[dahlek]

Mark asked the question about what IVIG is used for....Here are simple and complex descriptions....
Simple:
http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
http://www.immunedisease.com/US/pati...questions.html


Complex:
http://notesnet.carefirst.com/ecomme...6?OpenDocument
http://medpolicy.unicare.com/policie...DRUG/ivig.html

The second one defines Onlabel vs. OffLabel uses fairly clearly.
However if you are on Medicare you really need to check out the ImmuneDisease.com site, as it relates to those PRIMARY IMMUNE diseases that are covered by Medicare [tho some are not]. As a CIDP person, once I reach that 'age' I will probably have to jump thru hoops to get it? Time will tell.

IG Living a magazine put out free to IG users is a great resource to find out more about a variety of immune conditions/diseases and it's helpful in putting any one IG user into a much larger community and perspective. You can even get it on-line....no paper. I know of many folks who have contacted the staff [myself included] with questions that were thoughtfully, promply and thoroughly answered. http://www.igliving.com/

I have lots more info on IVIG, if you want it, just ask - j

[pono]

thanks for this and the help & info provided few months ago RE: IVIG

IG Living and Nufactor folks have been the Best, for advocating for me to (again) get IVIG for CIDP.

I've not been able to get since Medicare Pt. D went into effect.

I recently got formal approval , after long fight w/ insurance . now waiting for some copay issues to resolve. (for me, the copay of $700 every 3 weeks is prohibitively expensive; NuFactor folks and a good Rep from my insurance providor are now working to get $70 copay)
Hopfully, will soon be getting IG again.
again, thanks for the help, support & direction in dealing w/ this... I'd about given up till I learned here about IG Living...

I would also encourage anyone having problems w/ getting IVIG to contact advocates @ http://www.igliving.com

[BEGLET]

Good to hear you got hooked up with them - they have been helpful about me hopefullly getting treatments again soon - the traditional Plan D co-pays that are more then disability income certainly dont concern those in charge of Plan D do they..... hang in there

[dahlek]

IG Living to be super responders to questions and others IG needs. They all seem to me to be super-smart, proactive and knowledgeable people! Many of the staff either have immune issues or have kids with same. That makes a BIIG difference in true understanding about what IVIG does for us and how important it is to our quality of life.
One thing to think about tho is how best to get IG accepted as an ON-Label use for acquired immune disorders...there are many of us who once we reach that 'magic' age could definitely suffer even more because it's not covered unless you've got the bucks to pay whopping deductables...this site seems local, BUT it is national. The director has Multifocal Motor Neuropathy and was a lobbyist on the Hill...He knows the in's and outs, and has a solid national board and medical consultants. Please take a look at this site and start educating folks who make the decisions: http://neuropathyactionfoundation.org/index.htm
We can't expect others to do that work that we can easily do? So let's go do it!
Pono, I am truly, truly glad that you are getting some help you need! 's - j

[pono]

I just discovered Neuropathy Action Foundation and posted an article about when coverage is denied.

Yes, we do need to do more... w/ education especially

bless the folks at IG Living & NuFactor; for me, angels....
and have been so helpful, kind, personal and informative as well as being excellent advocates.

thanks again... for all the support and info


kmeb... hope things work out for you and your treatments soon resume

[Silverlady]

Well it looks like it is going to miss me. I went to the website about coverage under Medicare. Sjogren's slipped thru the crack it looks like. Thanks for posting this thread Dahlek. I'll be watching it for changes.

I have private insurance for 2 more years. I'll be looking for ways around the crack myself. If I can get myself on IVIG before my birthday 2 years from now, isn't there some way of continuing the IVIG under Medicare?

Billye

[dahlek]

I'd posted it 2 months ago? I'd done a double take reading Pono's and Kmeb's recent posts....Made me do that DUH? double-take...

As for Sjorjen's slipping thru the cracks? I thot it was COVERED!? As it is a PRIMARY rather than ACQUIRED immune issue....Have I missed something here? I'm getting slack and pre-occupied...OK beat me with a wet noodle..I'll probably bruise or something-like fall over. {like the Little Old Guy on the trike from Laugh-In...golly talk about dating a person!...mind you I was VERY young at the time...}

No really, Billye, I'd a thot you'd be trying IVIG and wondered why not? Forgive me but it got me thinking that despite all the neuro research being done in Texas, you had to be seeing all the dinosaur age docs? You and Cathie! With some rare exceptions.

But, IF you can continue a private insurance supplemental in addition to the Medicare sometimes...depending on the plans and costs and all, stuffs can be covered, I think...but I've no guarantees on this...I know when I hit that magic age...everything may go down the drain or something! It is NOT a fun thing to look forward to in any shape or form for sure!.. Hugs and HOPE to all! - j

[BEGLET]

Unfortunately Medicare doesnt make any decisions regarding your coverage based on past when you have them only..... and, depending on your condition, as Dahlek mentioned - the way you covered by Medicare on IVIG depends on your condition.... PID (acquired Immune) is covered under Part B, while acquired conditions like CIPD (which require a higher dose of IVIG to control,) under Part D - so the consumer bears the brunt of the drug cost.... Perhaps if you contact IG Living also, they could be of help? They are very actively lobbying for coverage for all who need this treatment - but restrictions on keeping it even for those of us currently being covered are being tightened - of course your doctor needs to show proof that it is helping - and Plan D's are hiring consultants to continually review all patient charts - so more and more pressure will be put on the docs to produce this - and even then its no guarantee.....

Again, urge you to contact IG Living - they are wonderful and respond almost immediately - and I'll bet if there is any headway being made with Sjogrens - they will know or can direct you to who does....

(and yes, those with private insurance its much easier) Plus, under Plan D unless you recieve financial relief - once you reach catatrosphic you continue to pay a percentage co-pay all year for the med.

I hope you can get this treatment and that it will help!