US Lawmakers Introduce ‘Ensuring Access to Clinical Trials Act of 2015’ for Rare Disease Research

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Cystic Fibrosis Foundation

U.S. lawmakers recently introduced new legislation that could greatly benefit thousands of Americans suffering from cystic fibrosis (CF) and other rare diseases with largely unmet clinical needs by helping them gain access to and participate in clinical trials without having to worry about their health coverage. The new bill, called the “Ensuring Access to Clinical Trials Act of 2015,” was sponsored by a bipartisan group of senators and legislators.

Senators Ron Wyden (D-OR), Orrin Hatch (R-UT), Sherrod Brown (D-OH) and Edward Markey (D-MA) constructed the bill with the goal of bolstering and making permanent the “Improving Access to Clinical Trials Act of 2009 (IACT),” which is due to expire come October 2015. The bill stipulates that up to $2,000 of compensation will not be counted as income toward patients’ eligibility for SSI and Medicaid benefits. The Cystic Fibrosis Foundation was a major advocate of the 2009 bill, and played an integral role in its passing.

“We are grateful to Senators Wyden, Hatch and Markey and Representatives Doggett, Marino and McGovern for introducing this important bill, which will permanently remove a critical barrier to participation in clinical trials for those with rare diseases like cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “As innovative new treatments move through the pipeline, it is more important than ever that we clear the way for promising drugs to move more swiftly from the research phase into the hands of the people who need them.”

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Thanks to the IACT, patients who wanted to participate in clinical trials aimed towards finding a cure no longer worried about compromising their eligibility for healthcare benefits. This fear had proved to be a significant barrier between willing patients, and clinical trials reaching completion and progressing to later stages without delay. Now, with the Ensuring Access to Clinical Trials Act, research initiatives on rare diseases can continue to enroll patients with more ease, and hopefully shorten the time needed to finally arrive at newer and better treatments and cures.

In other news on healthcare legislation, the British parliament is currently debating the plans of England’s National Health Service (NHS) to transfer more healthcare management responsibilities from national specialized services to local commissioners. However, the debate is generating a major discussion in UK healthcare circles about the risks that could come from trusting the specialized care of chronic and severe conditions such as cystic fibrosis (CF) to local services. The UK’s Cystic Fibrosis Trust recently commented on Parliament’s debate of the issue that took place last week in Westminster.

A Conversation With Rare Disease Advocates

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