Yesterday, we had an action day to gather support for HR 971, the OPEN ACT. I’m excited to share that it was a success! The OPEN ACT will now be a part of the 21st Century Cures initiative. I was on a conference call a few weeks ago and inquired about the possibility of the HR 971 being grouped in, but no one was completely sure of the outcome. I hoped that continuing to push for support for the bill would make it happen. After all, there is strength in numbers! Despite being really sick today, I am over the moon from this great news. However, our work isn’t finished yet!
If any of you watched the 21st Century Cures meeting a few weeks ago, you probably noticed that the bill needed multiple revisions. It is up to the rare disease community to continue to discuss our needs with members of Congress and continue voicing our disappointment with the FDA. While we can celebrate milestones, we cannot forget the end goal: give us safe drugs, faster! Reform is needed and the FDA is extremely hesitant to welcome change. I believe there is a disgusting amount of corruption and waste within the agency so we must continue to press Congress to change the system.
Tomorrow morning is another meeting on the newest draft of the legislation. I am anxiously awaiting the outcome!