Robert felt winded climbing stairs. At 76, he attributed his fatigue to age. He thought his heart medications needed adjusting. His cardiologist agreed, tweaking his blood pressure pills. Six months later, Robert collapsed. In the ER, doctors found his heart walls dangerously thickened, stiff as leather.

A simple nuclear scan revealed the truth: transthyretin amyloid cardiomyopathy, or ATTR-CM, a progressive disease where misfolded proteins infiltrate the heart. Had anyone suspected it earlier, a single medication (tafamidis) could have slowed the damage that followed. He could have lived much longer.

A hidden epidemic

Robert’s story isn’t rare; it’s unfortunately common. A 2024 Amyloid study found that between 10 percent and 18 percent of older adults with heart failure have unrecognized ATTR-CM, a condition most physicians fail to consider. This affects the elderly even more. A 2021 study in JAMA Cardiology reported prevalence climbing to 21 percent in those aged 90 or older with increased ventricular wall thickness. These represent tens of thousands of Americans living with a treatable disease while their doctors chase the wrong diagnosis.

This truly harms lives. Analysis of patients in the placebo group in the ATTR-ACT trial (which led to FDA approval of tafamidis for ATTR-CM) revealed a median survival of just 2.5 years for hereditary ATTR-CM and 3.6 years for wild-type disease without treatment. A 2021 literature review in Cardiology and Therapy documented that diagnosis typically comes 3.4 years after initial cardiac complaints for wild-type ATTR-CM. This means many patients die before anyone identifies what’s killing them. During this period, patients are often shuffled between specialists, accumulating diagnoses of “normal aging” or “idiopathic heart failure” while the real culprit steadily destroys their hearts.

The diagnostic gap

This often happens because of how similar ATTR-CM is to standard heart failure. The symptoms, such as shortness of breath, leg swelling, and fatigue, are effectively the same. Additionally, decades-old training taught cardiologists that amyloidosis was incredibly rare and uniformly fatal. Neither statement is true anymore. ATTR-CM accounts for roughly one in seven cases of heart failure with thickened heart walls in older adults. Thankfully, since FDA approval in 2019, we’ve had tafamidis, a medication that stabilizes the misfolded proteins and significantly reduces mortality. ATTR-CM is no longer a death sentence, but only if we find it.

Unfortunately, there is a massive gap between this knowledge and medical practice. Most patients with heart failure never undergo testing for ATTR-CM. There’s no systematic screening, no clinical pathway prompting physicians to look. Cardiologists order echocardiograms, stress tests, and cardiac catheterizations, but they rarely conduct nuclear imaging or blood tests that would reveal amyloid deposits. By the time someone thinks to test, the disease has often progressed beyond optimal treatment windows.

The solution exists, waiting to be deployed. A two-step screening approach could transform outcomes: Measure NT-proBNP levels (a simple blood test already widely used in heart failure management), then trigger nuclear imaging with technetium-pyrophosphate for elevated levels combined with thickened heart walls. A 2020 American Heart Association statement established this as the diagnostic standard, allowing noninvasive diagnosis with 100 percent specificity when grade 2 or 3 cardiac uptake is present.

The economics of early detection

The economics favor early detection. Tafamidis costs approximately $225,000 annually, what JAMA called “the most expensive cardiovascular drug ever approved.” But consider the negatives of recurrent hospitalizations. Admissions for heart failure average $15,000 per stay. Since these patients without treatment are hospitalized repeatedly, years without diagnosis would accumulate. Early diagnosis means starting treatment when it’s most effective, preventing years of hospitalizations while extending life and independence.

A three-pronged solution

Closing this gap requires coordinated action across three fronts: reimbursement policy, clinical infrastructure, and medical education.

First, Medicare must establish targeted ATTR-CM screening programs in geriatric and cardiology practices nationwide. Specifically, all Medicare beneficiaries aged 75 or older presenting with unexplained heart failure should receive reflex NT-proBNP testing and, if indicated, coverage for nuclear imaging. Additionally, the Centers for Medicare & Medicaid Services (CMS) should create a distinct billing code for ATTR-CM screening panels and remove the prior authorization requirement for nuclear imaging that currently delays diagnosis by weeks.

Second, we need clinical infrastructure to support systematic screening. CMS should fund electronic health record decision support tools that automatically flag high-risk patients and prompt physicians to order appropriate testing. Additionally, quality reporting programs like the Merit-based Incentive Payment System should include ATTR-CM screening rates as a performance metric for cardiologists treating elderly heart failure patients.

Third, medical education should catch up with clinical reality. The National Institutes of Health (NIH) should fund training programs ensuring cardiology and geriatrics fellows understand current ATTR-CM diagnostic guidelines. Professional societies like the American College of Cardiology should also develop screening algorithms integrated into heart failure treatment pathways. This would increase diagnosis rates for ATTR-CM in patients with heart failure symptoms.

These three aspects involve reimbursement, infrastructure, and education. These are inextricably connected. Reimbursement without education leaves physicians unaware of when to screen. Infrastructure without reimbursement creates financial barriers. Education without infrastructure provides knowledge but no practical pathway to implementation. Only by addressing all three simultaneously can we transform ATTR-CM detection from the exception to the standard of care. This is how we save lives.

Closing the bridge

Robert’s cardiologist was a good doctor. She followed guidelines, adjusted medications appropriately, and managed his heart failure by the book. She simply didn’t know to look for ATTR-CM because the system never taught her to, never reminded her to, and never made it easy to do so.

That’s the tragedy here. This isn’t about individual failure. It’s about systematic failure. Thousands of patients are dying not because medicine lacks answers, but because we haven’t built the infrastructure to deliver them. We know what causes their heart failure. We know how to diagnose it. We know how to treat it. What we lack is the bridge connecting knowledge to practice.

A blood test could save them. The question is whether we possess the will to make it standard of care.

Radhesh K. Gupta is a health policy advocate.