Patients Rising Podcast

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

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.

A bid for universal healthcare falters in California. Meanwhile, the state is posed to take up misleading “Right to Repair” legislation that would allow technicians who are not held to FDA safety standards to operate on medical equipment. What are the ripple effects for patients across the country? Health policy expert Sally Pipes of the Pacific Research Institute explains what patients should know.

And hear about what’s happening at the federal level, including potential bipartisan solutions for drug pricing legislation and Medicare coverage for COVID-19 tests.

Plus, guests Eric Koleda and James Barley discuss how hyperbaric oxygen therapy (HBOT) has helped veterans overcome PTSD and traumatic brain injuries (TBI). However, accessing and affording this care remains a challenge. And the “Real Forrest Gump,” Vietnam Veteran Sammy Lee Davis and his wife Dixie share their personal stories about how HBOT has impacted their lives.

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:

Sally Pipes, President and CEO, Pacific Research Institute

Eric Koleda, Veteran and Director of HBOT4KYVETS

James Barley, Brigadier General, Desert Storm and Vietnam Veteran

Sammy Lee Davis, “The Real Forrest Gump,” Medal of Honor Recipient

Dixie Davis

Links:

TreatNOW

Cancer Moonshot Fact Sheet

Universal Healthcare - CA

Right to Repair Act

Biden-Harris Administration Will Cover Free Over-the-Counter COVID-19 Tests Through

Medicare | CMS

Build Back Better Act

Hyperbaric Oxygen Therapy: Get the Facts | FDA

HBOT for Kentucky Vets

Letter Supported: Opposition to any “Right to Repair” Legislation - Patients Rising Now

Survey: Most Californians believe worst of COVID is over | The Sacramento Bee

California's single-payer bill dies - POLITICO

Is Your Medical Equipment Safe? | Patients Rising Podcast

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.

With COVID-19 cases on the rise, remote care through telehealth is critical to keep patients safe. But it also serves a vital role beyond the pandemic. For chronic disease patients, it can unlock greater access to care regardless of where you live.

Former U.S. Secretary of the Department of Veterans Affairs, Dr. David Shulkin, led the charge to implement telehealth services within the VA. His model is a blueprint for success for broader telehealth adoption across all patient populations. Plus, Terry and Dr. Bob debunk the myth that telehealth isn’t a legitimate option for chronic and rare disease patients.

And Wisconsin rare disease advocate Kerri Engebrecht shares her mission to make patient voices heard by establishing a Rare Disease Advisory Council within the state legislature.

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, Patients Rising

Guests:

David Shulkin, MD, Former U.S. Secretary of the Department of Veterans Affairs

Kerri Engebrecht, Wisconsin Rare Disease Advocate

Nikki Lott, Patient Correspondent

Links:

The No Surprises Act Took Effect January 1; Here’s What It Means for Your Medical Bills

FDA Authorizes Pfizer COVID-19 boosters for 12 to 15 year olds

White House Aims to Improve Government’s Healthcare ‘Customer Service’

Telehealth in the Post-Pandemic World: What Do Stakeholders Want?

Telemedicine As The New Face of Healthcare in the US?

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.

Healthcare discussions in Washington are in full swing this week. Both the House and Senate meet to discuss a multitude of bills affecting everyday Americans, specifically those with rare and chronic diseases. Hosts Terry Wilcox and Dr. Bob break down the D.C. lingo and highlight three healthcare bills that will shape access to care and elevate patient voices: Cures 2.0, the BENEFIT Act, and the STAT Act.

Lastly, what does the future hold for telehealth appointments? The use of telehealth medicine has skyrocketed, but does your insurance cover it? Hear from Monica Bryant, Chief Operating Officer at Triage Cancer, who gives the must-ask questions patients should ask of their insurance plan to find out if they’re covered.

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:

Monica Bryant, Chief Operating Officer Triage Cancer

Links:

Benefit Act

Cures 2.0

STAT ACT

What is Telemedicine | Will it be accessible to those who need it most?

Senate Hearing: Prescription Drug Price Inflation: An Urgent Need to Lower Drug Prices in Medicare

House Hearing: on "The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight" | Democrats, Energy and Commerce Committee

Triage Cancer

What is “Telehealth” & Does Your Insurance Cover it? Resources

Telehealth Has Played an Outsized Role Meeting Mental Health Needs During the COVID-19 Pandemic

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.

“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 for a $21,000 bill.

Kelly Maynard, Founder and President of the Little Hercules Foundation, also joins the show to share how private plans are able to get away with this, and policy solutions that can close the loophole and protect patient coverage for rare disease treatments.

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:

Kelly Maynard, President of the Little Hercules Foundation

Randi Clites, Rare Disease Policy Director of the Little Hercules Foundation

Angela Deeds, Patient Advocate

Links:

Trends of Prescription Drug Manufacturer Rebates in Commercial Health Insurance Plans, 2015-2019

Hospitals Look to Raise Treatment Costs as Nurses' Salaries Increase - WSJ

Little Hercules Foundation

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.