Update – 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.
On March 15, 2010, Congresswoman Carolyn McCarthy introduced H.R. 4846 entitled “The Bleeding Disorders Screening, Awareness, and Further Education Act of 2010.” This proposal moves the original Resolution into bill reform.
It advocates:
- Increase research funding for all bleeding disorders
- Provide greater physician and public education on bleeding disorders
- Screen college students for von Willebrands (vWD) at institutions of higher education
- Enhance diagnosis rates and treatment of bleeding disorders
- Decrease the number of unnecessary hysterectomies performed each year due to undiagnosed cases of vWD.
Each aspect of this measure is important to the bleeding disorders community. Education and awareness of bleeding disorders has the potential for earlier diagnosis, which can lead to quality care and better health outcomes. Furthermore, additional screening mechanisms, increased funding for research and a research plan can positively impact the lives of those who remain undiagnosed. You can read the full text bill by clicking here or on http://www.thomas.gov and searching for H.Con.Res.147 or H.R. 4846.
The Hemophilia Federation of America was consulted while the bill was written and has signed on with official support for the bill.
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 ha
Update – Legislative Initiative – Physician awareness and patient screening
H.R.4846 :
On March 15, 2010, Congresswoman Carolyn McCarthy introduced H.R. 4846 entitled “The Bleeding Disorders Screening, Awareness, and Further Education Act of 2010.”
It advocates:
- Expanded screening for bleeding disorders, particularly amongst adolescents
- Increased physician awareness of bleeding disorders
- Enhanced surveillance of bleeding disorders across the country, which can lead to improved, more targeted research efforts
Each aspect of this measure is important to the bleeding disorders community.
Education and awareness of bleeding disorders amongst physicians, as well as increased funding for research, can enhance quality of care and improve health outcomes for all bleeding disorder patients. Furthermore, expanded bleeding disorder screening can positively impact the lives of those who remain undiagnosed. For instance, although von Willebrand’s Disease is the most common bleeding disorder in America (affecting 1-2% of our population), only a small fraction of those afflicted by vWD have received an accurate diagnosis.
The Hemophilia Federation of America was consulted while the bill was written and has signed on with official support for the bill. The National Hemophilia Foundation, CSL Behring, and Baxter have also endorsed H.R.4846.
You can read the full text bill by clicking here or on http://www.thomas.gov and searching for H.Con.Res.147 or H.R. 4846.
Take Action
Contact Your Representative
S.A.B.D has been working hard on H.R.4846…
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. HFA has created an Action Alert to make it easy for you to ask your representatives to support this bill. 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.R.4846, 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!
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.
For further information or to become involved, contact Derick Stace-Naughton at djs83@georgetown.edu.
s been working hard this year, putting together a concurrent resolution on bleeding disorders for introduction to Congress. HFA has created an Action Alert to make it easy for you to ask your representatives to support this bill.
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.R.4846, 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!
