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MEDI-CARE or MEDI-APATHY?

Posted Feb 01 2010 12:00am

[LETTER FROM A NEW FRIEND - DG]

My name is Jack and I am 66 years old with health coverage through Medicare.  I have been diagnosed with Myelodysplastic Syndrome (MDS), a bone marrow failure disease which typically progresses to Leukemia. .  Currently, Medicare will not cover this life saving treatment until MDS makes its progression to Leukemia, a full on CANCER.


I am writing to you because your voice can play a significant part in changing this shameful medical neglect by Medicare.  It is through proactive communication with Medicare, via the legislative process, that we, (the general public and constituency of our state of residence) can spotlight this ultimate ”death sentence” currently given to MDS patients.

HR 1230 is a new bill authored by Congresswoman Doris Matsui, So. California, focused on MDS and thus far co-sponsored by 43 other representatives. If it is passed into legislation this bill will expand Medicare coverage to include bone marrow transplants for MDS.  I am appealing to you on behalf of myself, and every other of the 20-30,000 MDS patients in America, to help us get HR 1230 passed this spring.  It is possible that your participation could be the determining factor in obtaining authorization from Medicare for MY bone marrow transplant. 


PLEASE CONTACT YOUR STATE REPRESENTATIVE with the information below AND ASK THAT HE/SHE.  The information you need for your representative’s address is at the bottom of this email.  It is important that we do this NOW.  As you know there is strength, and success in numbers, one lone voice is not enough no matter how loud it is.


*  Below is a message that I’m asking you to copy and send to your State Representative.

Myelodysplastic syndrome (MDS) is a disease in which the bone marrow does not make enough healthy blood cells.  About 80 percent of people who have MDS are 65 years of age or older.  Currently, blood and marrow transplant (BMT) is the only known treatment that can cure MDS. Yet, 

The American Society for Blood and Marrow Transplantation (ASBMT) has submitted a request asking Medicare to consistently cover BMT therapy for older Americans with MDS.

The ASBMT based their request in part upon the results of research led by physicians from the University of Minnesota BMT Program. Dr. Brian McClune and Dr. Daniel Weisdorf examined transplant data from 551 MDS patients of all ages. Their analysis revealed that there is no significant decrease in overall survival for older BMT patients.

For more information, please see the complete article in the latest ASBMT newsletter: http://www.asbmt.org/News/CMS+MDS



Click on this web site to find out email address for your Reps.

http://www.webslingerz.com/jhoffman/congress-email.html


Please copy the message below, and paste it into an email communication to your representative ,  or feel free to compose your own request.  Medicare will review all letters from state representatives regarding H.R 1230 and make a decision very soon.   The more co- sponsoring representatives we can get on board, the more positive will be the future of MDS Medicare patients who can only survive with a bone marrow transplant.

Thank you for your help !




*

I am writing to ask you to cosponsor the Bone Marrow Failure Disease Research and Treatment Act of 2009 (HR 1230), introduced by Representative Doris Matsui (D-CA) on February 26, 2009.  Forty three of your colleagues have signed on as co-sponsors and now we need your support.  As a constituent coping with bone marrow failure disease, I ask that you support this new comprehensive approach to combating these devastating diseases.
Every year approximately 20,000 to 30,000 Americans are diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other acquired bone marrow failure diseases.

The Bone Marrow Failure Disease Research and Treatment Act of 2009 would leverage the expertise and resources of several agencies within the Department of Health and Human Services (HHS), as well as patient advocacy organizations, in a new comprehensive approach to combat bone marrow failure diseases.  It would establish a National Registry for Acquired Bone Marrow Failure Disease at the Centers for Disease Control and Prevention (CDC) to help us gain a better understanding of the causes of these diseases and what disproportionate prevalence’s exist throughout the U.S.  This legislation would also establish and coordinate outreach and educational initiatives targeted to minority populations and would seek to improve diagnostic practices and quality of care of patients suffering from these
diseases.

You can read a summary and section description of the legislation at .  Please cosponsor this important legislation by contacting Sam Stefanki in the office of Representative Matsui at  or at (202) 225-7163.

Thank you for your attention to this important matter.

TO see the Congresspersons that will have the deciding vote to change Bone Marrow Transplant for MDS) you can change this by sending your letters or email of Support  urging them to Co-sponor  HR 1230.   Your congressperson doesnt have to be on the list, they can still Co-sponsor HR1230 CLICK HERE

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