The State of Health with Gunnar Esiason

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 supply chain, but until just recently, their outsized role has been hidden in the shadows. Antonio has been on the front lines introducing transparency into the prescription drug marketplace, including just recently in front of the Ohio state legislature. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 ActionFund, CARB-X doesn't take equity positions in new companies, but rather provides grants and infrastructure support for companies moving through the drug development process. Gunnar and Kevin also talk about the PASTEUR and DISARM Acts as potential legislative fixes for the antibiotic marketplace. Kevin also points to an assumption that has long been made about generic drugs, which falls short for antibiotics and leaves them in a place that leaves them vulnerable to present market conditions. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 advocate who advocates for new options to treat highly antibiotic resistant bacteria. The show details a chance meeting for Dr. Chan and Ella, which led to Ella being one of the first cystic fibrosis patients in the US to dose a phage cocktail fresh out of Dr. Chan's lab work. The two talk about what needs to happen to bring a technology out of academic to patients and how clinical research happens outside of a randomized clinical trial. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 how the economics at the heart of PASTEUR differ from current reimbursement practices for antibiotics. Gunnar talks about relying on antibiotics of last resort, how PASTEUR complements another piece of legislation called the DISARM Act, and how new antibiotic options would benefit people living with drug resistant infections. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 Action Fund and a traditional Biotechnology VC, and the pharmaceutical industry's role in tackling antibiotic resistance. The conversation turns to emerging antibacterial technologies, antibiotic market dynamics and what success means for the AMR Action Fund in the long term. Earlier episodes in the Antibiotic Resistance Series are in the show's feed! Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 thanks to bacteria evolving to become impervious to antibiotic exposure. PASTEUR is similarly unique because it delinks government reimbursement from prescription volume a pays for novel drugs in the same way you and I pay for our Netflix subscriptions. This episode is part of the State of Health's antibiotic resistance series. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 market. Gunnar and Emma lean on past personal experience with antibiotic resistant infections, their frustrations with the lack of new options and their hopes for how policymakers can reach across the aisle to address the broken incentives at the heart of the reimbursement market that is largely specific to antibiotics. The episode is the first in an ongoing series about antibiotics and the quest to bring novel technologies to combat the rising threat of antimicrobial resistance. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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, her frustrations with friends who are vaccine hesitant and how her past career as a nurse has informed her choices during the pandemic. Now a mother, she also talks about weighing the risks of pandemic versus her child's development. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 more important the impact they think patient advocates can have inside the health industry. Seth talks to Gunnar about the frustration that some drug developers have had with taking on Huntington's Disease, while Seth also shares that he has some frustration with how drugs are evaluated for efficacy in Huntington's Disease clinical trials. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 social distancing inside the cystic fibrosis community as there is a constant fear around cross-infections for two people living with CF and some strategies for better including people living with chronic illness in state economies. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 episode, Gunnar presses Dr. Smith on the sustainability of high list prices and burden for the insurance industry. Dr. Smith also talks about rising coinsurance rates as a barrier to patient access. The show concludes with Dr. Smith's hopes for the future of drug development and evolving market dynamic. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 normalize remote medicine. Governor Dunleavy asks Gunnar about antibiotic resistance, barriers to care for people living with rare diseases and how patient network can become more involved in policy decisions at the state and local level. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 entitled, “Beating the Odds: 11 Lessons to Overcome a Health Crisis and lead a More Resilient Life” In previous episodes we've talked with guests about the short- and long-term value of breakthrough and innovative medicines. Today, we're taking a trip abroad to understand how countries outside the US value prescription drugs and some of the bureaucratic fights patient groups need to wage to gain access to them. Chris has been at the tip of the spear in Canadian advocacy for drug access. Let's talk about the State of prescription drugs across the border. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 Disease. Gunnar and Dr. Fajgenbaum talk about the hurdles that often stand in front of rare disease patient populations like decentralized patient organizations, a lack of a single scientific strategy and the absence of capital required for therapeutic development. Dr. Fajgenbaum has taken those challenges in stride and founded the Castleman Disease Collaborative Network hopes that he and his colleagues can centralize the needs of the patient community while working with all stakeholders from patients and physicians to family members and researchers. Gunnar and David also talk about the parallels between Castleman Disease and COVID-19, how patients who are not medical students or medical savvy can overcome the technical barrier between patients and providers, and how repurposing existing drug designed to target other conditions could be used to help people living with rare or ultra rare diseases. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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, The Great American Drug Deal: A New Prescription for Innovative and Affordable Medicines. Peter also talks about his new non-profit, No Patient Left Behind, of which Gunnar is a part, and why out of pocket costs should be seen as the true barriers between innovative medicines and patients. Peter uses the COVID-19 pandemic as a case study for improving access issues insofar that out of pocket costs were largely eliminated for vaccines. No Patient Left behind is on twitter @NPLB_org and on the web at www.nopatientleftbehind.org Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 care. Open progress notes are the after visit notes a physician or clinician writes into a patient charts that historically have only been visible to doctors. Thanks to a policy change, patients can now have more control over their own care. In some cases they may also possess the power to correct discrepancies and have a better understanding about the direction of their own care. You can follow Liz on Twitter @TheLizArmy Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 trying to change that culture. Jen Horonjeff, PhD, is the founder and CEO of Savvy Cooperative, the first and only patient-owned public benefit co-op that helps healthcare companies connect directly with diverse patients in order to get the insights they need to build better and more inclusive innovations. On the State of Health this week, Gunnar and Jen talk about patient experience and why when the industry goes the extra mile to compensate patients for input they bring to a billion dollar investment, the innovations are that much stronger. Let's talk about the state of patient engagement. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 the way people view drug makers. Gunnar talks about why he thinks patients should be able to own clinical trial data, why clinical trials are not accessible enough for diverse patient populations, and how patients should be included throughout the drug development process. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 challenges Carmela on hospital prices and the affordability of care in America. They also talk about how the pandemic has exposed long running social, racial and socioeconomic determinants of health. Finally Carmela talks to Gunnar about managing through a crisis, and shares a few leadership tips in the process. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 under the weight of viral infections. Governor Parson also shares what he thinks could be some of the lasting legacies of the pandemic. The governor asks Gunnar how people with CF manage infection control and what the general population could learn from patients like him, and then looks for Gunnar's opinion on why patients need to be included in health policy decisions. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 writes about data-driven health policy. Her greatest professional passion is helping health care decision-makers make sense of medical data. Over her career she has taught and trained policymakers, physicians, patient advocates, and executives about the intelligent use of public health and medical evidence. She is on faculty at the Tuck School of Business at Dartmouth College where she teaches courses at the intersection of health analytics, public health, and the health care industry. Lindsey talks to Gunnar about bridging the political divide when communicating about public health measures, how people should interpret the data they see on TV and how the pandemic ends. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 provide opportunities for those who need it most. Gunnar talks about one of his first jobs in the healthcare industry and his hope for career patients to have more than just a stakeholder role in government and the health industry. Finally the conversation moves to the State's role in healthcare affordability. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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 course, patients. Let's talk about the State of Health. Learn more about your ad choices. Visit podcastchoices.com/adchoices