Legislative Initiative – Screening for von Willebrand’s Disease
von Willebrand’s Disease (vWD) is the most common bleeding disorder in America, affecting 1-2% of our population. However, only a small fraction of those afflicted by vWD have received an accurate diagnosis.
S.A.B.D. has proposed a new screening mechanism for vWD, which comprises a core part of H.Con.Res.147. America’s institutions of higher education are uniquely positioned to facilitate screening for a large portion of the population. Verbal screening questions, designed to identify individuals who may have vWD, can be easily incorporated into the various pre-existing health requirements of colleges and universities. Based on the results of these quick verbal screenings, certain individuals could then pursue a low-cost blood test to confirm the presence or absence of vWD.
H.Con.Res.147 : S.A.B.D. achieved its first major success by arranging for the introduction of H.Con.Res.147 to the U.S. House of Representatives on June 11th of 2009. Introduced by Congresswoman Carolyn McCarthy, H.Con.Res.147 supports the bleeding disorder community in several important ways. It advocates:
- increased research funds for all bleeding disorders
- greater physician and public education on bleeding disorders
- enhanced diagnosis rates and treatment of bleeding disorders
- a new von Willebrand’s Disease screening mechanism
A full summary of the resolution can be found at http://www.thomas.gov by searching by bill number for H.Con.Res.147. The Hemophilia Federation of America and the National Hemophilia Foundation have both signed on with official support for the resolution, and it has received bipartisan support in Congress.
Take Action
Get Involved with S.A.B.D! We are looking for young people, with or without bleeding disorders, committed to making a difference for the community. If you’re interested in:
- developing or applying advocacy skills
- making your voice heard on the policies that affect you
- learning about the legislative process
- working with professional policy-makers
…You’ve come to the right place!
There is no specific geographic or age requirement for involvement with S.A.B.D. Though founded by college students in Washington, DC, S.A.B.D. is open to close involvement and collaboration with interested parties across America. As a young, growing organization, S.A.B.D. offers a number of opportunities for significant involvement and leadership.
For further information or to become involved, contact Derick Stace-Naughton at djs83@georgetown.edu.
Contact Your Representative
S.A.B.D has been working hard this year, putting together a concurrent resolution on bleeding disorders for introduction to Congress. On June 11th, that resolution was introduced to the U.S. House of Representatives by Congresswoman Carolyn McCarthy of New York. Now known as H.Con.Res.147, the resolution has gained support from both the National Hemophilia Foundation and the Hemophilia Federation of America. The resolution was also introduced with bipartisan co-sponsors.
BUT WE STILL NEED YOUR SUPPORT!
You can help by contacting your delegate in the US House of Representatives by e-mail, phone, or postal mail. It just takes a couple minutes to follow this procedure:
- Go online to HFA’s Legislative Action Center Enter your state and zip code. The name and the contact information for your representative will appear.
- Call or write your representative’s office. URGE YOUR REPRESENTATIVE TO CO-SPONSOR H.Con.Res.147, and support the healthcare needs of the bleeding disorder community. Your statement or message can be as simple as that.
- Ask for a reply.
Remember, just a couple dozen constituents can change a Representative’s decisions, so URGE YOUR FAMILY AND FRIENDS TO CALL IN AS WELL!
