Patients Rising Podcast

40 Episodes
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By: Patients Rising

Patients Rising brings its unique and established brand of patient advocacy to a weekly podcast, featuring honest and helpful discussion about issues impacting those with chronic illness. Executive Director Terry Wilcox hosts the show, with Robert "Dr. Bob" Goldberg, Co-Founder and Vice President of the Center for Medicine in the Public Interest.

A Game-Changing Year for Biosimilars
#4
Last Friday at 6:38 PM

This year, six biosimilars for the top-selling medicine, Humira, will enter the market, with the first launching on January 31, 2023. Increased competition from biosimilars can drive down costs. But experts argue that insurers and pharmacy benefit managers will receive those savings – not patients. 

On this episode, hear from pharmacists, health economists, patient advocates, and health care experts about what biosimilar milestones 2023 will bring for patients. Plus, how to fix the system so that patients get the cost-savings they need.

And listen to Brandi Privitera’s story, where she discusses her health care journey with fibromyalgia and lends...


What Congress Can Do for Patients in 2023
#3
01/20/2023

Can a divided Congress work together to help patients? Health policy experts Jon Deuser and Mike Gaffin tackle that question. They explain what health care issues Congress might address, including the lack of transparency around pharmacy benefit managers (PBMs), and talk about the key players on Capitol Hill who will be shaping health policy. 

And patient advocate Rachael Novick shares her story about step therapy. The 11-month insurance process forced her off a stable medication, resulting in additional costs and medical care. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. B...


Accelerating Access to New Treatments
#2
01/13/2023

A new Alzheimer’s treatment received FDA approval under the accelerated approval program. Former FDA Associate Commissioner Peter Pitts explains how the accelerated approval pathway leads to incremental innovation, or building blocks to develop the next generation of medicines for all patients. 

Plus, patient advocate Katie Coughlin shares her experience living with Ehlers-Danlos Syndrome (EDS), and why better care coordination could improve outcomes for her and fellow patients living with a rare disease. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medic...


New Year, New Health Care Changes
#1
01/06/2023

Last year President Biden signed the Inflation Reduction Act into law, which included several changes to Medicare. Terry and Dr. Bob discuss the three changes that start this year, including the $35 monthly cap on insulin, and more. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Guests:

Doug Badger, Senior Fellow, Galen Institute

Amy Gietzen, Scleroderma Patient Advocate

Vanessa Steil, Patient Correspondent 

Saida Mahoney, Patient Correspondent 

Links: <...


Set Tiny, Healthy Habits in 2023
#52
12/29/2022

Have big goals for 2023? Set yourself up for success by setting “tiny habits.” To help you get a head start on your new year goals, listen to this rerun of our conversation with behavior scientist BJ Fogg. He shares his advice on how to set what he calls “tiny habits” and how it can help patients with chronic diseases manage their health care routines. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Guests:

BJ Fogg, Ph.D...


Patient Guide to Patents
#51
12/22/2022

How do patents work in the medical space? And how do they lead to new medicines, therapies, and devices? This patent-explainer episode answers those questions and more. 

Dr. Ron Cohen, a physician and President and CEO of Acorda Therapeutics brings listeners inside the patent process, including how they spur new innovations, and how he’s witnessed those innovations impact his patients. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Guests:

Ron Cohen, M...


The Fight to Save Home Health Care
#50
12/16/2022

Medicare’s proposal to reduce funding to home health care would deal a major blow to patients. But a new bill in Congress could help avert these catastrophic cuts. Guest Joanne Cunningham, CEO of the Partnership for Quality Home Healthcare, explains why this bill is a must-pass to protect patient access to home health services. 

Plus, learn about a new program to help you set and achieve your personal goals in 2023 all while connecting with a community of peers. Music and yoga therapist Spring Groove gives tips on combatting isolation and talks about her new personal wellness pro...


Alzheimer’s Caregivers
#49
12/09/2022

Promising clinical trial results for a new Alzheimer’s treatment are bringing hope to patients and caregivers. Hosts Terry and Bob discuss the needs of Alzheimer’s caregivers and how to measure if a new treatment helps meet those needs. 

Plus, TikTok personality Kris McCabe (@lifewithgrams) joins the show to share how she became a caregiver for her grandmother who lives with the disease. Since the age of 29, Kris has been a full-time caregiver, and she shares her experiences, insights, and advice from the past five years. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr...


What Congress Can Do for Patients
#48
12/02/2022

Congress is moving quickly to pass legislation before the year ends. Hosts Terry and Bob discuss the health care bills that, if passed, could increase patients' access to affordable and transparent care. From telehealth to generic drug access, learn how this legislation would impact you.

And hear from Dan “Dry Dock” Shockley, a Navy veteran living with Attenuated FAP, on his journey from diagnosis to advocacy.

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Guests...


Medicine for Patients in Need
#47
11/22/2022

In our special Thanksgiving episode, co-host Dr. Bob Goldberg speaks with Hillary Blackburn, PharmD, Chief Pharmacy Officer of Dispensary of Hope. Hear how the organization has channeled pharmaceutical donations to chronically ill patients in low-income communities. Plus, how the program has improved the health of communities all across the country. 

Hosts: 

Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Guests:

Hillary Blackburn, PharmD, Chief Pharmacy Officer, Dispensary of Hope

Links: 

Dispens...


Tearing Down Barriers to Patient Access
#46
11/18/2022

In this episode, get the latest solutions to ensure patients get the care they need when they need it. That includes the life-saving medication naloxone which can reverse the effects of an opioid overdose. Despite standing orders in many states, persisting stigmas and a lack of education and awareness has made it difficult for patients to get. Jeff Horwitz, COO of the SAFE Project, discusses his team's work to increase access to this medication. 

Veterans and military members also face barriers when it comes to accessing care through military health programs, like TRICARE. Jax Scott shares the u...


Veterans’ Health Care Battle
#45
11/11/2022

This Veterans Day, we’re thankful for the brave service members who have sacrificed so much to protect our country. But when many veterans return home, their next battle is with a health care system that makes it difficult for them to access the care they need.

To spearhead solutions and improve health care for veterans, Patients Rising has partnered with the Special Operations Association of America (SOAA) to launch Veterans Patients Rising. Executive Director of SOAA and veteran David Cook joins the episode to discuss the biggest health care challenges facing this community, including pharmacy access, me...


What’s Up with Congress and Health Policy?
#44
11/04/2022

Congress has the power to improve patients’ access to affordable and transparent care. That’s why it’s important for patients to know which lawmakers support legislation that positively impacts patients across the country.

To make this information accessible, Patients Rising Now created a beta 117th Congress Advocacy Scorecard.

This inaugural report shows how many bills each chamber considered that would impact patients, and it tested whether lawmakers had opportunities to support pro-patient legislation or Dear Colleague letters.

Spoiler alert: because Congress has been only voting on sweeping gigantic legislative packages, a lot of pro...


Health Care Horror Stories
#43
10/28/2022

In this Halloween episode, get the biggest health care horror stories of 2022 that impacted patients all across the country. From lack of access to care to burdensome insurance delays, as detailed by migraine patient advocate Yuri Cárdenas. Plus, learn about the solutions to these challenges that can protect future patients from experiencing these nightmares.

And for our field correspondent Kate Pecora’s final show, she speaks with Bob about her ten-month-long battle to get insurance coverage for the wheelchair she needs. She shares her challenges and tips for patients on how to access durable medical equipment (DME...


Protecting the Pharmacist-Patient Relationship
#42
10/21/2022

October is American Pharmacists Month, so we speak with Georgia Representative Buddy Carter about how his experiences as a pharmacist inspired him to advocate for patients and providers in Congress. He shares how independent, rural pharmacies are being put out of business by PBMs, and how their closures would be catastrophic to patient access. 

Hear from Yuri Cárdenas, a patient and migraine advocate, who contributed to a new report on PBMs, about the hurdles they have faced accessing and affording medication due to the work of middlemen.

Plus, hearing aids are now available over-the-counter, in...


Early Screenings for Early Diagnosis
#41
10/14/2022

Data shows more and more young people are being diagnosed with colon cancer.  How do we get more screening appointments on the books to keep people healthy?

Learn how a new campaign is changing public opinion around colonoscopies to cut through taboos and prevent cancer before it can even develop. All with a little help from actors Ryan Reynolds and Rob McElhenney. 

Plus, hear about a new report that brings patient stories to the forefront of the conversation around pharmacy benefit managers.

Finally, listen in to learn about Jenna Ziegler’s journey as a pa...


Smart Solutions for Specialty Prescriptions
#40
10/07/2022

Specialty medications can come with a high price tag and specialty mail-order pharmacies, mostly run by pharmacy benefit managers, have frequently created delays in getting necessary medications to patients.

However, new technologies have created a way for clinics and community practices to provide specialty medications to patients directly from their clinics. This makes it possible for clinics to have personalized, in-house pharmacies with shorter waiting periods and stronger doctor-patient relationships.

Learn how Ogi Kavazovic, Co-founder and CEO of House Rx, and Denali Cahoon, the tech start-up’s Chief Pharmacy and Operating Officer, have launched a pl...


Why Patients Pay More And Get Less
#39
09/30/2022

Is the cost of your health care going up? Have you struggled to access the care your doctor recommends? 

A group of physicians and health care experts are working to address these growing problems and make care patient-centered. They propose several reforms that would protect the doctor-patient relationship by reforming the role of hospital and prescription drug middlemen.  

Dr. Marion E. Mass and David Balat of Free2Care discuss how the hidden health care giants (Pharmacy Benefit Managers (PBMs) and Group Purchasing Organizations (GPOs)) inflate prices and make patients pay more for the same medical car...


Why Patients Pay More And Get Less
#39
09/30/2022

Is the cost of your health care going up? Have you struggled to access the care your doctor recommends? 

A group of physicians and health care experts are working to address these growing problems and make care patient-centered. They propose several reforms that would protect the doctor-patient relationship by reforming the role of hospital and prescription drug middlemen.  

Dr. Marion E. Mass and David Balat of Free2Care discuss how the hidden health care giants (Pharmacy Benefit Managers (PBMs) and Group Purchasing Organizations (GPOs)) inflate prices and make patients pay more for the same medical car...


The Multi-Billion Dollar Rx Middlemen: PBMs Explained
#38
09/23/2022

Pharmacy Benefit Managers (PBMs) have become embedded in the ecosystem of drug pricing– but these middlemen are one of the reasons patients see high prices at the pharmacy counter. 

This episode is a crash course in everything drug pricing with a focus on PBMs, from their inception to their influence on health care costs. Guest Antonio Ciaccia, drug pricing researcher, explains how the key players of the drug supply chain, specifically PBMs, have impacted patients’ access to transparent health care. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co...


How Community Can Make Us Healthier
#37
09/16/2022

An ongoing 10-year community-based project is improving the health of residents through investments in long-term health programs. Esther Dyson, the founder of Wellville, explains how community collaboration and resident involvement can have positive impacts on quality of life.

Plus, Terry and Dr. Bob discuss the latest health news, including AARP’s new financial report, which shows the bulk of its funding comes from insurance royalty deals.

And news from the FDA reveals the potential link between breast implants and cancer. Kate speaks with Maria Gmitro of the Breast Implant Safety Alliance to hear what this me...


How New Drugs are Made
#36
09/09/2022

It takes decades of research, millions of dollars in funding, and numerous failed attempts to develop and approve a new drug for patients. Private investors have helped fund pharmaceutical research and development to bring patients life-saving medicine – but recent policy changes may slow that process down. 

Venture capitalist Stan Fleming explains why the industry needs this investment to fund projects that can deliver new therapies to patients with rare and chronic diseases. And, why new policies could deter investors from funding high-risk research projects, particularly for Alzheimer’s and cancer. 

Plus, hear from scleroderma advocate Amy Gi...


Early Diagnosis: A Game-Changer for Patients
#35
09/02/2022

In the rare disease community, early diagnosis can put patients on a treatment plan faster and improve outcomes. But that depends on accessible and affordable screenings, genetic testing, and holistic care. Thankfully, there are policy solutions to make that a reality. 

August marked Spinal Muscular Atrophy (SMA) Awareness month, so we hear how this community advocates for greater access and affordability to improve care. We get the policy takeaways on how you can raise your voice for the rare disease community. Plus, hear one family’s story about their daughter’s diagnosis of SMA and why advancements in ge...


AARP’s Conflict of Interest
#34
08/26/2022

Is your Medicare plan giving you the best deal? It’s a tricky question since seniors have no tools to easily determine if their plan has the best price or coverage compared to others. 

There’s also a lack of transparency in health plans, particularly with third-party endorsed plans, like those sponsored by AARP. If any organization has a financial incentive to sell a health plan, is that plan in the best interest of the consumer? Or the sponsor who gets a kickback?

Hosts Terry and Dr. Bob unpack that question, and also bring on John...


Genetic Testing Resources
#33
08/19/2022

At-home genetic testing allows expecting parents to see if they might be carriers for genetic conditions, like cystic fibrosis or sickle cell. But the data from these tests are only one part of the equation. Patients need access to experts to help them interpret and apply the findings to their health care journey, which can include family planning.

We hear how one company is on a mission to “demystify” genetic testing. Plus, multiple sclerosis and rheumatoid arthritis warrior Kathy Chester shares her diagnosis journey and love for fitness, which still remains strong despite the challenges of living with...


How to See Hospital Prices
#32
08/12/2022

Hospitals and insurers are now required to share their prices and negotiated rates with the public. The problem? Most of the data is inaccessible to patients. 

Marcus Dorstel, Vice President of Operations at Turquoise Health, shares how his team has sifted through the data to create a tool patients can use to shop for health care services, compare prices, and find quality care.  Plus, the shocking price discoveries they made in the process. 

Terry and Dr. Bob also discuss how price transparency can help employers create health plan benefits that protect their employee’s physical and f...


Top Things You Didn’t Know About Congress’ Drug Pricing Bill
#31
08/05/2022

Congress inches closer to a massive, 725-page spending bill referred to as “Reconciliation.” It includes several drug pricing provisions that claim to lower Rx costs for seniors. But a closer look reveals that those savings aren’t as widespread as patients might expect.

Terry and Dr. Bob recruit the help of Medicare policy expert Doug Badger to uncover the top facts about the bill that patients need to know. 

Plus, hear from Michael Riotto, a multiple myeloma warrior who recaps his experience at the We the Patients Fly-In, including health policies that directly impact his ability...


Nonopioid Solutions for Chronic Pain
#30
07/29/2022

New procedures and nonopioid pain management give patients cutting-edge treatment options. But they’re frequently out of reach due to a lack of insurance coverage. Hosts Terry and Bob discuss how the bipartisan NOPAIN Act seeks to change that. 

Plus, Dr. Stanley Golovac discusses nonopioid options for pain management, and how expanded access can improve patient outcomes in the long run.  

And to get the patient perspective, Kate brings on Mugabi Byenkya, chronic pain advocate and author, to talk about accessing treatment options, and Tom Norris from California shares his chronic pain journey. 

Hosts...


Terry’s Take: Why Price Negotiation Won’t Lower Rx Costs
07/27/2022

In this special bonus episode, Patients Rising Now Executive Director Terry Wilcox provides her perspective as a caregiver to seniors amidst ongoing debates in Congress over how to lower drug costs. 

She shares why Medicare price negotiation, a provision within the reconciliation package, won’t lower costs for seniors at the pharmacy counter, and why rebate passthrough is the best hope for patients. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Need help?

The successful patient is one who can get what they need when they need it. We all know...


The Fight for Access with Government Agencies
#29
07/22/2022

For 17 years, the gastroparesis community has fought for the FDA to allow it access to a treatment they say is necessary to improve quality of life. Gastroparesis advocate Michael Smith details the efforts to make sure that patient voices spur action at the FDA. Plus, what this means for the broader impact of the FDA across the entire chronic disease community.

Terry and Dr. Bob also discuss the reignited conversation on drug pricing policies in Washington.  Kate speaks with migraine advocate Yuri about the misconceptions about this chronic illness and the struggle to get insurance coverage for n...


Can Biosimilars Save You Money?
#28
07/15/2022

Biosimilars have the potential to lower costs. But due to middlemen like pharmacy benefit managers (PBMs), those savings don’t always trickle down to patients at the pharmacy counter. How can we fix this system?

Julie Reed, executive director of the Biosimilars Forum, joins the podcast to explain what biosimilars are, why uptake has been slow, and what can be done to improve patient access and lower costs. 

We also hear from Lauren Kopsick, who shares her experience navigating burdensome step therapy requirements for her son’s care. 

Hosts: 

Terry Wilcox, Executi...


Healthcare’s Digital Future
#27
07/08/2022

Tired of telling your health care history over and over again to providers? Jessica Lunshof, a former nurse and caregiver found herself in this cycle that wasted time and placed an emotional burden on her and her family. 

She joins the podcast to share how she took this challenge and developed a digital solution - TAMVOES - to compile a patient’s health care data into one location. Dr. Bob and Terry discuss how these digital services are on the rise to make the healthcare system easier to navigate for the chronic disease community. 

And Kate...


Accelerated Approval Matters
#26
07/01/2022

Accelerated approval drugs have given patients access to care they otherwise would have waited years for. A new study shows that these drugs account for less than 1% of Medicaid spending - yet programs have placed restrictions on these medicines to curb spending. 

We hear from the author of that study, Dr. Kenneth Thorpe, about its findings and alternative solutions to cut costs without compromising patient access to innovative care. 

Plus, hear from Lyme Disease advocate Grace Shults about advocacy and the need for improved testing and care for this chronic condition.

Hosts: 

T...


How Chronic Illness Impacts Families
#25
06/24/2022

Keyla Caba is a patient advocate who lives with Crohn’s disease and ulcerative colitis. Her son was also recently diagnosed with a chronic disease, and she shares the challenges of being both a patient and a caregiver, mental health, and affording high copays for the care she needs.

In this special episode, Kate Pecora shares her conversation with Keyla, recorded live at the We the Patients Fly-In in Washington, D.C. Hear what led Keyla into patient advocacy and how she fights for the needs of the chronic disease community. 

Hosts: 

Terry Wilc...


Patients on Capitol Hill
#24
06/17/2022

This week, patients with chronic disease from across the country convened in Washington D.C. for the We the Patients Fly-In. They met with members of Congress and their staff to advocate for several pro-patient health care bills that would improve access, affordability, and transparency.

In this episode, we catch up with several advocates in the halls of Congress to bring listeners inside their meetings with lawmakers about the health care issues that matter to patients. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice Preside...


The Future of Pharmacies
#23
06/10/2022

No insurance? No problem. Blueberry Pharmacy in Pittsburgh is forging the path for a new kind of pharmacy. By cutting out the middlemen in the supply chain, Blueberry Pharmacy is able to provide its customers with inexpensive medications. It’s more transparent, and preserves the personal touch of an independent community pharmacy.

How’s it possible? Founder Kyle McCormick shares how his patients pay such low prices, and what the future of prescription drug access could look like with this model.

Plus, if you need to apply for SSI or SSDI, cancer legal expert Monica Brya...


The Power of Patient Data
#22
06/03/2022

Precision medicine harnesses the power of genetic data, which can improve treatment regimens and overall outcomes for patients. But accessing that data remains another challenge. Field correspondent Kate Pecora speaks with advocate Christine Von Raesfeld about how patient access to data can be a game-changer, and what can be done to expand that across the chronic disease community. 

Plus, did you see your 2022 Medicare premium go up? Terry and Dr. Bob discuss why. They also deliver health policy updates from Capitol Hill that impact patients, including new legislation introduced that would shed light on the practices of d...


Formula Crisis Hurts Chronic Disease Community
#21
05/27/2022

The formula shortage crisis has been devastating for patients with rare metabolic conditions, like PKU, who depend on specialty formulas daily. We hear from patients and families impacted by the shortage, including Lillian Isabella and Sarah Chamberlin, executive director of National PKU News. 

But patients have struggled to access and afford these formulas for years, which come with high price tags and aren’t always covered under insurance. A bill in Congress, the Medical Nutrition Equity Act, aims to change that.

And ahead of Memorial Day weekend, Terry and Dr. Bob discuss three health care bil...


Can Mark Cuban Deliver Cheaper RX?
#20
05/20/2022

A shark has entered the prescription drug waters. Entrepreneur and ABC Shark Tank investor Mark Cuban founded the ‘Mark Cuban Cost Plus Drug Company’ which aims to slash prices, improve transparency, and provide greater convenience to patients. How? It cuts out the middlemen, pharmacy benefit managers, from the supply chain. 

Plus, as ALS Awareness Month continues, field correspondent Kate Pecora speaks with Giulia, who lost her boyfriend to ALS, about his journey fighting the disease and who received access to a new treatment through compassionate use. And what does the formula supply shortage mean for the rare disea...


Have Health Plans Abandoned Rare Disease Patients?
#19
05/13/2022

“Your medication is no longer covered” are the words no patient wants to hear. Yet this is a common occurrence for patients with rare diseases who are on private health insurance plans. In an effort for plans to save money, they’re dropping coverage for rare disease treatments and sending patients to patient assistance funds. 

But once those funds are maxed out, it can leave patients on the hook for enormous copays. Guest Randi Clites of the Little Hercules Foundation shares how her son’s hemophilia treatment was dropped unexpectedly from their plan. Now, she’s on the hook fo...