Jess Jacobs was many things. She was a director with Aetna's Innovation Labs, an advocate for improving the healthcare system and a blogger who shared personal stories about receiving care for the two rare conditions she battled, among others. She died in California on Saturday at 29, and afterwards the hashtag #UnicornJess began to trend on Twitter, as friends and admirers highlighted her important efforts to bring attention to her dissatisfying experience navigating the U.S. healthcare system with chronic illness.
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"If you've wondered why I've been under the radar lately, look no further than my odyssey of medical maladies; in addition to my ongoing struggle with [postural orthostatic tachycardia syndrome], this year I've had: a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions," Ms. Jacobs wrote in one of the final posts on her blog in November 2015. "Since I'm a numbers person, I downloaded my claims data from my insurer to get a better idea of how much time I've wasted in the healthcare system since January 2014."
Following this excerpt, the post demonstrates in detailed graphs exactly how much time Ms. Jacobs spent trying to receive care for her conditions. Ultimately, she calculated she spent 1,540 hours, or 64.2 days, waiting for care instead of receiving it in 2015, according to her post.
One healthcare professional who took notice after Ms. Jacobs' death, retweeting numerous tweets from other users and posting himself about her work shedding light on the ways healthcare in the U.S. can fail patients, was CMS' Acting Administrator Andy Slavitt.
If you want to read a patient-centered analysis of health care experience, read this by @jess_jacobs. She just died.https://t.co/KC8rwNIon8
— Andy Slavitt (@ASlavitt) August 15, 2016
Another excerpt from Ms. Jacobs' blog post entitled "On Wasting My Time – The Numbers," illustrates in heartbreaking detail how poor organization and a mess of inefficiencies in the way her care was delivered worsened her quality of life.