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Improving Access to Clinical Trials Act passes Congress; allows rare disease patients to serve in clinical trials and keep benefits
PR Newswire
WASHINGTON—The US House of Representatives passed the “Improving Access to Clinical Trials Act” in a victory for the Cystic Fibrosis Foundation and 120 other health advocacy organizations.
The Alpha-1 Foundation and the Alpha-1 Association were among the health advocacy organizations supporting the bill.
The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it.
This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits.
Passage of this legislation is particularly important for people with rare genetic diseases. A limited patient population makes it challenging to find enough people with these conditions to participate in research studies evaluating the effectiveness of promising new drugs.
“Because of this groundbreaking legislation, people with CF and other rare diseases will no longer be forced to choose between critical health care coverage and participation in research that could lead to the development of a cure for our most serious illnesses,” said Robert J. Beall, PhD, president and CEO of the Cystic Fibrosis Foundation. “We are grateful to our champions in Congress for approving this bill, which will help move new treatments more swiftly from the lab to the patients who need them most.”
Congressional Cystic Fibrosis Caucus Co-Chairs, Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., led the effort to pass the bill in the House. The House version of the legislation, H.R. 2866, had 141 co-sponsors.
