We are thrilled to report that last night the Ensuring Access to Clinical Trials Act of 2015 (EACT) passed a vote in the House of Representatives (after passing the Senate by unanimous consent in July) and will go to the President for his signature!
This a result of everyone who contacted their Representative – over 400 families in this community alone! – including our partners at Cystic Fibrosis Foundation (CFF), the National Organization on Rare Disorders (NORD), MDA, and 70 other organizations.
Why this matters
The EACT 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. Essentially this bill removes an unfair financial barrier to clinical trials.
Once again, we continue to see how important it is for everyone in this community to add their voice, their story to the conversations happening in Washington. It is critical that lawmakes understand how policies being considered impact our Duchenne community — and we know that there is power in our outreach efforts.
Make sure you stay connected to PPMD so that you can take action when needed and thank you to everyone who helped the EACT Act of 2015 become law!