[pono]

IVIG has again been denied. My Dx: CIDP.
Insurance Co. now states reason for denial is that IVIG is not FDA approved, and not "indicated" for my condition.
I thought it was. But after having this conversation w/ Rep. from Humana, did a little research. one article cites only 6 "approved" conditions for IVIG & CIDp was not one. CIDP was addressed in this article. seems the issue (basis for insurance co. denial ) is FDA "approved" vs potential benefits, off label use of IVIG for the many conditons listed, inc. CIDP

http://www.emedicine.com/med/topic3546.htm

I'd been getting IVIG for few years. I'm "dually insured" --Medicare primary w/ Medicaid supplement . IVIG was covered by state medical assistance but since Medicare Pt. D, it's been denied.

Intend to appeal-again; Rep tried to help and re-appeal but was unable. said my DR & I will have to try again . I'm waiting to hear back from his office to see what/if we can do anything. At last apt. DR said IVIG is the treatmt I need but how to get (besides paying out of pocket for this expensive treatmt; cost of just drug is $3000-- so not an option for me)
I"ve gotten much worse since not getting IVIG.....

I know folks in this forum do get IVIG; some have addressed issues w/ insurance .
Does anyone have any suggestions, insight in what can be done? perhaps changing my insurance providor ??? I do have this option & Humana does seem a company that has had numerous complaints. Or will other Insurance providors also deny for same reason-- that IVIG is Not FDA approved, for my condition.

What are conditions/Dx which others are getting IVIG [paid by insurance]
ARe there better insurance co. , that will approve & pay for IVIG??
Suggestions, help in getting IVIG again, appreciated....


ps. .thought I was Posting this as New Thread, but it's here in this one RE: CIDP & related issues.
if there's a better place or way to re-post please advise. or if someone more adept could re-post for me?? connections problems w/ PC have resulted in losing posts, as well as other problems [mainly the neuro issues] w/ writing & posting. I'm needing any/all help can get in this matter. THANKS.

[BEGLET]

Hi - sorry about the Medicare and IVIG issue - just went thru the same thing... indeed IVIG is supposedly not approved by Medicare for CIDP - but there is so much confusion regarding this - that it depends on your doctor, insurance, and where you are receiving the infusion.

If you were getting it at home - Humana just dropped their contracts with home home infusion pharmacies - which is how the infusion agencies were making their money as they could not bill for the home nursing and were making their money on the med only.... Humana Medicare Part D patients are now in a real quandry.... I found I can probably get infusions done only at the hospital day unit (not a free standing infusion center) - and it will still be covered (it depends on the hospital)...

I would suggest checking out this site and emailing them - they will respond - www.igliving.com - I found them very helpful - they had an actual person call me almost immediately and may be able to offer you options depending on where you live, etc.....

Best wishes - I believe there are options out there

[dahlek]

this is how it 'goes' developing policies all over the medical universe:

http://www.aetna.com/products/rxmedi...ivig_2007.html

Under 'precertification criteria', CIDP is listed LAST, as it's being identified as a 'condition' of it's own. Before that it was a combo listing of GBS/CIDP putting it hier up the list so to speak.

Looks like Parts B and D conflict each other in many ways. Wish I could be more helpful...If you let me know thru PM which state/specific plan you are in [I need no more than that] I might be able to cull out some area policies and procedures...might, no guarantees.

Don't give up! IG living magazine has a staff that's been very helpful to me as well. It's a good resource with active participants. - j

[shiney sue]

Medicare and medicaid dropped at home IV's last year,do it in hospital with
short term care,very little og them or nurning home until done. Sure
there are other places in bigger cities,but nursing home now in smaller
towns. It's like they make more money to keep one sick. ahhh c--p.
Don't know who to believe anymore..Get a operation,say hernia,hospital1 day
by by or nursing home,home health is slowing down. Why gas and wear and
tear on cars,most nurses use own car.Makes one cry,why look at our
home owners insurance or car insurance...What's that Marvin Gaye song
What's going on,what's going on...Sue

[pono]

thanks all for support, info....
I did email igliving.com advocate and hope will get call or some advice.

I just spoke w/ neuro's office; as he prescribes IVIG often, he has one person who handles this. I updated Missy on what transpired w/ Medicare who filed a complaint on my behalf w/ Humana, that generated a phone call w/in day from insurance co.
That Rep. went thru all the old reasons for denial then after being on hold awhile came back on, to tell me reason for denial , per review May 2007 was that IVIG is not FDA approved for my condition -CIDP.
as I expressed before, I thought it was, but some research seems to show it's not.....

Missy said that DX: CIDP has been used for other patients and insurance approved. She couldn't remember if Humana was one of the Co's but she said she will resubmit appeal and get back to me.
we discussed pro/cons of changing insurance providor now; she feels at this point may be better to wait & see what Humana does, than start from scratch w/ a new insurance co, and go thru the same --approval/denial/ apeal game....

DR. B , my neuro, feels IVIG is THE treatment and is indicated for my condition. that should be enough but isn't.... DRs/ offices get jammed up dealing w/ insurance issues ... no wonder we, as patients don't get what we need or deserve....

I wonder how many Drs, medical professionals are on these Review boards or if it's businessmen making decisions to save or make $$$$.

This process of denial, appeal, denial, appeal reminds me of the social security disability process..... that's how it went till I went before a judge & was finally approved for Disablity years ago.

Perhaps persistance will pay off in this issue too... and get approval to resume IVIG...

again, thanks to all, for your input, support and help....

[BEGLET]

Pono,

I hope that IV Living gets back to you - they are very very helpful....

You have Humana Plan D? Because IVIG is not approved by Medicare at home for CIDP - the home infusion agency was only making money on the meds - again, not the nursing....Humana approved the med - but have cancelled most of their contracts with the home pharmacies - therefore they do have a specilalty pharmacy that will give you the med (I had no problem getting approval for it) - but you will have no way to infuse it unless you are classified as homebound and then home nursing is a possibility and paid by Medicare.... as it is - many home agencies are droping medicare patients all-together - as they see treating CIPD as more of a philanthropic gesture because of the low reimbursement rate....

Again, some hopsitals will still administer under Medicare in their on-site day centers - your doc should be able to get this approved but as reimbursement rates have been dropped - many hopsitals are dropping this service too....

My home agency tried to get me to change to Blue Cross Plan D because they just signed a big contract with them and dropped all Humana clients - but theres no guarantee that they will cover you anyway - the agency I worked with has hired a doc to review every CIPD patient and has been encourage to cut at least half of them...

One of the main reasons again is - Medicare is very vague on the restrictions regarding treatment for CIDP - and some agencies and insurances will work with you, some wont....

Encourge you to continue to contact IG Living - they are advocating very strongly in this area and are very much on top of the situation and will be very honest with you!

(also, if you have both Medicare and Medicaid - you can change Plan D at any time during the year)

Hang in there!

[dahlek]

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

[Valese72]

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.

[pono]

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....

[pono]

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