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  #1  
Old Wed Jul 14, 2010, 11:12 AM
Marrowforums Marrowforums is offline
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Patients and Families Advocate on Capitol Hill

Yesterday, at an Advocacy Day arranged by the Aplastic Anemia & MDS International Foundation (AA&MDSIF), more than 75 people -- aplastic anemia, MDS, and PNH patients, spouses of patients, and other family members -- met with their congressional representatives and senators in a full day of scheduled appointments.

Altogether, they had 84 meetings on a single day! Patients worked in teams, grouped by state, as they went to the offices of representatives from their districts, other districts in their states, or either or both senators from their state. They included patient meetings with the Speaker of the House, members of committees that oversee healthcare, and many other congresspersons whose support and influence could make a difference for families fighting bone marrow failure diseases. As grass roots advocates, these patients and family members showed how strongly they felt and put a human face on the issues involved. One family member drove coast-to-coast across the United States to attend these meetings!

Here's what they asked their elected officials for:
  1. That the representative co-sponsor the Bone Marrow Failure Disease Research and Treatment Act. This resolution, known as HR 1230, was introduced by Congresswoman Doris Matsui, whose husband Congressman Bob Matsui died of MDS. Patients who met with their senators asked them to introduce a corresponding resolution in the Senate.

  2. That the representative or senator support continued funding for the Department of Defense bone marrow failure disease research program.

  3. That their representative or senator support the addition of MDS to the "presumptive list" of diseases resulting from exposure to Agent Orange, so that affected veterans can get the disability benefits they deserve. Because MDS is not on the list vets must "fight the system" individually based on the medical evidence of Agent Orange as a causative factor for MDS. See the MDS, Agent Orange and the VA thread.
They made the case that there is insufficient research into the causes of bone marrow failure diseases, methods of diagnosis, and safe and effective treatments, and that community outreach is needed. These are all features of HR1230. Many patients and their friends and family members have already emailed their congresspersons, but the face-to-face meetings further encourage members of Congress to see and remember the people who struggle against bone marrow failure diseases every day.

We hope to see positive results from the Advocacy Day efforts. Although the number of co-sponsors of HR1230 has grown from 19 to 49 since last year, that may still be an insufficient number to get the resolution to the floor of the House and to a vote, and a similar resolution in the Senate is still needed. Each representative or senator knows the list of people who have already contacted them by email in support of the resolution. It's trivially easy and vitally important to add your own name to that list. To contact your own congressperson about HR1230 visit the AA&MDSIF Grassroots Action Center.
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Old Wed Jul 14, 2010, 11:13 AM
Neil Cuadra Neil Cuadra is offline
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My wife Ruth and I were glad to join the efforts yesterday. Either together or separately we participated in 9 of the 84 meetings, teamed with others from our state, just as other patients and family members were doing for their own states.

It can be intimidating at first to enter a representative or senator's office and be ready to sit down with them or their legislative aide to explain a bill we want them to co-sponsor and why it's so important. It made for a mentally and physically taxing day, but it's our right as Americans to talk to those who represent us. Every one of the grass roots advocates -- meaning the regular people like us whose lives were turned upside-down by bone marrow failure -- contributed to yesterday's effort and it was great to see the wheels of government in action for a good cause.
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Old Wed Jul 14, 2010, 12:53 PM
Lisa Z Lisa Z is offline
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Smile capital hill day

Thanks for doing this, to you and all others who participated. Personally, we were beat after the sessions attended at the conference, and headed home on Monday. Glad you and others were able to do the thing on capital hill. Hope to do that one day ! Conference, by the way, was GREAT
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Old Fri Jul 16, 2010, 11:07 AM
triumphe64 triumphe64 is offline
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I checked last night and saw that there were six new Co-Sponsors signed on on 7/13/10. There are now 55 co-sponsors,
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Tue Jul 20, 2010, 01:46 PM
Marrowforums Marrowforums is offline
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There are now eight new co-sponsors of HR 1230, the Bone Marrow Failure Disease Research and Treatment Act:
  1. Rick Boucher (Virginia representative)
  2. Ben Chandler (Kentucky representative)
  3. Eni Faleomavaega (American Samoa delegate)
  4. Ralph Hall (Texas representative)
  5. Baron Hill (Indiana representative)
  6. Richard Neal (Massachusetts representative)
  7. Eleanor Holmes Norton (Washington D.C. delegate)
  8. Ed Towns (New York representative)
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  #6  
Old Wed Jul 21, 2010, 04:11 PM
Debbie W Debbie W is offline
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Now 59 cosponsors -

Link
http://www.govtrack.us/congress/bill.xpd?bill=h111-1230

Rep Faleomavaega, Eni F.H. [AS] - 7/19/2010
Rep Olver, John W. [MA-1] - 7/20/2010
Rep Pitts, Joseph R. [PA-16] - 7/20/2010

If your Rep is not listed then please call and/or fax his office, I will contact my Rep.

Thanks for the information.
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #7  
Old Thu Jul 29, 2010, 05:00 PM
triumphe64 triumphe64 is offline
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Now 61 as of 7/28.

http://thomas.loc.gov/cgi-bin/bdquer...1:HR01230:@@@N
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Thu Jul 29, 2010 at 05:02 PM. Reason: Add website.
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