Need Ideas for getting IVIG pd for

[otksmama]

Can anyone share their experiences with appealing insurance companies' policies re IVIG? We have CIGNA, but they say specifically in the policy they will not cover for PANDAS. dr. K says we must consider IVIG as the next therapeutic step. My head is spinning. As if it wasn't already, haha.

Or does anyone have other ideas they can share? What about discount programs pharma companies offer for persons who self-pay?

Does it matter who orders the treatment, in terms of cost? In other words, would we save money if local doc ordered vs dr k, or are there differences between pandas docs themselves? (He is also pt of dr t).

[pr40]

i think I heard that some kids got IVIG paid with "encephalitis" diagnosis. apparently, the diagnosis is only a description and so covers many conditions.

but I haven't tried this myself.

[LNN]

Some have had success documenting immune deficiencies or encephalitis and coding it that way. Some have found more affordable options with home infusions. If you search the archives, there are a few threads about different companies that do home infusions.

 

If you don't have success getting coverage, oout of pocket can be very expensive. Not everyone is in a financial position to swing it. But that does not make you a bad parent and you won't be depriving your child of the "only" or "best" chance for wellness. IVIG can be great for some. But others have recovered without it, following other paths. So try no to tie yourself into a pretzel with guilt if it means too much of a financial strain. There is no single path or protocol that works for everyone and if IVIG ends up not being an option for you, know that you can still get your child well.

 

Good luck!

[qannie47]

I just went thru the same ordeal....I recommend at this point to stop using the word Pandas with your insurance company. Because I pursued ivig for Pandas, it is now in my child's insurance profile and I am concerned that other treatments are now going to be questioned...One thing that I heard about, but did not pursue, is that the government has a program in place that will pay for "experimental treatment", not covered by insurance. I suggest you start researching this on the internet or even calling your congress man. Ask anybody whom's work might be affiliated with contacts with government that you know. I know that the University of Chicago has a department that deals directly with the CDC. They are involved with research such as Aides, as well as other infectious diseases...etiology, treatment....My point, all their work is done thru government grants...so they may have a go to person to contact who can lead you to this program...if it still exists...

[otksmama]

Good pt qannie47 re mentioning w ins. We have avoided so far. I thought about trying to get reimbursed for seeing two PANDAS docs we pd oop for but am not going to for that very reason.

I checked my ins comapnys policy on IVIG but don't see that they cover encephalitis...but it's not listed as something they don't cover either??