When medicine lags: how US healthcare falls behind, what it costs us and how to fix it Written by Kaily Ball

https://rarerevolutionmagazine.com/when-medicine-lags-how-us-healthcare-falls-behind-what-it-costs-us-and-how-to-fix-it/ Kaily Ball is a writer, researcher and patient advocate. She gives her insights into the healthcare challenges people with rare conditions face in the US and outlines some of the global models she feels could be implemented to improve diagnosis and care The United States is home to some of the world’s most brilliant researchers and some of the most advanced medical technologies ever created.1,2 Yet for patients navigating complex, rare or poorly understood conditions, the experience often feels primitive.3,4 Diagnoses come late or not at all, and treatments are delayed.5,6,7 All the while, families drain their savings and watch their health deteriorate.8,9 Here’s the paradox: Americans spend more on healthcare than anyone else in the world—an average of $13,432 per person in 2023, nearly double the $7,393 per person that other wealthy countries spend.10 Healthcare eats up 17.6% of US GDP, compared to about 11% elsewhere.11,12 Yet despite the highest price tag, we consistently rank near the bottom for access, equity and outcomes.13 It’s not that better care isn’t possible. Other nations have shown what happens when systems modernise: patients are diagnosed earlier, treated faster and supported more fully, often at a fraction of what we pay.14,15,16,17,18 Thoracic outlet syndrome: a tale of two standards When I was working through my own thoracic outlet syndrome diagnosis, I stumbled across something that perfectly illustrates the problem. The US and Europe don’t even define the condition the same way. Here in the US, to be diagnosed with arterial thoracic outlet syndrome (aTOS), you need proof of damage—a clot, an intimal injury or an aneurysm that shows up on imaging. Without that, even if your arteries are clearly being compressed, your condition is classified as neurogenic TOS (nTOS) instead. That label limits treatment options and delays the interventions that could prevent lasting damage.19,20 In Europe, compression plus symptoms is enough to call it what it is: aTOS. Their clinicians treat based on what’s actually happening physiologically, not just what’s visible on an image. That difference means earlier recognition, earlier intervention and fewer patients forced to deteriorate before they’re “sick enough” to qualify for help.21 That delay isn’t just cruel. It’s expensive. Delayed diagnoses lead to longer clinical journeys, redundant testing and more severe complications. All of which drive up costs that, in the US, are already the highest in the world.6