Patients Rising Podcast

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 financial health.

We also hear from Melissa Moya, the founder and executive director of Lyme Fight Foundation, on her initial Lyme diagnosis and following treatment journey.

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

Guests: 

Marcus Dorstel, Vice President of Operations, Turquoise Health

Melissa Moya,  Founder and Executive Director, Lyme Fight Foundation

Jen (Levi) Peterson, Patient Correspondent

Adam Berkowitz, Founder and President, Simpara

Gill Rodriguez, HR administrator, Shine Solar

Links: 

Lyme Fight Foundation

Turquoise Health

President Biden Signs CHIPS and Science Act, Discusses Inflation Reduction Act

New price transparency regulations for hospitals, insurers empower patients

Health Plan Heroes

Rx Relief for All

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, or 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, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers. 

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 to access care. And correspondent Jess Wofford of Pittsburgh gives her perspective as a nurse and patient on PBM practices that hurt access to affordable care. 

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 

Guests:

Doug Badger, Senior Research Fellow, The Heritage Foundation and The Galen Institute

Michael Riotto, Multiple Myeloma Journey Partner, HealthTree

Jess Wofford, Patient Correspondent

Links: 

Apply Today! Advocacy Masterclass 

RxRelief4All

Watch: Multiple Myeloma Advocate Michael Riotto in DC for We the Patients Fly-In

The Impact of HR5376 on Biopharmaceutical Innovation and Patient Health 

CBO Cost Estimate: Reconciliation Recommendations for Prescription Drug Legislation

John Vernon, Fewer Drugs, Shorter Lives, Less Prosperity: The Impact of Comparative Effectiveness Research on Health and Wealth

The Financial Burden of PBM Benefit Design on People Using Specialty Medicines

It’s Time to Expose the Secret Drug Scam at the Heart of American Health Care

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, or 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.

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 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 

Guests:

Dr. Stanley Golovac,  Co-founder of Florida Pain 

Mugabi Byenkya, Advocate and Author of Dear Philomena

Tom Norris, Patient Correspondent

Links: 

Buy "Dear Philomena," via paperback

Buy "Dear Philomena" via e-book

Drug Pricing Negotiations

NOPAIN Act

Reform Medicare’s Payment Policy to Expand Patient Access to Nonopioids

Vertos Mild Procedure

Listen: Terry’s Take Special Episode

August Recess Start Date in the Air as Senators Await Ruling

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, or 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.

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 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, or 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.

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 necessary care.

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

Guests: 

Michael Smith, Former Vice President of G-PACT and volunteer advisor to the Oley Foundation

Yuri Cárdenas, Patient and Migraine Advocate 

Links: 

Dems try again on drug prices
FDA user fee timeline slipping, raising layoff-notice concerns

Feeling litigious, Vanda files another lawsuit against the FDA

Patients Rising Now Announces Spring Advocacy Masterclass Graduates

Register for the next Patients Rising Advocacy Masterclass

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, or 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, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers. 

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, 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

Guests: 

Julie Reed, Executive Director, Biosimilars Forum

Lauren Kopsick, Founder, Parent it Forward

Becca Vacha, Patient Correspondent

Links: 

Patients Rising Now Announces Masterclass Graduates

Patient Action Center

Learning Module: The Role Biologics & Biosimilars Can Play in Healthcare

Lend Your Voice to Support the Safe Step Act Here

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, or 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.

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 speaks with Tharaniya, an advocate on a mission to raise awareness of the importance of health literacy. Plus, patient correspondent Jemela Williams underscores the critical need for accessible mental health services. 

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

Guests: 

Jessica Lunshof, Co-Founder and President, TAMVOES

Tharaniya Vallipuram, Host, “Sit, Sip, Synapse”

Jemela Williams, Patient Correspondent

Links: 

Terry’s Tweet: Generic cost with insurance versus without

Health insurers are now required to post the price they pay to hospitals

TAMVOES

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, or 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.

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: 

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 

Guests:

Kenneth Thorpe, PhD., Chair, Partnership to Fight Chronic Disease

Grace Shults, Host, Generation Lyme

Jenny Jones, Patient Correspondent

Links: 

New Analysis Finds Accelerated Approval Drugs Do Not Drive Medicaid Spending

Deep Inside the Gun Bill: A Break for Prescription Drug Middlemen

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, or 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.

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 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

Guests:

Keyla Caba, Patient Advocate and Ambassador, Color of Crohn’s and Chronic Illness

Links: 

Join the Fly-In Conversation on Twitter

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, or 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.

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 President of the Center for Medicine in the Public Interest

Guests:

Dorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome Association USA

Jess Woffard, Nurse and IBD Advocate

Tami Seretti, Volunteer Patient Advocate, National Psoriasis Foundation

Links: 

Doylestown resident with rare blood disease, others go to DC to speak for people who struggle with health care costs

Join the Fly-In Conversation on Twitter

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, or 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.