CercaHealth Foundation
When our child became seriously ill, my wife and I assumed one of the best-resourced medical systems in the world would have a clear path to an answer — a test, a specialist, a plan. What we learned instead, slowly and at great cost, is that for people with complex, chronic, multi-system illness, that path often does not exist.
Eventually our child was diagnosed with the cluster of conditions some clinicians call "the pentad" — including hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), dysautonomia, and severe GI dysmotility. And here is the hardest part to absorb: we are among the lucky ones. We reached those diagnoses in only a few years, when most families wait far longer — often a decade or more — if they get answers at all.
But a diagnosis is not the same as help.
It took years more to find a medical team willing to treat our child — clinicians who believed the illness was real and would take on a case this complicated. We are not at a cure yet; that search continues. But after long hospitalizations, multiple ER visits, multiple surgical procedures, and hundreds of doctor consultations, we finally have a team fighting alongside us. And somewhere in that fight, we realized we were not an unlucky exception — we were part of something enormous, hidden in plain sight.
This is not a small problem, and it is not a rare one. Six in ten American adults live with a chronic disease.1 Take hypermobile EDS, one of our child's diagnoses: long dismissed as rare, it is nothing of the kind. A national study found at least 1 in 500 people carry a diagnosis of EDS or a related hypermobility disorder — and urged that the "rare" label be dropped, since the true number is surely higher given how often it is missed.2 Patients routinely wait more than a decade for that diagnosis.3 And since 2020, long COVID has added at least 65 million more people worldwide.4 Behind every one of those numbers is a family like ours.
What we lived
For most families, a diagnosis is where care begins. For us it was a years-long labyrinth — and the delay is not just exhausting, it is dangerous. An estimated 795,000 Americans die or are permanently disabled each year from misdiagnosis, and those most often missed are exactly the patients with complex, overlapping symptoms.5
Along the way we met medical gaslighting: the dismissal and delay patients with contested illnesses routinely face.6 Across many of those visits, we were disbelieved — told, in different ways, that our child wasn't really sick. Some doctors ghosted us; others "fired" us as patients once the case grew too complicated. When tests come back "normal" but a child is visibly suffering, the system too often decides the problem is imagined rather than beyond its current knowledge.7
And even with answers, the system was not built to act on them. Care is scattered across specialists who never speak to one another; visits last fifteen minutes; reimbursement rewards volume, not the slow work of untangling a complicated case.
When the physicians walk away
The hardest thing we came to understand is that the few physicians who can help are disappearing. As pain specialist Dr. Pradeep Chopra has written, the small group of doctors who treat conditions like our child's is stepping back — retiring early, closing to new patients, or leaving — worn down not by the science but by the environment: the documentation, the insurance fights over whether a diagnosis is even "legitimate," the skepticism of colleagues.8 The national data confirms the strain: physician burnout has eased from its 2021 peak of nearly 63%, but at 45.2% in 2023 it is no better than before the pandemic (43.9% in 2017) and still higher than in any other profession — a "recovery" that only returns doctors to an already-broken baseline.9 Meanwhile, the U.S. heads toward a shortage of up to 86,000 physicians by 2036.10
Many who remain have left insurance networks for cash-pay practices, for two telling reasons: insurers make it hard to authorize the off-label medications and novel therapies these patients need when research lags years behind the illness, and standard reimbursement won't cover the two-hour visits and coordination their care demands. Going cash-only is often the only way for a dedicated physician to keep practicing this medicine — but it puts the best help out of reach for families who can't pay out of pocket. The same pressures grinding down patients are grinding down the doctors who serve them.
Becoming the glue — and the cost of it
Somewhere in those years, our roles changed. We became full-time, unpaid, untrained care coordinators — synthesizing and summarizing each specialist's records to prepare for the next, reconciling conflicting advice, and fighting prior authorizations and overturning denials. We had to become fluent in both insurance-speak and medical nomenclature. Chronic illness upends a family's whole life: everything gets scheduled around precious doctor appointments and medical procedures. In a fragmented system, someone has to be the glue that holds it all together — and by default it is the family, filling a role that in American medicine formally exists for no one.
The financial toll is its own shock. In our first year alone, our insurance claims topped $1 million — driven by multiple surgeries, repeated ER visits, and a single hospitalization of more than 60 days. Our out-of-pocket costs run into the tens of thousands of dollars a year, on top of income lost to caregiving. And we are far from alone: the U.S. leans on roughly 53 million unpaid family caregivers, whose labor was valued at $600 billion in 2021.11
Here is the paradox at the center of it all. A system that "saves money" by rushing complex patients through — declining the test, deferring the referral — saves nothing. It defers cost and multiplies it, through exactly the ER visits, hospitalizations, and lost productivity we lived. One Harvard economist estimated long COVID alone has cost the U.S. economy $3.7 trillion, with millions pushed out of work.12 These patients are expensive precisely because the system was never built to care for them.
Why we built CercaHealth Foundation
Everything above drives our mission. There is no single crack in this system; there are many — the delays, the dismissals, the fragmentation, the coordination dumped on families, the vanishing specialists. Each needs its own fix.
This is where my experience comes in. For more than 25 years I have built healthcare automation, and I have seen firsthand where technology goes: to the largest, most profitable opportunities, rarely to the patients who fall outside them. I am not a clinician, but I know this system's inner workings and how to build technology inside an environment this complex. That is what CercaHealth Foundation is built on — a belief that we can improve patient outcomes, and ease the burdens burning out physicians, by removing friction and automating the choke points these patients and their care teams face every day.
In practice, that means building focused programs for the specific choke points these families face: programs that help patients avoid the harmful medication excipients that can trigger reactions; programs that let patients safely use commercial AI tools for understanding their records, diagnosis, and care coordination — without surrendering their privacy or security; and programs that help physicians and researchers level the field with insurers on prior authorizations and denial turnovers for these complex cases. Each targets a different crack in the system.
That same market logic explains why the gap has gone unfilled — and why closing it takes a nonprofit. In market terms these patients are the opposite of an opportunity: complex, spread across many smaller conditions, never lucrative to serve.
The capability to help exists; the incentive does not.
Free of the demand for margin, a nonprofit can build for the underserved precisely because no one else will — putting people over profits and doing the hard, unglamorous work of serving the families the system has left behind.