I received a letter informing me of this support meeting. The discussion is on Disease Progression and Remission Finding your "New Normal" Dr. Blum is a CIDP patient as well as a neurologist. at the U of Md/Balto/Wash Spine and Neuroscience Center. I intend on going. If anyone has any questions that they would like to ask, I am making a list and hoping to get answers. Ethel
Meeting to be held at the Hampton Inn BWI/Baltimore
829 Elkridge Rd
Linthicum, MD 21090 Pimlico conference room
Could you please ask if it's true that Medicare will no longer pay for IVig under Obamacare? And if Medicare itself won't will any Medicare Supplemental Plans pay for IVig? And if so, is there a deductible. Going on Medicare this year and worried about coverage. My neuro said Medicare wants CIDP patients to use steroids instead.
Another question - I'm getting most movement back in my foot after 2 1/2 years on IVig - drop foot main manifestation of CIDP - but neuropathy pain seems to be worse. Does the neuropathy pain in your foot/feet ever go away?
Thank you so much for all the information! When I try to press my Dr. about progress/regression, etc. he says "everyone is different" meaning that he doesn't know. I have to pick a new medical plan at work in the next couple of weeks and the one I'd been on has doubled to a $6500 deductible /out of pocket max which wouldn't be so bad except it won't last a full year for me since I have to go on Medicare mid-year. I found the podcast you referenced so I'll listen to that to see if my Dr. needs to be doing something differently. Looking forward to hearing about Dr. Blum's presentation tomorrow! Appreciate any news about this disease!
hi suzeque I am on medicare and as long as I went to the infusion center medicare paid for everything. when I went on home care medicare would not pay for the ivig Ethel
Hi Suzeque, went to meeting last night. DR. Blum talked about how his health had progressed from having one condition to another. .
There were quite a few who seemed to be in the dark about CIDP and were looking for answers to what caused CIDP and how do you determine that you have CIDP. He did talk about the different treatments available for the treatment of CIDP which I thought was good for those individuals. They also wanted to know how you could tell you were in remission and I don't think he gave a clear explanation.
Didn't learn anything about CIDP that I haven't read about.
I asked the pharmaceutical rep about whether Medicare would continue to pay for IVIG and she said that it has been approved by the government as treatment for CIDP and would continue to be paid for by Medicare. At this point in time with all the changes in health coverage because of the astronomical charges for drugs and treatments, I can only say we will have to wait and see. She explained what her company had to offer if you used the products they sold. Quite a good program.
the foundation rep talked about how they are trying to improve what the foundation is doing to get government bills developed and passed and how they are trying to improve what the foundation has to offer and that they need volunteers to set up a support group in all areas.. Also trying to increase their membership. They do send out a newsletter and they do have printed pamphlets. If you have any questions I didn't answer about the meeting, let me know. Ethel