Patients Rising Podcast

This week's podcast is all about the QALY and the bill going to the Senate that would ban its use.  The QALY is a metric used to determine how cost-effective a treatment is based on its ability to return a sick person to perfect health. Even if a treatment helps a chronically ill person to live longer, it will not be categorized as valuable as treatments are aimed at diseases that affect younger and healthier populations.  To help us understand how the QALY negatively impacts those with chronic illness, we're joined by Michael Riotto, a member of Patients Rising, and Bill Smith, a Senior Fellow at the Pioneer Institute.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Treating obesity would cause chronic disease rates to go down, healthcare costs would be reduced, and the lifespan of Americans would increase. But until now, the stigmas relating to obesity have prevented any significant legislation that addresses the issue. To help break it down, we're joined by Nancy Glick, the Director of Food and Nutrition Policy at the National Consumers League. Nancy helps us understand what an Obesity Bill of Rights actually is, who it covers, and why it's a necessary step.  We also discuss a bill that Patients Rising has been trying to move forward for a long time. We got news this week that it finally has some life!    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

In an effort to curb drug prices, President Joe Biden announced late last year a proposed framework to guide government agencies on how to use march-in authorities if a drug's price is considered too high. But what exactly constitutes “too high?” Your guess is as good as ours, and that's just the beginning of the issues we expect to come from this framework if it moves forward. We spoke with Joe Allen, Executive Director of The Bayh-Dole Coalition.  The Bayh-Dole Act is where march-in rights stem from and we figured he would be the perfect person to explain march-in rights, what this really means, and how this framework could derail the entire drug development industry if this comes to pass.  You won't want to miss what he has to say. We also discuss the increasing prevalence of Prescription Drug Affordability Boards and what that might mean as we progress into the second month of 2024.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

As the 2024 election season starts to ramp up, we think that it's important that you know exactly where the presidential candidates stand on healthcare.  This week, we unpack what the major players in the presidential race have to say about their healthcare plans. We get into the nitty-gritty for the front runners of each party, covering Trump, Desantis, Haley, Stein, West, and Biden.  If we didn't talk about a candidate you're interested in, you can find their campaigns 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.   

This week, a Resource Coordinator and Patient Navigator with our Patient Helpline goes over the top four steps that patients and caregivers can take to make 2024 their smoothest and most organized healthcare year yet. From what to do in the months leading up to a visit to how to take control of your health on your own time, Levi Peterson shares everything patients and caregivers need to be prepared.  Also, applications for Patients Rising's Fly-In Scholarships for this year's event open this Wednesday, January 17th. Lastly, we discuss two major news stories from this past week including a report from HealthcareDive that HHS has named its first – “Chief Competition Officer” and a report from CNBC that Eli Lilly has a new website offering telehealth prescriptions and direct home delivery of certain drugs.    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.   

This week, we discuss the idea of “dual eligibles” with Steve Peskin, the CEO of SRP Advisors. Steve explains the difficulty for dual eligible patients in knowing what part of their healthcare is covered by Medicaid and what part is covered by Medicare. He mentions the need for coordination between state and federal government and shares a few ideas for how the current system can be improved. Also, we talk about an announcement by the Biden administration that the Administration for Strategic Preparedness and Response will incorporate fair-pricing provisions into contracts.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

One survey shows 77% of adults over 50 would prefer to grow older where they already live instead of moving to a home or an assisted living facility–but there are obstacles in place for those who want to stay in their homes.  This week, we talk about the current challenges of aging in place with Dan Weinrieb, the Head of Strategic Partnerships at Jukebox Health, a company dedicated to making aging at home a common-sense and cost-effective option for older adults. Dan says the issues relating to aging in place are known, but taking action to fix the problems is where our system falls short. He breaks down what these barriers are, and what will need to change if we want people to actually be able to grow older where they choose.  Also, we talk about a decision from the Colorado Prescription Drug Affordability Board to not place a price cap on a best-selling cystic fibrosis medication.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org  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.  

Last week, the White House announced it has plans to use the government's “March-in” rights on drugs developed with public funding.  This week, we're joined by our very own Executive Director here at Patients Rising, MacKay Jimeson. He explains why he and other experts believe this will not lower what patients pay at the counter for prescriptions, and actually could do much more damage by discouraging new treatment development, particularly for the rare disease patient community.  We also talk about the FDA approval of a powerful new tool that will treat sickle cell disease.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Is telehealth here to stay? That's the big question! Both providers and patients have benefited from the increase in telehealth practices born out of the COVID-19 pandemic. It has allowed high-risk patients to have access to their healthcare provider without having to risk going into a doctor's office, and providers say that telehealth has given them the opportunity to see the patient's environment and family, which allows them to take those factors into consideration when formulating a treatment plan. This week, were joined by Kyle Zebley, the Senior Vice President of Public Policy for the American Telemedicine Association. Kyle shares a policy update and what to expect for the future of telehealth.  Also, we discuss a potential merger between two major insurance players.    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

After being diagnosed with throat cancer, a top trial lawyer was told by his insurance that it wouldn't cover the treatment his doctor ordered because it wasn't “medically necessary.” Fortunately, he did what he does best, and fought back. This week, attorney and patient advocate Robert Salim, shares his story. He explains exactly how he took on his insurance provider, how he won, and what it means for other patients dealing with the same issue.  Plus, an update on open enrollment with new uptake numbers released by the Department of Health and Human Services.  Resources and previous episodes on open enrollment: Patients Rising Podcast: Open Enrollment Explained Patients Rising Podcast: Get Covered   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

It can be difficult to navigate the procedures and interactions that come with a hospital visit. However, knowing what to expect going in can help improve your experience. This week, we talk with hospitalist and author, Dr. Monique S. Nugent about how to physically and mentally prepare for hospital visits. Her new book, “Prescription for Admission: A Doctor's Guide for Navigating the Hospital, Advocating for Yourself, and Having a Better Hospitalization,” serves as a guide for patients who need help navigating the hospital. Also, we touch on a bill introduced in Congress that would help terminally ill patients get immediate access to benefits of the SSDI program. Hear from Congresswoman Diana Harshbarger from Tennessee who helped introduce the bill in an episode of the Healthcare Policy Pop.    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Taking care of and connecting with a loved one who is living with dementia is difficult, but it's also something that many people have to do. This week, we talk with Mary Anne Roberto and Debbie Axel, co-founders of Always Home Connected, a company that helps provide caregivers and families with more resources that encourage bonding. They walk us through why they started their company, the types of products they sell, and share the impact that they have made in the lives of caregivers and aging patients.  You can learn more about Always Home Connected 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.   

Everyone seems to be talking about Artificial Intelligence, and there have been questions about how it could benefit the healthcare industry--but what you might not know is that it's already being used in a number of ways. Luckily, this week we're joined by Naomi Lopez, the Founder of Nexus Policy Consulting, who has been working to help legislators understand AI. Naomi walks us through the ways that healthcare could continue to use AI to help patients and the industry as a whole.  Also, we touch on a potential bill that would help protect patients by reducing prescription drug costs and extending certain expiring provisions under Medicare and Medicaid.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

There's a new bill that could help many rare disease patients gaining traction, but it still has a long way to go. This week, we're joined by Peter Pitts, a Former FDA Associate Commissioner, who gives us the lowdown on the Promising Pathways Act. He tells us what types of diseases are likely to be affected by this bill, and why it will make a significant difference in the lives of patients.  We also speak with Senator Mike Braun of Indiana, who introduced the bill alongside other legislators of both parties.    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

This week we talk about a major victory for patients regarding Copay Assistance Programs. We're joined by one of the major players in the lawsuit that made it happen, George Huntley, the CEO of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition. He helps us break down why this was such a significant win for patients.  We also discuss the new Patients Rising working paper all about current formulary practices and how they're hurting patients..    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

As the popularity of weight-loss drugs continues to rise, the Congressional Budget Office is looking for new research on anti-obesity medications to see what the impacts could be. Ike Brannon, a Senior Fellow at the Jack Kemp Foundation, joins us to chat about the potential drugs, what they mean for Americans, and how it would impact the congressional budget. We also talk about a major Cigna settlement due to violations of the False Claims Act.    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 the Patient Helpline. 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: podcast@patientsrising.org 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.  

Open enrollment is officially here, so this week we do a deeper dive on everything that you need to know to help you choose the right plan. Samantha Sauer, the Director of the The Patient Helpline here at Patients Rising, helps us navigate the different types of Medicare, the options that come with employer or private insurance, and why patients with chronic illness should ask a few more questions. Also, we have an update on the Medicare price negotiation as part of the IRA.     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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Maternal mental health issues impact at least one in five of those pregnant or postpartum. This week, Adrienne Griffin, Executive Director of the Maternal Mental Health Leadership Alliance, discusses misconceptions about maternal mental health and resources available to pregnant and postpartum people. She also tells us what the Alliance is doing to transform the maternal mental health landscape.  Plus, Dr. Bob breaks down a significant win for patients with copay accumulator policies.   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

With the Open Enrollment Period fast approaching, Levi Peterson, a Resource Coordinator for our Patient Helpline walks us through what everyone needs to know about Medicaid and Medicare eligibility, PPOs and HMOs, and how to pick a health plan that best fits your needs. We also discuss a so-called ICER update that doesn't do much updating and still doesn't help patients. Patients Rising Now Statement | ICER ‘Updates' are Thinly Veiled Strategy to Continue Discriminatory Tactics  ICER's Updated Treatment Assessment Still Ignores Patient Concerns    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

It's clear that we need to fix the way we measure the value of new medicines. Current methods fail to account for the benefits to caregivers, the long-term savings from keeping a job or avoiding the hospital, and the countless scientific discoveries that a new drug can lead to. But there is a solution according to this week's guest, biotech investor Peter Kolchinsky. He talks about his new study that looks at innovative ways to assess the real value of medicine. Peter explains how insurers use cost-effective math to determine what drugs they will and won't cover, and alternative methods that take into account patient and caregiver needs. Plus, Terry and Bob discuss some must-pass healthcare bills for the chronic disease community. New Report: Getting the math right when measuring the value of new medicines Protect Medicare patients' right to get care at home | The Hill  Patients Rising Now Issues Must Pass for Patients List for Congress   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

With flu season fast approaching, Dr. Paul Offit joins us to discuss all of his vaccine recommendations, including COVID-19, RSV, and flu vaccines, population immunity, and targeting high-risk groups. Plus, Terry and Bob talk about why insurers are marking up the prices of generic drugs – which should be a cheaper option for patients.  Generic Drugs Should Be Cheap, but Insurers Are Charging Thousands of Dollars for Them  Medicare Part D: CMS Should Monitor Effects of Rebates on Plan Formularies and Beneficiary Spending | U.S. GAO    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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Hope can be powerful when receiving a diagnosis… but are we able to quantify just how powerful it really is? Carol Graham joins us to discuss how she believes the U.S. should be using “hope” as a measurement of both social and economic well-being. Plus, how hope and optimism can change outcomes for patients.  And Terry and Bob tell us about the lack of patient input as Medicare announces the first 10 drugs up for price negotiations.   The Power of Hope Stat News Article: Here are the 10 drugs that will be up first for Medicare price negotiation   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 the Patients Rising Helpline.   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: podcast@patientsrising.org   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.   

Mark King's advocacy journey began in the 1980s after he was diagnosed with HIV. Now, he's written a book that discusses his advocacy journey, the struggles of living with the disease, and the stigma that comes with it. Hear how he has coped over the years, and what he hopes for the next generation of advocates. And Terry and Bob discuss a few stories about the lack of transparency in insurance claim denials. Plus, a look ahead at potentially rising insurance premiums in 2024.  My Fabulous Disease Webpage My Fabulous Disease: Chronicles of a Gay Survivor Book Preorder ProPublica News Article: How Often Do Health Insurers Say No to Patients? No One Knows Kaiser Family Foundation News Article: An Early Look at What is Driving Health Costs in 2024 ACA Markets   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

For Neal Shah, life was going according to plan. Then suddenly, he became a caregiver overnight. Hear how his experience pushed him to create CareYaya, which he calls the “Uber of caregiving.” It's a matchmaking system that pairs pre-med college students with families in need of a caregiver to provide companionship and day-to-day support for a loved one. And Terry and Bob talk about real movement in Congress on the PBM issue. Is there any real hope for solutions? They discuss the nearly unanimous progression of one PBM bill. CareYaya Webpage N.C. caregiving business is growing to support seniors Washington Examiner News Article: Legislation cracking down on pharmaceutical middlemen advances in Senate Patients Rising Webpage: Patient Stories   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Investing in healthcare like we invest in curbing carbon emissions. It's a novel idea, but something that Dr. Andrea Feigl, the Founder and CEO of Health Finance Institute, says could change the future of health, specifically chronic disease management. And Terry and Bob discuss a brand new survey from Patients Rising that's all about patients and their ability to access naloxone at the pharmacy. What the survey says about stigma and access – all in today's episode. Patients Rising Webpage: Accessing Naloxone at your Local Pharmacy Health Finance Institute Rapport Article: Do we value curbing carbon emissions more than curing cancer? CNBC News Article: Sanofi expects infant RSV shot to roll out before respiratory virus season this fall Patient Access and Affordability Project Report: CMS vs FDA: How Medicare and Medicaid Coverage Decisions Limit Patient Access   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Mel Mann was diagnosed with a cancer known as CML and given three years to live. That was in 1995. Today, in 2023, Mel Mann is still living and still advocating – all thanks to accelerated approval and a clinical trial. Hear the story of how this Army vet, and longest-living Gleevec patient, beat the odds and stands here today. And Terry and Bob discuss the brand new accelerated approval report that Patients Rising released. Unprecedented coverage decisions from CMS, the history of accelerated approval, and why it's such an essential pathway for patients are all in today's episode. The Mel Mann Story: From Terminal Cancer to 28 Year Survivor (Long Version) Connect with Mel Mann on Twitter Patients Rising Now Accelerated Approval Report ADA Anniversary   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

What do patients really think about clinical trials? Do they trust them? Are they wary? Today's episode features Jim Sliney Jr., who breaks down a survey project from Patients Rising that determined some surprising results. We also speak with Myisha Malone-King, a patient advocate who was diagnosed with Crohn's disease over 14 years ago and who recently participated in a clinical trial. Hear why her relationship with her doctor was instrumental in her health. Patients Rising Survey: Attitudes about socialization, clinical trials, medication use & treatments in people of color & treatments in people of color with inflammatory bowel disease Axios News Article: Retailers seek to shake up clinical trials business Patients Rising Stories: Myisha Malone-King CNBC News: Dr. Scott Gottlieb on cancer drug shortage – This is a multi-decade problem Reuters News Article: Biden's junk fee crusade turns to short-term health insurance plans   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.

One mom's journey into patient advocacy started after two of her daughters were diagnosed with galactosemia, a rare disease. There's finally a potential new treatment for this condition, which families say has helped their children who have participated in the clinical trial. But they're worried their voices are being ignored.  Jodie Solari, Communications Lead for the Galactosemia Foundation shares how the diagnosis changed her life into a life of advocacy, and why she's pushing for the voices of families like hers to be considered when reviewing new treatments.  Galactosemia Foundation Webpage Glactosemia Foundation Webpage: Advocating for a Treatment Voice of the Patient Report: Galactosemia Fierce Healthcare News Article: Another PBM reform bill has been introduced in Congress. Here's what it includes Patients Rising Now Webpage: Ask Your Representative to Support the Protecting Patients from PBM Abuses Act Protecting Patients Against PBM Abuses Act 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.

This week's episode dives into the concept of running a clinical trial before ever running a clinical trial. How is that possible? It's an idea called digital twins & we have an expert interview to break it down.   Colin Hill, CEO and Co-Founder of Aitia shares how this AI-powered approach can make drug testing and discovery more efficient for diseases like Alzheimer's, Parkinson's, and more.  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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.   

The first episode featuring our Health Plan Heroes was so good – we decided to do a second one. Listen now to see how these businesses have reinvented their health plans to provide top-tier coverage at a fraction of the cost.  Plus, did you miss this year's Fly-In or just want to get a jump on next year's? Registration is already open for the 2024 event.  We The Patients Fly-In 2024 Registration Webpage Health Plan Hero Webpage CNN News Article: FDA-approved Alzheimer's drugs will be covered by Medicare, with some limitations, CMS says Healthcare Policy Pop Episode: CMS Alzheimer's Decisions + No Data   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.

It's here! The 2023 We the Patients Fly-In is THIS WEEK and we have several Health Plan Hero Winners on the podcast to discuss their health insurance success stories as they get ready to accept their awards in person in Washington D.C. Plus, Terry and Bob lay out all the policy priorities patients will be advocating for on Capitol Hill during the Fly-In, including reforms to PBMs, copay accumulator programs, and the QALY metric.  Meet the 2023 Health Plan Hero Winners 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

RSV immunizations for infants are on the way, but still have a large hurdle to clear. Ronda Miller-Ernest, a pediatric nurse practitioner with more than 30 years of experience, joins us to discuss the dangers of RSV, her personal experience, and why it's important that future immunizations are available through the Vaccine for Children Program. Plus, Terry and Bob dive into the healthcare news of the week, including an article from Kaiser Health News about the weird denials by insurance. CDC Webpage: ACIP Work Groups Submit Your Comments! Advisory Committee on Immunization Practices NBC News Article: FDA approves world's first RSV vaccine, a shot for adults ages 60 and up Kaiser Health News: Denials of Health Insurance Claims Are Rising — And Getting Weirder UHC Prior Authorization Update: UnitedHealth backs off contentious prior authorization plan 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

UnitedHealthcare makes a confounding decision that could affect countless patients starting June 1st. Gastroenterologist Dr. Bruce Hennessy joins us to discuss how new prior authorizations for colonoscopies and other screenings could delay cancer diagnosis and subsequent care. Plus, Terry and Bob dive into the healthcare news of the week, including the FTC expanding their investigation into healthcare middlemen: GPOs and PBMs.  STAT News Article: ‘Stunning' change to United's colonoscopy coverage roils physicians and patients Fierce Healthcare News Article: FTC expands probe into pharmacy benefit managers to GPOs UHC Letter Healthcare Policy Pop Episode: Crises in Drug Shortages + Medical Supplies  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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

C. diff, an infectious disease can be deadly for many – but especially those with compromised immune systems. We speak with a member of the Patients Rising team about their run-ins with the disease and learn how you can best protect yourself. And Terry and Bob dive into the healthcare news of the week, including an article written by Bob himself with a timely metaphor for moving medicine forward. Understanding Your Risk for C. diff Infection Don't forget to register for the 2023 We the Patients Fly-In! Ad: Better For Middlemen Rapport Policy Article: Do we value curbing carbon emissions more than curing cancer? 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

May marks National Stroke Awareness Month and this week we're speaking with a stroke survivor who wants to make sure if a stroke ever happens to you – you'll know all the signs. Hear Stacy Quinn's personal story and how delaying care almost cost her everything. And Terry and Bob dive into the healthcare news of the week, including FDA approval of the first-ever RSV vaccine, decades in the making. Don't forget to register for the 2023 We the Patients Fly-In! My Stroke of Hope Webpage Patient Impact Report: Copay Accumulators Patient Impact Report: PBMs CNN Health News Article: FDA approves first vaccine for RSV, a moment six decades in the making 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Another week, another middleman making it harder for patients to get the care that they need. This week, we learn more about Group Purchasing Organizations – also known as GPOs – and how they cause drug and supply shortages across the spectrum of care. And Terry and Bob dive into the healthcare news of the week, including an opinion piece in The Wall Street Journal that details a decision by the Federal Trade Commission which could end up restricting care for patients. Don't forget to register for the 2023 We the Patients Fly-In! Dr. Nikki Johnson Group Purchasing Organizations Impact Access to Medications, Increase Drug Shortages Medical Middlemen: Broken system making it harder for hospitals and patients to get some life-saving drugs Free2Care's Rx for Reforming America's Predatory Healthcare System Patient Impact Report: Copay Accumulators Patient Impact Report: PBMs Watch! Always on Call   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.

So often on the Patients Rising Podcast, we discuss the affordability of healthcare. This week, guest Peter Kolchinsky outlines how thinking of paying for medicines like paying for a house mortgage leads to lower costs for patients, and encourages investment in the cures of tomorrow.  Plus, Terry and Bob look at the latest healthcare headlines, including a promising framework for a PBM bill to address interactions between PBMs and federal health programs. Don't forget to register for the 2023 We the Patients Fly-In! The Great American Drug Deal Senate Finance Committee News Release: Crapo, Wyden Release Legislative Framework to Address PBMs, Prescription Drug Supply Chain   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

For many patients living with chronic illness the idea of “fundraising” isn't just a child's bakesale to pay for a field trip, it's a necessity to pay for life-saving treatment. On this week's podcast we speak with Sonny Mullen, Director of Outreach at Help Hope Live, an organization that has been raising money to cover medical expenses since 1983. She explains the unique aspects of fundraising for medical care and what patients should consider.  And Terry and Bob dive into the latest healthcare headlines, including discussion of Prescription Drug Affordability Boards being implemented across the country. The name sounds good, but do they do what they say? Don't forget to register for the 2023 We the Patients Fly-In! Gallup News Article: Record High in U.S. Put Off Medical Care Due to Cost in 2022 The Washington Post News Article: Need a new drug? You may be asked to ‘fail' an old drug first Colorado Politics Opinion: Consider rare diseases with Rx affordability board | OPINION   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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

AI is having its moment in all industries, including healthcare. In this episode, hear how AI-driven tools can help oncologists treat patients. Navid Alipour, CEO of CureMatch, talks about the role of AI in care and how it helps doctors do their jobs.  And Terry and Bob dive into the latest healthcare headlines, including Mark Cuban's Cost Plus Drugs' expansion into brand name medications, how a MedPAC decision could threaten patient access to Part B accelerated approval drugs, and ProPublica's report on insurance claims being denied without being read.  Don't forget to register for the 2023 We the Patients Fly-In! Additional Links: Wendell Potter 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

The ability to catch cancer early on can greatly improve a patient's outcome. But most cancers don't have a traditional, routine screening. That means many patients may have cancer but not show symptoms until the disease progresses. By then, treatment options may be limited.  To spot cancer earlier, GRAIL has developed a blood test that screens for over 50 cancers. Chief Medical Officer and oncologist Dr. Jeffrey Venstrom explains how this early screening can help oncologists better treat patients and improve health outcomes for patients.  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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Mystery healthcare prices leave patients in the dark. But thanks to hospital and insurer price transparency rules, those costs are being made public. The catch? The files that contain those prices aren't easy for consumers to read. Health tech companies have stepped up to decipher these files and make it easier for patients to shop for care. Mark Galvin, President and CEO of TALON, shares how equipping patients with upfront prices can help them find healthcare at a price they can afford. Plus, Terry and Dr. Bob discuss the latest on accelerated approval, prior authorization, and more.  Links The Cold War at HHS 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Get a look at the behind-the-scenes math that often determines whether or not insurance will cover the costs of treatments. Health technology assessments attempt to determine the value of a new treatment. But not all of these equations take into account patient voices, experiences, and needs. That includes the QALY - a discriminatory health care metric that's come under fire. But if it's banned, what replaces it? Economists Dr. Neal Masia and Dr. Darius Lakdawalla of EntityRisk explain a new model that takes into account patient needs when calculating the value of a treatment.  You can share your support for banning discriminatory metrics like the QALY here.  Plus, learn about the BENEFIT Act, and how it would inject more patient data into FDA approval process.  Links Patient Access and Affordability Project: Health Technology Assessment Best Practices for Rare Disease Drugs 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 the Patients Rising Helpline. 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: podcast@patientsrising.org 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.  

Lack of transportation is one of the biggest barriers to patient care. But when employers cover transportation for patients, it can lead to better health outcomes and lower overall costs. Casey Billington of Concierge Nurse Navigators explains why employers need to incorporate transportation into their health plan benefits so that patients can travel to doctor appointments or get an important second opinion.And co-hosts Terry and Bob talk about the latest news from Washington, D.C., including the VA's decision to cover a new Alzheimer's treatment for veterans. Plus, a new bill in Congress, the HELP Copays Act, would prevent insurers from “double-dipping” into patient savings. Write to your representative to support this bill 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 the Patients Rising Helpline.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: 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers. 

Vertical integration in the vision insurance market has led to higher costs and fewer options for patients. Two optometrists, Dr. Ron Benner and Dr. Bill Reynolds, explain how this impacts the price of your glasses, and how the DOC Access Act could fix this problem. And Terry and Bob break down a new poll that shows consumers support FDA regulation of repairs to medical devices. LinksWATCH: Stop Vision Benefit Manager AbusesREAD: Legislative Solutions to Overpriced EyeglassesNeed 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 the Patients Rising Helpline.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: 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers.

The Patients Rising Podcast has moved to Monday mornings! In this episode, hear how Florida is poised to take on PBMs, the pharmaceutical middlemen, and how potential reforms would help patients access affordable medications. Jared Willis gives his updates from the Sunshine State. And a shortage of kidneys available for transplants has patient advocates sounding the alarm. Co-hosts Terry Wilcox and Bob Goldberg talk about the crisis facing patients with end-stage renal disease. Plus, a story of rare disease advocacy in the MLB. 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 the Patients Rising Helpline.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: 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers.

Ahead of Rare Disease Day, Congresswoman Cathy McMorris Rodgers (WA-05) joins the podcast to discuss new legislation that would ban the use of a discriminatory health care metric, quality adjusted life year, or QALY. Learn how the QALY hurts treatment access for patients with rare diseases and disabilities, and how a government ban on QALYs would create more equitable access to care. Plus, hear from Jean Baker, who shares her challenges getting coverage for her husband's rare form of cancer, anaplastic thyroid cancer. And our patient correspondents from the rare disease community talk about the health care issues that impact them. This is also our last Friday episode of the Patients Rising Podcast! You'll be able to catch the Patients Rising Podcast on Mondays, starting March 6th, in a brand new format. Hosts: Terry Wilcox, CEO, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Congresswoman Cathy McMorris Rodgers, Chair, House Energy and Commerce CommitteeJean Baker, Rare Disease Caregiver and Anaplastic Thyroid Cancer AdvocateMaggie Senese, Patient CorrespondentKaitlyn Trevathan, Patient CorrespondentTomisa Starr, Patient CorrespondentAvery Roberts and Kelly Berger, Patient CorrespondentLinks: Chairs Rodgers, Smith, and Reps. Burgess, Wenstrup Introduce Legislation to Ban QALYsContact your Representative and Urge Them to Ban the QALYRare Disease Day February 28, 2023 Health Technology Assessment Best Practices for Rare Disease DrugsNeed 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers.

Current barriers to clinical trial access make it difficult for patients from underserved communities to access cutting edge care. Those barriers include restrictive eligibility criteria, which can lead to an underrepresentation of racial and ethnic minorities in clinical trials. Lucile Adams-Campbell, Ph.D., breaks down those barriers and outlines solutions to improve diversity in clinical trials and to ensure that participants receive continued care post-trial. Plus, hear from Sandra Washington, a board-certified patient advocate who shares why she fights for health equity and advocates on behalf of all patients. Hosts: Terry Wilcox, CEO, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Lucile Adams-Campbell, PhD,Sandra Washington, Managing Owner, Medi-Helpz LLCChi Chi Nnoli, Patient CorrespondentLinks: Layoffs and Shutdowns Hit Biotech Industry in U-TurnPersonal Health Journal and Planner Sandra Washington's Black History Month SeriesNeed 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers. 

Stephen Kay took a job 10 hours away from his wife. Why? Because he needed insurance that would cover the costs of her multiple sclerosis care. While she had Medicare before turning 65, she was unable to purchase a supplemental plan, or Medigap plan, to cover her major costs. This is a reality facing numerous patients who live with disabilities, including ALS and End-Stage Renal Disease. Melanie Lendnal of the ALS Association explains that while patients with disabilities can receive Medicare before the age of 65, they often can't access the supplemental plans they need. Learn about how legislation at the state and federal levels could close this gap for patients. Hosts: Terry Wilcox, CEO, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Melanie Lendnal, Senior Vice President of Advocacy, ALS AssociationStephen KayKatie Coughlin, Patient Correspondent Links: North Platte couple urges state to close gap in Medicare coverage for disabledMedicare Information | ALS AssociationNeed 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers. 

Over the past 30 years, cancer death rates have declined by 33%. Ahead of World Cancer Day, hematologist Dr. Rafael Fonseca joins the podcast to talk about the latest innovations and improvements in cancer care delivery that have contributed to this decline.Plus, many patients with chronic diseases depend on employer-sponsored health plans. But losing a job and the health insurance that comes with it can leave patients scrambling for a plan that doesn't interrupt their care. Montana Kirby shares her experience with this situation, what to know about COBRA health plans, and her advice for patients who may find themselves in a similar scenario.Hosts: Terry Wilcox, CEO, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Rafael Fonseca, MD, Chief Innovation Officer, Mayo Clinic in ArizonaMontana Kirby, Patient AdvocateSherri Gorbett, Patient CorrespondentLinks: States jump into fight over prior authorization requirementsWhen Prior Authorization Practices Go Too FarUS cancer death rates falls 33% since 1991, partly due to advances in treatment, early detection and less smoking, report saysWhat young adults need to know about health insurance enrollmentNeed 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers. 

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 advice to fellow parents who live with a chronic illness. Hosts: Terry Wilcox, CEO, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Robert Popovian, PharmD, Chief Science Policy Officer, Global Healthy Living FoundationWayne Winegarden, PhD, Senior Fellow and Director of Medical Economics, Pacific Research InstitutePeter Pitts, President, Center for Medicine in the Public InterestVickie Wilkerson, Patient AdvocateSameer Awsare, MD, Executive Director, The Permanente Medical GroupBrandi Privitera, Founder, BeingFibroMom.comKristy Birchard, Patient CorrespondentLinks: Special Report: The Biosimilars Market in 2023: Important Trends and Milestones for Chronic Disease PatientsShare Your Health Care Story in the Patients Rising Now StorybookRecord High in U.S. Put off Medical Care Due to Cost in 2022Connect with BeingFibroMom on Facebook, Twitter, Instagram, and LinkedInNeed 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers.

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 RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestGuests:Jon Deuser, CEO, The Smith-Free Group LLCMichael Gaffin, Senior Vice President, The Smith-Free Group LLCRachael Novick, patient advocateJean Baker, patient correspondent Links: US cancer death rates fall 33% since 1991Need 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, nor do the views and opinions stated on this show reflect the opinions of a guest's current or previous employers.