Robert found himself out of breath while ascending stairs. At 76 years old, he linked his exhaustion to advancing age. He suspected that his heart medications required modifications. His cardiologist concurred, adjusting his blood pressure medication. Six months later, Robert suddenly collapsed. In the emergency room, doctors discovered that his heart walls were alarmingly thickened, rigid as leather.

A straightforward nuclear scan unveiled the reality: transthyretin amyloid cardiomyopathy, or ATTR-CM, a progressive condition characterized by misfolded proteins infiltrating the heart. If anyone had identified it sooner, a single medication (tafamidis) could have decelerated the subsequent damage. He could have enjoyed significantly more years of life.

A concealed epidemic

Robert’s experience is not unique; it is regrettably prevalent. A 2024 study on Amyloid revealed that between 10 percent and 18 percent of elderly individuals with heart failure suffer from unrecognized ATTR-CM, a condition that many physicians overlook. This significantly impacts older adults. A 2021 study published in JAMA Cardiology indicated that the prevalence rises to 21 percent among those aged 90 and older with increased ventricular wall thickness. These cases represent tens of thousands of Americans living with a treatable condition while their healthcare providers pursue incorrect diagnoses.

This genuinely damages lives. An analysis of participants in the placebo group of the ATTR-ACT trial (which led to the FDA’s approval of tafamidis for ATTR-CM) indicated 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 noted that diagnosis typically occurs 3.4 years after the initial heart-related complaints for wild-type ATTR-CM. This implies many patients pass away before anyone recognizes what is causing their demise. During this interval, patients frequently find themselves being referred among specialists, accumulating labels of “normal aging” or “idiopathic heart failure” while the true assailant steadily damages their hearts.

The diagnostic disparity

This often transpires due to the similarities between ATTR-CM and traditional heart failure. Symptoms like shortness of breath, leg swelling, and fatigue are virtually indistinguishable. Moreover, outdated training has led cardiologists to believe that amyloidosis is extremely rare and always fatal. Neither assertion holds true today. ATTR-CM represents roughly one in seven cases of heart failure featuring thickened heart walls in older adults. Fortunately, since the FDA approved tafamidis in 2019, we have access to a medication that stabilizes the misfolded proteins and considerably reduces mortality rates. ATTR-CM is no longer an automatic death sentence, but only if we detect it.

Regrettably, there exists a significant gap between this awareness and actual medical practice. Most heart failure patients do not undergo testing for ATTR-CM. There is no systematic screening or clinical protocol encouraging physicians to investigate. Cardiologists typically order echocardiograms, stress tests, and cardiac catheterizations, but infrequently perform nuclear imaging or blood tests that could uncover amyloid deposits. By the time someone considers testing, the condition often has advanced beyond optimal treatment opportunities.

The solution is available, ready to be implemented. A two-step screening strategy could revolutionize outcomes: Measure NT-proBNP levels (a straightforward blood test already commonly used in heart failure management), and then initiate nuclear imaging with technetium-pyrophosphate for elevated levels alongside thickened heart walls. A 2020 statement from the American Heart Association established this method as the diagnostic standard, allowing for noninvasive diagnosis with 100 percent specificity when grade 2 or 3 cardiac uptake is detected.

The financial implications of early detection

The financial rationale supports early detection. Tafamidis costs about $225,000 each year, what JAMA referred to as “the most expensive cardiovascular drug ever approved.” However, consider the downsides of repeated hospitalizations. Admissions for heart failure average $15,000 per stay. As these untreated patients are hospitalized repeatedly, years without a correct diagnosis would accumulate. Early diagnosis translates to starting treatment at its most effective phase, averting years of hospital stays while prolonging life and independence.

A triadic approach

Bridging this gap necessitates coordinated efforts across three areas: reimbursement policy, clinical infrastructure, and medical education.

First, Medicare should implement focused ATTR-CM screening initiatives in geriatric and cardiology practices across the country. Specifically, all Medicare beneficiaries aged 75 or older presenting with unexplained heart failure should undergo reflex NT-proBNP testing and, if warranted, receive coverage for nuclear imaging. Furthermore, the Centers for Medicare & Medicaid Services (CMS) should establish a unique billing code for ATTR-CM screening panels and eliminate the prior authorization requirement for nuclear imaging, which currently delays diagnosis by weeks.

Second, we