Sunday, March 13
After a short break for nature’s necessities, we settled back into our seats to find out exactly what our mission was going to be when we head off to Capitol Hill. For several weeks prior to leaving for DC we had been calling, emailing and faxing our representatives offices in DC, hoping to make an appointment to meet personally with the Congressmen, but having to settle for meetings with their aides if they were not available. Before we head off to keep those appointments, we will be coached on what to say, how to say it and what our we hope to accomplish in these meetings. So let’s get started……
First of all, we need to thank Congress for approving the Special Diabetes Program!! In December, Congress approved the funding of $300 million for Type 1 Research, which is a 2 year extension of a program that was already in force but in jeapardy. With all the cuts happening in government, having this program approved was huge for the continued critical research by NIH. JDRF furnished us with a document that shows who supported the SDP and who did not, but we are not here to make waves, we are here to try and educate all of our representatives about Type 1 Diabetes and encourage them to support our causes in the future…So we will thank Congress as a whole and move forward!!
One of JDRF’s current focus issues is getting the FDA to approve the outpatient testing of the artificial pancreas (http://www.jdrf.org/intranet/index.cfm?fuseaction=home.download&resourceFileID=DA118D0F-1321-C834-0362EBB714021EE9). JDRF began working with the FDA about 5 years ago and the Artificial Pancreas was placed on the Critical Path list in 2006. Currently, researchers can conduct clinical trials in hospitals and there are 12 in-hospital studies approved. The next step in getting the artificial pancreas approved is through outpatient testing. The FDA now needs to issue guidelines for researcher to follow stating their expectations and provide a pathway for research and product development” The longer it takes the FDA to issue guidelines, the longer we have to wait for results and ultimately new and better treatment devices for our loved ones.
In order to speed that FDA process, the JDRF worked with researchers and other experts throughout the world, to draft a document that the FDA could issue immediately. In other words, JDRF drafted the document for the FDA and now the FDA just needs to approve this guidance document (http://www.jdrf.org/intranet/index.cfm?fuseaction=home.download&resourceFileID=DA1412C0-1321-C834-03E5FE656D059121) and outpatient trials can begin immediately (JDRF and NIH are hoping to start outpatient trials THIS SUMMER)!! To make sure this is approved right away and not buried on someone’s desk, JDRF is asking members of Congress to sign a letter urging the FDA to issue their requirements right away. The FDA doesn’t want Congress to be unhappy with them, so the more signatures on this letter, the better!
That’s were we come in! JDRF has sent this letter, via email, to all our representatives..we going to give them a copy of this letter and we are going to tell them our personal stories of Type 1 Diabetes and ask them to please sign on to this letter!!
And our third issue will be asking our representatives, if not already a member, to please join the Diabetes Caucus! If you would like to see if who is a member..check it out. CaucusLists_Final There are 2 tabs…one for the Senate and one for Congress!
We have now been given our mission for the upcoming days on the hill and it’s time to break for lunch! What an awesome opportunity this is to actually see how each and every one of us can make a difference!