Improving Access to Clinical Trials Act

The KDA received the following announcement this week from the National Organization for Rare Disorders (NORD). The KDA has been a member of NORD for several years and supported this as well as several other similar legislative changes. There were 120 supporting organizations and we were pleased to see that our legislators took notice of the inequities in current regulations and decided to do something about it.

Although this legislation will not impact many with Kennedy's Disease, it is another barrier removed from those of us living with rare diseases who wish to participate in clinical trials that may lead to a treatment or cure.

This is also another example where, without NORD, those with rare disorders would not have a "voice" in our legislature. NORD has been a strong advocate for recognizing and proposing changes to situations where there are inequalities in our current system.

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."