Welcome, Guest. Please Login or Register
Moyamoya.com
 
NEW search box below... Search Moyamoya.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday ListDonate  
 





Page Index Toggle Pages: 1
Send Topic Print
Need your help please! (Read 8579 times)
LisaH
Senior Poster
****
Offline


Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Need your help please!
Sep 7th, 2005 at 1:40am
 
Please read the below proposed bill, follow the directions at the bottom to contact your state representatives in order to help those with rare diseases (MM included) obtain the health care they so desperately need.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register


Ending the Medicare Disability Waiting Period Act of 2005 (S. 1217/H.R. 2869)
Senators Jeff Bingaman (D-NM) and Mike DeWine (R-OH)
Congressman Gene Green (D-TX)

On June 9, 2005, after consultation with a growing number of patient and disability groups, and with contributions from the National Organization for Rare Diseases (NORD), Senators Bingaman and DeWine introduced "Ending the Medicare Disability Waiting Period Act of 2005" (S. 1217). Companion legislation was introduced in the House of Representatives by Congressman Green on June 13 (HR 2869).

The bills would phase-out the current two-year waiting period that people with disabilities must endure after qualifying for Social Security Disability Insurance (SSDI). In the interim, the bill would also create a process by which the waiting period can immediately be waived for people with life-threatening illnesses. According to the legislation, the Secretary of Health of Human Services, in consultation with the National Institutes of Health, including the NIH Office of Rare Diseases, as well as other federal health-related agencies, would "compile a list of conditions that are fatal without medical treatment."

An estimated 400,000 Americans with disabilities - many of whom are living with rare diseases - are uninsured because of the 24-month Medicare waiting period, and many more are underinsured at a time in their lives when the need for health coverage is most dire (Dale and Verdier, The Commonwealth Fund, July 2003). In fact, various studies show that death rates among SSDI recipients are highest during the first two years of enrollment (Mauney, AMA, June 2002). For example, according to the Commonwealth Fund, four percent of these people die during the waiting period.

In an article written last year for NORD's newsletter, the Orphan Drug Update, Senator Bingaman wrote, "This is both outrageous and unacceptable. It has been far too long that Congress has failed to address the two-year waiting period. The wait must end and I thank NORD for its technical assistance in the creation of this important and long-awaited legislation."

Please join the growing number of organizations (click here for a list) who actively support this important legislation. Call or write your senators and representative today and ask them to cosponsor S. 1217 and H.R. 2869. Someone's life could depend on your support.

Write your Representative - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Write your Senators - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterU.S. Capitol Switchboard - (202) 224-3121

The ultimate authority of the U.S. Congress to act resides in you!

--------------------------------------------------------------------------------



"When you hear hoofbeats, don't assume it's a horse. It might be a zebra. "
--Medical School Adage


©2005 NORD - National Organization for Rare Disorders, Inc. All rights reserved.

Thank you all for your help!
Lisa
Back to top
  

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
IP Logged
 
janicetedd
Experienced Poster
***
Offline


Sister - Patty w mm

Posts: 221
Waterford, MI
Gender: female
Re: Need your help please!
Reply #1 - Sep 7th, 2005 at 7:58am
 
Lisa,

Great information.  I have already contacted my Rep and both Senators.

Janice
Back to top
  
 
IP Logged
 
Shan
Old-Time Poster
*****
Offline


MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female
Re: Need your help please!
Reply #2 - Sep 7th, 2005 at 1:08pm
 
Thanks Lisa!
   ;Grin
Back to top
« Last Edit: Sep 7th, 2005 at 1:11pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
IP Logged
 
cubbie
Experienced Poster
MM.com Benefactor
***
Offline


Stanford MM Survivor,May
2005

Posts: 168
Delaware, USA, usa, 418, 133, OH, Ohio
Gender: male
Re: Need your help please!
Reply #3 - Sep 7th, 2005 at 2:47pm
 
Thanks Lisa

I have contacted Senators De Wine and Voinovich,And the congressman Honorable Patrick J. Tiberi,Who Loves Lore LOL Smiley

Your Friend
Kevin          Good Find!
Back to top
« Last Edit: Sep 7th, 2005 at 2:50pm by cubbie »  

Kevin Allen- I was so much older than,I am younger than that now,The Byrds,My Back Pages
 
IP Logged
 
Seachelles
Old-Time Poster
*****
Offline


God never gives us more
than we can handle.

Posts: 681
Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female
Re: Need your help please!
Reply #4 - Sep 7th, 2005 at 5:06pm
 
I would love to contact my representatives.  Can someone please help me with a basis of their letters.  I just want a general idea of what I should say.  Please help me.  You would think that writing would be my strong point, but since my surgeries I have had major writer's block.

Thanks,
Michelle
Back to top
  

Michelle
Chelles4U Chelles4U  
IP Logged
 
Mar
Ex Member


Re: Need your help please!
Reply #5 - Sep 7th, 2005 at 10:05pm
 
Good idea Chelle. I didn't have brain surgery, and I still have writers block...lol.. Smiley

A rough idea as to how we should word it, as not to leave anything important out, is a great idea. any suggestions anyone?

Mar
Back to top
  
 
IP Logged
 
Islandentity
Experienced Poster
***
Offline


My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male
Re: Need your help please!
Reply #6 - Jul 28th, 2006 at 12:14am
 
Does anyone know if this bill passed, if not were did it die, remember its a election year now, and people will have to reap what they have sewn.

Mike
Back to top
  

BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.


©2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here





Valid RSS Valid XHTML Valid CSS Powered by Perl Source Forge