Last month, Congresswoman Carolyn McCarthy (D-NY) introduced legislation to promote awareness of and screening for all bleeding disorders. The bill is H.R. 4846, the Bleeding Disorder Screening, Awareness, and Further Education (SAFE) Act. The SAFE Act is the first bill directed at the bleeding disorders community since Congress passed the Ricky Ray Hemophilia Relief Fund Act in 1998. If adopted into law, the bill would:
· Provide funding for screening of young people for bleeding disorders, including at school.
· Increase research funding aimed at improving diagnostic and treatment options, and understanding prevalence of bleeding disorders.
· Provide funding to promote greater awareness of bleeding disorders among physicians, other healthcare professionals and the general public.
Hemophilia, von Willebrand disease (VWD) and other inherited bleeding disorders affect millions of men and women in the U.S. While hemophilia is often diagnosed in childhood, the vast majority of individuals with bleeding disorders remain undiagnosed, often seeking inappropriate treatment for symptoms that, at times, could be life-threatening. For undiagnosed women, in particular, health risks can be further compounded by heavy menstrual periods and prolonged bleeding following injury, surgery and childbirth.
Passage of the SAFE Act is a major step toward increasing screening and appropriate treatment for individuals with bleeding disorders. The National Hemophilia Foundation is fully supportive of the measure and is working with Congresswoman McCarthy’s office to secure additional co-sponsors. In the coming weeks NHF will be launching a new grassroots campaign to increase support for the bill. We will keep you informed on the status of the campaign.
Read more about the SAFE Act.