Gunnar Gunnar Esiason

All articles by Gunnar

 

Cystic Fibrosis is Changing, and It’s Remarkable

Last week we celebrated news out of the North American Cystic Fibrosis Conference that median age of survival (remember, the age beyond which we expect 50% of people with CF born today to live, under the assumption that recent age-specific mortality rates will hold for the rest of their lives) climbed to 50 years old,...
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Understanding How Drugs Age Over Time and What That Means for Potential Reform

Drug pricing reform is charging through congress, and like anything else in Washington, our lawmakers try to jam as many (or not enough depending on whom you ask…) nuances into individual bills. A lot of different dynamics come into play from out-of-pocket costs to insurance benefits and, of course, plain old drug pricing. Today, let’s...
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State of Health Episode 22: Pharmacy Benefit Managers (PBMs) and Their Hidden Role in Drug Pricing

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...
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Understanding Median Predicted Survival, Life Expectancy and the Rapid Progress in Cystic Fibrosis

My timelines are on fire with the wonderful news out of the North American Cystic Fibrosis Conference that Median Predicted Survival in cystic fibrosis has been raised to 50 years old thanks to a hell of a lot of progress that our condition has made over the past several years. It’s not lost on me...
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State of Health Episode 21: Antibiotic Resistance: How CARB-X Helps New Companies Get a Running Start

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,...
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Cystic Fibrosis, COVID-19 and Understanding Outcome Risk

Just this afternoon, much of the CF Community became aware of a cystic fibrosis and COVID-19 outcome study in Respiratory Medicine. The article was published back in September, but it’s making the rounds on social media today. This study is of serious interest for our patient community because, at its core, it is really the...
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Two Years Without a Pulmonary Exacerbation

It feels funny writing about this. Maybe it’s my new normal – hopefully it is! Last year I wrote about hitting the one year free of a pulmonary exacerbation milestone. It was the second time I hit it since starting Trikfata (the first came during the clinical trial, but was separated from the second time...
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State of Health Episode 20: Antibiotic Resistance: Bacteriophages, a Possible Answer?

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...
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State of Health Episode 19: Antibiotic Resistance: PASTEUR Act with Senator Michael Bennet

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...
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Thoughts on Fatherhood: The Single Most Important Goal in my Life

With each day that goes by, it feels like we are heading straight towards the next chapter of our lives together. Darcy and I have officially started transforming one of the rooms in our home into a nursey (catch my DIY projects on Instagram). My clothes are getting moved out of the closet this week,...
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Thoughts on Venture Philanthropy: A Patient-Centered Investment Thesis

Venture Philanthropy in biotechnology is as close to a patient-centered investment thesis as there could be. It allows investors and non-profit disease associations working on behalf of patient populations to consider risk, outcome, exit, time horizon, deal sourcing, and non-financial intangibles differently than a traditional venture capitalist. When a non-profit organization engages in venture philanthropy...
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State of Health Episode 18: Antibiotic Resistance: Investing in the Next Generation of Antibiotics

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...
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State of Health Episode 17: Antibiotic Resistane:

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...
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State of Health Episode 16: Antibiotic Resistance: The Patient Experience

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....
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What am I reading? Caregivers, Economics Behind Vaccine Mandates, Theranos

Let’s take a look at my browsing history (No, I don’t subscribe to print newspapers…)! Former New York Giants head coach (and former BC Eagles head football coach), Tom Coughlin, took to the New York Times Opinion column to pen a thoughtful piece about his wife’s recently diagnosed brain disorder, progressive supranuclear palsy. The condition...
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I Have Been in Clinical Trials and Taken Experimental Medications, the COVID-19 Vaccines are Well Beyond that Point

Anytime I hear (or see) someone talking about the Pfizer or Moderna vaccines as if they are experimental, I cringe on the inside. I’d go as far as saying it feels like a slap in the face for anyone who has ever enrolled in a clinical trial. I am one of those people. From 2013...
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State of Health Episode 15: Immunocompromised Transplant Patients Return to Vaccine Clinics for Booster Shots

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,...
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What am I Reading? Hospital Pricing, Drug Pricing, Antibiotics

Alright, team! I am going to try something new on the blog. One of the most fundamental parts of the patient advocate life is to stay up to date with current events, news and medical literature in cystic fibrosis, the world of rare disease and health policy. I spend a lot of time reading articles...
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State of Health Episode 14: Huntington’s Disease and Patient Advocacy with Seth Rotberg

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...
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Darcy’s Blog: Everything I Did to Improve Our Chances of IVF Success

In 2019, the New York Times published an article about how the pineapple is the unofficial symbol of infertility and IVF. Apparently, this is because the pineapple symbolizes IVF families as tough on the outside but sweet on the inside, and it encourages women to stand tall and wear a crown, but it also has...
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State of Health Episode 13: Three Questions with Utah Governor Spencer Cox

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...
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The COVID-19 Vaccine Did Not Harm My Fertility

Fertility is often cited as a reason for COVID-19 vaccine hesitancy. Misinformation is permeating into our lives through the media we consume daily. Surely, you’ve heard it by now, “we need to combat vaccine misinformation!” It’s also likely you know someone who deeply believes something that you likely understand to be completely nuts. Let my...
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Telehealth was an Experiment in CF Care During COVID, Let’s Make it Standard

Times are changing in cystic fibrosis. Anecdotally you hear about patients rapidly withdrawing treatments or sessions altogether. At my last clinic visit, we even discussed, “why don’t you try withdrawing your evening session? Start with every other night at first.” If I didn’t have a baby coming our way in December, I would have been...
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State of Health Episode 12: The Future of the Drug Industry

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...
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State of Health Episode 11: Three Questions with Alaskan Governor Mike Dunleavy

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...
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Assessing My Risk Tolerance with the Delta Variant

Our seemingly never-ending pandemic is stirring up again, which means it is time to revisit how I have been handling my risk. From the outset and even after getting vaccinated, I have made it a general routine to assess disease spread in my area and read as much commentary from some of my favorite public...
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State of Health Episode 10: Drug Access in Canada with Chris MacLeod

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:...
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Darcy’s Blog: Our IVF Process – Timeline, Cost, and All the Nitty Gritty

I still can’t believe I’m lucky enough to be writing a blog about how our IVF worked. I wrote a little about this last year, but anyone who knows me, knows that all I’ve ever wanted is to be a Mom. I’ve been dreaming about my little boy for as long as I can remember....
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State of Health Episode 9: Turning Hope into Action with Dr. David Fajgenbaum and the Castleman Disease Collaborative Network

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...
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The Internet Taught Me About Infertility in CF; It Wasn’t a Doctor

Darcy and I really appreciate all the kind comments and messages we have received after sharing one half of the CF IVF journey on the blog. As promised, Darcy will soon take to the blog to talk about everything she had to go through leading up to the process, during, and now after. People seem...
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State of Health Episode 8: Drug Pricing, Valuing Innovation and No Patient Left Behind with Peter Kolchinsky

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...
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A Search and Rescue Mission into my Nuts – the Male Side of IVF with CF

I never thought I’d be writing about my nuts on the blog, but here we are. If you want to stop reading, I’ll give you the out and tell you the whole thing… was not THAT bad. But I am going to detail my encounters with the medical system for the male side of the...
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State of Health Episode 7: OpenNotes with Liz Salmi

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...
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State of Health Episode 6: Ask Patients! Jen Horonjeff and the Savvy Co-op

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...
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State of Health Episode 5: Three Questions with Bob Coughlin from MassBio

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...
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State of Health Episode 4: Carmela Coyle and the California Hospital Association

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....
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10 Years with My Feeding Tube

This June marks a full decade with my feeding tube – or I guess feeding tubes since I am ~supposed~ to switch it out every 6-8 months. For those of you keeping score at home, that reality is more like a feeding tube swap every 12-16 months. I am shocked when I look back on...
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State of Health Episode 3: Three Questions with Governor Mike Parson (MO)

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...
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State of Health Episode 2: Lindsey Leininger, Dear Pandemic, and The Fight Against Misinformation

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...
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State of Health Episode 1: Three Questions with Governor Phil Murphy (NJ)

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...
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Fully Vaxxed and Shedding my Mask (Most of the Time)

I don’t always blog on Saturday, but when I do it’s because I have something I need to get off my chest. This week, the CDC provided guidance to state and federal policymakers that fully vaccinated people (two weeks after their final shot) can do just about everything they did before the pandemic without needing...
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Welcome to the State of Health

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....
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Cystic Fibrosis at 30

It’s been a while since I last blogged about my life. I suppose that’s the price I’m paying for oversubscribing to credits this academic year – a small silver lining of hybrid/remote school! My blogging hiatus led to missed commentary on a lifetime milestone. I turned 30 in April! I won’t lie, hitting 30 does...
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How Much Money is Spent on Cystic Fibrosis Research and Development?

The answer: A LOT. I decided to do some very rough back-of-the-napkin math to understand spending in the CF space because occasionally I come across a strange fundraising appeal that solicits donations for cystic fibrosis research on the basis that the US government does not fund research efforts for the condition. If you run in...
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Vaccine “Passports” Will Not Take Away Your Liberty When Used Correctly

I disclose my cystic fibrosis every time I fly. Of course, I have not flown since COVID-19 shut down the world, so I guess it would make more sense to say that I used to disclose my cystic fibrosis every time I got on an airplane in the before times. I will continue to do...
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The (Kind of) End of a Long Road

I got my second Moderna vaccine dose over the weekend, and finally after a long year I am breathing a sigh of relief. If my experience this past weekend is representative of the nation at large, the demand for vaccines is still quite high. The clinic was packed wall to wall with vaccine recipients and...
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Your Questions About My COVID-19 Vaccine Experience Answered

This past Saturday I got the call saying I could come off a COVID-19 vaccine wait list if I hustled down to a local vaccine clinic. I had nothing else going on (read: I have had anything else going on since last March) so I hopped in the car to get my vaccine. It was...
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Our Proposal Story! The One Year Anniversary of Our Engagement

This will be a first for the blog! Darcy and I co-wrote a post. Today is the one year anniversary of when we got engaged! The first two weeks of our engagement were amazing. I think we were riding as high as ever, and then the pandemic struck. We realized that we never really got...
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Darcy’s Blog: A Feeding Tube Challenge

Gunnar has asked me to write a blog with my feeding tube recipes for a few years now, but it never felt right to me. After all, I’m not a dietician or nutritionist, so who am I to suggest what people pour into their gullet? But this week is feeding tube awareness week, and as...
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One Full Year Without a Viral Infection: Thank You, Social Distancing

I will be the first to admit that I have pandemic fatigue. I miss having a beer after hockey with my teammates, I miss going to class, and I miss freely going to the grocery store without having to orchestrate some massive plan. I also miss the days when working hours wouldn’t blend into time...
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