Results of a new study published in the journal Haemophilia are illustrative of persistent health disparities existing within the U.S. hemophilia population.

The data that informed the study was drawn from National Vital Statistics System (NVSS), which generates comprehensive statistics on births and deaths in the United States. The authors looked at the NVSS’ 1999–2020 Multiple Cause-of-Death data set to learn more about rates of hemophilia-related death (rHD).

Investigators ultimately identified 3,115 males associated with a rHD. Data showed that approximately 76.1% of deaths occurred in White men (2370), 13.3% in Black men (413), 7.4% in Hispanic men (233), 2.2% in Asian men (69), and 0.9% in American Indian/Alaska Native men (28), while race and ethnicity data were missing in two cases. A review of the data revealed a noteworthy reduction in overall age-adjusted rHD rates for all race and ethnic groups, with a decrease from 1.37 per 1 million males in 1999-2004 to 0.76 per 1 million males in 2015-2020.

This improvement in rHD rates, driven in part by the evolution of treatment and access to better therapies, represents a positive overall trend. However, the most recent decade’s worth of data (2010-2020) also revealed a troublesome disparity as Blacks and Hispanics showed a median rHD of 56 years, putting them significantly behind their white counterparts who experienced a mean age of 68 years.

“Our observation that Black men had a lower median age at death and that HIV continues to be a leading cause of death among Black males with hemophilia listed in their death certificate in both earlier and recent years could signal ongoing survival disparities among Black people with hemophilia and an HIV infection,”

While the data suggest that HIV has a major impact on rHD in Black males, further research is necessary to identify additional inequities contributing to poorer health outcomes in underserved populations.

“Reported haemophilia-death rates improved in males across all race/ethnicities, but rates were higher Black versus White males. Given the inherent limitations of the current study’s data source, further investigation of survival rates and disparities in haemophilia are needed,” the authors concluded.

The study, “Racial and ethnic differences in reported haemophilia death rates in the United States,” was published online in Haemophilia on September 23, 2023.

Source: The American Journal of Managed Care, September 23, 2023