Bone Marrow Failure Disease Research and Treatment Act

[Marrowforums]

U.S. Congressional Representative Doris O. Matsui is introducing the Bone Marrow Failure Disease Research and Treatment Act this week. The proposed legislation will establish an Acquired Bone Marrow Failure Disease Registry at the Centers for Disease Control (CDC), direct research into environmental causes of these diseases, coordinate outreach and educational initiatives targeted to minority populations, and improve diagnostic practices and patient care for bone marrow failure diseases.

This legislation represents a new comprehensive approach to combating bone marrow failure diseases.

To build support and seek cosponsors, Representative Matsui has sent a letter about the bill (PDF, 4.0MB) to every member of the U.S. House of Representatives.

Everyone can and should take action to encourage their own Congressional Representatives to support the legislation. There are two specific ways to help:

1. Over 125 attendees at this week's AA&MDSIF Patient Conference are going to Capitol Hill to ask their members of Congress to support the initiative.

2. Send email in support of the Bone Marrow Failure Disease Research and Treatment Act to your U.S. Representative and urge them to sign on as a co-sponsor.

To send email to your Representative, go to the Grassroots Action Center page and click the Take Action button. Personalize the sample message to tell your story and why you ask for support of the Bone Marrow Failure Disease Research and Treatment Act.

One person can make a difference, and hundreds of people speaking the same message can have a particularly powerful impact on Congress. This is a unique opportunity to let your voice be heard about legislation that can help bone marrow failure disease patients, past, present, and future. We encourage you to send email to Congress now, and to encourage others who are affected by bone marrow failure diseases, including those who care about you, to do the same.

[Marrowforums]

This week, Representative Matsui formally introduced the "Bone Marrow Failure Disease Research and Treatment Act", now known as HR 6884. This legislation would bring together the resources of several federal agencies to advance our understanding of and treatments for aplastic anemia, MDS, and PNH. You can read summaries of the bill and the legislation by visiting the AA&MDSIF’s HR 6884 Advocacy section.

Thanks to the grassroots efforts of patients and their families nationwide, more than 300 Congressional offices are already aware of this legislation. In addition, Rep. Matsui has sent a letter to all of her colleagues in the U.S. House of Representatives asking them to co-sponsor this bipartisan legislation.

The following Members of Congress have signed on as original co-sponsors:

Chris Van Hollen (D-MD)
Sanford Bishop (D-GA)
John Doolittle (R-CA)
Robert Etheridge (D-NC)
Jim Ramstad (R-MN)
Pete Stark (D-CA)
JoAnn Emerson (R-MO)
Jason Altmire (D-PA)
Henry Waxman (D-CA)
Peter King (R-NY)
Jan Schakowsky (D-IL)
Madeleine Bordallo (D-Guam)
Diana DeGette (D-CO)
Jim McGovern (D-MA)
Jim McDermott (D-WA)

If your U.S. Representative is NOT on this list, please contact him/her today and request that they co-sponsor this important legislation! You can contact their local office in your home area, as well as email their Washington, D.C. office. If your Representative is already a co-sponsor, be sure to call or email them to thank them for their support.

The timing is critical. Congress is expected to adjourn in a few short weeks, so our time to act is very limited. Please ask your family and friends to join you by contacting their representatives.

More information on how to spread the word about HR 6884 will be forthcoming from the AA&MDSIF next week. Get ready by visiting the websites for your local radio and television stations and newspapers to locate an email address for a local health or metro reporter or the news director. If you can't find the website, make a call and find out who should receive the information. Keep this information handy for the next call to action.