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."