As we make advancements in Duchenne drug development, the potential therapeutic opportunities for Duchenne patients across the spectrum of the disease continues to grow — as do the opportunities to participate in clinical trials. This is a hopeful and exciting time for our Duchenne community and we must ensure unnecessary barriers don’t hamper clinical trial participation and stall access to safe and effective treatments.
That’s why PPMD joined with the Cystic Fibrosis Foundation (CFF) , the National Organization on Rare Disorders (NORD), MDA, and 70 other organizations to support a collaborative effort to permanently implement a law that was first passed in 2010 that worked to incentivize clinical trial participation and protect rare disease patient communities. The Ensuring Access to Clinical Trials Act of 2015 (H.R. 209/S 139) is designed to ensure that trial participants are legally able to receive up to $2,000 in compensation for participating in clinical trials before that compensation is factored into benefit eligibility algorithms (such as those for Supplmental Security Income or Medicaid eligibility). This bill passed the Senate in July and is currently being considered in the House of Representatives.
The Ensuring Access to Clinical Trials Act of 2015 simply eliminates the sunset (expiration) clause from the Improving Access to Clinical Trials Act of 2009 (IACT), legislation that was previously signed into law in 2010. The updated bill would make the IACT a permanent law, allowing patients with rare diseases to continue to receive up to $2,000 in compensation for participating in clinical trials without that compensation counting towards their income eligibility limits for SSI and Medicaid.
We need you to encourage your House member to pass this bill, let them know that clinical trial access matters to you and your family, and help us and protect patients who are participating in potentially life-saving clinical studies.