Editorial Piece: PICCPerfect

Emily Levy | Co-Founder of Mighty Well

When you’re a newly turned 21-year-old college student, New Year’s Eve is a veritable highlight of the year. It’s a night to dress up, drink champagne and dance with your friends until the sun comes up. However, as the sun rose on the first day of 2015, I was not out dancing. As I lay in bed and scrolled through social media the following morning, swiping through an endless sea of smiling faces, I felt only an overwhelming sadness. My face was not among them because I was two days out from having my first PICC line placed and recovering at my parents’ house. College was hard enough, but add to that a diagnosis of tick borne illness, EBV, Hashimotos, CIDP, and POTS plus a PICC line? For the first time, I felt the full weight of the procedure upon me, and it seemed almost insurmountable. Almost.

In the months leading up to the procedure, my worries hadn’t been nearly this great. I had been working with my Lyme-literate nurse practitioner for months, trying to find the right cocktail of antibiotics and supplements to relieve my symptoms. Nothing was working, and so we had arrived at the next step: a PICC line. Of course, on one hand, it was a reminder that I was critically ill. On the other hand, I was excited, because it felt like the next stop on my journey toward healing. After speaking with numerous patients who found success with a PICC line, I felt hopeful. It was during this time that I became fascinated with the inner workings of the device, truly kickstarting my investment into changing the landscape for other patients with vascular access devices.

As I learned how to best protect my PICC line, I learned that the best any professional could recommend was a cut-off sock or stockinette. I was a young college student and a member of a scholarship program who often spoke in public settings; I couldn’t accept this. Thankfully, because of this program, I was encouraged to solve a problem in my own life through social entrepreneurship. I had my idea, a device to protect a PICC line, enabling me to live my life safely, sanitarily and securely, all while maintaining my style. The next step was execution.

Holding the prototype for the PICCPerfect in my hands for the first time was an incredible feeling. While I wished so badly that I could have had something like this when my PICC line was placed, I was excited for the next generations of patients who would never have to suffer the cut-off sock. It was such an invigorating feeling to know the only thing left to do was to get it in the hands of patients.

Thankfully, I had a college mentor who found the Association for Vascular Access (AVA) and encouraged me to attend a local network meeting. With my PICCPerfect prototype in hand and some light nerves in my stomach, I bought a ticket and showed up. As the only patient present, I was invited to share my story with the room. I soon became acquainted with the network and national organization. Ultimately, this first network meeting led to great amounts of growth, both for myself and for Mighty Well, the adaptive-clothing wear brand I co-founded.

Throughout my journey as a patient, AVA has continually enabled me to champion my best treatment options. I fully trusted AVA and its members from the beginning. AVA members are the authority on vascular access, from start to finish. Everything from choosing the right device, to lifestyle, medication management and, ultimately, how the device is eventually removed. AVA helped me advocate to get a port placed. Then with the help of VA specialists, I learned how to access my own port. I cannot overstate how empowering it has been to regain some control of my body, medication and devices.

This has been particularly crucial for me throughout

EMILY LEVY, CONTINUED FROM PREVIOUS PAGE

the COVID-19 pandemic. I, like many other chronicillness patients, struggled with a lot of anxiety. While others were safely bunkered in their homes, I had to receive IVIG weeks into lock-down and had no choice but to allow someone into my home to administer my infusion. I had a great relationship with my home-care nurse, but of course I struggled with feeling safe and letting someone into my bubble. Ultimately, I needed my infusions, but it was a process to relearn trust in medical professionals. I truly don’t know how I could have survived the past year without the knowledge I gained from AVA. This knowledge helped me to both trust the medical professionals in my life and to trust myself with my own care.

Often, patients feel a loss of agency in their bodies, which can be both discouraging and frustrating. Patients deserve to advocate for themselves, from the device that’s chosen, to the medication they take, to figuring out how to live a fulfilling life with a device. I will always be grateful to AVA for giving me this knowledge and empowering me to champion my own care.

Another consequence has been the knowledge of how to spearhead the best possible products at Mighty Well. Now, following years of product development, with insight from both top vascular clinicians as well as patients, Mighty Well will release a product to take the PICCPerfect to the next level. I cannot wait to continue to work alongside AVA to get these devices and care products in the hands of patients who so desperately deserve the same feeling of agency and freedom I now have.

ABOUT THE AUTHOR

Levy is an award-winning social impact entrepreneur, disability advocate, and public speaker. She cofounded Mighty Well based on her experience as a patient living with Lyme disease and vascular access devices. She has been honored by worldclass entrepreneurial programs, including the Cartier Women’s Initiative Awards, Morgan Stanley Multicultural Innovation Lab, MassChallenge, and is currently the youngest member of Babson College’s Hall of Fame as a Rising Star. Mighty Well creates innovative products in the Adaptive Wear market, which is expected to reach $393B by 2026 (CBS News), for the 133 million Americans who live with a chronic condition. Mighty Well applies sportswear fabric technology to the medical industry and is building a digitally supportive community of Friends in the Fight for our consumers. The PICCPerfect Pro was given FDA approval as a Class 1 device in 2020.

Emily has spoken for: Fidelity Investments’ Boundless Summits, Becton Dickinson (BD), MedComp, The Association for Vascular Access, The Infusion Nurses Society, Tuft’s Health Plan, The United States Association for Small Business and Entrepreneurship, MassChallenge, Babson College, Wentworth Institute of Technology, Endicott College of Nursing, and other distinguished organizations.

You can read about Mighty Well in The New York Times, The Wall Street Journal, Shondaland, and Forbes- to name a few.

Connect: Emily@Mightywell.com

The mission of Mighty Well is to help patients and their caregivers turn sickness into strength. We are leading the global charge that changes the perception of patients from victims to fighters.

We do this by improving the experience of being a patient. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence - and content that can help you get through the good times and the bad.