Hello, hope everyone is doing well... I have a question.. I got a call from my insurance company case manager today.. and now I am freaking out.. I get IVIG.. and am terrified I said too much, or not the right thing, or not enough etc.. Do they have the ability to pull/suspend my IVIG? Without a concrete diagnosis I have always been freaked out about this.. I was very honest about everything, including how much the IVIG helps and I can feel it wearing off.. but I am worried since ivig is expensive and I don't know how it usually works with insurance and ivig coverage without "concrete labs/tests".. any ideas/experiences?

I am on Medicare now but the first two years of my illness was with private insurance.
My experience with my case manager was very positive. As long as I thought they were helping, and they were, she continued to approve them.

I hope that between your Dr's. recommendation for the treatments and the fact you can tell how much the IVIG helps and you can feel it wearing off will be all she/he will need for you to continue.

Good luck;

scrubbs

I too have a case manager through my insurance company as well as a daughter who works for a very large insurance company and used to be a case manager herself. A case manager's job is to support you, not the insurance company. Obviously, they aren't going to go against your policy, but they will do all they can to make sure you are getting the treatment you need. Mine has been very supportive and even mentioned the possibility of getting additional IVIG during a period when I wasn't doing to well.

Don't be scared, most of them are there to help you. Good luck!

thank yall so much!! I know that's what she said, that she was here as a patient advocate.. but coming from the insurance company, made me feel less trusting.... sad but true these days! They did mention getting the IVIG set up at home instead of going to an infusion center, which would be GREAT!
I just fear them some day saying... well since you don't have a confirmed diagnosis of anything for sure.. then they will suspend it!

Hi,

I will try and address your concerns. Since you don't have a confirmed diagnosis, I would say that yes, the chances of the insurance company eventually questioning your use of IVIG is very real. Each and every year I have to go through a mini (or sometimes full) appeal process to keep my supply coming even though every month my infusion company documents my progress/stability and my neuro also notes in during treatment visits. I also have very well confirmed MG of 14 years! I suspect this problem will become worse with the new healthcare changes. I will go so far as to say that within a few years, IVIG will only be allowed for in-pt crisis situations. That's just my opinion, however.

Last year, an acquaintance of mine who has both MG and MS was denied for 5 months. She couldn't understand why that was happening and finally discovered since she had it documented that it was using to address the MS as well as the MG, the ins co said IVIG is experimental in MS, so they denied her. It took A LOT of work to get that straight. One "check" in the wrong box is enough to cause an issue.

I get offered a "case mgr" all the time through my insurance, since I am so "complicated." I've never taken the bait on that because I simply don't trust them to truly convey what I am saying and keep the facts straight. Nurses/case manager's have a lot of power. I prefer to trust the ones who are really working FOR ME--my neuro and my infusion company, and most of all, MYSELF. I know a lot of people use them and are happy with them, but just know that you don't have to if you have any of the concerns I outlined above.

I'm not trying to be a Debbie Downer, but I can tell you are worried, and wanted to make sure you can see both sides of the coin. FWIW, any time my neuro has had to help with my appeals, the IVIG is reinstated within days.

Good luck! Keep us posted.

4 eyes- thank you very much!! That was a great honest answer...and exactly my concerns! i know someone else who had their ivig suspended (they are not a confirmed diagnosis either)... and they had to go without for five or six months and now have severe disabilities... they really declined during that time.. it freaks me out.. and I of course am super paranoid about insurance trying to "help" me.. as i'm sure they are also trying to decrease their costs!
All the new changes also worry me... I just wish those people understood, if it was them or their family member, they would do whatever it took to get them to be as functional as possible.. that no level of disability is "ok" to not fight for better.. They wanted to obtain my medical records (for me to sign a release), and I am thinking I wont' sign it.... but then I worry if that could harm my case as well!?!?! We have so much stress with this all, them calling added to it!

I am sorry it stressed you, but I understand. I think with IVIG, the insurance companies will say, "Why spend $5,000 a month for IVIG when the same results (meaning decreases in MG symptoms) can be achieved with a $10 bottle of prednisone." And looking at it that way, I say "Why indeed!" because the $10 bottle of prednisone makes so much more sense on paper.

However, down the line the $10 bottle of prednisone will cause other issues--osteoporosis, obesity, cataracts, emotional issues, maybe diabetes. Those of course all cost money to manage. You can bet your bottom dollar that the insurance companies have stuffed shirts crunching numbers to see if the cost of taking care of the side effects ultimately is less than paying for IVIG (and it likely is) so you know where that will leave us and others who need expensive drugs.

Emotions and reason will have little place in the new plan. It's very scary. And yes, I agree...keep the medical records where they are!

I used to share 4-eye's view and turn them down. Recently, University of Maryland turned their case management program over to BC/BS for BC/BS members. I was leary of using one of their nursecase managers, but she recognized that the hospital had neglected to setup any type of care for my central line while waiting between treatments and setup a home nurse at considerable cost. All-in-all I've been happy with their program. That said, they have UMD looking over their shoulder.

I've only dealt with my case manager twice, but she's been wonderful. She managed to get my IVIG pre-cert through when my neuro's office had had no luck. Turns out they were submitting the request to entirely the wrong department, and my nurse got it sent along the right path. I had my pre-cert approval in about 3 days.