An update on the rapid advancement of The Newtown Athletic Club’s Have A Heart Foundation “My Right To Try Now” Initiative:
Executive Director Valerie Mihalek reports:
The House Bill was introduced July 2015. As of March 2016 when we got involved, it only had 12 cosponsors. The Senate Bill was just introduced May 2016. Since our involvement, the House Bill now has 55 cosponsors and the Senate Bill with tremendous effort from it’s sponsor Senator Johnson, now has 38 cosponsors. Up until this month, there were no democrat cosponsors on the Senate Bill. Nothing moves in the Senate without both parties agreeing to it. So this month we went back to Senator Manchin’s office for a second time. As a result of that meeting, he signed on as the lone democrat before they all left for their six week recess. On the house side, they passed the 21st Century Cures Act which had language that would allow more terminally patients access to trials but the Senate has done nothing with the Bill. Since our Board formed in April, we have had two Staff Briefings in DC on these Bills and were a part of Senator Johnson’s Bill Press Announcement. We’ve met individually with close to 100 Congressional Offices and nearly 40 Senate Offices. Many of these meetings were with the actual members which have been highlighted in our videos and pictures. Additionally we had a My Right To Try Now Rally June 16, 2016.
We have been pushing both the House and Senate to hold Hearings on these Bills in September since right now they are stuck in committee. Until they get out of Committee, they can’t be voted on.
We are actively working to get them out of Committee which entails all the meetings, time and effort you’ve seen highlighted on our website and FB page.
We’ve even moved the ALS Association from being against RTT to supporting it. We have organized with the following groups: GPACT, DMD, SMA, Voices With Brain Cancer, etc. We are currently strategizing for September when the Congress reconvenes.
It’s easy to lose hope and only four percent of Bills in Congress ever become law. But the tremendous support we have been rallying, is what will get this over the finish line!
All politics are local, and EVERYONE needs to continue to call their Congressman and two Senators to ensure they are supporting the Bills. Please visit : www.myrighttotrynow.com/ “Take Action Now”
Keep the faith! Share with your friends and spread the hope!