Wednesday, September 29, 2010

Improved Access to Clinical Trials

ME is listed by the  National Association of rare disorders

  NORD Press Release
House Passes Improving Access to Clinical Trials Act
Washington DC-----In a victory for rare disease patients and families, 
the U.S. House of Representatives yesterday passed the Improving 
Access to Clinical Trials Act (I-ACT).  The bill, which passed the 
Senate August 5, goes now to the White House where President Obama is 
expected to sign it.

"This is a victory for the rare disease community," said NORD 
President and CEO Peter L. Saltonstall.  "This legislation will 
support the development of new therapies by removing a barrier that 
might keep patients from participating in important research studies."

The legislation changes the eligibility requirements for Social 
Security Supplemental Income (SSI) and Medicaid so that compensation 
of up to $2,000 for participating in clinical trials won't be 
considered income in SSI and Medicaid determinations.

NORD has worked with the Cystic Fibrosis Foundation and other patient 
advocacy groups in support of this legislation.  NORD and several of 
its Member Organizations signed a recent letter on behalf of the 
Improving Access Act sent to House Speaker Nancy Pelosi (D-CA) and 
House Minority Leader John Boehner (R-OH).

"We're grateful to our Member Organizations for their support on this 
important issue," Saltonstall said.  "This is one more reminder that—
when we speak together—we are able to bring about change that improves 
the lives of patients and families affected by rare diseases."


Mary Dunkle

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