Rare Disease Day is February 28. New and exciting medical innovations and drug therapies for rare disease abound, but accessing those treatments is another challenge. Discriminatory healthcare metrics like quality-adjusted-life-years (QALYs) devalue rare disease patient lives, signaling that a patient’s life isn’t worth covering treatments and therapies. 

Dr. Bill Smith explains how QALYs are used and how it prevents patients from getting the life-saving care they need. Plus, Patients Rising Field Correspondent Kate speaks with Marni Cartelli, a rare disease patient living with complex regional pain syndrome, and Patient Correspondent Lillian Isabella celebrates Rare Disease Day by sharing her story of being diagnosed with PKU. 

Guest:

William Smith, Ph.D. 

Visiting Fellow in the Life Sciences, The Pioneer Institute

Dr. William S. Smith is The Pioneer Institute’s Visiting Fellow in the Life Sciences. Smith has 25 years of experience in government and in corporate roles, including senior staff positions on Capitol Hill, the White House Office of National Drug Control Policy, and the Massachusetts Governor’s office where he served under Governors Weld and Cellucci. 

He spent ten years at Pfizer Inc as Vice President of Public Affairs and Policy where he was responsible for Pfizer’s corporate strategies for the U.S. policy environment. He later served as a consultant to major pharmaceutical, biotechnology and medical device companies. Dr. Smith earned his Ph.D. in political science with distinction at The Catholic University of America.

Links:

William Smith, Ph.D.

The Biden administration needs to look beyond ICER for evaluating drug therapies

Inside Xavier Becerra’s quest for health care for immigrants

Maryland Senate overrides Hogan veto of bill that funds nation’s first drug affordability board

Senate Democrats push for public option as Biden weighs health-care reform plans

Marni Cartelli

She Started A Nonprofit Around Her Rare Disease. Here's Why.

Rare Disease Patients, You Must Make Yourselves Heard

Swapna, Alabama, and the Spotlight on Rare Disease

Patients Rising Concierge 

Patient Correspondent: Lillian Isabella

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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.

Minority communities are underrepresented in healthcare leadership roles. By dismantling systemic barriers, the entire healthcare industry can benefit from talented professionals, scientists, and researchers from diverse backgrounds. 

To help with this effort, Dr. Frank Douglas discusses his project, Safe Haven Dialogues, which empowers individuals to push back against discriminatory environments and make impactful change. Plus, Kate speaks with Andrea Baer of Mended Hearts to mark American Heart Month and patient correspondent Carina Fuller shares her experiences encountering healthcare discrimination. 

Guest:

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

Save Haven Dialogues LLC

An award-winning industry veteran with more than three decades of experience in healthcare, pharmaceuticals and entrepreneurship, Dr. Douglas has held leadership roles in both large and small biopharmaceutical companies. He led teams that were responsible for the development and marketing approval of many drugs, including Allegra, Lantus, Taxotere, and Actonel. 

Dr. Douglas has also held several academic positions. While at Massachusetts Institute of Technology (MIT), Dr. Douglas was the Professor of the Practice in the MIT Sloan School of Management and also held similar appointments in the departments of Biology, Biological Engineering, and the Harvard-MIT Division of Health Sciences and Technology and was the founder and first executive director of the MIT Center for Biomedical Innovation. 

Dr. Douglas holds a BS in Chemistry from Lehigh University, Ph.D. in Physical Chemistry, and a M.D. from Cornell University. 

Links:

Dr. Frank Douglas

Safe Haven Dialogues

Mended Hearts

Andrea Baer

Nursing Home Disclosures Taint Cuomo’s Pandemic Performance

ICER to Assess Two Treatments for Lupus Nephritis 

Patients Rising Concierge 

Patient Correspondent: Carina Fuller

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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.

Digital tech became a major healthcare tool during the pandemic. And AI-powered prescription drug apps are leading the charge in creating accessible and affordable medications. So how can these apps help patients take control of their healthcare?

Dr. Bob Arnot of Carecard dives into AI-powered apps and shares how users can find coupons for the drugs they need. Plus, Shelly Rosenfeld returns for this month’s Legal Tips segment to discuss laws in place to diversify clinical trials, and how patients can find out if they’re eligible. 

Guest:

Bob Arnot, M.D. 

Chief Medical Technologist, Carecard

Dr. Bob Arnot, internal medicine professional, journalist, author, and former medical correspondent for NBC and CBS, is Carecard's Chief Medical Technologist. He is a best-selling author and award-winning war correspondent who now focuses on Machine Learning with a broad background in systems architecture and user interface.

Dr. Arnot received his doctor of medicine degree from McGill University. 

Links:

Carecard

Momnibus Legislation

Huntsville Mom Battling ALS Calls for Better Access to Experimental Treatment

The Interoperability and Patient Access Final Rule is Here

Patients for Affordable Drugs Press Release

Shelly Rosenfeld

Cancer Legal Resource Center

Clinical Trials - American Cancer Society

Clinical Trials - National Cancer Institute

Cancer During COVID Series

Patient Correspondent: Myisha Malone King

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: [email protected]

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.

Underserved communities are at higher risk for COVID, but they’re getting vaccinated at a slower pace. How do we correct a healthcare system that fails to serve all Americans?

Dennis Johnson joins the show to share lessons learned from his time at the Children’s Health Fund and how to serve marginalized communities by lifting barriers to accessing care.

And Kate speaks with breast cancer survivor Megan-Claire Chase about encountering healthcare discrimination throughout her medical journey. 

Guest:

Dennis Johnson

Managing Director for Strategy and Evaluation at Mother Cabrini Health Foundation

Dennis Johnson is part of the executive team at the Mother Cabrini Health Foundation as Managing Director for Strategy and Evaluation. The MCHF mission is to improve the health and wellness of economically disadvantaged and underserved populations in New York State. Mr. Johnson works to develop and direct the foundation's strategic planning and evaluation framework to inform and support effective, impactful grant-making.

Previously, Mr. Johnson was Executive Vice-President for Government Affairs at Children's Health Fund, a non-profit organization that initiates and supports innovative pediatric programs and policies designed to meet the complex health care needs of medically underserved, homeless and economically-disadvantaged children. Mr. Johnson was also Policy Director of the National Center for Disaster Preparedness at Columbia University’s Earth Institute.

Mr. Johnson received his Bachelor's Degree from the University of Pennsylvania and his Master's Degree in Political Management from the Graduate School of Political Management at Baruch College.

Links:

Dennis Johnson

Megan-Claire Chase

CDC: Vaccine database on race and ethnicity paints incomplete picture

Trump-era rebate rule for Medicare Part D on hold until 2023

Aimed Alliance Asks CMS to Reinstate Six Protected Classes Requirements

Beating Cancer Despite the Inequities in Healthcare

Black Woman Ignored - Ends Up with Stage 3 Cancer

Discrimination in the Doctor’s Office 

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

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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.

Congress may soon revisit legislation to tackle the high costs of prescription drugs under Medicare. But drug pricing is never a simple fix.

Guest Peter Pitts explains the ins and outs of drug pricing. Plus, Terry and Bob discuss the Trump-era insulin rule recently frozen by the HHS, and Kate interviews Taylor Kane of Remember the Girls, an organization that advocates for carriers of X-linked diseases.

Guest:

Peter Pitts

President and Co-Founder, Center for Medicine in the Public Interest 

From 2002-2004 Peter was FDA’s Associate Commissioner for External Relations, serving as senior communications and policy adviser to the Commissioner. He supervised FDA's Office of Public Affairs, Office of the Ombudsman, Office of Special Health Issues, Office of Executive Secretariat, and Advisory Committee Oversight and Management. He served on the agency’s obesity working group and counterfeit drug taskforce.

His book, Become Strategic or Die, is widely recognized as a cutting edge study of how leadership, in order to be successful over the long term, must be combined with strategic vision and ethical practice. He is the editor of the new book, Coincidence or Crisis, a discussion of global prescription medicine counterfeiting.

He has served as an adjunct professor at Indiana University’s School of Public and Environmental Affairs and Butler University. Mr. Pitts also currently serves as a visiting professor at the University of Paris School of Medicine. 

Links:

Peter Pitts

Center for Medicine in the Public Interest

How U.S. CDC missed chances to spot COVID’s silent spread

Biden’s 1M shots-a-day COVID-19 goal was already reached - by Trump

Biden Inherits a Vaccine Supply Unlikely to Grow before April

Remember the Girls

Taylor Kane

Getting to Know Diseases of the Thyroid

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: [email protected]

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.

Vaccine distribution is off to a rocky start. While some states are exceeding expectations, others continue to lag behind. This week we grade America’s pandemic response to this point and vaccine distribution. Pandemic preparedness and biodefense expert, and Former Health and Human Services Deputy Secretary, Tevi Troy joins the show to explain where the country passes and fails in its COVID-19 response. 

And in our new segment to give legal help to patients, Shelly Rosenfeld of the Cancer Legal Resource Center gives caregivers tips for navigating time off and understanding caregiver duty. 

Guest:

Tevi Troy

Former Deputy Secretary, U.S. Department of Health and Human Services

Tevi Troy is a best-selling presidential historian, and a former senior government official. His latest book is Fight House: Rivalries in the White House, from Truman to Trump.

On August 3, 2007, Dr. Troy was unanimously confirmed by the U.S. Senate as the Deputy Secretary of the U.S. Department of Health and Human Services. As Deputy Secretary, Dr. Troy was the chief operating officer of the largest civilian department in the federal government, with a budget of $716 billion and over 67,000 employees.

Dr. Troy has extensive White House experience, having served in several high-level positions over a five-year period, culminating in his service as Deputy Assistant and then Acting Assistant to the President for Domestic Policy.

In addition to his senior level government work and health care expertise, Dr. Troy is also a presidential historian, making him one of only a handful of historians who has both studied the White House as a historian and worked there at the highest levels. 

Dr. Troy has a B.S. in Industrial and Labor Relations from Cornell University and an M.A and Ph.D. in American Civilization from the University of Texas at Austin.

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:

Tevi Troy

Fight House: Rivalries in the White House from Truman to Trump

Shall We Wake the President?: Two Centuries of Disaster Management from the Oval Office

HHS Regulations with Enduring Impact on Pricing and Reimbursement of Medical Services and Technologies

Shelly Rosenfeld

Cancer Legal Resource Center

American Cancer Society Caregiver Resources

Cancer Support Community

Caregiver Action Network

Who Cares for the Alzheimer's Caregivers?

From Wife to Caregiver

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

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Drop us a line: [email protected]

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.

With the new Hospital Price Transparency rule, patients will finally be able to view and compare the costs of services across hospitals. David Balat of Right on Healthcare joins the podcast to share how patients across the country will benefit from transparent prices. Learn how the rule can help you save money on hospital costs. 

Plus, Kate speaks with Meredith Casey of the Mighty Meredith Project on advocacy for invisible illnesses.

Guest:

David Balat

Director, Right on Healthcare

David Balat is the director of the Right on Healthcare initiative at the Texas Public Policy Foundation. He has broad experience across the healthcare spectrum with special expertise in healthcare finance. He is a former congressional candidate in Texas’ 2nd Congressional District and a seasoned hospital executive with more than 20 years of healthcare industry leadership and executive management experience.

Balat has earned the privilege of being invited to testify before the U.S. House Committee on Oversight and Reform in Washington, D.C., and before various House committees in the Texas state Legislature. He is a published author and op-ed columnist in Newsweek, U.S. News & World Report, Real Clear Politics, and other news outlets. He is also an active speaker and commentator on matters of health policy.

Balat often volunteers to help families navigate their bills and how to understand their benefits. He serves as a board member for a nonprofit focused on educating legislators and the community about important matters pertaining to healthcare freedom.

Balat is a first-generation American and the first in his family to graduate from college. He received his B.S. from the University of Houston and joint master’s degrees in business administration and hospital administration 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:

David Balat 

Texas Public Policy Foundation

Mighty Meredith Project

CMS Hospital Price Transparency

Price Transparency in Health Care: Will It Soon Be a Reality?

Governor explains how West Virginia became a top state for Covid vaccine administration

Israel is vaccinating so fast it’s running out of vaccine

Patients Rising Concierge 

Patient Correspondent: Mollee Huffman

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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: [email protected]

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.

Democrats soon will control Congress and the White House. What should patients with chronic conditions expect from a federal government run by Democrats who now appear to have no political obstacles for their legislative agenda?

David Mark of the Washington Examiner explains how a Democrat-controlled Senate, House, and White House might influence the direction of health policy. From the likelihood of Medicare for All to expansion of the Affordable Care Act, Terry and David discuss the possible changes in policy that will impact the chronic disease community. 

Plus, Kate speaks with Debilee Flores about her battle with Crohn's Disease and the healthcare discrimination she’s endured along the way.

Guest:

David Mark, Senior Editor, Washington Examiner

David Mark is senior editor at the Washington Examiner. Previously, he served as a senior editor at Politico for six years and at CNN Digital Politics, among other roles. He is the author of two books, one about negative campaigning and another examining political language, written with Chuck McCutcheon. David appears regularly as a political analyst on television and radio broadcasts, and in other forums. He also has spoken on policy and politics in 20 countries during lecture trips sponsored by the State Department and European Union.

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:

David Mark

Discrimination in the Doctor’s Office

Pro-Patient Agenda

Court Ruling in Favor of Hospital Price Transparency

Judge Blocks Trump’s ‘Most Favored Nation’ Drug Pricing Rule

‘Care now has to be rationed’: Los Angeles COVID-19 spike is crushing hospitals

Oklahoma City hospital posts surgery prices online; creates bidding war

SARS-COV-2 Transmission among Marine Recruits during Quarantine

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: [email protected]

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.

Congress and the new Biden White House are ready to hit the ground running in 2021. So we’re here to make sure patient needs are addressed and included in upcoming legislation. 

On this episode, Terry outlines the Pro-Patient Agenda, a list of 8 items that patients need from the Biden administration. Dr. Bob and field correspondent Kate Pecora join Terry to discuss tackling copay accumulators, healthcare transparency, and more. 

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:

Trump’s ‘most favored nations’ experiment undermines care for millions covered by Medicare

Proposed CMS Policy Will Allow Insurers to Broadly Implement Copay Accumulators

Supreme Court upholds controversial Arkansas law that regulates pharmacy benefit managers

‘Maisie’s Army’ Helps 16 Other Children Get Life-Saving Medication Denied by Insurance

Tamika Felder

Cervivor

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: [email protected]

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.

The Most Favored Nation Rule will take effect on January 1st. It’s bad news for Medicare infusion patients and providers, but there’s still time to stop it. 

The rule makes it financially impossible for medical practices to offer infusion services to Medicare patients. Julie Baak, practice manager at The Arthritis Center, near St. Louis, Missouri, explains how the rule will force many Medicare patients to abandon infusion treatments. And Kate speaks with one of Julie’s patients who depends on his infusion treatments to relieve his pain. 

Guest:

Julie Baak, Practice Manager, The Arthritis Center 

Julie Baak is the Practice Manager at The Arthritis Center near St. Louis, Missouri. She is a fierce patient advocate and a frequent contributor in the infusion advocacy space. She has published articles on NICA’s (National Infusion Center Association) blog, articles in Rheumatology News, and has been a speaker panelist at NORM (National Organization of Rheumatology Managers) and CSRO (Coalition of State Rheumatology Organizations) annual conferences. Her office is very active on social media and gets results for its patients, by any means necessary, even through public shaming of insurance companies and pharmacy benefit managers. 

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:

Julie Baak

Trump’s ‘most favored nations’ experiment undermines care for millions covered by Medicare

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: [email protected]

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.