Have been in holding pattern since Nov 1 waiting for insurance to approve monthly maintenance IVIG and today they came back and said
"Patient has been denied for IVIG; Information received does not show that patient meets criteria for Ig replacement therapy. Aetna considers the use of IVIG for Myasthenia Gravis maintenance experimental and investigational. A letter will be generated within 24 business hours and it will include peer to peer and appeal instructions. It will be mailed to the patient and to the prescriber’s office. "

My doctors office already sent a letter of medical necessity that I thought was very persuasive as to necessity, said I needed it to avoid incapcitating disability and included my doctors very impressive credentials and recognition as expert international expert with 20 years experience. Letter also said I have been ftreated by his office and I had MG confirmed by clinical diagnosis and SFEMG

This is all new to me. Now they want me to wait a week to get a letter explaining what choices I have meanwhile my condition has been deteriorating (not to ICU because I wont do anything that would bring that on but maybe I should take brisk walk for 30 minutes so I collapse???)

Any insight, advice, help on what I can do to get the monthly IVIG approved. I definitely had improvement from it. Thanks in advance.

typical insurance denial...they just don't care

follow the "appeal" directions to the letter and advise your MD to do the same

since IVIG is technically NOT FDA approved for MG, insurance companies can get away with denial of treatment even if they had approved it before and you have shown clinical improvement

my thoughts and prayers are with you

I don't have any advice, but how sickening that is!! That is one of my biggest fears.. how long were you on it for before they suspended it? Thinking about you, and hoping the person sitting in their office will think about if it was them or a family member and approve it for you.. just nauseating!!!!

Most insurance will "come around" if you can document at least 3 treatment failures of 3 different drugs or procedures. Treatments are usually considered a failure if they do not produce results within a reasonable amount of time, usually 3-6 months.

If you have not tried 3 and failed those treatments, there will not be a whole lot that can be done. IVIG is very expensive and unless there is a need, they will not approve it.

The "experimental in MG" line is so old. I've been getting that one for over 10 years. Luckily my doctor was in on the original research for IVIG with MG, so she just sends paperwork and all is good again. And, FWIW, I have had Aetna in the past.

Re Aetna - I have had policy since 1988 and my premiums have been over $1,200.00 per month (me only, I am single) for at least 2 years now, long before MG diagnosis so fair to say I am not a big fan, especially when I hear Medicare covers IVIG!

Prednisone and Mestinon - what else is there besides other immunosuppressants that I cant go on yet due to high kidney/liver test results?

This is one of the consequences (worldwide) of lack of serious clinical research in MG.

There is no evidence-based data to show that IVIG maintenance is beneficial in MG. Therefore it is considered experimental. So, approval by insurance companies is based on their good will (which may or may not be present).

seems like Aetna has a conflict of interest in that denying me coverage may cause me to go on disability and ultimately be unable to afford my insurance whereas if I can work I can afford premiums and Aetna has to pay for my care


I am hopeful and optimistic that my doctor has enough experience that he will be able to facilitate getting approval however just another stressful thing for me to deal with in the interim. This really is a very very frustrating illness to have and tests the bounds of maintaining optimism.

typical "3d" insurance treatment of claims

1. deny
2. delay
3. defend

sad

There's plasmapharesis, but let's hope they don't go THAT far! With your inability to take the other drugs, there is a bit more hope for you! It will probably be a battle, though.

Good luck.