and one of the issues those with CIDP have to keep in mind is that IVIG is a 'standard accepted OFF LABEL' treatment for CIDP. KEY here is the off label part.

There have been few intermittent studies as to the efficacy of IVIG for neuropathies. Here is one going on right now:
http://clinicaltrials.gov/ct/show/NCT00305266?order=1
Unfortunately this one is in Germany. The expanding uses of IVIG have created a great demand for it, while supplies are at a constant low. The manufacturers right now have little need or incentive to run any Clinical trials to get it on the ON-LABEL lists.
The following organization seems to be the only group working for those of us with many conditions needing IVIG.
http://www.neuropathyactionfoundatio...ment/index.htm

HOpe this all helps, we are all in the same leaky boat. - j

Hi Pono-I was also diagnosed with CIDP about a year ago and have been on IVIG ever since. Before I started the therapy my weakness was getting worse very quickly. First my insurance was Empire BCBS and now it is Oxford. Both companies covered the cost of the medicine and the visiting nurse. I haven't had a problem so far.

Maybe the best solution is to change your insurance provider if you can. I hope it works out soon. It can be very distressing dealing with doctors and ins co when you have a chronic illness like this.

I just talked w/ Advocate from IG Living; Kris is awesome. she herself needs & gets IVIG ; also her 2 sons have been getting for many years ( for other disorders not CIDP) So she personally understands the complex issues... and was incredibly helpful ....

She'll be working on this and gave me tasks to do, that included getting copy of my policy from Humana , and specify what is accepted treatmts for CIDP since they're denying IVIG, as its NOT FDA approved for use in this disorder, which has many variants.

Kris validated this is so--that IVIG is FDA approved for very few conditions.
but said there are ways to still fight the insurance Co. She suggested & is sending the articles they often use & sugest DRs read & also use in these cases, which support the use of IVIG. Articles cite many, various DRs/professionals--which is better than "peer reviews" that may be one DR. or research. (which Insurance Co have more difficulting refuting or disagree)

Site has lots of great info...... if not familar encourage any w/ Neuropathy to check out, and if needed copy some of the info. for your DRs.....

*The Neuropathy Assoc. @

http://www.neuropathy.org/site/PageS...me=Type_Immune


Kris also gave me contact info for more advocates.... waiting for call backs.

and said make sure I'm keeping dated copies of all correspondence (inc. envelopes w/ postmarks) she said often the letter is pre-dated 1-2 weeks, giving less time to appeal, etc.
ALso make sure I'm getting ALL correspondence DR,who's my designated REP in appeal, is submitting. For my records & info but also for me to submit by certified mail, to verify receipt. (Humana has already used this excuse & apparently is quite common w/ many providors)

When I called Humana to request the insurance policy info, this REP tells me -after reviewing my case-- I've NOT been denied --that Humana needs more info from DR. This is Not what REP told me last week, she said I was denied & gave cited reason. I have gotten denial letters before; patient & Dr get copies. I haven't received any of those , so maybe this is the correct info now.

I called DR B office to update, & ask for copies sent to me & share info I've gathered. Missy said they often use info from The Neuropathy Assoc. when appealing to validate & support treatmt. and will send me copies as requested.

Missy thanked me for helping ...... but I couldn't/wouldn't have gotten to this point w/out the support, assist, & info. provided here....

THANKS to all who've been sharing & helping me w/ this . esp. the suggestions to contact IG Living.
..... will update
Blessings....

Kmeb.... thanks for all, esp suggestion to contact IG Living. as you & Dahlek expressed they are great.

As to the questions, issues you addressed in your last post-- Yes, I have Medicare Pt. D & Humana is currently my providor. I'm dually insured w/ Medicare (primary) & Medicaid (supplement)

I am considered /deemed "homebound" ( I fit this & other criteria for a state Waiver program, for TBI . that I'll soon be getting some help & services from. I just got the call from program to inform I qualified....)

Round 1 in this other fight is to get the IVIG Drug -gammagard --approved by them [Humana] or someone to cover and pay for the expensive drug.

then how or where to get infusions.
I began my infusion treatmts in hospital few years ago and Medicare covered all. (done at outpatient/ambulatory surgery dept; many people there getting various IV treatmts--there are no local infusions centers)

When my Dr went to another med facility, I was unable to continue geting my treatmts at this local facility after he left.
So I made long drive to new med center where he had "hospital privleges" and got treatmts for awhile.. Besides the 6 hour or longer trip, the infusions could take as long or longer (depending on what was going on in hospital)

I was told MediCaid covered drug & these treatmts at home, which in that situation would avg. 3 hrs.
So I enrolled in state medical assistance & got treatmts + drug at home ... until Medicare Pt. D went into effect 1/2006.
Since , I've been denied.....

Kris, IG Living advocate, brought up issue, since I'm dually insured, why wasn't this rolling over to secondary, Medicaid, who did pay in past??? I wondered this too but have never been able to get answers.. Kris gave me contact # & name that may help w/ this. waiting for call back from her.


I know there've been many changes RE: who, what, where can get infusions coverage .... and as many have stated, each state & insurance providor have own intrpretatations.....

so will see... I'm willing to go to hospital if was local but don't want to have to drive even further. My neuro is now w/ another Medical center 50 miles further than before. Looong drive( not too bad few times year to see my neuro) but for infusions every 3 weeks, esp. when one side effect of IVIG was always tiredness, and often headaches; also much down time in hospitals compared to getting at home BUT if this is how I can get may go for it.... but am looking for better options.... and hoping for best.
I did get spoiled getting the infusions at home; loved my nurse from Home Nursing agency that was doing. She still comes to our home to see my father . Always asks What's happening w/ IVIG??? just let us know if/when we can resume.... hoping that will be soon...

again thanks, for all the help; will update

Blessings

Pono,

I spoke to Humana's specialty pharmacy about this a while back - they only have allocations for certain types of IVIG - but - if they have what you need AND you are classified under Medicare rules as homebound - they said they could get home health to come out and give the infusions..... I'd give them a call - the name of their pharmacy is escaping me right now but call the number on your Plan D card and ask for someone who deals with specialty meds - you'll probably be on hold for a while but be persistent - they have a lot of people in the same boat!

Also, if you are dual eligible and you have the low cost co-pay - then your home visit for the med - which is usually billed at about $2,000 just for the IVIG itself - will be minimal... and Medicare/Medicaid should cover the home health portion...

Sounds like your doc really needs to get their request to the ins. correct - I truly never had a problem getting the med approved at all (the docs office did it within a couple of days)

Take care,