Addressing disparities in the diagnosis of transthyretin amyloid cardiomyopathy (ATTR-CM) and access to care is critical to improving patient outcomes and reducing health inequities, according to a review published recently in Current Cardiology Reports.
While ATTR-CM was once considered rare, growing evidence suggests that it is significantly underdiagnosed. Delayed detection and limited awareness among healthcare providers mean that many patients remain untreated despite the availability of effective therapies.
ATTR-CM occurs when misfolded transthyretin proteins form amyloid deposits in the heart, leading to symptoms of heart failure. This condition is particularly prevalent in older adults and individuals of African descent, yet significant barriers prevent timely diagnosis. Patients may see multiple doctors before receiving an accurate diagnosis, as symptoms often mimic those of more common conditions such as hypertension or diabetes-related heart disease. Many clinicians remain unaware of ATTR-CM, further contributing to under-recognition.
“Disparities in ATTR-CM diagnosis and management are driven by a range of factors including genetics, race, socio-economic status, geography, and access to specialized care,” the review’s authors explained. “These factors contribute to delayed diagnoses, limited treatment options, and worse outcomes, which disproportionately affect marginalized populations.”
Read more about treatment and care for ATTR-CM
Geographic disparities also play a role in delayed diagnosis. Studies show that patients living near amyloidosis specialty centers are more likely to be diagnosed, while those in underserved areas remain overlooked. Access to advanced imaging techniques such as bone scintigraphy varies by region, affecting rates of detection.
In addition, women may be underdiagnosed due to differences in heart structure that are not always considered in standard diagnostic criteria.
Even after diagnosis, treatment barriers persist. New disease-modifying therapies, such as tafamidis and acoramidis, offer hope, but high costs and complex approval processes prevent many patients from obtaining them. Medicare and Medicaid beneficiaries often face substantial out-of-pocket expenses, making these treatments financially inaccessible for some. Meanwhile, clinical trials have historically lacked diversity, limiting the understanding of how these therapies work across different populations.
Addressing these challenges requires a multifaceted approach. Increasing physician education, expanding diagnostic testing availability, and advocating for broader insurance coverage could help more patients receive timely treatment. In addition, promoting participation in diverse clinical trials would provide more inclusive data to guide treatment decisions.
“Collaborative efforts among healthcare providers, researchers, policymakers, and communities are essential to create a more equitable healthcare landscape, ensuring that all patients with ATTR-CM receive timely, effective care,” the authors noted.
By improving awareness and accessibility, patients with ATTR-CM can receive earlier diagnoses and more effective care. Reducing disparities in detection and treatment is essential to ensuring all individuals with the disease have the best possible health outcomes.
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