Gunnar Gunnar Esiason

All articles by Gunnar

 

Drug Development Wednesday: How Are Drugs Priced?

Amy’s next installment in her Drug Development Wednesday column aims to provide some context to the current drug pricing debate. Why do medications seem to cost so much? Where does that price come from? What are patients actually liable to pay? Are the profit margins for biotechs really that much different than other industries? The...
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Monday Morning Thoughts: My Visit to CFF, Smart Report, and Disaster Relief

Lots of important information to start off your week, so pay attention! My Visit to CFF Believe it or not, prior to last Friday I had only ever been to a Cystic Fibrosis Foundation event once or twice in my life – a golf outing hosted by a family friend. It makes sense, we sort...
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Breathe In Ep. #48 – Buy or Sell: CF Tattoos, Vaccinations, Sinus Rinses, Medical Privacy and more

“Buy or Sell” is back by popular demand! The rules of the game are simple, each host has to buy or sell a CF topic. If they “buy” it, that means they support the topic or technique. Conversely a “sell” rating means they disagree. The trio discusses CF topics from CF tattoos, to sterilization techniques,...
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Darcy’s Blog: Gunnar is Gross

I have to tell you… when I asked Darcy if she’d take over a guest column on my blog, I didn’t think this is the direction we’d be going, but alas here we are… talking about my farts. Gunnar is often asked questions along the lines of… what do you do about coughing in front...
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Monday Morning Thoughts: How Many CF Clinics Have You Been To? The Anti-Vaxxers Are after Me! NFL Week 1 Recap

We skipped Monday Morning Thoughts last week (because… Labor Day, duh), but we’re back! It’s Monday, the NFL is off to a hell of a start, but we’ll get to that in a moment. Let’s begin with some cystic fibrosis stuff (after all this is a CF-focused blog). How Many CF Clinics Have You Been...
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Let’s Get Those Flu Shots, Don’t be an A**hole and Skip Out!!!

Good morning lovely people of the Internet! We’ve had TWO, yes TWO, consecutive days of chilly morning weather, so it’s time for my yearly reminder…. GET THOSE FLU SHOTS Let’s get in gear and get those flu shots. Don’t be an asshole and skip out on them. The most vulnerable in our community DEPEND on...
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Which Respirator I use and Why

Yesterday I posted this selfie from my flight to Boston: A few things to note: Grown men do, in fact, take selfies My choice in surgical mask is a bit… unique Airplane cabins are not conducive to people over 6’0 I’ve since gotten a number of questions about the mask. Generally I use a mask...
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Breathe In Ep. #47 – Home IV’s

Breathe In is back after a brief end of summer hiatus! Lea finds herself on IV’s to start up September, so the trio talks about some of their experiences with home IV’s. Home IV’s can seem complex and overwhelming especially for patients and families who haven’t yet developed a routine for recurring pulmonary exacerbations. Gunnar...
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Drug Development Wednesday: Therapeutics Development Network

Amy is back with the 4th post in her Drug Development Wednesday series! I believe that one of the best kept secrets of CF drug development is the Therapeutics Development Network (TDN) – an entity I very rarely hear about in the CF community. What is the TDN? According to the American CFF, “The Cystic...
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Cystic Fibrosis is Still Killing People Before They Turn 30

There isn’t a day that goes by when a family, somewhere, experiences the horrors of cystic fibrosis in a close, personal way. Overshadowed in the constant talk of advances within our drug development pipeline and the widespread improved prognosis for a lot of us, is the simple fact that cystic fibrosis continues to kill people...
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Some of My Passions Outside Cystic Fibrosis and a Great American Road Trip

Believe it or not, I do have a life outside cystic fibrosis! I have a passion for American military, financial and political history. I actually started off my college studies on a political science path. The more you know! To that end, I’ve always felt that my formal education in American history, and the lessons...
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Darcy’s Blog: Cystic Fibrosis as the New Normal

Darcy is back with another blog! Today she’s going to be talking about our relationship! Before Gunnar and I even went out on our first date, he told me not to google cystic fibrosis. I honored his request, and I let him tell me about CF though his own eyes… for the time being. After...
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Monday Morning Thoughts: Dealing with CF Nuisances – Sterilizing, Packing, Neb-cups, Needle Sticks

I’m away this week… the final week of Summer! Thank God for the auto blog-posting feature. We’re going to look at some CF nuisances in today’s blog. Sterilizing My go to technique for sterilizing nebs is to use a microwave baby bottle sterilizer. My thought process behind this is that if a company is making...
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Is The Institute For Clinical and Economic Review (ICER) Quietly Becoming the ‘Death Panel’ We’ve Long Feared?

The answer is yes. The term ‘death panel’ was initially a (stupid) political ploy to scare people out of supporting Obamacare. The GOP, specifically Governor Sarah Palin, sort of pushed people to believe that there would be some government agency overseeing medical decisions, social responsibility and economic impact on the healthcare system. It was assumed...
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Breathe In Ep. #46 – Mental Health

Darcy, a mental health professional (who happens to be dating Gunnar), joins Lea and Tiffany on the podcast this week to talk about mental health in the cystic fibrosis patient population. The podcast starts with memories to childhood when mental health was overlooked within cystic fibrosis. The conversation turns to PTSD, traumatic procedures and operations...
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Drug Development Wednesday: Grateful to Have Cystic Fibrosis (and other musings on Venture Philanthropy)

Amy is back with another episode of Drug Development Wednesday. We hear the term “Venture Philanthropy” thrown around in the cystic fibrosis community…. so what is it? So I’m actually not one of those CFer’s who is grateful to have CF. I would prefer not to have all the extra stuff that comes with having...
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I Came Across an Old, Shirtless Picture From The Pre-Feeding Tube Days

I don’t think I need to write too much here… The pictures below sort of speak for themselves. On the left I was 18 years old, about a week or so away from heading off to college, fully grown (about 6’3) and seriously malnourished. The picture on the right was taken a little less than...
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Monday Morning Thoughts: Netflix’s ‘Afflicted’ Doesn’t Do Justice to Chronic Illness, the NFL’s New Tackling Rule is Bizarre

If you can’t tell… I watched a lot of TV over the weekend, and now this is where we are. Netflix’s ‘Afflicted’ Doesn’t Do Justice to Chronic Illness If you listened to last week’s podcast, you heard our guest, Katie, recommend that I watch Afflicted, a new series on Netflix (see the link for the trailer)....
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Breathe In Ep. #45 – Working in Education With CF and Back to School!

Katie Fielding, 37 with cystic fibrosis and 15 years of experience in public education, joins the podcast to talk back to school! Katie offers advice on 504 plans, disability protections and gives some insight on why teachers want to do whatever it takes to see their students succeed. Gunnar offers input about some positive and...
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Darcy’s Column: PTSD and Cystic Fibrosis

We’ve got a new column coming at you! My girlfriend, Darcy, is going to take over some space on the blog to write about the significant other’s perspective in a cystic fibrosis relationship. She’s also going to use her training as a social worker/psychotherapist to tackle some mental health topics in the world of cystic...
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Prior Authorizations Might Be the Stupidest Things in Healthcare

Prior authorization, the two dreaded words that all of us hate and fear in healthcare. It’s part of the common healthcare vernacular, we hear it all the time, and, in a way, we sort of expect it. What is a prior authorization? I mean do you even know what it is? Other than the fact...
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Monday Morning Thoughts: Planning Ahead, Being Spontaneous and Announcing a New Guest Column!

If we get any more rain I’m going to need a buy a kayak… Planning Ahead Planning ahead sort of seems like a counterintuitive thing when you’re living with an unpredictable terminal illness, but it’s an essential part of life. Day-to-day success of my treatment routine revolves around my ability to look at times when...
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Breathe In Ep. #44 – Cystic Fibrosis, Going Vegan and College

Hannah Buck, 23 with cystic fibrosis and entering her final year at University of Michigan, joins the the trio to talk about how she had to learn how to prioritize her health after a number of troubling health issues early on in her college career. She thinks that some of her problems were revolving around...
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Drug Development Wednesday: Clinical Trials and the Dawn of CFTR Modulators

Amy is back for the second installment for Drug Development Wednesday! Welcome back! Our drug development story continues today with an in-depth dive in to the several phases of clinical trials (from pre-clinical to Phase IV) in the United States. This blog will discuss some highlights of each phase of drug development, including cost, time,...
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What Can the CF Community Learn From the HIV/AIDS Movement? Patient Leadership

Empowerment. The AIDS movement from the 80’s and 90’s is the gold standard for what patient empowerment should look like. It was essentially a patient centric civil rights movement that changed much of the healthcare landscape. Most notably with the way the FDA looks at clinical trials and oversight into breakthrough medications. What I’d like...
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Monday Morning Thoughts: Some Motivation: short and long term goals (and failures).

It’s brutally hot, I’m super sun burned… but it’s Monday so we’ve got a brand new week ahead of us! Short-term goals (and failures) We’re talking about short…short-term goals, like day-to-day short-term goals. I always like to take some time each night to plan out some of the things I’d like to accomplish when the...
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Breathe In Ep. #43 – How to Improve Cystic Fibrosis Clinics

The trio builds off a topic from last week about changing the way things are done in CF clinics. The episode starts off with Gunnar, Tiffany and Lea running through a typical appointment at their respective CF clinics. Lea notes Hopkins’ outdated way of doing things, and marshaling patients through a series of waiting rooms...
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I Value My Alone Time to Cope With Cystic Fibrosis

“Have you taken your enzymes, Gunnar?” “Did you refill your prescriptions?” “Have you done your treatments yet this morning?” “Now cough, Gunnar!” “How was the doctor, Gunnar?” “Are your PFT’s okay?”  “Did you start your IV yet?” “Gunnar, it looks like you forgot your vitamins!” The list goes on and on… Life with cystic fibrosis...
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Monday Morning Thoughts: Finding Exercise in Different Places, Answers to Some Questions About My Feeding Tube

IT’S. ALMOST. AUGUST. Finding Exercise in Different Places I find myself up and on the move through different periods of time during the summer. While it’s amazing that I’m able to be up and about, it does mean that sometimes my routine at the gym suffers. Unfortunately the gym doesn’t really move with me. So...
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Breathe In #42 – Taboo Topics: Genetics, Sex, Death, Alternative Remedies and more

With the trio reunited, Gunnar and the Salty Cysters take on some Taboo Topics in the CF World. Tiffany recounts a powerful moment before her transplant surgery when she was faced with coming to grips with a life changing surgery or immediate demise, while the Gunnar and Lea talk about some fears associated with Death....
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Exciting News From the Cystic Fibrosis Drug Pipeline: Antimicrobials and CFTR Modulators

We have been beyond fortunate to see some really positive news coming from the Pipeline over the past couple of weeks and months. First, a potential breathtaking (science pun!) antimicrobial from Vast Therapeutics is looking to conquer chronic infection in cystic fibrosis. Vast Therapeutics is “a preclinical stage pharmaceutical company focused on delivering the power...
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Drug Development Wednesday: What Has Taken So Long?

Happy Wednesday, folks. Today we’re introducing our first ever guest column on the blog! I asked a friend of mine with CF if she’d dive into the world of drug development using her 14 years of experience of working in the healthcare industry. Amy’s column, Drug Development Wednesday, will run every other week, and include...
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Monday Morning Thoughts: “Thin Privilege” and Some Summer Reading

Are we past the halfway point of Summer? Is fall quickly approaching? Thin Privilege In the world of “what offends people now!” we get “thin privilege.” I don’t love the trend that encourages a group of people to marginalize another group of people as a way of coping with a personal issue. Yet here we...
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NBC, “Today” Misrepresents Cystic Fibrosis, Misleads Viewers About “Discarding” CF Embryos

This morning on NBC’s Megyn Kelly Today, Megyn Kelly and her panel discussed some of the ethics surrounding genetic editing. Specifically a story from the UK, where a “bioethics think tank” decided that it’s morally acceptable to edit the DNA of an embryo. The lens for the topic, of course, was cystic fibrosis. A little bit...
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Breathe In Ep. #41 – Social Media and Chronic Illness

Filling in for Gunnar, Somer Love returns to the podcast and joins the Salty Cysters in a chat about social media in the cystic fibrosis community. They dive into why they use social media, how it has helped CF communication and friendships, and the positive influences it has brought to all three of them. Whether...
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Cystic Fibrosis Around the World: Italy

We head back to Europe for this installment of Cystic Fibrosis Around the World. Today we meet Clara, she is 16 years old living with cystic fibrosis and heading towards the transplant list. Clara offers fantastic commentary for the state of things for people with CF living in Italy. [brackets indicate an edit for translation]...
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Monday Morning Thoughts: How I Organize My Pill Case, Favorite Summer Activities, and Support BEF on Amazon Prime Day.

It’s Amazon Prime Day! It’s also a Monday… so let’s jump into it! How I Organize My Pill Case When it comes to the way I organize my daily medications, I don’t use a weekly pill set up. I use a daily organizer. I suppose I find myself in the minority here since most people...
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Breathe In Ep. #40 – Monarch Airway Clearance

Marten DeVlieger, 37 with cystic fibrosis from Taber, Canada, joins Tiffany and Gunnar on the podcast this week to talk about his life with CF and what led to him inventing the basis for the Hill-Rom Monarch Airway Clearance System. Marten begins the interview by talking about his very active lifestyle, from backpacking through Europe,...
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We Are a Community of Individuals

A discussion in the comments on one of my Facebook posts from the other day highlighted an interesting (and often overlooked) part of the cystic fibrosis world – people have very different individual needs. Here are some of the comments: Ultimately the topic here is the ACA – Affordable Care Act (Obamacare). We’ll touch on...
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Pfizer Self Regulates Drug Pricing (Temporarily)

The “Great Pfizer Drug Pricing Saga of 2018” looks to be coming to a close! We’re operating outside the realm of cystic fibrosis here, but I think this is a pretty wild story in the healthcare sector… one I think may or may not have an impact on us somewhere down the line. The past...
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Monday Morning Thoughts: My First Intestinal Blockage, Teaching a Puppy to Swim, and Team Boomer On Top of the World!

Another Monday, another Monday Morning Thoughts… My First Intestinal Blockage The respiratory side of cystic fibrosis gets most of the play, but I think the GI side is arguably worse. I’ve had my fair share of GI issues over the years from pancreatic insufficiency, to acute pancreatitis and 7 years (and counting) of g-tube feeds....
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Bipartisan Bill Seeks To Incentivize Antimicrobial Development; NTM Continues to Spread in CF Community

We are in desperate need of new antimicrobials to combat the growing threat of drug resistant bacteria. I think the majority of the governments in industrialized nations recognize this threat and are finally starting to mobilize against it. As it currently stands, though, there is little incentive for drug makers to dive into the antibiotic...
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Why Patient Input is Pretty Much the Only Thing that Matters

Patients are the ends to the means in chronic illness. Every single thing that happens in cystic fibrosis (specifically) – from research, fundraising, drug development, policy decisions, conversations, to treatment time and everything in between – revolves around the patient. It is a delicate system that can ruin a life or, when working properly, save...
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Monday Morning Thoughts: Advice for Parents – Coming Home From the Hospital, Coughing is a Good Thing! and Stop Using “We”

Here we are! The first Monday of July! Today I’ve got some advice for parents. Coming Home From the Hospital The transition back to normal life from an extended stay in the hospital, or really even just a course of IV’s at home, is easier said than done. I always like to look at courses...
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Breathe In Ep. #39 – A Day in the Life

With Gunnar back on the podcast this week, the trio takes a question from a listener who asks what an average day looks like. Since Gunnar, Tiffany and Lea are all at different places with their respective cases of CF, they attack the question through the lens of a work day, a time that’s more...
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New York Times Article Misses Pulse of the Cystic Fibrosis Community

I feel like we’re beating a dead horse with these idiotic stories. A few weeks ago I warned of some of the potential implications from the ICER report. You know… the value of living longer BS. Well… since then the New York Times picked up the ICER Analysis and tried to find the slimmest pigeonhole of...
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Monday Morning Thoughts: FDA Restructure, Fundraising Szn, and World Cup Grievances

The first official Monday of Summer! The Federal Drug Administration Last week the White House released a fairly broad government restructure plan, which includes a change for the FDA. The plan (as reported by STAT) proposes “a fundamental change to the mission of the Food and Drug Administration, one that would transfer most of the...
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Breathe In Ep. #38 – Female Problems and CF

With Gunnar away on business this week, the Salty Cysters aka Lea & Tiff take over the Breathe in Podcast. They chat about the struggles of being a female with cystic fibrosis. CF poses challenges for any individual fighting the illness, however being a female with CF brings its own set of unique challenges. Whether...
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“Five Feet Apart” Movie About Cystic Fibrosis Must Tread Carefully

An upcoming movie from director Justin Baldoni, Five Feet Apart, must tread carefully as it surrounds a sensitive subject – cystic fibrosis cross infection. The movie, slated to release next spring, will also be adapted into a Young Adult novel coming in November. The premise of the story, coming from FlickeringMyth.com: Stella (Haley Lu Richardson)...
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Monday Morning Thoughts: My Go-To Anti-Inflammatory, Try To Be a Realist, Happy Father’s Day!

A quick Monday Morning for you… I’m off to New Hampshire for a BEF Fundraiser! My Go-To Anti-Inflammatory  Inflammation is such a big problem in cystic fibrosis that there are people out there who think CF is part autoimmune disease. The jury is still out on that, I suppose. What we do know, however, is...
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