🚨When the System Makes You Wait for Hope: Surviving the Valley of Death
- maryrburrell
- Nov 18
- 3 min read
When I first started speaking up about my story, I had no idea how much it would teach me.I never imagined my journey could be used to highlight gaps in our healthcare system—or to help push for solutions that give patients real hope.
🫸 The Waiting Game
The truth is, even after the FDA approves a breakthrough treatment, patients often still have to wait years for Medicare to decide if it will be covered. That waiting period is sometimes called the “valley of death.”
I know that valley well.I spent two years there—stuck in limbo with no treatment options. My health was slipping away, and every day felt smaller than the last.
For people like me living with life-threatening heart conditions, years of waiting isn’t an option—it’s a countdown.
🥸 The Numbers Have Faces
According to Stanford Biodesign research, the average gap between FDA approval and Medicare coverage is 5.7 years.Even worse, more than half (56%) of new medical technologies were still waiting for coverage as of early 2023.
That means thousands of patients are caught between hope and help—simply because the system moves slower than the diseases we’re fighting.
👷♀️ Building the Bridge
That’s why policies like TSET (Transitional Coverage for Emerging Technologies) matter.They build a bridge between FDA approval and Medicare coverage, so patients don’t get left behind while the system debates their survival.
What is TSET?It speeds up access to new, FDA-approved medical devices by temporarily covering them under Medicare while more data is collected.It helps make sure life-saving innovation reaches patients faster.
No one should have to wait for hope. 💜
🌁 The Bridge That Will Save Others
When you’re in that valley, every day feels like a gamble — wondering if help will come in time. For me, that bridge finally appeared when access opened for the treatment that saved my life.
It meant I was able to receive care when I needed it most. It didn’t just extend my life; it gave me a second chance at living.
Now, policies like TSET (Transitional Coverage for Emerging Technologies) are being built to make sure future patients don’t have to wait as long as I did. They’re designed to close the gap between FDA approval and patient access, so no one gets trapped in the valley while the system debates their survival.
I was one of the lucky ones. If I were still in that valley today, I would’ve died waiting.
🗣️ Why I Speak Up
I speak up because I’ve seen what timely access can do—and what silence can cost.My story represents thousands of others still waiting in that same valley.
Here’s the truth: Advocacy isn’t just about passing a policy; it’s about people.It’s about bridging worlds—patients and policymakers, science and survival.
⏲️ Time Is Life
We have to act now, because when it comes to heart disease, time is costing lives.
• In the U.S., nearly 942,000 people died in 2022 from cardiovascular disease alone.
• And we know that 62% of patients experienced delayed care from their insurer — with 43% of those reporting worse health because of it.I keep speaking up because my two years in the valley can’t be wasted.
Patients can’t afford to wait— and no one should lose precious time when the bridge is within reach.
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