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 - http://www.house.gov/writerep
Write your Senators - http://www.senate.gov/general/contact_information/senators_cfm.cfm
U.S. Capitol Switchboard - (202) 224-3121

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