HTCs are good news for people with hemophilia
Indiana Hemophilia Surveillance Project publishes results showing improved outcomes
Hemophilia is an incredibly difficult disorder to manage, but there is good news coming out of Indiana that will help patients to experience better outcomes. According to the Indiana Hemophilia Surveillance Project, research confirms that utilizing Hemophilia Treatment Centers (HTCs) greatly improves patient outcomes.
Despite the fact that patients who generally use HTCs have a more severe form of the disease, 82% of bleeding disorder patients who visited an HTC in Indiana or a bordering state during the study period were 47% less likely to visit an emergency room. They were also 80% more likely to be able to self-administer their medication to prevent bleeding, rather than taking it after they experienced a bleed.
The Indiana Hemophilia Surveillance Project—a collaboration between the Indiana Hemophilia & Thrombosis Center (IHTC), the Indiana State Department of Health and the Centers for Disease Control (CDC)—recently published these latest findings and more to reaffirm the benefits of HTC care.
These significant findings can be found in the complete Indiana-focused study titled, “Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources.” Modeled after the influential epidemiological surveillance project conducted by the CDC in the late 1990s, the new study involved analyzing de-identified medical records to determine diagnoses of hemophilia and treatment sought within the state. The severity of each patient’s hemophilia was noted, as well as where they sought care, how often and why.
Indiana was also found to have a higher rate of hemophilia than 20 years ago. The generally accepted frequency of hemophilia is 1 in 5,000 live male births, while the study found a frequency of 1 in 3,700 in Indiana, a rate 45% higher than previously reported in the U.S. The increase is thought to be due in part to U.S. blood products being among the safest in the world. In addition, patients are living longer and having more children thanks to improved care by HTCs.
This study reinforces the messaging of HTCs, the CDC, and the National Hemophilia Foundation for the past 20 years: Bleeding disorder patients should be seen at an HTC to ensure they receive the best care.