Patients rely on access to a broad range of innovative and effective medications to find a treatment option that best suits them. But restrictive formularies and price caps could prevent patients from accessing newer medications that could improve their lives. 

Senator Marsha Blackburn discusses her mission to protect innovation and the competitive structure of Medicare Part D to keep drug costs low and options high for patients.

Plus, health economist Dr. Paul Langley underscores the importance of including patient and caregiver voices while assessing the cost value of drugs. And Kate speaks with Kristine Hutchinson from a caregiver’s perspective, and Patient Correspondent Angela Deed reflects on the frustration of not being heard by doctors. 

Guest:

U.S. Senator Marsha Blackburn was sworn in to the Senate in January 2019.

Marsha Blackburn was elected to the U.S. Senate in 2018, and is currently serving her first term representing the state of Tennessee. Before her election to the Senate, Marsha represented Tennessee’s 7th Congressional District.

In 2002, Marsha was elected to represent the people of Tennessee’s 7th Congressional District based on her record in the state legislature. She brought her Tennessee values to Washington, DC, and became a leader in the fight for small, efficient federal government that is accountable to its citizens. As a Congressman, Marsha was often selected by her colleagues to lead the charge for principled conservatism. Her congressional career has been punctuated by her Chairmanship of the Energy and Commerce Committee’s Subcommittee on Communications and Technology, as well as bipartisan expertise in defending songwriters’ and performers’ rights.

Links:

U.S. Senator Marsha Blackburn

Protecting Innovation for the Next Generation Act

New Jersey ‘Shot and a Beer’ program offers free beer to those who get Covid-19 vaccine

H.R. 3’s international reference pricing misses the mark

A Better Way: Replacing the QALY with a true, patient-centered quality-of-life measure

Patient Correspondent: Angela Deeds 

Patients Rising Concierge 

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April is Donate Life Month, and we examine many challenges facing organ transplant recipients. Amidst the physical and emotional toll of surgery, many patients also have to juggle apartment searching, moving, and financing a second home or apartment while they recover. And insurance companies refuse to cover these expenses.

Denise Redeker, Founder and CEO of Heartfelt Help Foundation, shares her experience undergoing a heart transplant, her move to Silicon Valley for the procedure, and how her organization helps other organ recipients find affordable housing.

Plus, field correspondent Kate Pecora interviews Richard Sperry on his misdiagnosis of ALS and how it led him to patient advocacy. And neurologist Dr. Ray Dorsey outlines action items for helping the Parkinson’s community. 

Guest:

Denise Redeker

Founder and CEO, Heartfelt Help Foundation

Denise Redeker is a heart transplant recipient, patient advocate, organ donation advocate and founder of Heartfelt Help Foundation.  Founded in 2020,  Heartfelt Help Foundation  helps Bay Area transplant recipients both afford and source the medically required post transplant housing that, for most transplant recipients, necessitates relocating temporarily to within a short distance of their hospital.  Such expenses are rarely covered by insurance, often extremely expensive, and sufficiently critical to transplant recovery that an inability to afford them can delay a patient’s life-saving transplant surgery. In her free time, Denise loves long walks on the beach and discovering new hiking trails with her husband, Jim and son Matthew.  

Links:

Denise Redeker

Heartfelt Help Foundation

White House Proclamation on National Donate Life Month

Patients Rising Statement on H.R. 3

LISTEN: What’s in H.R. 3? Peter Pitts Explains

Richard Sperry

Everything ALS

Patient Correspondent: Dr. Ray Dorsey

Patients Rising Concierge 

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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.

The FDA’s Acting Commissioner Dr. Janet Woodcock brings listeners inside the FDA. While the agency’s hands are full with a global pandemic, the FDA is also still tasked with shepherding accelerated approvals for rare and chronic disease treatments, improving clinical trials, and assessing the cost effectiveness of medications. 

Plus, the patient perspective of FDA-accelerated approval medications. Sickle cell advocate Teonna Woolford stresses the urgency behind approving medications. And patient correspondent Nichole Davis shares her journey with fibromyalgia and the importance of health literacy. 

Guest:

Dr. Janet Woodcock

Acting Commissioner, Food and Drug Administration

As Acting Commissioner, Dr. Woodcock oversees the full breadth of the FDA portfolio and execution of the Federal Food, Drug, and Cosmetic Act and other applicable laws. This includes assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices; the safety and security of our nation's food supply, cosmetics, dietary supplements, products that give off electronic radiation; and the regulation of tobacco products.

Dr. Woodcock began her FDA career in 1986, joining the agency’s Center for Biologics Evaluation and Research (CBER) as Director of the Division of Biological Investigational New Drugs, as well as serving as CBER’s Acting Deputy Director for a period of time. She later became Director of the Office of Therapeutics Research and Review in CBER, which included the approval of the first biotechnology-based treatments for multiple sclerosis and cystic fibrosis during her tenure.

Links:

Dr. Janet Woodcock

Teonna Woolford

The Sickle Cell Reproductive Health Education Directive

Patients Rising Diversity, Equity, and Inclusion Council

Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses

Drug Board is Wrong Rx for Colorado 

What Do You Do When Kids Are Still Unvaccinated?

Supply vs. Demand: When Will the Scales Tip on COVID-19 Vaccination in the US?

Patient Correspondent: Nichole Davis

Patients Rising Concierge 

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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.

The most effective treatments are often out of reach for patients. Big news came from the FDA announcing the approval of CAR-T therapies for multiple myeloma patients, but drug assessments from third-party groups are concerning. Will patients be able to access these life-saving treatments?

Multiple myeloma oncologist Dr. Rafael Fonseca highlights the benefits of CAR-T therapies, the future of these advanced technologies, and the impossible task of putting a dollar value on patient quality of life. We also hear from multiple myeloma patient and advocate Dale Hopkins on how designer drugs like CAR-T could be a game-changer for his treatment regimen. 

Guest:

Rafael Fonseca

Interim Director, Mayo Clinic Cancer Center

Rafael Fonseca, M.D., is the interim director of Mayo Clinic Cancer Center and the director for Innovation and Transformational Relationships at Mayo Clinic's Arizona campus.

Dr. Fonseca has a broad range of research interests, including clinical trials for the treatment of myeloma and related conditions, a better understanding of the genetics of myeloma and related conditions (including the clinical implications), new drug development (including harnessing the cells' metabolism to develop effective therapies), myeloma bone disease, pharmacoeconomics, and policy. 

The cumulative research efforts of Dr. Fonseca's laboratory have led to a better understanding of myeloma and related diseases, and unlocked novel treatment options for patients and provided context for the pharmacoeconomic implications of new therapies.

Links:

Dr. Rafael Fonseca

Dale Hopkins Blog

FDA Approves First CAR-T Cell Therapy for Multiple Myeloma 

ICER’s Review on Multiple Myeloma 

Limiting Medicaid Access to Accelerated Approval Drugs: Costs and Consequences

Patient Correspondent: Megan Claire-Chase

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

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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.

You may have seen Johns Hopkins Hospital surgeon Dr. Marty Makary all over the national news this week, and he also joins the Patients Rising Podcast to talk with us about the winners and losers in the healthcare system, why doctors would rather spend time with you but are bogged down with paperwork, and how technology and healthcare reform could help. 

Plus Kate Pecora speaks with cystic fibrosis advocate Kori Tolbert on a cross-country move just to receive treatment. Plus a tip from the Patients Rising Concierge Desk on locating family members within the hospital system. 

Guest:

Marty Makary, M.D., M.P.H.

Surgical Oncologist, Johns Hopkins Hospital

Dr. Marty Makary is a New York Times bestselling author and leading voice for transparency in health care. He is the recipient of the 2020 Business Book of the Year Award for The Price We Pay. A professor at the Johns Hopkins Bloomberg School of Public Health, he has published over 250 scientific articles on the redesign of healthcare, medical innovation, and vulnerable populations. Dr. Makary has been elected to the National Academy of Medicine and is Editor-in-Chief of Medpage Today. He has written for The Wall Street Journal, The New York Times, and USA Today and is a frequent medical commentator. 

Clinically, Dr. Makary practices pancreas surgery and has pioneered novel operations at Johns Hopkins.  He is the recipient of the Nobility in Science Award from the National Pancreas Foundation and has been a visiting professor at over 20 medical schools.

Links:

Dr. Marty Makary

The Price We Pay

John Lewis NIMHD Research Endowment Revitalization Act of 2021

Discrimination in the Doctor’s Office

Black Woman Ignored - Ends up with Stage 3 Cancer

She’s 14 months old and needs a drug that costs $2.1 million to save her life

AbCellera’s COVID-19 treatment is saving lives in the U.S. In Canada, it’s sitting in storage. 

GAO Report on Federal Contributions to Remdesivir 

Kori Tolbert 

Patients Rising Concierge 

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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.

We conclude our series on lupus with a trip to the doctor’s office, where rheumatologist Dr. Mark Box delves into the clinical side of the disease. He explores dealing with insurance companies and preserving the doctor-patient relationship. Our field correspondent, Kate Pecora speaks with Cheryl Etheredge, founder of Smiles Behind Lupus, on her lupus journey and how she gives back to others through the Lupus Smile Box program.

And in the aftermath of the Institute for Clinical and Economic Review’s (ICER) assessment of lupus nephritis treatments, Terry and Dr. Bob examine how the potential results could impact the community. Plus, is ICER creeping into state legislatures? 

Guest:

Mark Box, M.D. 

Rheumatologist, Carondelet Rheumatology 

Dr. Box is board-certified in rheumatology and a certified densitometrist who also conducts research that informs future treatments for his patients. He is active in the healthcare industry, advocating for medical legislation, and supporting clinical research.

His areas of interest include Internal Medicine, Densitometry, Autoimmune Disorders, Rheumatoid Arthritis, Osteoarthritis, Psoriatic Arthritis, Bursitis, Sjogren's Syndrome, Raynaud's Disease, Still's Disease, Lupus, Fibromyalgia, Ankylosing Spondylitis, and Gout.

Dr. Box earned his medical degree from the University of Missouri School of Medicine. 

Links:

Dr. Mark Box

Smiles Behind Lupus

Cheryl Etheredge

New Health Legislation Includes Insulin Cap

Robert Popovian: We Need Greater Transparency to Improve the U.S. Healthcare System

Patients Rising Concierge 

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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.

This week, the Institute for Clinical and Economic Review (ICER) deliberates the fate of insurance coverage for patients with lupus. 

In this episode, Mollee Huffman shares her diagnosis of lupus, how it impacted her Navy career and day-to-day life. 

Plus, Terry and Dr. Bob look at how hospitals are making it impossible for patients to Google search their prices, drug pricing legislation in Congress (H.R. 3), and what ICER’s poor track record for undervaluing drugs signals to the lupus community awaiting their review.

Guest:

Mollee Huffman

Chronic Illness Advocate and Patient

Links:

Mollee Huffman

ICER’s Lupus Nephritis Public Meeting (3/26)

Hospitals Hide Pricing Data From Search Results

States are Eyeing Public Option Health Plans. Many Obstacles Stand in the Way. 

House Passes Bill That Would Extend Medicare Sequester Cuts Until December

Drug Pricing, Climate, Immigration: House Dems Eye ‘Kitchen Sink’ for Next Big Bill

ICYMI: Last Word: ICER’s flawed pricing recommendations for new high cholesterol treatments

Patient Correspondent: Megan Staley

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

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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.

When a chronic condition prevents you from working, you might find yourself filling out a disability claim. But what happens when it’s denied? And how can you fight to receive your health benefits?

All of this ties back to ERISA, the Employee Retirement Income Security Act. This week’s guest, ERISA lawyer Glenn Kantor, helps us understand how ERISA impacts patients on employer-sponsored health plans.

Plus, a look inside the fight for marriage equality within the disability community. Kaitlin Kerr shares her story and explains how patients with disabilities could lose their Social Security Disability Insurance upon entering an interabled marriage. 

And Dr. Paul Langley kicks off a new segment, The Last Word, where he breaks down ICER's flawed pricing recommendations for high cholesterol treatments. 

Guest:

Glenn Kantor

Founding Partner, Kantor & Kantor LLP.

Glenn Kantor is founding partner of Kantor & Kantor LLP. As a young attorney, Glenn saw the injustice of wrongful insurance denials and created a law firm to represent individuals seeking to obtain their rightful benefits. Glenn is committed to ensuring that clients receive the benefits they are entitled to under their insurance policies or group health plans.

Glenn also represents family members to obtain wrongfully withheld life insurance benefits in situations regarding DUI deaths, domestic partnerships, failure to disclose, and improper enrollment. He works with elderly clients to help them obtain long-term care benefits that they are entitled to under their long-term care insurance policies.

In 2011, Glenn worked with California Insurance Commissioner Dave Jones to help pass California Insurance Code Section 10110.6, a law that prevents disability insurance companies from inserting language into policies that gives them the discretion to deny claims.

Glenn earned his J.D. from the University of Southern California Law Center. 

Links:

Glenn Kantor

How the American Rescue Plan will Improve Affordability of Private Health Coverage

Marriage in the Disabled Community: More Complicated Than You May Think

Marriage, Ableism, and Social Security Disability

The Marriage Penalty: Choosing Love or Money

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

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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.

If you have trouble adhering to your medication regimen or know you need to eat healthier, but are overwhelmed, tiny habits may be your answer.  Examining your small habits can help patients with chronic illness  live healthier lives. Behavior scientist and best-selling author BJ Fogg gives us step-by-step tips for implementing habits into their daily routine. 

Plus, field correspondent Kate Pecora virtually travels across the pond to speak to U.K. patient Jess Logan, founder of Making the Invisible Visible. She shares her journey with inflammatory bowel disease (IBD), long wait times to see a specialist and making her voice heard in the doctor’s office. 

Guest:

BJ Fogg, Ph.D. 

Founder and Director, Behavior Design Lab at Stanford University

Dr. BJ Fogg is a behavior scientist with deep experience in innovation and teaching. At Stanford University, Dr. Fogg directed a research lab for over 20 years. He also teaches his models and methods in special Stanford courses each year.

On the industry side, Dr. Fogg trains innovators to use his work so they can create solutions that influence behavior for good. The focus areas include health, sustainability, financial wellbeing, learning, productivity, and more. 

In 2002, Dr. Fogg published a book entitled, Persuasive Technology, about how computers can be designed to influence attitudes and behaviors. At the time of publication this book was mostly ignored. Now, almost 20 years later, Dr. Fogg sees his predictions and warnings about persuasive technology were surprisingly accurate.

In 2009 his research interests moved away from persuasive technology toward human behavior in general, especially health habits. This led to creating a new set of models and methods that comprise what he calls “Behavior Design.” In January of 2020, Dr. Fogg shared 300 pages of new and practical uses for Behavior Design in his New York Times Bestselling book Tiny Habits.

Links:

BJ Fogg

Tiny Habits

CDC: Vaccine Guidance

Statement in Support of Medigap Insurance for Patients with End-Stage Renal Disease

Give a Crap Challenge

Making the Invisible Visible

Jessica Logan

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

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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.

COVID-19 has caused people to delay important cancer screenings and medical appointments. Coupled with the rising rates of colon cancer among younger adults, it’s clear the healthcare industry must change its approach to screenings, education, and prevention. 

Cindy Borassi, Interim President of the Colon Cancer Foundation, explains how the organization aims to increase colon cancer screenings in underserved communities. Plus, she discusses the importance of educational outreach among younger populations. And Kate interviews Cassie Fraser on her experience being diagnosed with colon cancer in her forties, and the importance of having a strong support network. 

Guest:

Cindy Borassi

Interim President, Colon Cancer Foundation

Cindy Borassi is the President of the Colon Cancer Foundation, a not-for-profit “Dedicated To A World Without Colorectal Cancer™.” Ms. Borassi has spent nearly 30 years developing and leading new programs and business initiatives in the not-for-profit space, both in the U.S. and abroad.

Prior to joining the Foundation, Cindy served as Development Director for the International Executive Service Corps (IESC). As Development Director, Cindy was responsible for IESC's corporate, private and governmental development efforts. While there, she used private-public partnerships to leverage existing and new programs around the globe.

As Interim President of the Colon Cancer Foundation (CCF), Cindy leads CCF’s national communications and outreach efforts focused on building awareness of colorectal cancer and the importance of early screening and detection of the nation’s second-leading cancer killer of women and men. She has been actively involved in the organization and growth of the Foundation’s annual Early Age Onset Colorectal Cancer Summit (EAOCRC) since its inception in 2015.

Links:

Cindy Borassi

Colon Cancer Foundation

Give a Crap Campaign

Raising Awareness About Colorectal Cancer, in March and Beyond

Mass. House QALY Ban Bill

Mass. Senate QALY Ban Bill

Biden administration pumps breaks on signature Trump drug pricing proposal

COVID-19 related delays to colorectal cancer screening causing a 11.9% increase in death rates, new research reveals

The False Dilemma of Post-Vaccination Risk

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?

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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.