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Moyamoya Related Topics >> Patient Resources >> Need your help please!
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Message started by LisaH on Sep 7th, 2005 at 1:40am

Title: Need your help please!
Post by LisaH on 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.

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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

Title: Re: Need your help please!
Post by janicetedd on Sep 7th, 2005 at 7:58am
Lisa,

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

Janice

Title: Re: Need your help please!
Post by Shan on Sep 7th, 2005 at 1:08pm
Thanks Lisa!   ;;D

Title: Re: Need your help please!
Post by cubbie on 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=heart.gif]

Your Friend
Kevin          Good Find!

Title: Re: Need your help please!
Post by Seachelles on 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

Title: Re: Need your help please!
Post by Mar on Sep 7th, 2005 at 10:05pm
Good idea Chelle. I didn't have brain surgery, and I still have writers block...lol.. [smiley=ohjez.gif]

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

Title: Re: Need your help please!
Post by Islandentity on 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

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