PODCAST

Patients Rising Podcast

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.
Chronic Disease Care at Risk in Oregon
States are like dominos. When one state enacts a health policy, others replicate. Oregon’s Medicaid draft 1115 waiver has several red flags for patient healthcare access, and all patients should watch this carefully.Meghan Moyer, the public policy director at Disability Rights Oregon, explains why the waiver is a concern for chronic and rare disease patients. From discriminatory healthcare metrics that determine coverage to a closed formulary that would hinder access to FDA accelerated approval drugs, it’s filled with problems for patients. Plus, get the latest news on Medicare. Terry and Dr. Bob explain what you need to know about a proposed CMS Rule that attempts to lower costs in Medicare Part D, plus the limited Medicare Part B coverage for Alzheimer’s treatments. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Meghan Moyer,  Public Policy Director, Disability Rights OregonJim Sliney Jr., Director of Patient Outreach, Patients Rising Janet Roberts, Patient CorrespondentLinks:Patients Rising Now’s Comments on Oregon’s 1115 Waiver and Impact on AccessThe Rare Access Action Project’s Comments on Oregon’s Health Authority’s Section 1115 Waiver CMS Takes Action to Lower Out of Pocket Medicare Part D Prescription Drug Costs Section 1115 State Waiver List - Medicaid Medicare limits Aduhelm Coverage Clinical Trials Bob Saget's remembered as a Scleroderma advocate " For Hope " Movie Produced by Bob Saget Patients Rising Advocacy Master Class ApplicationShare your healthcare story on the 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.orgHave 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: podcast@patientsrising.orgThe 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.
4d ago
40 mins
Can Virtual Doctor Visits Improve Your Health?
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 RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:David Shulkin, MD, Former U.S. Secretary of the Department of Veterans AffairsKerri Engebrecht, Wisconsin Rare Disease AdvocateNikki Lott, Patient Correspondent Links:The No Surprises Act Took Effect January 1; Here’s What It Means for Your Medical BillsFDA Authorizes Pfizer COVID-19 boosters for 12 to 15 year oldsWhite 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.orgHave 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: podcast@patientsrising.orgThe 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.
Jan 7 2022
38 mins
The Politics of Healthcare in 2022
For the chronic disease community, 2022 is set to be a major year of health policy. On this episode, Republican and Democrat political experts weigh in on what’s on the horizon for healthcare policies in the new year. Matt Rodriguez, a democrat political strategist, and Doug Badger, a conservative public policy expert at the Heritage Foundation, share their insights on the politics of healthcare. The roundtable conversation dives into drug price setting in Build Back Better, insulin price caps, COVID-19 response, and how healthcare issues will shape the 2022 midterm elections. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Matt Rodriguez, Founder and CEO, Rodriguez StrategiesDoug Badger, Senior Fellow for Domestic Policy Studies, The Heritage FoundationLinks:GOP Report: Role of Pharmacy Benefit Managers in Pharmaceutical MarketsDem Report: Unsustainable Drug Prices: Findings from the Committee’s Drug Pricing Investigation and the Need for Structural ReformsDemocrats’ plan to cap consumer insulin costs face GOP threat, skeptical advocatesThe U.S. health secretary hints that more federal funds may be needed to fight an Omicron surgeNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Dec 28 2021
30 mins
Non-Medical Switching Hurts Patients
A doctor knows their patients’ needs best. But too often, insurance gets in the way. In an effort to lower costs, insurers sometimes force stable patients off of prescribed medication to a cheaper option. It’s called non-medical switching, and can harm a patient’s health. We hear from Gary Lawson, who shares the story of his son’s extreme case of Crohn’s disease. After finally finding a treatment that alleviated his painful symptoms, his insurance company non-medically switched him against his doctor’s advice. Plus, learn about the ongoing advocacy efforts to make airplanes wheelchair accessible. Field correspondent Kate Pecora speaks with the founders of All Wheels Up, an organization actually crash testing wheelchairs for commercial flights. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Gary Lawson, Lawson Attorneys PLLCMichele Campanelli-Erwin, President and Founder, All Wheels UpAlan Chaulet, COO and Founding Board Member, All Wheels UpElla Balasa, Patient CorrespondentLinks:Biden’s FDA pick on track for confirmation with GOP helpNearly one-third of Americans skipped care in the past three months due to cost: pollUpdate on the Phase 4 Confirmatory Study of AduhelmRegister Today: Patients Rising Advocacy MasterclassNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Dec 21 2021
35 mins
How to Fight an Unfair Medical Bill
Have you received an unfair medical bill? You’re not alone. Many patients have faced high bills that are simply incorrect, or even predatory. But let’s face it, even understanding complex and confusing bills is a huge challenge. Patients Rising wants to arm you with how to fight back on this week’s episode.Investigative journalist Marshall Allen has worked with patients for years. He’s dug into their medical bills to understand the ins and outs of medical billing. He shares his tips to empower patients to fight back against unfair charges.And hear from a patient about her own medical bill drama: DeeAnn Dean’s husband, Jason, received a bill for over $6,000 for just six stitches, leading her to delay her own medical care out of fear they’d receive another astronomical tab. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Marshall Allen, author, Don’t Pay the First BillDeeAnn DeanMorgan Fitzgerald, Patient CorrespondentLinks:Senate passes bill to delay nearly 10% in Medicare cuts expected to start in JanuaryThe ER charged him $6,589.77 for 6 stitches, a cost that led his wife to avoid the ERNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Dec 17 2021
37 mins
Rare Disease + the Fight for Funding
Today’s medical research and development creates the cures of tomorrow. But it requires immense amounts of funding to develop safe and effective drugs, treatments, and medical devices. In the rare disease space, funding is in short supply.Hear how rare disease organizations harness the power of grassroots advocacy to raise support for their community. Dawn Ireland, President and Founder of Congenital Diaphragmatic Hernia (CDH) International, shares how she launched the first CDH organization from her living room over twenty years ago, their ongoing successes, and the road ahead. Plus, parents Zach and Shelby Gallegos share the story of their nearly one-year-old daughter, Reagan, who is a CDH survivor. They give listeners a glimpse into their lives and the challenges of this rare birth defect. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Dawn Ireland, Founder and President, CDH InternationalZach and Shelby Gallegos, Parents to ReaganStephanie Tomlinson, patient correspondentLinks:Statement: Build Back Better Offers No Guarantee to Lower Patient CostsWatch: President Biden Delivers Remarks on the Cost of Prescription DrugsDocuments Reveal the Secrecy of America’s Drug Pricing MatrixWatch: Biosimilar Discussion LabNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Dec 10 2021
41 mins
Build Back Better + Chronic Illness
The Senate faces a race to the end of the year with a mountain of healthcare policies on its plate. Taking center stage is the House’s version of the Build Back Better plan. But it’s likely to undergo several changes, all of which will impact the chronic disease community. Hosts Terry and Dr. Bob break down the legislative process ahead. Specifically, three key healthcare provisions at risk in the Senate: price caps, transparency rules for pharmacy benefit managers, and the $35 monthly insulin price cap. Plus, still deciding on a health plan? Legal expert Monica Bryant of Triage Cancer delivers her tips for open enrollment season. Learn what to look for in a health plan and how to use it effectively. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Monica Bryant, COO, Triage CancerGay Grossman, Patient CorrespondentLinks:Squawk Box: Scott GottliebModerna CEO says it will take months to clear a new Covid vaccine targeting omicronPerspective: We don’t need universal booster shots. We need to reach the unvaccinated. Senate Parliamentarian could further narrow Democrats’ Build Back Better billLetter: AHA urges Congress to provide relief from forthcoming Medicare sequester cutsNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Dec 3 2021
36 mins
Holiday Special: How to Design Better Health Insurance
Half of individuals with health insurance are covered by their employer. If you are in this group, this episode is a must-listen. Learn how benefit design impacts your out-of-pocket expenses, your in-network providers, and the care available to you.Host Terry Wilcox is solo this Thanksgiving week, and brings listeners a feature interview with Dave Chase of the Health Rosetta. Together, they explore how to transition high-cost benefit design into transparent, affordable, and accessible healthcare. Plus, how to bring employers into these key healthcare conversations.Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Dave Chase, Creator, Health RosettaLinks:Tedx Talks: Healthcare Stole the American Dream - Here’s How We Take it BackUnderstanding LOCALNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Nov 23 2021
30 mins
Antibiotics: What You Need to Know
Cold and flu season is here. If you are immunocompromised, respiratory infections pose an even greater risk. Antibiotics are a common go-to solution, but there’s a catch: the more we use them, the less effective they become.Dr. John Rex of AMR.Solutions explains antimicrobial resistance, and why we should view these drugs as fire extinguishers. Plus, how the PASTEUR Act can bolster research and development of antimicrobials. And hear from cystic fibrosis patient advocate Ella Balasa on how antibiotics impact her health. She shares her healthcare journey and why it’s critical that antibiotics are used carefully to ensure they’re effective for those most vulnerable. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:John Rex, MD, Editor-In-Chief, AMR.SolutionsElla Balasa, Cystic Fibrosis Advocate Desiree Rubio, Patient Correspondent Links:Biden nominates Califf as FDA chiefHow Democrats’ Build Back Better Plan Would Spike Seniors’ Drug CostsPASTEUR ActNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Nov 19 2021
37 mins
Red, White, and Vet Health
This Veteran’s Day, hosts Terry and Dr. Bob explore potential federal policies to improve healthcare for U.S. veterans. Congresswoman Nancy Mace (SC-01) serves on the Veterans Affairs Committee and she joins the show to share what Congress can do to improve veteran healthcare. As the daughter of a retired Army General, it’s a personal issue. Plus, Kate Pecora speaks with Air Force veteran Eric Koleda about a growing health issue among veterans: traumatic brain injuries. He shares the work his organization TreatNOW is doing to connect veterans with hyperbaric oxygen therapy to heal brain wounds, and the legislative efforts to increase access to this care. And after a busy week in Washington, Terry and Dr. Bob get to the core of what patients and caregivers should know. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Congresswoman Nancy Mace, Representative, South Carolina District 1 Eric Koleda, Director of State Legislative Efforts, TreatNOW CoalitionWanda Green, Patient Correspondent Links:No Surprises Act LetterThe Mission Act is supposed to help US veterans get health care outside the VA. For some, it’s not working. Book: In the Company of Men: A Woman at the CitadelNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Nov 12 2021
34 mins
Patient Advocacy Day on Capitol Hill
Hosts Terry and Dr. Bob catch up with patient advocates following their virtual meetings on Capitol Hill. Patients Rising Now Patient Advocacy Day, held at the end of October, had patients and caregivers sharing their healthcare stories and asking for support on important bills to improve access and affordability to care, like the Safe Step Act and more. Plus, a new report on myasthenia gravis therapies raises red flags. Health economist Dr. Paul Langley examines the latest report from the Institute for Clinical and Economic Review (ICER), and explains why it could hinder patient access to important myasthenia gravis therapies. And if you’re confused by Medicare, don’t worry! Legal expert Monica Bryant of Triage Cancer breaks down all the different kinds of Medicare, and what patients should know when choosing a plan. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Maria Gmitro, President, Community Outreach and Patient Advocacy Director,  TrackMy SolutionsChristine Von Raesfeld, Founder/CEO, People with EmpathyJohn Linnel, State Captain, COPD FoundationNisha Trivedi, Rare Disease AdvocatePaul Langley, Ph.D., Lead Researcher, Patient Access and Affordability ProjectMonica Bryant, COO, Triage CancerLinks:Safe Step ActImproving Seniors’ Timely Access to Care Act BENEFIT Act Worksheet: Medicare Plan Options Comparison Health Insurance Laws by StateNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Nov 5 2021
40 mins
Biomarker Testing for Better Treatments
No two patients are the same, so often care teams can’t predict a treatment outcome from one patient to the next. That’s where biomarker testing comes in: the first step in personalized medicine. Biomarker tests help physicians identify specific treatment options a patient will respond to best based on biologic factors. The problem?  The testing isn’t accessible for all patients. Hilary Gee Goeckner of the American Cancer Society Cancer Action Network shares why biomarker testing is so critical, the health equity implications, and how to expand access through policy. Plus, Alecia Mandal shares how biomarker testing allowed her to receive immunotherapy for her colorectal cancer, which she credits to her current health. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Hilary Gee Goeckner, Senior State and Local Campaigns Manager - Medicaid, American Cancer Society Cancer Action NetworkAlecia Mandal, colorectal cancer advocateMelissa Strader, Patient CorrespondentLinks:FDA approves Cyltezo as first interchangeable biosimilar for inflammatory diseaseShare Your Story About Precision Medicine and Biomarker TestingState Policy Principles to Support Access to Biomarker TestingNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Oct 29 2021
34 mins
The False Promise of Current Drug Pricing Reforms
Congress promises to lower drug prices. But patients won’t see any cost savings at the pharmacy counter.We sort through the facts and myths of drug pricing, how “middlemen” in the supply chain lead to higher costs and real solutions to lowering out-of-pocket costs for patients. Clinical pharmacist and health economist Dr. Robert Popovian dives into the complicated world of drug pricing and simply explains how it impacts patients' health and pockets.As part of Breast Cancer Awareness month, metastatic breast cancer patient Pam Kohl shares her healthcare journey and what patients should know about the risks of extravasation during scans and treatments. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Robert Popovian, PharmD, Chief Science Policy Officer, Global Healthy Living FoundationPam Kohl, metastatic breast cancer patient and advocateKathi Luis, Special Projects Director, Amyloidosis Foundation, patient correspondentLinks:Biden eyeing FDA veteran Robert Califf to lead the agencyFrancis Collins to step down as director of the National Institutes of HealthJ&J recipients should ‘feel good’ about booster dose recommendation: FauciFlow of Money Through the Pharmaceutical Distribution SystemGross-to-Net Bubble Update: Net Prices Drop (Again) at Six Top DrugmakersNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Oct 22 2021
38 mins
Chronic Disease + the Next Pandemic with Scott Gottlieb
COVID-19 continues to put the most vulnerable at risk, including the elderly and those with chronic illnesses. At its peak, it filled up hospitals and forced those seeking non-COVID care to postpone critical appointments. To protect patients and caregivers from the next pandemic, the government needs to adapt, change, and prepare.Former FDA Commissioner Dr. Scott Gottlieb shares where the government response failed, how to address pandemic preparedness through a national security lens, and ways to bolster the research and development of therapeutics. Plus, field correspondent Kate brings us part two of her conversation with Dorothea Lantz on her son’s diagnosis of Prader-Willi Syndrome and the impact of growth hormones on his life. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Scott Gottlieb, MD, Former FDA Commissioner Dorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome AssociationMaggie Senese, Patient CorrespondentLinks:New Legislation Aims to Eliminate Some Prior Authorization BurdensWHO recommends groundbreaking malaria vaccine for children at riskPfizer officially asks the FDA to authorize its COVID vaccine for kids aged 5-11BOOK: Uncontrolled Spread: Why COVID-19 Crushed Us and How We Can Defeat the Next PandemicNORD Statement on Proposed Changes to the Orphan Drug Tax CreditImpact of the Orphan Drug Tax Credit on treatments for rare diseasesPWSA: Save the Orphan Drug Tax CreditPSWA: The Benefit ActNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Oct 15 2021
37 mins
Congress + the Debate Right Now Over the Cures of Tomorrow
Patients depend on the research and development cycle to produce innovative, life saving medicines for rare and chronic conditions. But this medical innovation faces hurdles if Congress passes medicare price negotiations within the Build Back Better Plan. Terry and Dr. Bob look at what this means for small, biotech companies creating the cures of tomorrow. And if you’re confused about drug development and pricing, Dr. Ron Cohen of Acorda Therapeutics breaks down the process and what it means for patients. Plus, get the patient perspective on the importance of rare disease research. Dorothea Lantz is the mom of Hunter, a 4-year old living with Prader-Willi syndrome. She explains why Congress must leave the Orphan Drug Tax Credit alone in order to protect the development of future treatments that could help patients like Hunter. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Ron Cohen, MD, Founder, President and CEO, Acorda TherapeuticsDorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome AssociationKatie Moureau, Patient CorrespondentNichole McLaud, Patient CorrespondentLinks:Democrats weigh health care provisions in $3.5 trillion billThe High Costs of Democrats’ prescription drug price-settingRep. Ayanna Pressley And Congressional Colleagues Unveil Bill to Support People Experiencing Hair LossMerck pill seen as ‘huge advance,’ raises hope of preventing COVID-19 deathsNORD Statement on Proposed Changes to the Orphan Drug Tax CreditNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Oct 8 2021
37 mins
Patient How-To Guide: Health Policy Advocacy
Numerous health policies are under debate in Congress. As Senators and Representatives hash out drug pricing legislation and more, where are patients in the conversation?Advocate and former Ohio state legislator Randi Clites shares how patients can get involved in policy advocacy. Plus, how the rise of Rare Disease Advisory Councils in state legislatures are giving patients a seat at the table.Terry and Dr. Bob deliver a healthcare policy crash course on this week in D.C., and Kate speaks with Jen Roman about her rare disease and mission to combat misconceptions about rare disease patients. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Randi Clites, Rare Disease Policy Director, Little Hercules Foundation Jen Roman, Rare Disease AdvocateShannon Sharp, Patient CorrespondentLinks:Senate passes infrastructure bill that restarts sequester cuts, delays rebate ruleNORD Statement on Proposed Changes to the Orphan Drug Tax CreditMedicaid Home and Community Based Services Congress Likely to Scale Back HCBS Funding as Part of Budget Compromise The High Costs of Democrats’ prescription drug price-settingRare Disease Advisory Councils by StateNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Oct 1 2021
37 mins
Biosimilars Can Lower Costs
As Congress continues to debate solutions to lower healthcare costs, biosimilars are a promising option. But uptake of biosimilars has been slow in the U.S., and few patients are seeing direct savings at the pharmacy counter.Brian Lehman, Director of Patient Advocacy at Sandoz, explains how biosimilars play a role in patient care and result in cost savings to the healthcare system. Mary Jo Carden, Head of Policy, lays out policy actions to boost biosimilar use. And while biosimilars might not be a good fit for all patients, Terry and Dr. Bob look at the ways these medications can improve patient access for many individuals. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Brian Lehman, Director, Patient Advocacy and Strategic Alliances, SandozMary Jo Carden, Head of Policy, SandozMonica Bryant, COO, Triage CancerDorothea Lantz, Patient CorrespondentLinks:The Role Biologics and Biosimilars Can Play in HealthcareBiosimilars: What is Interchangeability, Reference Product, and Why You Should CareU.S. FDA approves first biosimilar rival to Roche’s blockbuster eye drugTriage Cancer Estate Planning ResourcesState-Specific Estate Planning ToolkitIntroduction to Estate PlanningNORD Statement on Proposed Changes to the Orphan Drug Tax CreditNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Sep 24 2021
34 mins
Lawmakers and Chronic Disease Patients
President Biden outlines a new COVID-19 strategy, the U.S. Senate returns to Washington, and the House of Representatives debates prescription drug prices. Hosts Terry Wilcox and Dr. Bob Goldberg break down D.C.’s busy week and what chronic disease patients should be watching. Plus, many hospitals continue to operate at capacity. For those with chronic conditions or non-COVID related emergencies, getting seen by a doctor is a battle. Kate Pecora brings listeners through the halls of an overcrowded Boston hospital as she shares her story of trying to get care during the pandemic.Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Shivani Vyas, Host, The Rare Disorder PodcastDawn Ireland, Patient CorrespondentLinks:Alabama man Ray DeMonia dies after being turned away from 43 hospitals as covid packs ICUs, family saysPresident Biden delivers remarks on lowering prescription drug pricesPresident Biden’s Path Out of the PandemicPresiden Biden unveils plan to boost COVID vaccinations and fight Delta variantReps. Peters, Schrader Unveil Plan to Cut Patients’ Drug Costs & Preserve America’s Ability to Produce Live-Saving CuresNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Sep 17 2021
34 mins
Direct Primary Care: Can Subscription Models Save You Money?
Want greater access to your doctor at a lower price? It’s possible through direct primary care. This healthcare solution allows patients to develop personal relationships with their doctors and receive care quicker and cheaper. Three physicians weigh in on how direct primary care works and how it can help chronic disease patients receive timely, personalized care. Plus, guest host David Balat of the Texas Public Policy Foundation joins Terry Wilcox to discuss the healthcare needs of 9/11 first responders. Plus, the status of prescription drug legislation in Congress and what it means for patients. Hosts: Terry Wilcox, Executive Director, Patients RisingGuest Host: David Balat, Healthcare Policy Director, Texas Public Policy FoundationDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Peter Lazzopina, MD, Founder, FRONTIER Direct CareGeetinder Goyal, MD, Founder and CEO, First Primary CareCliff Porter, MD, PhD, Managing Partner and Founder, Texas Direct Medical CarePatricia Carroll, Patient CorrespondentLinks:The Mystery of 9/11 and DementiaWhat is Direct Primary Care?Free2CareFree2Care Annual ConferenceDrug ChannelsNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Sep 10 2021
33 mins
Ovarian Cancer: What Women Need Congress to Do
What can Congress do to aid in the fight against ovarian cancer? If reauthorized, Johanna’s Law would increase funding for ovarian cancer education and awareness programs. Ovarian Cancer Research Alliance’s VP of Policy, Chad Ramsey, explains how federal funding can reduce health disparities and improve outcomes. Plus, hear from ovarian cancer survivor Randalynn Vasel on her cancer journey. And Runsi Sen, founder of Ovarcome, shares the signs and symptoms of ovarian cancer that all women should know. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field Correspondent, Patients RisingGuests:Chad Ramsey, VP of Policy, Ovarian Cancer Research AllianceRandalynn Vasel, Co-Producer, Sips with SurvivorsRunsi Sen, Founder, OvarcomeLinks:Key Statistics for Ovarian CancerSupport Johanna’s LawOvarian Cancer Awareness Month ToolkitBiogen Offers Free Alzheimer’s Drug as Medicare Payment Uncertainty RemainsSuccessful Prescription Drug Discount Program Expands to Benefit More Consumers at Point-of-SaleNeed 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.orgHave 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: podcast@patientsrising.orgThe 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.
Sep 3 2021
41 mins

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