Gunnar Gunnar Esiason

All articles by Gunnar

 

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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Catya Kurban: I am Child Life Specialist with Cystic Fibrosis and Received a COVID-19 Vaccine

This written interview was completed by Catya Kurban, a young woman living with cystic fibrosis who recently completed her masters in science (Child Life and Family Centered Care). She is a patient-facing healthcare worker. 1) why did you get the vaccine? I recently graduated with my masters in science studying Child Life and Family Centered...
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Cystic Fibrosis Around the World: Morocco

Rabat, Morocco, 10-year-old boy, Abdou, living with cystic fibrosis (interview completed with help from mom) About how many people in your country have cystic fibrosis?According to a study made back in 2008, Moroccan population is at risk of this pathology and CF prevalence could be of the order of that observed in European populations (Ratbi...
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I Am a Nurse with Cystic Fibrosis, and I Got The COVID-19 Vaccine

This post was written by Megan DiBenedetto. She is 28 with cystic fibrosis from the New York City area and is a practicing nurse at NYU Langone Health. I’m 28 years old with cystic fibrosis and I’m a bone marrow transplant nurse for NYU Langone Health, a New York City area hospital system. I received...
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Moderna’s COVID-19 Vaccine FDA Briefing Mentions Cystic Fibrosis

Since the beginning of the COVID-19 vaccine development process, Moderna has sought to be incredibly transparent with the trial population – from age groupings, to racial identifiers and risk groups. Today’s release of data about their vaccine candidate has not been any different. Embedded in the FDA’s briefing document on the Moderna COVID-19 Vaccine, the...
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Yes, I Will Get The COVID-19 Vaccine When It’s My Turn

The FDA’s vaccine advisory meeting is today where it’s probably all but certain that the committee will vote to move Pfizer/BioNTech’s vaccine across the Emergency Use Authorization finish line to begin the largest mass vaccination campaign since polio vaccinations began in the mid 20th century. If you’re following me on Twitter, you know I have...
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Thanksgiving isn’t Lost This Year

It is just going to look different. Like so many, Darcy and I are avoiding travel for Thanksgiving. We are staying inside New England’s sphere of regional quarantine rules for Thanksgiving. It’ll be my first Thanksgiving without my family. It is disappointing. It is disappointing because of the role Thanksgiving plays in our family. It...
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With Trikafta Turning One Today, I LOVE Seeing All the Health Anniversaries

Last week I celebrated one year free of IV antibiotics. Darcy and I took a stroll down main street in Woodstock, Vermont and grabbed coffee at one of our favorite cafés in the area. It’s a milestone that we always love to celebrate because memories of just the opposite still plague our thoughts. In the...
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Cystic Fibrosis Around the World: Turkey

Thanks again to CF Europe for helping secure this week’s interview! Istanbul, Turkey, 11-year-old living with cystic fibrosis (interview completed with help from parent) About how many people in your country have cystic fibrosisThere are about 3500 patients registered, but the actual figure is estimated to be much higher.  Do people in your country know...
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What Are Your Remaining Medical Needs Post-Trikafta?

With the calendar turning to October this week (thank God 2020 is coming to an end), we will be celebrating one year of Trikafta’s availability in the United States. It goes without saying that a lot has happened since then – the most significant thing to celebrate is the CF community’s seemingly overnight transformation. Not...
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Cystic Fibrosis Around the World: Portugal

Another thanks to CF Europe for the help with this week’s interview! Lisbon, Portugal, 4-year-old girl living with cystic fibrosis (interview completed by parent) About how many people in your country have cystic fibrosis? In Portugal, there are currently around 400 people with CF. Do people in your country know what CF is?I believe that...
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With CF Clinics Reopening, 10 Tips for a Productive Visit

Yesterday was my first time INSIDE a CF clinic since February. The experience felt a bit surreal. At no point in my life did I ever think I would go without a visit to a CF clinic for more than half a year – especially considering the rate of my visits in my early twenties....
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Cystic Fibrosis Around the World: Bosnia and Herzegovina

We are back with another interview thanks to our friends at CF Europe! Sarajevo, Bosnia and Herzegovina, Emina, 24 living with cystic fibrosis About how many people in your country have cystic fibrosis?50 (42 children and 8 adults) Do people in your country know what CF is? I think most of them don’t know, and...
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Cystic Fibrosis Around the World: Finland

After a lengthy pause, Cystic Fibrosis Around the World returns with some help thanks to our friends at CF Europe. Cystic Fibrosis Around the World is the longest standing series on the blog. It started in the beginning of 2017 with the goal of showing our mostly North American audience how CF is cared for...
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Two Years Ago This Week, I Decided My Life Needed to Change

My love/hate relationship with social media took a turn for the best this past weekend. My Instagram account reminded me of a picture from two years ago: I was on a Long Island beach (best in the world, by the way) on a cool September evening. It was right after Darcy and I took some...
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Opening Up About CF in a New Place

Talking candidly about cystic fibrosis during the first few days of my freshman year at college was one of the most liberating experiences of my life. It went something like this: My roommate, David, and I lived in a room that was assigned to us via my appeal under the Americans with Disabilities Act. My...
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With School Reopening, How Do I Know I Can Trust My Classmates?

The truth is I cannot. Competing interests and priorities reign supreme, and that undermines the integrity of any bubble that any place of education is trying to uphold. I empathize with the hesitation to go back to in person learning in the Fall. Although I fully intend to try to engage in the hybrid learning...
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Nice Things Still Happen in This World

It’s true, in a world filled with chaos, nice things still happen. Yesterday that nice thing was meeting my niece, Winnie. Darcy and I had to wait the full two-week cycle from when Sydney returned home from the hospital before we could see the baby. The wait was borne out of an abundance of caution...
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I Posted About Wearing a Mask on Facebook, The Result Was a Disaster

The list of victims at the hands of the coronavirus pandemic is long, far too long. It may even be an unquantifiable number. There are, of course, the sick, dead, and dying. There are people who will miss out on the opportunity for routine screeners – like colonoscopies and mammograms – and undoubtedly pay the...
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Managing My Frustration With the World

It’s been easy to feel frustrated with the pandemic, the growing political divide, the constant stream of less than optimistic news and the uncertainty about what lies ahead (and yes, the complete lack of professional sports). First it was the masks (and maybe it still is?). We’ve all heard it out and about, “wearing these...
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My Self Quarantine is Coming to an End

I guess a more accurate title would have been, “my self quarantine ended weeks ago, but now it feels like I am moving into a new phase.” A close friend of mine had the coronavirus back in March/April. Fortunately he came through relatively easy. He asked me last night, “so what do you think about...
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Mask Wearing: The Dumbest Binary Political Issue Out There

The dumbest thing going is that mask wearing has devolved into a binary political issue. I have lived through years of severe respiratory illness, and if that counts for anything, then let me get on my soapbox and say that breathing through an N95 mask was (and still is) not an inconvenience whatsoever. I will...
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As Society Reopens, It’s Hard Not to Feel Like We Are Being Left Behind

I have taken this time of self-isolation to work on a lot of things in my life – whether it’s learning a new skill like coding or taking time to reflect on the past. I find myself doing much of the latter on my daily walks. Let me back up, for a moment. Long hikes...
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I Did a Coronavirus Antibody Test; It Left Me With More Questions than Answers

Last week I put on what little PPE I had and walked into a Quest Lab about 30 minutes from my home to get a SARS-CoV-2 serology test. The lab in Claremont, New Hampshire was little more than a small standalone building awkwardly situated in a strip mall parking lot. My test was negative. Not...
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What is Your Risk Tolerance Right Now? Mine: Going for Coffee, Exercising Outdoors, Socially Distant Gatherings

Articulating risk tolerance is hard. It is especially hard during the coronavirus pandemic because we all have competing levels of risk tolerance. It requires a certain degree of vulnerability and deep personal understanding. Our priorities are different across the board. How do we value personal security vs. the security of a loved one… or a...
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Embrace Friendly Debate: Is Cystic Fibrosis a Condition or a Disease?

In the spirit of cystic fibrosis awareness month, one of the most important things we can do as patient and family advocates is communicate effectively about the disease condition that affects our lives. From the outset, many of us lack formal medical education (me included!) and without that, it can be challenging to talk about...
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To the Person Living in Defiance of Social Distancing

We all know someone… someone in our lives who is living in blatant disregard for social distancing. For no good reason, too! They are not an essential worker, nor are they contributing to constructive economic activity. Watching it from a far elicits… a complex emotion. You know who I am talking about. We see them...
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COVID-19 Data Dump Delivers Good News for Cystic Fibrosis Population

One of the benefits of having cystic fibrosis (if there was ever such a thing…) is that it is quite easy for our clinics to report, collect and analyze patient data all over the world. The Cystic Fibrosis Patient Registry (despite some of my issues with it) has the ability to quickly collect data allowing...
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Making Progress Towards Addressing Discriminatory Triage Guidelines

I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to...
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Darcy’s Blog: Fertility Treatments, COVID19, the Salem Witch Trials, and Finding Nemo

Darcy is back on the blog! Fertility treatments are one of those elective procedures that have been canceled because of the pandemic. It makes sense, of course, but it’s one of those crazy domino effects of the virus. It’s weird to think that there will be different children born at different times because COVID19. I’m...
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People With Cystic Fibrosis are NOT Expendable

Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books. “Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that...
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Your Cystic Fibrosis Experience Will be Enormously Valuable in the Post-Pandemic World

We are infection control experts. Don’t miss your opportunity to take a leadership position in your community as people start to adjust to the new normal. Yesterday I listened to Dr. Antony Fauci – the man who is proving to be our national hero when we need one – in an interview on the Wall...
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One Month in Self-Isolation: Stress, Calm and One Big Question, Productivity?

Today is my one-month anniversary for being in self-isolation. Some days I wake up feeling like that time has flown by. Other days it feels like this past month has been the longest decade of my life. At the heart of the month I have been in isolation is my routine, the daily cystic fibrosis...
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Patient Privacy and the Pandemic: Where Do We Draw the Line?

Medical security is one of the most fundamental rights offered to patients and the medical system. Patient privacy is why I often omit or generalize different medical details about my own life within these blogs. I don’t write about PFT scores, test results and things like that. It’s also why I never tried to track...
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It Took a Global Crisis to Allow Remote Learning in Extreme Situations

When I graduated from college my dad asked me how much time I had missed over my four years at BC. A lot. I have since gone back and looked it over. The amount of time probably came out to several months worth of missed days – not just school, but all the other great...
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Reverting to My Pre-Trikafta Norms Feels… Weird

Trikafta has given me freedom, it has unlocked my future and has given me health that I haven’t experienced since I was a college freshman. In the days after dosing, I was out of the house, able to work, able to travel, and able to go back to school. But you know all that. If...
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Coronavirus (COVID-19) is Pushing People with Cystic Fibrosis to Feel a Range of Emotions, From Worried to Business as Usual

You can definitely put me into the worried and stressed categories when we’re talking about COVID-19. Things are happening crazy fast. At times it feels like the global medical infrastructure to fight this thing is buckling beneath the pressure, but then a moment later a new paper is published citing the efficacy of some repurposed...
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How Can We Support Health Systems Through the COVID-19 Crisis? Telehealth for Starters

Yesterday I got an email from my CF center in New York City saying telehealth services are beginning to role out for patients who don’t want to come to the clinic. The clinic hadn’t yet recommended against coming in for visits, but it certainly felt that may one day be a possibility in the very...
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Yes, The Coronavirus Spread is Making Me Anxious

Last week I naively asked, “Will we fall victim to healthcare rationing?” This week it seems like that’s the question global experts are asking, too. The thing that scares me most about the coronavirus outbreak is the potential for an indefinite period of time where every day health services could be out of reach. Yes,...
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A Doctor is Responsible for Bringing Coronavirus (COVID19) Too Close to Home for Me

Coronavirus came to an off campus party at the Tuck School of Business. Yup – I thought rural New Hampshire would be a safe bet during this pandemic, but it turns out I was wrong. Some of the ethical questions I blogged about a few days are feeling far more real today. Long story short,...
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Coronavirus (COVID-19) and Some of the Ethical Questions Facing the Cystic Fibrosis Community

Novel coronavirus, the virus responsible for Coronavirus Disease 2019 (COVID-19) is on the verge of becoming a global pandemic if it isn’t already. As we stand on the precipice of what could be one of the largest global public health sagas of our lifetimes, I think it’s worth talking about COVID-19 from the “at risk...
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Guest Column: The Canadian Quest for Comprehensive Access to CFTR Modulators

It has been a difficult few months for the Canadian cystic fibrosis community. While our country is widely known for being a world leader when it comes to publicly funded cystic fibrosis care and healthcare in general, the same cannot be said for its position on pharmacare. Many Americans will be surprised to learn that...
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