Yesterday, the Senate unanimously passed the Ensuring Access to Clinical Trials Act, which would allow individuals receiving Supplemental Security Income (SSI) and Medicaid to continue participation in clinical trials. Supported by First Focus, this legislation, S. 239, was proposed in January by Senator Ron Wyden (D-OR), and gained strong support from 15 cosponsors on both sides of the aisle. It functions by removing the sunset clause in the Improving Access to Clinical Trials Act of 2009 (IACT), allowing these individuals to take part in potentially life-saving clinical studies indefinitely.

This bipartisan action in the Senate is a huge win for both patients and medical researchers. It protects patients’ ability to receive compensation for participating in clinical trials, without counting against income eligibility requirements for those programs. It also prevents patients from being suddenly cut off from drug treatments that they may need to survive. For medical researchers, this bill opens up large pools of potential clinical trial participants. This is especially important given the difficulty many researchers face when testing treatments for rare conditions like cystic fibrosis, as it can be challenging to find and enroll enough participants to adequately develop solutions. Ultimately, this bill helps individuals receive treatments, while expediting the research process to make them available on a larger scale.

In March, First Focus signed a letter addressed to Senators Ron Wyden (D-OR), Orrin G. Hatch (R-UT), Edward J. Markey (D-MA), and Sherrod Brown (D-OH), all who spearheaded this cause, expressing its support for the bill. The letter was signed by 76 other organizations, representing millions of Americans with rare and genetic diseases, advocates, industry, and academic institutions.

After the bill’s passage, Senator Wyden expressed his thanks to the Senate for the broad support his legislation enjoyed, saying “by removing this sunset, the Senate has affirmed its commitment to seeking cures for rare diseases and removing barriers so all have the opportunity to participate in clinical trials. The Ensuring Access to Clinical Trials Act is an important and hopeful step in the right direction and I was proud to work with Senators Hatch and Markey on this worthy effort.” Senator Hatch remarked “Clinical trials have been a cornerstone for the research community, helping to provide promising futures for patients with groundbreaking treatments and cures for disease. This is a common-sense, bipartisan initiative to help ensure that more individuals battling rare diseases can participate in these potentially life-saving programs and work towards improving their health.”

Similar legislation has yet to be considered in the House, where Representative Lloyd Doggett (D-TX) introduced a companion bill in January. First Focus has shared its support for such efforts so that critical research can continue indefinitely without negatively impacting benefits of participants.

Allowing recipients of and to continue participating in clinical trials: New blog post |
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Want to learn more? First Focus is a bipartisan advocacy organization dedicated to making children and families the priority in federal policy and budget decisions. Read more about our work on health policy.

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