Insurance, home therapy, and prophylaxis in U.S. youth with severe hemophilia.

BACKGROUND: Home infusion therapy, particularly on a prophylactic regimen, is linked with reduced morbidity among youth with severe hemophilia. However, the association of insurance coverage with these home therapies is unknown. PURPOSE: This study explores the connections among insurance, home infusion therapy, and prophylaxis treatment in a nationwide cohort of 3380 boys and young men (aged 2 to 20 years) with severe hemophilia. These youth obtained care at one of 129 federally supported hemophilia treatment centers (HTCs), and enrolled in the CDC's bleeding disorder surveillance project. METHODS: Multiple regression was used to analyze the independent association among risk factors, including insurance, and both home infusion and prophylaxis. Data were obtained between January 1, 2008, and December 31, 2010, and analyzed in 2011. RESULTS: Ninety percent used home therapy and 78% a prophylaxis regimen. Only 2% were uninsured. Health insurance was significantly associated with prophylaxis, but not with home therapy. Lower prophylaxis utilization rates were independently associated with having Medicaid, "other," and no insurance as compared to having private insurance. Race, age, inhibitor status, and HTC utilization were also independently associated with both home therapy and prophylaxis. CONCLUSIONS: Youth with severe hemophilia who annually obtain care within the U.S. HTC network had a high level of health insurance, home therapy, and prophylaxis. Exploration of factors associated with insurance coverage and yearly HTC utilization, and interventions to optimize home infusion and prophylaxis among youth of African-American and "other" race/ethnic backgrounds are warranted.