Findings of a new study have uncovered specific disparities in hemophilia care by focusing on the use of immune tolerance therapy (ITI) in people with hemophilia A and an inhibitor. ITI is achieved through long term and uninterrupted exposure to factor replacement therapies so that the body’s immune system will begin to tolerate a therapy and cease generating antibodies. Individuals who undergo ITI will receive daily infusions of factor replacement products over a period of weeks, months, or in some cases, years.    

The study, “Race, Ethnicity, and Immune Tolerance Induction in Hemophilia A in the United States,” was published in the journal Research Practice in Thrombosis and Haemostasis.

The data that informed the cross-sectional study came from the Center for Disease Control and Prevention Community Counts Registry (CCR) and included people with severe hemophilia, five years of age and older, with a history of an inhibitor. Ultimately, 614 participants who entered the CCR between 2013 and 2017, were included in the analysis. Of those, 56.4% were non-Hispanic (NH) White, 19.7% were NH Black, 18.4% were Hispanic, and 4.9% were Asian. ITI was received by 85.2% of participants.

Investigators found that disparities amongst these groups were present even after adjusting for various factors. “In analyses accounting for clinical factors, driving distance, HTC size, and other factors, NH Black and Hispanic participants were statistically significantly less likely to have received ITI relative to NH White participants, 9% and 12% respectively. Asian participants were non-significantly less likely to receive ITI in adjusted analyses. When all non-Hispanic and non-White participants were grouped together, receipt of ITI was 12% lower when compared to NH White participants,” observed the authors.  

Further, while the overall proportion of participants receiving ITI was higher (92.9%) in those whose inhibitor was detected when they were five years of age or younger, the disparities amongst the aforementioned racial and ethnic groups persisted.

The authors stress the importance of continuing to examine disparities in hemophilia care, as the influence of racial and ethnic disparities bias on treatment decisions is not limited to ITI or even hemophilia but may extend to other therapies and conditions.

“The process of providing care to the people with hemophilia has many challenges that may lead people with hemophilia and providers away from best practices. These same challenges may exist in other complex chronic hematological conditions and in other parts of the world where systemic racial and ethnic disparities exist,” concluded the authors. “The barriers to equitable care may persist even with gene therapy where bias may occur when considering who can and cannot meet the demands of frequent monitoring in the early post-infusion period. Understanding that racial disparities occur is an important first step to addressing them.”  

Source: American Journal of Managed Care, November 14, 2023