From Father to Advocate: Rethinking Value in Healthcare
When your child is diagnosed with a chronic illness, healthcare stops being a system. It becomes your world.
Since my son Sebastian was diagnosed with Type 1 Diabetes (T1D) at age four, our family has lived at the intersection of medicine, technology, emotion, and resilience. What used to be theoretical concepts—cost of care, quality outcomes, care coordination—are now the rhythms of our daily life. In managing his condition, I’ve learned something that no textbook or conference panel could fully explain: true value in healthcare begins and ends with the lived experience.
The Metrics We Don’t Measure
Healthcare is obsessed with metrics: A1c levels, ER utilization, medication adherence, cost per encounter. All useful—but incomplete. What about the cost of sleepless nights for parents adjusting insulin doses in the dark? The emotional labor of educating school staff about a condition they’ve never encountered? The heartbreak of watching your child feel different, left out, or just plain exhausted?
These are the unquantified costs. And if we’re serious about value, they belong in the equation too.
Technology Is a Tool—Not a Finish Line
Don’t get me wrong—technology has saved our family. Continuous Glucose Monitors (CGMs) and insulin pumps have changed the game. They’ve caught lows we didn’t see coming, helped Sebastian stay in range during school days, and given us the confidence to let him be a kid again. But every innovation comes with a steep learning curve, financial barriers, and emotional trade-offs. We’re a family blessed to have TRICARE insurance, which helps cover the cost of technology—many families aren’t as lucky.
We’ve learned that true value comes not from simply having access to technology—but from systems that make it usable, affordable, and integrated into real-life care.
Education Is Everything
Sebastian’s diagnosis didn’t just send us home with a prescription—it launched us into an education we never signed up for. We became amateur endocrinologists, nutritionists, behavioral health advocates, and data analysts.
And we learned that the education gap isn’t just about patients. It’s also about providers, teachers, coaches, and neighbors. When people understand, they show up. They support. They make space. That’s what value looks like, too—shared understanding that leads to shared responsibility.
The worst thing someone can do is show up uninformed and say, “You’re so lucky” or “He’ll be fine.” That’s not helpful—it’s dismissive. And it’s exactly why awareness matters.
A Holistic Lens: What Value Really Means
To me, value in healthcare isn’t a buzzword—it’s a mindset. It’s the ability to:
- Prevent the preventable.
- Support the inevitable.
- Honor the individual.
It’s systems that don’t just treat illness but sustain wellness—physically, mentally, socially, and financially. It’s care teams that look beyond the chart and ask how your child is doing in school, how you’re holding up as a parent, and what’s missing from the support network.
It’s innovation guided by empathy, not just ROI.
The Personal is Transformational
HIGH—HIGH—HIGH.
The Dexcom alerts slam through the quiet and spike my anxiety every single time. It means Sebastian’s blood sugar is over 400. He’s not getting enough insulin. Fatal if not corrected back into normal range.
Last night, around 2 AM, the HIGH alert went off again and again until I finally woke up. It had been reading HIGH for over an hour. That hits hard when I don’t catch it fast. Makes me feel guilty. Helpless. Like I failed to protect my son.
I checked the pump—no issues. Did a finger poke on my sleeping son—still HIGH. Why?
Then I noticed something with my flashlight: an orange peel under the bed. And instantly, I knew. It wasn’t a tech failure.
Sebastian had woken up, grabbed an orange as a snack, and didn’t dose for it.
A single orange. About 15 carbs and 12 grams of sugar. Just enough to push his numbers sky-high.
Now imagine needing to remember to dose for that—and then wait 15 to 20 minutes—every time you want a snack.
Sounds simple, but try living it. Every. Single. Day.
This isn’t just about snacks or sensors. It’s about systems—and how we live within (or fight against) them.
Every blood sugar reading, every mealtime calculation, every hard conversation about Sebastian’s future—these moments have made me a better father. But they’ve also made me a better leader.
Because when you’ve lived the system, you don’t just want to improve it—you have to.
You know what happens when systems fail. You’ve felt what it means when they succeed. And you carry both truths into every decision you make about what should come next.
What Every Family Deserves
I don’t write this for sympathy. I write it because there are thousands of families like mine, and too many are navigating these challenges without the resources, access, or voice they deserve.
If we want to build a healthcare system that delivers real value, we need to start by listening to the people living it every day. Because healthcare isn’t about the system—it’s about the story. And every story deserves better outcomes.
For as long as I walk this path with my son, I will fight to make healthcare more human, more intelligent, and more just—because every family deserves better.
If interested, check out my latest Value Management in Healthcare book because healthcare needs value, not just volume.
Or you may be interested in this other blog on Is Healthcare a Right or a Privilege