustainability within the American healthcare system. 

In 2017, Dr. Mass co-founded The Practicing Physicians of America, which gives physicians across America a voice in Washington, D.C., and seeks to protect the patient-physician relationship and support physician autonomy. Her focus is on drug shortages and maximizing patients’ value in the healthcare system. 

Dr. Mass earned her M.D. from Duke 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:

Alabama Rare

National Organization for Rare Disorders

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 for 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

Episode 3: Coronavirus + Chronic Disease

Patients Rising Podcast

Ep 03: Coronavirus + Chronic Disease

Show Notes

Title: Coronavirus and Chronic Disease

What does coronavirus spread across the country mean for the 10 million Americans who are immuno-deficient? While COVID-19 poses a risk for the elderly, it is also concerning for Americans suffering from underlying chronic health illnesses, such as diabetes, high blood pressure, and cardiovascular disease and those in treatment for cancer. 

On this episode of the Patients Rising Podcast, we break down what the risk of coronavirus means for these patients and their caregivers, and what precautionary resources and steps should be considered. 

Guest:

Paul Offit, M.D., Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia. 

Dr. Paul Offit has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. His expertise and research focus is on vaccines, immunology, and virology. 

Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.

Dr. Offit has published over 160 papers in medical journals dealing with his work on the rotavirus vaccine and overall vaccine safety practices. He has also authored eight books on vaccines and how they are communicated about with the general public. 

Previously, Dr. Paul Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two. 

Dr. Offit earned a B.S. from Tufts University in Boston, Massachusetts, and earned his M.D. from the University of Maryland, Baltimore. 

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 to other articles and videos to complement our interview with Dr. Paul Offit:

Virology expert: coronavirus mortality ‘keeps coming down’ 

Philly vaccine pioneer: We can’t rush a coronavirus vaccine |Q&A 

Where to go for the latest information:

CDC: COVID-19 What You Should Know

Coronavirus.gov

Resources from NIH

Will my insurance cover a coronavirus test?

Health Insurance Providers Respond to Caronavirus (COVID-19)

Medicare: Is my test, item, or service covered?

Who should be tested for Coronavirus?

In addition to the advice that is continually updated by the CDC, you should check with your doctor about whether you need to be tested or when to take additional steps to protect yourself.  

CDC: COVID-19 Information for Specific Groups

Are my meds in short supply?  

ASHP: Current Drug Shortages

Data and studies:

GIS COVID-19 Data

Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China

Finally, we would be remiss if we did not urge our audience to get a flu shot and ensure that vaccinations for other diseases such as measles, pneumonia, etc., are up to date.  There have been 32 million cases of influenza during the 2019-2020 flu season.  And last year nearly 1300 people contracted measles.  That’s the highest number since 1992. 

Episode 2: Biosimilars: What You Need to Know

Patients Rising Podcast

Ep. 2 Show Notes

Title: Biosimilars: What You Need to Know

Price: one the of largest barriers to medical treatment and accessible medicine. As many patients struggle to afford the high price tags at the pharmacy, there might soon be a solution. As more biosimilars enter the commercial market, some experts are claiming that they will actually lead to lower drug costs for patients everywhere.
In the second episode of the Patients Rising Podcast, we look into the relationship between biosimilars and drug prices, break down what exactly biosimilars are, and how they are changing the healthcare landscape.
Guest:
Chad Pettit, Executive Director, Global Value Access and Policy, Amgen Biosimilars Business Unit, Thousand Oaks, California.
Chad Pettit has worked with biotechnology company Amgen for nearly 20 years. In his current role as Executive Director, Mr. Pettit serves as a liaison with biopharmaceutical companies on biosimilar policy. He also focuses on introducing biosimilars to the market and working with policy to ensure commercialization leads to cost savings in all global regions. He works at the intersection of policy and biopharmaceutical medicine to facilitate greater accessibility and has an acute understanding of the impacts biosimilars have on the global health care market. Most recently, he has worked to construct a global market access launch strategy for Amgen’s 10 biosimilars.
Previously at Amgen, Mr. Pettit served on the U.S. Biosimilars industry trade group as the Amgen Board Member.
Mr. Pettit earned a B.S. in Chemical Engineering from the University of California, Davis, and an M.B.A. from the University of California, Los Angeles.
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: 

Public Workshop: FDA/FTC Workshop on a Competitive Marketplace for Biosimilars

Heimerdinger Foundation

Ceres Community Project

 

Patient’s Rising Concierge

 

Episode 1: How Insurers Double Dip with Copay Accumulators

Patients Rising Podcast

Ep 01 Show Notes

How Insurers Double Dip with Copay Accumulators

The Centers for Medicare & Medicaid services are about to put a rule in place that allows insurers and pharmacy benefit managers to get paid TWICE for some of your prescriptions. 

This policy is called “the copay accumulator,” and it allows insurers to accept payment for a drug without applying the payment to your deductible. 

In the first episode of the Patients Rising Podcast, we discuss copay accumulators, and why patients need to know about them. We also talk about a looming deadline to comment on a proposed federal rule on the topic. 

How to take action

The deadline to comment on the rule regarding copay accumulators is 11:59 pm eastern standard time Monday, March 2nd, 2020.

Let your voice be heard. Send your comments directly to Seema Verma, Administrator, Centers for Medicaid and Medicare Services (CMS).

Tell her to honor your already high out of pocket costs, and to allow copay assistance to be applied to your deductible. 

You can also do this directly from our website

Guest

Carl Schmid, Executive Director, HIV + Hepatitis Policy Institute, Washington, D.C.

Carl Schmid has been a national policy and advocacy leader in the HIV community for over 20 years.  He spent 16 years with The AIDS Institute, where he served as its Deputy Executive Director and led the Institute’s HIV and viral hepatitis federal policy work before the executive agencies and the Congress. In December 2019, he left The AIDS Institute to form the HIV + Hepatitis Policy Institute, which promotes quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.

Mr. Schmid helps lead the HIV and hepatitis communities’ advocacy efforts in Washington, D.C., to ensure domestic HIV and hepatitis programs, including the Ending the HIV Epidemic initiative, the Ryan White Program, CDC HIV and hepatitis prevention programs, and NIH AIDS Research, are based on sound public policy and receive full funding. 

He has expertise in healthcare financing systems, including Medicaid and Medicare, and leads efforts to ensure that the Affordable Care Act meets the needs of people living with or at risk of HIV and hepatitis. As part of HIV + Hep’s work in advocating for people with HIV and hepatitis, Mr. Schmid works extensively with other patient and disease groups on collective efforts to ensure that patients, particularly those with chronic conditions, have access to quality and affordable healthcare, including prescription medications.

Mr. Schmid served as a consumer representative to the National Association of Insurance Commissioners in 2018-19.  In July 2019, he was appointed to the PEPFAR Scientific Advisory Board.

He was a member of the Presidential Advisory Council on HIV/AIDS from 2007-09 and chaired its Domestic Subcommittee.  In 2010, he was named by POZ magazine as one of the 100 most effective AIDS fighters and by Whitman-Walker Health as one of the 25 individuals who have played prominent roles in the fight against HIV in D.C. In 2016, he was named the Champion of the Year by the ADAP Advocacy Association. 

Mr. Schmid earned a B.A. in Public Affairs and a M.B.A. in International Affairs from the George Washington University in Washington, D.C.

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 

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