Hemophilia death rates decline, but disparities by race, ethnicity persist
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Key takeaways:
- Hemophilia death rates declined across races and ethnicities in the United States.
- Rates remained about 30% higher among Black men than white men.
Hemophilia death rates among men in the United States improved between 1999 and 2020, according to study results.
Investigators observed improvement across all races and ethnicities; however, death rates remained higher among Black men than white men.
Hemophilia mortality declined across races and ethnicities; however, death rates remained higher among Black men than white men. Image: Adobe Stock
Prior findings have show life expectancies for individuals with hemophilia have improved over time, but whether those improvements occurred equitably among people of various races and ethnicities had not been established.
Stacey A. Fedewa, MD, of the department of hematology and medical oncology at Emory University School of Medicine, and colleagues used US National Vital Statistics’ Multiple Cause of Death 1999-2020 data to assess recorded hemophilia death rates nationwide based on race and ethnicity.
Investigators defined recorded hemophilia death as having a hemophilia A or B ICD-10 code in the death certificate.
The analysis showed 3,115 recorded hemophilia deaths among males, equating to a rate of 0.98 per 1 million.
During the 21-year period, recorded hemophilia death rates declined by 46% among non-Hispanic white men, 44% (age-adjusted rate ratio = 0.56; 95% CI, 0.43-0.74) among non-Hispanic Black men and 42% (age-adjusted rate ratio = 0.58; 95% CI, 0.39-0.88) among Hispanic men.
However, results showed recorded hemophilia death rates remained on average 30% higher among non-Hispanic Black men vs. non-Hispanic white men (age-adjusted rate ratio = 1.3; 95% CI, 1.16-1.46).
The median age at death for all recorded hemophilia deaths increased from 54.5 years in 1999 to 65.5 years in 2020. However, between 2010 and 2020, the median age at death among non-Hispanic Black men was 12 years younger than non-Hispanic white men (56 years vs. 68 years).
Researchers identified 930 women with recorded hemophilia deaths, equating to an age-adjusted rate of 0.22 per 1 million. This remained consistent between 1999 and 2020, according to investigators.
“Given the inherent limitations of the current study's data source, further investigation of survival rates and disparities in hemophilia are needed,” Fedewa and colleagues wrote.
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