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HDSA is pleased to announe the passage of the Access to Clinical Trials Act by the US House of Representatives.

 

 

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  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.”

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Contact:
Mary Dunkle
mdunkle@rarediseases.org <mailto:mdunkle@rarediseases.org  > 

© 2010 NORD, National Organization for Rare Disorders