Hi Beth,
When I worked for the Federal Government (NOAA), I learned that when you run into an intractable problem that involves the Federal Government, a hand-written letter to your Congress critter, the guy who represents your district in Congress, and each of your Senators is very often the key to unlock your problem.
Don't be afraid to play the sympathy card, survival is no place to get noble, so lay it on as thick as you can. Ask nicely (hell, plead) for assistance with the system, and the chances are very, very good that suddenly, the medicare folks will be falling all over themselves to help you both get the care you need and to make the problem go away.
Hand written, hand addressed envelop. Very effective (unlike email)
When you write, imagine how your story would read in a newspaper article. Make it tug on the heartstrings for all you are worth. No politician wants to read such an article, UNLESS it shows how the politician rode in on his white horse and saved the day.
Do you copy?
If you'd like, you can pm me a draft, and I'll massage it for you.
Bart
My intro:
http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!