The State of Health is the podcast where patients put healthcare decision makers, thought leaders, and policy makers in the hot seat.Hosted by Gunnar Esiason, a patient advocate living with cystic fibrosis, The State of Health gives listeners a front row seat to patient advocacy. Gunnar's three decades of surviving inside the American healthcare system has given him a front row seat to the complexities that make health care delivery so challenging. The State of Health will unravel these comp ...
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A dynamic podcast exploring the different experiences people with cystic fibrosis may face during their lives. Gunnar Esiason joins Tiffany Rich and Lea Faraone, otherwise known as the Salty Cysters, to talk about the in's and out's of cystic fibrosis from some of the anxieties and stresses that patients face to some of the lighter sides of the disease. Breathe In: A Cystic Fibrosis Podcast aims to characterize the disease in a positive way while showcasing the challenges that people with cy ...
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Episode 22: Pharmacy Benefit Managers (PBMs) and Their Hidden Role in Drug Pricing
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Today on the show we take a look at the shadow world where pharmacy benefit managers or PBM’s operate to influence drug prices. Joining us is Antonio Ciaccia, the CEO of 46Brooklyn Research, an Ohio non-profit corporation whose purpose is to improve the accessibility and usability of U.S. drug pricing data. PBMs are a meaningful part of the US drug…
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Episode 21: Antibiotic Resistance: How CARB-X Helps New Companies Get a Running Start
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Kevin Outterson, the Executive Director of Boston-based CARB-X, a global non-profit partnership dedicated to accelerating antibacterial research to tackle the global rising threat of drug-resistant bacteria, joins the podcast to talk with Gunnar about the early-stage landscape for biotechnology companies developing novel antibiotics. Unlike the AMR…
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Episode 20: Antibiotic Resistance: Bacteriophages, a Possible Answer?
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The antibiotic resistance series on the State of Health has discussed, at length, the policy and market dysfunctions at the heart of the antibiotic crisis. This week, Gunnar talks with Dr. Ben Chan, an Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, and Ella Balasa, a cystic fibrosis patient ad…
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Episode 19: Antibiotic Resistance: PASTEUR Act with Senator Michael Bennet
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Senator Michael Bennet, a co-sponsor of the bipartisan PASTEUR Act, joins Gunnar on the State of Health to talk about his proposed legislation to correct the dysfunctional antibiotic market. Senator Bennet makes his pitch for why he believes people should care about antibiotic resistance, talks about how the PASTEUR Act can become law, and shares h…
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Episode 18: Antibiotic Resistance: Investing in the Next Generation of Antibiotics
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The State of Health continues the Antibiotic Resistance series with an episode featuring Henry Skinner, the CEO of the AMR Action Fund, a novel kind of investment fund that aims to catalyze the innovation ecosystem for novel antibiotics. Gunnar and Henry talk about the challenges of bringing new antibiotics to market, the difference between the AMR…
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Episode 17: Antibiotic Resistance: PASTEUR Act with Senator Todd Young
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Senator Todd Young from Indiana joins the podcast to talk about the PASTEUR Act, a bipartisan piece of legislation that he is co-sponsoring with Senator Michael Bennet that aims to reform the way novel antibiotics are paid for in the United States. Unlike most prescription drugs, antibiotics are unique in that they lose their efficacy over time tha…
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Episode 16: Antibiotic Resistance: The Patient Experience
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The State of Health is back after a brief summer vacation. This week, Emma D'Agostino, PhD joins the show to talk with Gunnar about their jointly written opinion piece that appeared in The Hill in mid-August entitled: New bipartisan legislation can encourage needed antibiotic development, where they called for bipartisan reform of the antibiotic ma…
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Episode 15: Immunocompromised Transplant Patients Return to Vaccine Clinics for Booster Shots
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Katy Monte, an immunocompromised woman who has received three transplants as a result of her end-stage cystic fibrosis, talks to Gunnar about getting a third COVID-19 vaccine after the FDA recommended booster shots for people who may not have developed antibodies after the initial doses. She explains the conversations she had with her care teams, h…
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Episode 14: Huntington's Disease and Patient Advocacy with Seth Rotberg
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Seth Rotberg joins the podcast to talk through the in's and out's of patient advocacy, the patient's role in drug development, and how patients can work with regulators to make sure the best possible medications reach approval. Since Gunnar considers himself a patient advocate, too, they are able to talk about their frustrations with the role, but …
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Episode 13: Three Questions with Utah Governor Spencer Cox
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In the end of summer 2020, Gunnar sat down to talk with then Lieutenant Governor Spencer Cox about the policymaker's connection with cystic fibrosis and the state's evolving response to COVID-19. Gunnar also solicits a question from a Utahan living with cystic fibrosis for the then Lieutenant Governor to answer. Gunnar talks about the need for soci…
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Episode 12: The Future of the Drug Industry
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Dr. Bill Smith, a visiting fellow in the life sciences at the Boston-based think tank, Pioneer Institute, and former drug industry veteran, joins the State of Health to talk about the evolving market dynamics in the drug industry starting with the Orphan Drug Act and the industry's rush into therapeutic development for rare diseases. In this episod…
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Episode 11: Three Questions with Governor Mike Dunleavy (Alaska)
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In this Three Questions episode where the role of the interviewer flips halfway through the show, Gunnar and Alaska Governor, Mike Dunleavy, talk about Alaska's early success with the state's vaccination campaign, the state's integrated health system and how Alaska's reliance on telehealth could be a playbook for other states as they look to normal…
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Episode 10: Drug Access in Canada with Chris MacLeod
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Chris MacLeod is a Canadian living with cystic fibrosis and practicing attorney, who has been a fierce advocate for patients who need access to life-sustaining medications or treatments. He founded the not-for-profit organization Canadian Cystic Fibrosis Treatment Society to assist in carrying out this work. He also recently released a book entitle…
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Episode 9: Turning Hope into Action with Dr. David Fajgenbaum and the Castleman Disease Collaborative Network
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Dr. David Fajgenbaum joins Gunnar on the podcast to talk about his New York Times Bestselling book, "Chasing My Cure: A Doctor’s Race to Turn Hope Into Action" and his journey from division 1 college football quarterback and medical student to a rare disease patient up against the clock to find a treatment for his suddenly diagnosed Castleman Disea…
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Episode 8: Drug Pricing, Valuing Innovation and No Patient Left Behind with Peter Kolchinsky
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Biotechnology investor, Peter Kolchinsky, joins the State of Health to talk with Gunnar about drug pricing. The conversation covers the long term view that when drugs go generic without undue delay, the value they provide to society is far greater than the short-run value that cost effectiveness analyses often show, which Peter details in his book,…
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Liz Salmi, a self-described "former punk rock drummer turned cancer patient, and now senior research strategist," joins the show to paint a successful case study of joint-patient, physician, and researcher advocacy. She tells the story about the data-driven and evidence-based case for "open progress notes" and the impact they can have on patient ca…
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Episode 6: Ask Patients! Jen Horonjeff and the Savvy Co-op
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Patient engagement is more than a buzzword for career and lifelong patients. The lived experience of chronic disease holds tangible value that is often exploited under the guise of altruism. What if patients could capture some of the value generated by the healthcare delivery system and industry? The State of Health welcomes one entrepreneur who is…
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Episode 5: Three Questions with Bob Coughlin from MassBio
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Gunnar Esiason and Bob Coughlin, the former CEO of MassBio, talk about the state of the biotechnology industry in the background of the COVID-19 pandemic. Bob shares why the biotechnology trade association is important for biotech companies in Massachusetts, before getting into the industry's reputation and how he thinks the pandemic will impact th…
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Episode 4: Carmela Coyle and the California Hospital Association
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Carmela Coyle, the President and CEO of the California Hospital Association joins Gunnar to talk about the state of hospitals in California. In this deep dive interview, Gunnar wants to how how the hospitals of tomorrow will be shaped by today's pandemic and if the hospital industry sees telehealth as a competitor in care delivery. Gunnar challenge…
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Episode 3: Three Questions with Governor Mike Parson (MO)
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Governor Mike Parson from Missouri joined Gunnar Esiason for a three questions chat where they talked health policy and rare diseases in Missouri. Gunnar shares a personal connection to St. Louis University School of Medicine, and then asks the Governor how the state is managing care for people with rare and complex diseases while hospitals stress …
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Episode 2: Lindsey Leininger, Dear Pandemic, and The Fight Against Misinformation
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Lindsey Leininger, the nerdy-Girl-in-Chief, at Dear Pandemic, a website where bona fide nerdy girls post real info on COVID-19, joins the show to talk about the state of the pandemic, lessons learned, how data should be used to inform public policy and how she fights back against misinformation. She is a public health scientist who teaches and writ…
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Episode 1: Three Questions with Governor Phil Murphy (NJ)
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Gunnar and New Jersey Governor Phil Murphy do a three questions style interview where the role of the interviewer flips halfway through the show. Governor Murphy talks about the state of the healthcare industry in New Jersey, how the COVID-19 pandemic will reshape health policy choices in the state, and why the pandemic's shift to remote work could…
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Trailer: The State of Health with Gunnar Esiason
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Welcome to the State of Health, patients put healthcare decision makers and thought leaders in the hot seat. Join Gunnar Esiason, a cystic fibrosis patient advocate and rare disease patient leader, as he rolls back the curtain on the healthcare system through conversations with political leaders, industry decision makers, thought leaders and, of co…
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Breathe In #98 - The Legal Marriage Question
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This week on Breathe In, Tiffany is on her own again while Gunnar battles his way through final exams. Tiffany is joined by a new voice on the podcast, Holly Seay, 24, from Georgia, a newlywed with CF. Holly takes us through her life with CF and how she met her now husband. Prior to their wedding, Holly and her now husband never lived together. Hol…
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On this episode of Breathe In, Gunnar takes the day off and Tiffany takes over with a returning guest, Audrey Kostelec, 23 from Washington State. You may remember Audrey from the emergency podcast we had on FaceBook Live in March. This time we talk about Audrey and her CF journey. Audrey explains how she was misdiagnosed and has recently been place…
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A mere few days following the FDA's approval of Trikafta, cystic fibrosis patients across the United States began dosing. This week's podcast looks back at Gunnar's time in the triple combo study. Think of this podcast as a follow to Gunnar's blog over on GunnarEsiason.com. Gunnar talks about both the immediate and long term affects of having been …
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Gunnar and Tiffany welcome back the podcast after a brief (unplanned!) hiatus. Tiffany announces that she started working a new job and has begun living out her goal of working full time. Gunnar talks about fighting through a round a midterms in the first quarter MBA term. The duo chat about getting their flu shots, why CF community members must ad…
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After a few weeks off, Gunnar and Tiffany return to the podcast with Gunnar's girlfriend, Darcy. This time, though, Darcy puts on her social worker hat and takes the podcast through a clinical lens into the world of self care. It's established early on in the podcast that self care is a bit of a misnomer these days because of Instagram, while Darcy…
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Breathe In #93 - Pregnancy With Low Lung Function
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Tiffany is joined by Ashlee Terwilliger, 35, with cystic fibrosis and a double lung transplant survivor. The two talk about Ashlee's life growing up and how becoming a teacher affected her health and how she handled all the germs. As her health declined, she became pregnant and Ashlee takes us through being pregnant and labor with a low lung functi…
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Breathe In #92 - Moving to a New Place
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Olivia Duesterberg, 26 with cystic fibrosis, joins the podcast from Denver, Colorado. Olivia, like Gunnar, is fresh off a move to a new place, so this week on Breathe In, the team tackles what it takes to transition care, a routine, and everything in between when someone with CF needs to move to a brand new place. Olivia mentions that she had been …
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Breathe In #91 - Jack Goodwin, "Salt in My Soul"
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With Tiffany off for the week, Gunnar is joined by his girlfriend, Darcy, and Jack Goodwin, who dated the late Mallory Smith. Jack talks about his relationship with Mallory and her posthumously published memoir, "Salt in My Soul: An Unfinished Life". Gunnar, Darcy and Jack talk about the dynamics of what goes into a relationship with someone who mi…
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Breathe In #90 - Three Double Lung Transplants
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Amanda Varnes, 24 with cystic fibrosis, joins Gunnar and Tiffany on the podcast for a second time. Amanda last appeared on Breathe In Podcast in November of 2018. Since then, she has been re-transplanted again, making Amanda one of the very few people in the entire world who has received three double lung transplants. Amanda talks about falling int…
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Breathe In #89 - Going Through Medical Procedures
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Fresh off Gunnar's colonoscopy last week, the Breathe In duo talks about their experiences going through various medical procedures, and how they are able to cope with the physical and emotional hurdles that come with them. Gunnar details a brief panic attack he had on the table in the endoscopy suite, which leads Tiffany to share a story about her…
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Carly Klassen, 22 with cystic fibrosis from Boise, Idaho, joins the podcast to talk about her digital art platform More Than Sick. Carly's Insagram account @MoreThanSick has been charging through the cystic fibrosis virtual community and features digital sketches of different women fight back against CF! Carly talks about her motivation to start Mo…
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Cat Kurban, 22, joins Tiff on this episode of Breathe In. Cat was diagnosed with cystic fibrosis at the age of 18 years old. Cat explains to Tiff how she was diagnosed after a shoulder surgery that had been an issue for quite some time. The two talk about Cat's life changing and how her routine changed tremendously. Cat shares about making her way …
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Breathe In #86 - Does it Bother You When You See Someone Smoking?
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Breathe In takes a different angle this week and responds to a current event - San Francisco's proposed ban of e-cigarettes and the popular Juul device. Gunnar notes that he has some complex feelings when he comes across a smoker or someone who uses an e-cigarette - on one hand he recognizes addiction as an illness unto itself, but the economic bur…
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Somer Love joins Tiff on this week where the two talk about "reinventing" themselves after they both hit significant birthdays in the past month of May. Somer and Tiff talk about how they have this sense of wanting to take a new journey and start over in a way. Somer talks about going to her favorite place, San Diego, and having the ocean steer her…
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After a long stretch of featuring guests on the podcast, Gunnar and Tiffany return to the show's roots and have a chat with each other. Tiffany, who just returned from Hawaii with her boyfriend, Jeff, talks about being able to enjoy an active vacation after years on the transplant list. Now that she's post transplant, though, she needs to take sun …
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Chelsea Spruance rejoins the podcast along with Katie Malik, executive director of CF Yogi, to talk about their organization's free virtual yoga classes for the CF community! Katie talks about the origins of CF Yogi, and where it's headed thanks to a grant from the Boomer Esiason Foundation. Gunnar shares that he went to his first every yoga class,…
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Breathe In #82 - The College Days & CF and Pregnancy
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As May comes to a close, Breathe In wraps up CF Awareness Month with two final sprint interviews. Lise-Courtney D'Amico rejoins the podcast to chat with Gunnar about how their college experiences differed despite going to the same university - Boston College. They also talk about their next chapters in life as both of them are about to embark on a …
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Breathe In #81 - Marriage & CF, and Different Ways of Coping with CF
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Gunnar and Tiffany continue May with another week of spring interviews! Tiffany talks with Tyler Smith, 23, who is living with cystic fibrosis and almost a year out from his double lung transplant, Tyler talks about his life growing up with CF and how sport was something that kept him healthy. He played golf and baseball year round and even receive…
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Breathe In #80 - Living Donor Transplant, Lifelong Friends
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Breathe In features two more interviews this week as we continue charging through CF Awareness Month. Danielle Mandella, 32 with CF, joins Gunnar to talk about her very unique path through transplant. As one of the very few people with cystic fibrosis to have ever received a living donor lobe transplant, in lieu of a double lung transplant, some 16…
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Breathe In #79 - Straight From the Lungs, Priceless Breaths
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In keeping with the theme for May, Breathe In features two interviews this week! Gunnar chats with Will Marler, 24 with cystic fibrosis from the UK. Will is the producer of 'Straight From the Lungs' podcast, which features Gunnar and 22 other people with cystic fibrosis! Will talks about the project, which began in 2016, as well as his involvement …
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Breathe In #78 - The Salty Yogi, Physical Therapy for CF
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It's May... CF Awareness Month! Throughout the entire month Breathe In will be featuring several people with CF or people who play a role in improving patient health and wellness in each episode. This week's episode features Chelsea Spruance, 26 with cystic fibrosis, and Karen von Berg, a physical therapist at Johns Hopkins who works with cystic fi…
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Breathe In #77 - Buy or Sell: Person with CF vs. CFer, Cyster/Fibro, CFRD, and more!
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Marge Carfora is back with the Breathe In duo for her the final episode of her April residency. This time the group tackles a Buy or Sell episode. Slippers vs Socks in the hospital, CFer vs person with CF, a debate over the use of Cyster/Fibro, CFRD topics, mobile vests, mobile nebuilzers, nebulizer cups and more!…
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Breathe In #76 - Medical Bills, Paying for Transplant, COTA
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Breathe In features a segmented podcast this week! In the first part, Marge Carfora, who is back for another episode, Gunnar and Tiffany talk about medical expenses, co-pay assistance and assistance programs they use to make living with cystic fibrosis more affordable. Tiffany and Marge, specifically, reminisce on the coverage requirements leading …
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Breathe In #75 - Receiving a Double Lung Transplant and Surviving Cancer
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To honor Organ Donation Awareness Month, Marge Carfora, 36 with cystic fibrosis and 14 years post double lung transplant, joins the podcast as the first ever resident guest host! Marge will feature on all the podcasts airing in the month of April. This episode tells most of Marge's life story, from diagnosis right after birth, through college, a do…
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Breathe In #74 - 2019 Bracket Champion, Interview with Steve Hall
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Steve Hall, 30 with cystic fibrosis from the DC area, joins the podcast to talk about the March Madness Bracket experience and this year's champion. Tiffany also returns to the podcast after a week off. This year's Cystic Fibrosis March Madness Bracket was eye opening in a lot of ways, most notably with the way the "invisible illness" affects famil…
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Breathe In #73 - Cross Country Friendship
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With Tiffany out this week, Gunnar is joined by Lise-Courtney D'Amico, 25 with cystic fibrosis from New York City, and Stacy Carmona, 32 with cystic fibrosis from Orange County, California. Lise-Courtney and Stacy were connected via Cystic Fibrosis Foundation's CF Peer Connect, which pairs two people with CF in a one-to-one peer mentoring program. …
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Breathe In #72 - 2019 Cystic Fibrosis March Madness Bracket
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The Cystic Fibrosis March Madness Bracket is back by popular demand. This year 64 'teams' will battle it out to claim the tile of "The most SMH thing someone has said to you about CF." Colleen Lewis, 33 with cystic fibrosis, joins the podcast this "Selection Thursday" episode. The bracket breaks down into four regions - Questions, Recommendations, …
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