Op-Ed: When Advocacy Is the Only Medicine That Works

On a recent Sunday morning, I walked into an urgent care clinic with a painful, discolored swelling in my leg — a leg already battered from years of cycling and motorcycle accidents. I wasn’t just worried. I was informed. The signs pointed to a potentially life-threatening condition: deep vein thrombosis (DVT) — a clot that, if dislodged, can travel to the lungs and cause a fatal pulmonary embolism.

I had just helped my mother navigate her DVT diagnosis, so I knew the stakes. But even with that knowledge — even as someone who’s written over 600,000 words on senior health and built a custom AI tool trained on my medical history — I had to fight, insist, argue, and outmaneuver the system at nearly every step just to receive the care I needed. And I know most people can’t or won’t do that, which is exactly the problem.

Urgent care was my first stop. I pressed the nurse practitioner to issue an ultrasound order — which she did — but I later found that it had been sent to the wrong lab and the lab contact information was outdated. When I finally reached someone, they said they had no record of the order. I had it resent. The soonest appointment? Tuesday afternoon. I knew that was too risky.

So I went to the ER.

There, triage confirmed my case was urgent. Blood work, imaging orders, more waiting. When it came time for the duplex ultrasound, the technician insisted on scanning only the inside of my leg (femoral vein) — the standard DVT protocol. But the swelling and discoloration were on the front. When I asked her to check that area, she resisted. It wasn’t in the guidelines. I had to convince her — calmly, but firmly — that ignoring a visibly affected area was indefensible. Only then did she check it.

That additional imaging led to the diagnosis: a partial occlusion in the greater saphenous vein.

Then came the fight for treatment. The ER prescribed Eliquis, a critical blood thinner, but the prescription wouldn’t show up in the pharmacy app. We waited. We called. When it did show up, it was repeatedly delayed because they were busy. We finally went in person, only to learn the starter pack wasn’t in stock and wouldn’t be available for 24 hours. A regular prescription could be filled immediately — but only if the ER rewrote the prescription. More calls. More pleading. Eventually, the pharmacy handed me the medication that would prevent a deadly clot from traveling to my lungs.

All told, I spent nearly eight hours navigating a maze of miscommunication, protocol rigidity, and bureaucratic indifference — and that was before the $2,000 bill arrived, even with insurance. We knew it would be costly to go to the ER, but time was of the essence, and we are fortunate that we could afford it.

I don’t tell this story to bemoan my challenging situation. I tell it to expose a reality: our healthcare system does not serve the passive or the under-resourced. It punishes them by withholding timely and effective healthcare.

If I didn’t know how to advocate for myself, if I hadn’t recognized the symptoms, if I hadn’t been able to calmly escalate my concerns, if I hadn’t had my wife with me to help push through the red tape every step of the way — it’s entirely possible I wouldn’t have received treatment in time.

But what about those who can’t?

What about the elderly person who lives alone and doesn’t understand the signs of DVT? What about the single parent juggling three jobs who can’t afford to take a whole day to sit in an ER? What about the person with limited English, or with a disability that makes communication harder? What about the millions who don’t have insurance at all?

This system — fragmented, profit-driven, hostile to urgency unless you’re bleeding out on the floor — doesn’t just need reform. It needs a reimagining.

We need:

• Better care coordination between providers, labs, and pharmacies.
• Updated digital infrastructure to prevent things like wrong numbers and missing prescriptions.
• Patient advocates embedded in hospitals and clinics to help navigate care, especially for vulnerable populations.
• Protocols that allow room for professional judgment, not just checkboxes.
• And above all, universal access to care that doesn’t depend on your assertiveness, income, or digital savvy.

Because no one should have to be an expert in medicine, logistics, and conflict resolution just to avoid dying from a blood clot.