Susan DolinSedona, AZ, United States
Oct 3, 2017
On Friday. September 29, the Sedona Community Center invited several local and state officials to address issues regarding seniors, which I attended. A young man named Steven Flanagan, Rep. Tom O'Halloran's Veterans Service Representative, was there also. I spoke to him at length about the issues raised in the petition, and demanded to be scheduled for a meeting with the Congressman. Congress is breaking soon so I plan to do it in Arizona. Unfortunately, as you all know, I have tried to schedule a meeting with all of the relevant decision makers: Kevin Brady, Chair of the House Ways and Means Committee, Mike Enzi, Chair of the Senate Budget Committee, and Bernie Sanders, the ranking member of the Senate Budget Committee. I got no response from any of them. I also contacted Senator John McCain, and I wrote an update covering what happened with that. I am also going to try and meet with Senator Jeff Flake. We need to get in the door with both houses of Congress. If you would be interested in helping with this effort, please call your Representative in the House and both of your senators and tell them that you support a change in the law to allow patients with rare and orphan diseases to receive direct financial assistance from specialty drug manufacturers. Here is a script you can use: "My name is__________. I am a constituent of _________ and I live in __________(city and state_). I am requesting that Rep.__________ ][or Senator _________] support a change in the anti-kickback provision of the Social Security Act to allow patients with rare and orphan diseases to receive financial assistance directly from the drug manufacturers, even if they are on government-assisted prescription such as Medicare Part D." Thank you all very much.
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