On Tuesday April 25th 2023, the world lost a bright flame. After a long journey with cancer, Casey Quinlan @MightyCasey passed away peacefully with family and friends by her side. Quinlan was one-of-a-kind and if you had the good fortune of meeting her in-person or interacted with her online, she undoubtedly left an impression. She was one of the few people who had zero qualms about speaking her mind – and that is one of reasons why I admired her.
Outspoken Advocate
I got to know Quinlan through the early #hcldr tweetchats that we hosted (and still host) on Tuesday nights at 8:30pm ET. At the time, I had never seen someone who was so forthright and direct when expressing healthcare opinions. No matter the topic, Quinlan had piercing insights to share.
Here is one of her first tweets on the #hcldr tweetchat (and emblematic of Quinlan’s persona):
System, and care, is so f’ing fragmented that no one knows real numbers. #hcldr
— Mighty #HeathenSlut Casey🇺🇦🌟 (@MightyCasey) July 24, 2013
Quinlan was an outspoken advocate for better healthcare. She advocated for many improvements including: more patient involvement in care decisions, improved access to data, better privacy protection, more accountability from providers/payers/employers, medication affordability, and more patient-led innovation. She was a true believer in the phrase: “Nothing about me without me”.
Quinlan never minced words and was almost always spot-on in her assessment of the situation. I will never forget sitting beside her in breakout sessions and hearing her both heckle the presenter when they made incorrect/inane statements and praise them when they said something insightful. She definitely leaned into her reputation as a “loud-mouth”…and those of us who knew her, loved her for it.
The QR Code
In addition to her strong advocacy and speaking-truth-to-power, Quinlan was well known for the tattoo of QR code on her chest. That QR code was linked to a website where she had documented her medical history and her advanced directives. You can read more about why she did it here: Why I got a QR code tattooed on my sternum
The tattoo was quintessential Quinlan. With it, she took the power away from healthcare institutions and placed it firmly where she believed it should be – with herself as a patient. Her QR code was a not-so-subtle way to stick it to the entire healthcare ecosystem that was too slow and too disinterested in solving access problems for patients.
You can see the QR code in this photo from 2015.
Renaissance Woman
My most vivid memory of Quinlan comes from 2015 when I first met her in-person. We both attended Regina Holliday’s Cinderblocks event in rural PA. It felt like meeting an old high-school friend. I was immediately fascinated by all of her stories about her past.
Over lunches and dinners, I learned that she was a comedian, a journalist, a filmmaker, an editor, an artist, and an activist. I remember sitting down with her at a local restaurant and listening to her stories until we closed the place. We snacked on olives and cheese the entire time. I think it is fitting that whenever I think of Quinlan my mind immediately goes back to this quiet moment when she was sharing her stories.
Quinlan’s Legacy
Quinlan was an inspiration to so many amazing people. She may be gone, but her legacy lives on in those she affected. She taught us that it’s okay to speak up and be heard. She showed us that speaking from the heart was always the right thing to do. She personified living out loud.
I will miss her dearly.
Below is a small selection of the tributes that have been pouring in online for Casey Quinlan.
I am so sad to tell you that @MightyCasey died this morning at 10:18. Her sister and cousin Joe were there all night and were still with her this morning. They report that her passing was peaceful.
— Jan Oldenburg ☮️ (@janoldenburg) April 25, 2023
“Nothing about patients, without patients.”
I’m forever going to miss this mightiest of voices in the #patientadvocacy world. Rest in power @MightyCasey 💔…https://t.co/L7r8cOcXiK#hcldr #hdpalooza #healthdata #pinksocks #fuckcancer #bcsm pic.twitter.com/K3Yo5PFRJP
— Rasu Shrestha MD MBA (@RasuShrestha) April 25, 2023
Hard to imagine the world without #mightycasey – friend, fierce healthcare advocate, lover of pastrami, truth-to-power teller, & f’in funny. Love you Casey. It was an honor & pure fun #s4pm @janoldenburg @MLMillenson @Colin_Hung @jsonin @SterlingHIT @HealthHats @Cascadia pic.twitter.com/rS6e0HS2c1
— Geri Lynn Baumblatt (@GeriLynn) April 25, 2023
I will forever be the kid in your lap.
Rest in power & all the sass dear friend.
We got you from here.
Love you @MightyCasey ❤️#FuckCancer pic.twitter.com/QgKWcMcrMd
— Enlightening Results 💡 (@GraceCordovano) April 25, 2023
Power to the #patients 🙌
Thank you @MightyCasey for making it possible. Your legacy is my remit, and I will honor you every. single. effing. day. I promise ❤️ pic.twitter.com/Tuysl4QyeL
— Stacy Hurt (she/her)🌻 (@stacy_hurt) April 25, 2023
I wrote this and painted this in 2011. In this painting is @MightyCasey Quinlan We shall miss you my friend.
“To the far right is Casey Quinlan. She seems to be the sky and space itself. She surrounds the figures in the scene. Do you know Mighty Casey? She wrote Cancer for… pic.twitter.com/l5FQB7PF7c— Regina Holliday (@ReginaHolliday) April 25, 2023
Feeling grief with death of @MightyCasey this a.m. & gratitude for having known her #GuttedGrateful
LOVE this pic. While Linnea & Casey were different in SO many ways, they both had a speak-your-mind-and-take-no-shit tenacity that has had a lasting effect on advocacy & on me💔 pic.twitter.com/jZnjQguJDL— Stacey Tinianov (she/her) MPH, BCPA (@coffeemommy) April 25, 2023
One patient can make a difference. Today I honor the life of @MightyCasey a warrior who inspired #patients to stand up and advocate…
National #LupusAdvocscy Summit proving that #RisingVoices together matters.
Grateful to @LADAOrg and @LupusOrg for the opportunity to share. pic.twitter.com/0Ia2Rql5jL— Amanda G (@LAlupusLady) April 25, 2023
Every time think about this poem, I hear @MightyCasey.
The memory that pops up has varied. Today, it’s from our visit on the 10th – squeezing hands, and both saying “Love you to death.”
I can’t believe you’re gone, but I know that I’ll miss you always, my friend. 💜 pic.twitter.com/3ct7TCD4lL
— Grayson (he/they) (@GraysonGoal) April 25, 2023
Shout-out to Jan Oldenburg
A huge shout-out to Jan Oldenburg @janoldenburg who was one of Casey’s caregivers over the past several months. She helped Casey get her affairs in order and kept everyone updated with near daily updates. Thank you Jan for being there for Casey.