Annual inhibitor testing isn’t only necessary for very young children with severe hemophilia A, the highest-risk patients, anymore. In fact, since 2015, the Centers for Disease Control and Prevention (CDC) and the National Hemophilia Foundation’s (NHF’s) Medical and Scientific Advisory Council have recommended that all people with hemophilia be tested at least once a year for inhibitors. Successful treatment of inhibitors, an understanding of their causes and the development of tools for preventing inhibitors depend on screening all patients with hemophilia annually.
Detecting an inhibitor early remains critical to treatment success. Screening is a quick procedure: One or two tubes of blood are drawn and tested for inhibitors. Laboratory testing of the sample takes four to five hours. In addition to achieving better treatment outcomes, routine screening to detect inhibitors may help patients prevent the complications that can result from not knowing they have an inhibitor.
Free inhibitor testing for people with hemophilia
The Community Counts CDC Public Health Surveillance Project for Bleeding Disorders (Community Counts), a collaborative effort among the CDC, the American Thrombosis and Hemostasis Network (ATHN) and the US Hemophilia Treatment Center Network, provides free annual screening for inhibitors and other bloodborne diseases, such as HIV and hepatitis C, to people receiving care at federally funded HTCs. About 70% of people with hemophilia in the United States receive care at one of these facilities. The CDC’s website maintains a list of participating locations. Over 135 HTCs nationwide offer Community Counts.
NHF educational resources on inhibitors
NHF provides support for people coping with inhibitors, and offers materials and programs so people can learn more about preventing and treating inhibitors.
Inhibitor Education Summits
Each year, NHF holds weekend-long, comprehensive educational programs for people with hemophilia A or B with inhibitors and their caregivers. These summits are a place for the inhibitor community to be educated and empowered to face the challenges of living with an inhibitor. Find out more about the summits.
The National Hemophilia Foundation (NHF) recently published two educational booklets on inhibitors—Facts About Inhibitors and Living with an Inhibitor. Targeted to patients and hemophilia treatment center providers, these brochures explain what inhibitors are and how they form, who is most likely to develop an inhibitor, how to understand test results, treatment options and ways to manage the challenges of living with inhibitors.
HeMOJI Video Meetup Group
Short for Hemophilia Men on a Journey with Inhibitors, this online group is for men ages “18 to 30ish” living with an inhibitor. Led by a peer or an expert in the bleeding disorders community, HeMOJI discussions are from 9 to 10 PM EST on the second Wednesday of each month. Topics have included dealing with emergency situations and handling stress. View the HeMOJI schedule at NHF’s website.