In doing some research on the House and Senate versions of the Creating Hope Act of 2011, neither bill has moved since the bills themselves were first brought to my attention nearly a year ago.
The House version of the bill, HR 3059, is currently in the House Committee on Energy and Commerce headed by Michigan Rep. Fred Upton. Those of you in the Michigan branch of Armand’s Hope might want to get the word out. The bill itself has 171 co-sponsors with great bi-partisan support, yet has been stuck in Committee since September. Gaining traction in the House over the next couple of months may be our best bet as the Senate version has not yet even made it into committee.
If neither version of the bill is passed by Congress and signed by President Obama before the end of the year, it must then again be re-introduced and start over during the next Congress in 2013.
However, people are paying attention, in that new co-sponsors for both of these bills are being added all the time. The latest additions have occurred as recently as this month.
UPDATE: I was notified today on our facebook page that the Creating Hope Act was made a part of a larger bill, Food and Drug Administration Safety and Innovation Act, and has passed the House, heading to the Senate as S. 3187, hoping to be voted on next week and signed by President Obama shortly after that. More information on the bill, and what it means for pediatric rare diseases can be found here: http://childrenscause.org/newsletter-june2012.