Disparities in Amyloidosis Mortality - A Persistent Underdetection?

by Adrienne Mueller, PhD
April 8, 2025

Amyloidsosis Kills

Amyloidosis is a chronic condition that worsens over time. It is caused by the continuous accumulation of misfolded proteins in tissue – eventually leading to organ dysfunction and failure.

The prognosis is extremely poor in cases where the heart is involved. Individuals with untreated cardiac amyloidosis are expected to survive between 6 months and 3.5 years. Even though our standard of care has been improving over time - and this disease is being caught earlier and treated faster – there is a lot of variability in outcomes.

Understanding How

To try to find an explanation for the variability in outcomes, a recent study led by Stanford Cardiovascular Institute-affiliated authors Gracia Fahed, MD and Kevin Alexander, MD and published in JACC: Heart Failure dug into the most recent 5-year death certificate data to look for trends in amyloidosis mortality. By using the CDC WONDER and other databases, the investigators were able to extract information about individuals who died of amyloidosis’ location, likelihood of social deprivation, gender, race, and year of death.

Racial and Gender Disparities in Mortality Rates

This study also showed very clear differences in outcomes based on racial and gender demographics. Men have a higher amyloidosis morality rate than women (7.9 vs 3.4 per million). Additionally, mortality rates were more than twice as high among Blacks compared with White and Asian individuals. This difference may be due to a higher prevalence of genetic variant that is associated with developing a hereditary form of amyloidosis among African Americans.

Geographical Variation in Mortality Rates

There was also clear geographic variation in amyloidosis mortality. The highest mortality rates were found in the American Northeast, whereas areas like the American south, with high socioeconomic deprivation, had much lower amyloidosis mortality rates. Further inspection of the data suggests that geographic variability may be due to the scarcity of amyloidosis centers in the American south. Fewer amyloidosis cases can be detected; therefore fewer amyloidosis-death are reported.

Overall, this study highlights the importance of healthcare access for disease detection and treatment – and the need to provided dedicated health resources to reduce disparities.

Additional Stanford Cardiovascular Institute-affiliated authors who contributed to this study include John Isaiah Jimenez, Nixuan Cai, Xiaokang Wu,  Alexis Edmonds, Hiroki Kitakata, Francois Haddad, and Ronald M. Witteles.