The Hidden Tax of Rare Disease & Complex Illness

The Hidden Tax of Rare Disease & Complex Illness: Why Medical Devices Must Honor the Lives They Sustain

By Michael Goldberg, Co-Founder & CEO, 12 Brand, Inc. | MediXo By 12 Brand

Have you ever witnessed that moment? A phone buzzes with a medication reminder during a job interview. A child's insulin pump starts beeping during their school play. A grandmother hides her oxygen concentrator when friends visit, choosing breathing difficulties over "being a burden." These aren't just inconveniences—they're daily thefts of dignity that poorly designed medical devices inflict on millions of families.

This is the hidden tax of rare and complex disease: beyond the extreme costs (which make DME reimbursement and insurance coverage absolutely crucial), it's the thousand ways that beige plastic and harsh alarms steal personhood. When someone uses medical equipment five, ten, twenty times daily for life, "functional" isn't enough. When every outing requires a bag of devices that announce illness before introduction, when caregivers spend more time managing equipment than making memories, when beautiful homes transform into clinical spaces—that's when medical devices stop enabling life and start dominating it.

My wife Judi and I founded 12 Brand, Inc. | MediXo By 12 Brand because our lived experience taught us what every family facing rare disease knows: medical devices don't just need to work flawlessly—they need to honor the courage of the people who depend on them. Beautiful design isn't luxury—it's necessity. When done right, it reduces user error, increases compliance, and decreases caregiver burden. Most importantly, it keeps families together. Patients who maintain their dignity and confidence stay home 23% longer. That's not just a statistic—that's birthdays celebrated, bedtime stories told, marriages preserved.

We're building medical devices that whisper instead of shout, that fit into life rather than dominating it. Devices that work so intuitively that exhausted caregivers can operate them at 3 AM. Devices that bring confidence instead of shame to daily life. Not because we're chasing aesthetics, but because we understand that when you're fighting rare disease and complex illness, your tools should fight alongside you, not against you.

The medical device industry has hidden behind "function over form" for too long. But for the 400 million people worldwide living with rare disease and complex illness, for their 1.2 billion family caregivers, form IS function. Dignity IS medical necessity. Beauty IS accessibility. It's time our industry recognized that the best medical device is the one that lets you forget you need it at all.

To my fellow founders, engineers, and designers: these families aren't asking for prettier plastic. They're asking for tools that let them remain themselves. To investors and partners: the next revolution in medical devices isn't just about better sensors or smarter algorithms—it's about finally seeing patients as complete humans who deserve technology that honors their full lives.

And to every patient who's ever felt less-than because of their medical equipment, every caregiver who's watched someone they love shrink from the world: we see you. Your courage deserves better tools. Together, we're building them.

Michael Goldberg lives with Mitochondrial Disease and co-founded 12 Brand, Inc. | MediXo By 12 Brand with his wife Judi to ensure no family faces rare disease without dignity.

Connect at medixo.health