Denied/Delayed ivIG

    • January 19, 2017 at 7:27 am


      I got diagnossed with cidp in the spring last year. My physician warned me that ivig treatments take a long time to get approved. It took them 3 months to issue a denial. We appealed, they denied it. The appeal is currently sitting with an independent reviewer. My insurance said this decision is final. Meanwhile my condition is getting worse. Has anyone experienced getting denied by insurance? Are there any options left to fight? Were you ultimately successful?

      I fear if my condition keeps getting worse, i won’t be able to work, and become completely disabled

    • January 19, 2017 at 9:39 am

      Oh my, this is terrible. I’ve had no issues with my insurance company (AETNA) approving my IVIG. Best of luck.

    • January 19, 2017 at 2:12 pm

      Aetna denied both my, 1st and 2nd requests for IVIG. There was a 3 week wait after each appeals submission. I found out on my 2nd appeal, further testing was needed to rule out other CIDP variants. So I needed another test taken. So with a negative “Anti-Mag” result included this 3rd appeal was sent out.

      2 weeks later SUCCESS! I got my long awaited Phone Call from Bio-Tech Infusion Therapy. To set up my Infusion Plan Calendar.

    • January 19, 2017 at 2:35 pm

      Marvin, You don’t say what insurance carrier policy you have. Aetena’s current criteria for pre-certification of treatment with IVIg or SCIg can be found here:

      Your Neurologist must show you have either GBS or CIDP to be pre-certified. Use of the proper ICD-10 coding can help get your prescription approved as medically necessary.

      Several other appeal options are described here:

      If you can give us the exact name of your policy, maybe someone in these forums has experience they are willing to share with you.

    • GH
      January 19, 2017 at 10:31 pm

      It’s an example of how insurance companies dominate treatment rather than attending physicians. I had a Blue Shield of California HMO. The day a neurologist diagnosed GBS (later changed to CIDP), he put me in the hospital. The next day I had the CSF test. It supported the diagnosis and the day after that I started IvIg treatment. I was very fortunate to be well insured when I needed it.

      You don’t say what tests supported the CIDP diagnosis. If you had a positive CSF test, IvIg should have been approved promptly.

    • January 19, 2017 at 10:36 pm

      Hi All. Thanks for responding. I have Cigna here in Illinois. They also require a pre approval which my Dr filed. It was denied. They sent a gigantic packet explaining the other tests needed. We appealed, and did a peer review, they still denied it. I have done numerous tests including a spinal tap and mris. We also got a second opinnion from a nuerologist from Northwestern who also concluded the need for ivig. How else do I show that I have cidp?


    • January 19, 2017 at 10:41 pm

      A CSF was performed. I think the issue is my doctor said that my csf levels were boderline. Because it is not definitively high, the insurance company is saying other things weren’t ruled out.

    • January 19, 2017 at 10:50 pm

      CIGNA has many plans (individual plans, family plans, business plans). Which one do you have exactly and in what county? As an example, CIGNA appears to have 15+ Individual Family plans, each has a different name and number.

    • January 19, 2017 at 11:15 pm

      A summary of CIGNA’s general CIDP criteria is here:

      It is based on a document developed by the National Organization for Rare Disorders, Inc. The full document is available to CIGNA members at:

      However, individual plans have different restrictions and criteria for coverage qualification.

    • January 19, 2017 at 11:27 pm

      I ran across a CIGNA coverage policy that seems to make it easier to get Plasma Exchange (PE) approved than IVIg. This is the other primary treatment for CIDP and many, myself included, got help from PE where IVIg did nothing for them.

    • January 19, 2017 at 11:34 pm

      Thanks! I’ll look into those resources in the morning. To answer your qestion, I am on a group plan PPO through my job. I have multiple family members on my plan. I am in cook county

    • GH
      January 20, 2017 at 10:14 am

      Another possibility is a nerve biopsy. This is used in cases where the diagnosis is uncertain.

    • January 20, 2017 at 6:39 pm


      I mentioned PE my dr said that she was concerned about the infection risks, and said that ivig worked better in her experience. How was your reaction to PE? Did you have side effects?

      Also, side note. I am looking at my insurance card. It says that the plan name is Cigna Option Plus. It is through my job.

    • January 20, 2017 at 9:46 pm

      Here is an old post that discusses PE vs IVIg:

      As far as side affects of PE goes, there are far fewer than with IVIg. PE is recommended for those that have had bad experiences using IVIg, and there are many more bad experiences from IVIg than PE. Dosage and infusion rates, along with what and how much benedryl, etc, etc to use before administering the IVIg… all come into play due to the less tolerable nature of the overall IVIg treatment process.

      Yes, there is an increased risk of infection if one does not take proper care of the PE “port”. I had absolutely no issues with any kind of infection with PE, and I had several ports over 2-3 years. Installation of a port is more invasive that an IV, but not during or after PE treatments. I had all sorts of complications with IVIg (cuts, bruises, infiltrations, swellings, etc) as a result of being poked with a needle by people (RN’s at a Center of Excellence!) who didn’t really care and often brute forced the needle because my veins were not always popping out for them. I hate IV’s because of this experience! I’d rather have a port!

      More importantly, I believe quite strongly I would be walking today if my first Neuro (a non-CIDP specialist) had me do PE before IVIg. Now, I recommend 3 days of PE before starting IVIg as a general rule.

      I can’t look up your policy because CIGNA has it hidden behind their system. But you can access it because you are a member. use the link I gave you above to sign in.

    • GH
      January 20, 2017 at 11:13 pm

      There is no simple answer to which treatment works better. IvIg is effective for many, but it didn’t do much for me. I was switched to PE and never had IvIg after my initial two loading doses failed to arrest the progress of my illness. There is an infection risk, but that’s true of other things which are commonly used such as PICC lines. The medical people are all aware of this and they watch for signs of infection.

      Treatment of CIDP is not cut and dried — it sometimes requires trial and error.

    • January 21, 2017 at 4:39 pm

      Ok. I just got my official appeal from the third party (AllMed) They upheld my insurance’s decision to deny ivig> They said that my diagnosis doesn’t fit the criteria for cidp. They said my diagnosis is more in line with brachial plexitis. Further, it says that this condition does not definitively show(based on clinical trials) helps people with brachial plexopathy.

      What is brachial plexopathy.
      ? Is this a different thing, or just a catch-all term that includes cidp? Also, My insurance says this decision is binding. Where can I go from here? The letter says I can file a lawsuit, but how can I get past this? What good would a lawsuitt do? They denied my appeals 3 times before this. What do I need to show them to get a different result?

      Also my doctor mentioned doing a nerve biopsy, but she wanted to make sure the muscle in my hand was dead, so s not to damage living tissue.

    • January 21, 2017 at 4:53 pm

      Write a letter (similar to the one I gave you the link to earlier) to the Illinois DOI here:

      Or request an external review here:

    • GH
      January 22, 2017 at 4:48 am

      The first thing you should do at this point is to consider the suggested alternate diagnosis and try to confirm it or to rule it out. Brachial plexopathy is not a form of CIDP. A description can be found online.

    • January 22, 2017 at 10:42 am

      Thanks @Jim-LA. I’m filling out the external appealk form now. One question, This last appeal was external, but the compant was picked by Cignna. I think I signed something that said I would recognize this commpany’s decision as final. Can I still file an appeal with the state?

      TThanks @GH I’m reaching out to my doctor tomorrow about our new treatment plan.

    • January 22, 2017 at 4:34 pm

      If you signed a waiver you can claim you were pressured into it by CIGNA as the only way you could get consideration for treatment, ignorance of your rights under Ill law, and unfair treatment because you were not properly advised of your options. In short, CIGNA bullied you to protect their profits.

      If requesting an external review, tell them CIGNA forced you to have one through them and pressured you to sign some kind of waiver.

    • January 24, 2017 at 12:49 pm

      You need an EMG test from a neurologist with CIDP experience. Just use pulsed Methylprednisolone ( Solu-Medrol ) – a 5 or 6 day course and use an ultra low carbohydrate diet for that period, why are you fixated with IVIG? Get treatment ASAP.