IVIG denied

    • Anonymous
      December 2, 2010 at 8:45 pm

      Here I am going into year 6 of infusions and Blue Cross has pulled the IVIG plug. This hasn’t happened before. My nurse and I have called my drug company that supplies IVIG for home infusions thinking a temp glitch. Today got a 7 page letter from BC saying my CIDP diagnosis wasn’t valid. Well–they’d been okaying it the whole time so guessing someone wanted to be the holiday scrooge.

      I just got approved for financial assistance with the IVIG 2 weeks ago–go figure?? :rolleyes:

      Neuro had repeatedly told me if I went 6 weeks without IVIG back in the wheelchair I go and this time he doubted I’d get out again. For me it’s the CIDP nerve pain. I couldn’t fathom that again. No pain drug would stop it.

      So till it gets reinstated I plan to eat lots of Breyer’s Ice Cream and chocolate.

    • Anonymous
      December 2, 2010 at 9:00 pm

      Please stay on top of this situation. You need that medication. If you have any doubts about SOMEONE footing the bill for your IVIG going forward, consult an attorney. I am a lawyer and I represent insurance companies. Blue Cross may not be able to walk away now after having paid for your IVIG for so long. If you cannot afford an attorney, look in the phone book for your local legal aid office. You can also phone your local county bar association and request a pro bono lawyer. Best of luck.

    • Anonymous
      December 3, 2010 at 11:33 am

      Please keep us posted. I am worried that this may become the norm in the future when the bean counter take over medical care. If anyone else has a similar problem or knows of someone with a similar problem, please let this forum know.

      In the meantime Limekat hang in there. My prayers go with you. I agree about getting a lawyer. Hopefully you find someone that will help you pro bono or at a very reasonable rate.

    • Anonymous
      December 3, 2010 at 12:17 pm

      I think that cutting back on IVIG administration is the way of the future around the world due to high costs. I know that my husband has been pressured for at least two years by his neurologist to accept alternative treatment, and we have dug in our heels. But he has his appt. in March with EMG and NCS to be repeated and then the big discussion will happen again over weaning him off IVIG. His GP is trying to wean his IVIG now, but just had to knock the dose back up because he started losing use of his rt hand again. I don’t think we will win this time as the government has joined in the recommendations to get CIDP patients off IVIG.

      He had a bad experience with getting Sepsis with Imuran, and I know the next drug on the list is Cellcept which can have similar side effects. And the efficacy of both those drugs with CIDP seems marginal. So we are already anxious about his treatment regime. From reading it would seem safer to go with the pulse steroids, but he has cataracts developing already and he has never been on steroids. So that is worrisome too. I keep reading to try to find safe alternatives to IVIG that may work, but I really haven’t turned up anything other than the steroids. Any suggestions would be appreciated.

    • Anonymous
      December 3, 2010 at 12:21 pm

      Limecat, BC/BS refused to pay for my cellcept, even though I and my neuro supplied BC/BS with extracts from reputable journals showing that cellcept is a standard treatment for CIDP, especially as a substitute for prednisone which cannot be safely used for long periods.

      Long story short, I was denied twice by BC/BS and was informed that I had the option of an external appeal through my state insurance commission. I went that route and BC/BS’s decision was REVERSED. Thus the insurance company has to reimburse me the $3,000+ out of pocket cost, less co-pays.

      It takes awhile to get a decision and then your reimbursement (even the $25.00 filing fee was reimbursed), but it is worth it if you can foot the bill for 3 months or so. I’m no lawyer, but it sounds like you have a darn good case.

      Good luck, Limecat.


    • Anonymous
      December 3, 2010 at 5:00 pm

      What brand of IVIG do you get? If you get Gammaguard there is a program available for people who can no longer get IVIG. You should try to contact Baxter to see if they will help you.

      Also, contact the Foundation & they should have info for IVIG assistance.

      You can also fight the ruling from BCBS – you should have a case manager assigned to your case. You would probably need a letter from your neuro too.



    • Anonymous
      December 3, 2010 at 6:57 pm

      As I too have BC/BS.
      Two things come to mind tho?
      There IS an appeals process – web up you plan’s site and get the ‘details’ if you can…. or call and ask a rep to send you via e-mail or real mail all INFO ON THIS PROCESS.
      Secondly? It is my understanding that continuous IVIG is a ‘given’ once appproved, BUT only IF it shows either noticable and/or continuous improvement… or that, without it there is a definite reduction in the quality of life and of function.
      I would find out the ‘process’ first for appeal, then get a lawyer to help both you and your doc put the KEY and CRITICAL wording for you case to continue infusions. Soo? Go out and appeal! If it becomes necessary, contact news station and paper advocates and get the word out!
      This sounds depressing right now, but with the right sort of help, you will get what you need. Don’t be paralysed by the fear? FIGHT BECAUSE OF IT!
      My heart and the little strength I’ve to spare are with you! Please let us know how thing go? Keep faith and heart! I am sure that good things will come your way! HUGS etc!!!!!

    • Anonymous
      December 3, 2010 at 9:36 pm

      This has never happened to me but I was on IVIG for four years and I can put myself in your place and say “what would I do”.
      The first thing I’d do is keep calling my insurance until I found out what they wanted me to do to make it valid.
      I’d get support and advice from my doctor.
      I’d call the foundation because they do help when insurance denies coverage.
      I’d consult with an attorney.
      I’d go to this forum and talk to my people.
      I’d probably try to do searches on places like google, webmd, dexknows, ask to find out what to do when insurance denies treatment that’s needed.
      I’d go to the web site of my insurance and learn how they work.

      The tapes from the 2010 symposium are now available to listen to. You can go to the foundations main page to listen to the one on insurance issues. You have to join twitter to listen.

      BIG HUGS, if I could I’d come to you and help.

    • Anonymous
      December 4, 2010 at 8:45 am

      i was reading a few months ago that this was happening alot more. i am on my 7th month of ivig and it would be devasting if ionsurance stopped paying. i mean one more thing to be stressed about.
      please keep everyone posted.

      what state are you in? would that matter or is it case by case? i mean what are we supposed to do if that’s the treatment that is working?? ugh what a nightmare….going for the ice cream and chocolate in support of you.;)

    • Anonymous
      December 4, 2010 at 11:45 am

      Hi everyone,
      I agree with Liz, we need to pull together and fight together! I am going Mon.
      for what may be my last IVIG treatment too….I feel as though my new Neuro
      is working for the ins. co. (CIGNA) because the last couple of times I went he
      keeps mentioning how expensive the treatments are!! I know the treatments
      are helping me in every aspect, walking, balance, fatigue, and especially the
      pain. I had IVIG for 9mths and then I went six months without IVIG and quickly went downhill!! Now six mths. later after another round of IVIG they want to make me suffer again?? I was dx with CIDP Anti-Mag in 2008. My anti-mag antibodies were 13,000 and my IGM was 30. Now
      my blood test are normal. Go figure!! My NCS and EMG were normal but I
      had a positive skin biopsy for small fiber neuropathy. I’m scared to death to
      think I may have to go back to that horrible bone pain again. How dare they
      treat us like this. I’ll do anything to avoid that. Good Luck to you and all of us.
      Miss Judy

    • Anonymous
      December 4, 2010 at 2:44 pm

      I live in North Carolina and my Blue Cross coverage is from being a state employee. The BC letter is full of legal jargon for the immense steps I must take to even get to first base. I can’t wait very long for IVIG to be re-started.The drug company said both they and my neuro were on it for getting me back on IVIG. Yes, IVIG expensive but nothing else worked.
      I use Gammagard S/D.
      Keep my spirits up, folks, cause this looks bad.

      Reason for Denial:
      Request for coverage of IVIG therapy is not covered because there is insufficient information that the member has a condition listed under Plan coverage policy for which would be medically necessary. Initial evaluation of the members neurological condition is not provided. Records do not show a presence of a covered indication per coverage policy. IVIG is considered investigation for members condition. There is inconclusive evidence that, when used in a non-investigational setting, the service or procedure improves health outcomes or is as beneficial as any established alternatives.The Plan does not provide coverage for investigational services.

      (Immune Globulin Therapy, Investigational (Experimental) Services

    • Anonymous
      December 4, 2010 at 3:44 pm

      Just talked to a friend who works in the medical field out of state and more knowledgeable than me about how to proceed. She’s looking into some options and what attorneys in my area are best qualified to handle IVIG denial. She said this is time relevant and we gotta hit this hard.
      I will go to my neurologist’s office first thing Monday.
      I appreciate all your posts, big thanks. My neuro has said many times the insurance companies are coming down hard and he feared for his patients.

      Have any of you used attorneys to hopefully get benefits continued till the situation is resolved??
      What did you do to have benefits continued while situation resolved??

    • Anonymous
      December 4, 2010 at 5:54 pm

      I am not licensed to practice in North Carolina and not familiar with North Carolina law. I can tell you that insurance benefits are provided pursuant to your insurance “plan”, and that plan is generally considered a contract under the law. From that portion of the denial you quoted, it sounds like the insurer is now taking the position that it has insufficient documentation regarding your initial diagnosis requiring IVIG. That being the case, you may simply need to provide that documentation to the insurer in order to reinstate coverage for your IVIG. Be prepared to jump through whatever hoops you have to in order to get the coverage you need. It will be worth it in the end.

      Your insurance plan is the contract that dictates what the insurer must cover. If you don’t already have a copy of that entire plan, get one immediately. You can contact the insurer and inquire as to what exactly it needs in order to reinstate coverage. Use the contact telephone number on the back of your insurance card. Keep meticulous written records of EVERY communication with representatives of the insurer, including time of day, date, identity of the representative, and substance of the conversation. Blue Cross/Blue Shield has case managers assigned to a lot of people with chronic conditions who get expensive treatments like IVIG. Here in Pennsylvania, my IVIG treatment is considered a “shock” (expensive) claim for BC/BS, and believe me, they keep track of my treatment. You can ask to speak to your case manager, or have one appointed. It helps if you can deal with one individual who knows your case. Confirm everything in writing.

      You will also need your doctor’s help here, not only to provide the necessary documentation, but if necessary to advocate for you with the insurer. My doctors went to the mat for me with BC/BS when it refused to cover my Lyrica, and we got it approved.

      If you are not getting anywhere with BC/BS directly you have a number of other options. You can contact your state insurance commissioner in North Carolina and ask for assistance and/or file a complaint. You can retain counsel to represent you. I recommend you retain someone familiar with insurance benefit issues, perhaps an attorney who handles disability cases or an elder law attorney. I understand there are now businesses that specialize in dealing with health benefit issues on behalf of insureds such as yourself; perhaps you can locate one in your area by using the Yellow Pages or the internet. Your state insurance commissioner’s office may also be able to provide help finding one as well.

      It seems totally inconsistent to me that Blue Cross/Blue Shield essentially is now taking the position that it never had documentation your INITIAL diagnosis required IVIG treatment, yet covered that treatment for a number of years prior to issuing a denial. Something is fishy here. Keep us advised.

    • Anonymous
      December 4, 2010 at 6:16 pm

      Well, I see Goodney answered while I was typing…. but here goes anyway.

      In my case I have a Summary Plan Description. To date I have not needed the entire Medical Plan.

      This case really interested me so I found this:


      This let providers (that’s me and you, right?) search for BCBS NC Medical Policies.

      So, I entered “IVIG” and got this:


      Which is the BCBS of [B]North Carolina Corporate Medical Policy Immune Globulin Therapy[/B] which was last reviewed 8/2009. This implies it is a current document.

      Note, that similar to an Aetna Policy I posted some weeks ago, it details exactly what is required to be eligible for IVIG, including the required use of IVIG only for FDA-Labeled Indications, which means no off-label use is likely to be approved. Of course, it also lists when IVIG will not be approved.

      In this case the poster has shared that the BCBS letter included the following language: “[I]…Initial evaluation of the members neurological condition is not provided. Records do not show a presence of a covered indication per coverage policy. IVIG is considered investigation for members condition.[/I]”

      Initial Evaluation…. What does that mean? A Doctor’s Office somewhere did not provide required documentation.

      Records do not show…. What does that mean? A Doctor’s Office has submitted a diagnostic code for a condition, not CIDP, which is not covered. Why do I say, not CIDP? Because CIDP is covered. Refer to the Plan above.

      Finally, if you cannot open the linked .pdf file then you could download the free adobe reader.

    • Anonymous
      December 4, 2010 at 6:48 pm

      Great job coming up with the policy information. That is the key document, as it dictates the legal rights and obligations of the parties. I think you are on the right track; this may simply be a paperwork issue, or perhaps a mistakenly entered ICD 9 diagnostic code. It may now just be a situation of dotting the i’s and crossing the t’s in order to get the coverage back in place.:)

    • Anonymous
      December 5, 2010 at 12:00 am

      Before I started IVIG I asked for a letter of coverage from BC/BS because I was nervous about starting it due to the high cost. I knew that I could not afford it without insurance coverage. They did send me and my doctor a letter which said that they did cover IVIG for CIDP. Since I had already paid all of the deductible and out-of-pocket for the year everything through this December would be “free” to me. I called BC/BS representative to confirm this. Anyway, I started the IVIG in early August of this year and everything was going smoothly. I was going for treatments every four weeks. BUT in October I got a call from the clinic that my insurance company had not paid and that they requested my medical records. I was due to go back for IVIG in three weeks so I call the patient representative of BC/BS and was told that the doctor (employed by BC/BS) was reviewing my case. In other words, they were balking about paying for the IVIG. I kept bugging them but did not get feedback from them. So, I called the human resource guy at work and told him that if BC/BS did not let me know soon then I would get off-schedule with my treatment and told him that I would have get a lawyer to assist me. As soon as I used the “L” word things moved more quickly. Our human resources guy called BC/BS and they got the “lead” out and I was ironically notified that they would cover the IVIG the day before my next treatment.

      Therefore, I certainly agree that you might need a lawyer.

      Hang in there!!!

    • Anonymous
      December 5, 2010 at 4:01 pm

      i was denied by bc/bs for my empi machine. for those who don’t know what that is…it’s an electrical machine that you hook your muscles and it shocks your muscles to remind them how to function.
      it’s not nearly as serious as ivig but it’s been a huge help for me and to remind my calf muscles how to work.
      bc/bs said it was “experiemental and not necessary”.um okay well “walk” or not walk in my case in my shoes for a day and tell me you wouldn’tdo anything you possibly can to get better.
      i consider myself lucky that they are still covering ivig but scared to think they will literally pull the cord on that one.

    • December 5, 2010 at 5:40 pm

      very scary that insurance companys could or even WOULD do that!!! Think of all the money we and everyone pays them for health insurance!!!– I own and operate a small business and pay out my a– for healthcare for myself and my employees. For MANY years other than my annual physical I never used it–BUT continued to pay for it in the event something ever happened. For them to refuse to pay when that “something” does happen just is not right. Not only is it up to people who have to actively use their insurance make sure these kind of tactics aren’t used–everybody who has insurance SHOULD be concerned– One NEVER knows when it will be you or your child needing something medically necessary and it being denied. Lori

    • Anonymous
      December 5, 2010 at 6:53 pm

      I have for many years worked for insurance companies as an outside attorney. I have represented many insurers, but mainly have represented insureds who get sued because of car accidents, slip and falls, etc. I have learned that insurance companies are NOT in the business of paying claims. They are in the business of denying claims and maximizing PROFITS. With that in mind, we all need to be vigilant in dealing with our health insurers. We cannot be lackadaisical and can take nothing for granted. Do not hesitate to retain an attorney at the first sign of trouble. Believe me, if you get a lawyer involved, you will definitely get attention from your insurer.

    • Anonymous
      December 5, 2010 at 9:43 pm

      [QUOTE=Goodney]I have for many years worked for insurance companies as an outside attorney. I have represented many insurers, but mainly have represented insureds who get sued because of car accidents, slip and falls, etc. I have learned that insurance companies are NOT in the business of paying claims. They are in the business of denying claims and maximizing PROFITS. With that in mind, we all need to be vigilant in dealing with our health insurers. We cannot be lackadaisical and can take nothing for granted. Do not hesitate to retain an attorney at the first sign of trouble. Believe me, if you get a lawyer involved, you will definitely get attention from your insurer.[/QUOTE]

      EXCELLENT advice. I work in insurance on the hospital end (ensuring the hospital gets paid and patients get what they need), evaluating inpatient stays for medical necessity. It is often a daily “fight” to prove that a patient meets criteria for whatever their diagnosis and inpatient stay is for.

      We often have to do RN to RN reports and sometimes hospital utilization review medical director to medical director communication of whatever insurance plan it is (we take many, many different plans).

      Of one note, I would try to avoid being specific with HR about “what medication/treatment you need” or what “diagnosis” you are dealing with, as this is protected health information under HIPAA. Many states are right to work states, in addition to other issues….one would not want this or anything related to your diagnosis to be brought up and potentially come back to bite you in the behind.

      Better safe than sorry, do enlist their help if necessary, just be non-specific.

    • Anonymous
      December 7, 2010 at 1:24 pm

      Went to see my neuro today–seems his office didn’t get a denial letter till last Friday–December 3rd. They’re working on a response but glad I went as needed to know they were aware of my situation.

      I’m working on my own letter to Blue Cross about how IVIG have helped me and because of it can live self-sufficiently.

      I am am so fatigued already that I’m not functioning the way I need to to handle what’s happening. It’s blur and coming at me so fast. Have been told I’ll be waiting longer than I can for good results.

      Big thanks to all for such wonderful input and support. Will keep you informed. Please feel free to post, PM or email me.

    • Anonymous
      December 7, 2010 at 9:49 pm

      Just an update, went for my IVIG yesterday and the doc came in and said
      he talked to insurance co. and really went to bat for me and they O.K.ed
      my treatments for another 6 mths but they would only do them at home.
      I told him I didn’t care where I got them as long as I got them. I guess it
      is cheaper at home? He did say they would only let ;me have 75 grams instead of the 95grams, that’s all they would pay for. Cheapskates! I’ll
      see how I do on that amount. I hope whoever they send to my home they
      like dogs. Does anyone have a port? I might be getting one cause I’m such
      a hard stick-even the IV spec. has a hard time. Good Luck to you, everyone
      Miss Judy

    • Anonymous
      December 8, 2010 at 12:40 pm

      Blue Cross, “How you tried any alternative treatments?? Ones that are more cost efficient? Your neurologist had you prescribed IVIG for only 90 days.Your treatment was suppose to temporary.”
      BUT why have you paid for IVIG for the last FOUR years??

      It’s about the cost of IVIG. It’s not about the correct diagnosis on file but $$.

    • Anonymous
      December 8, 2010 at 7:06 pm

      Got Osteoporosis or Osteopenia? That nixes Steroids flat out! That was my case. Also, PP costs more the IVIG per treatment [I believe, at least, in my part of the world] AND while effective it is a more invasive therapy.
      Docs usually go into ‘cruise’ mode after getting IVIG approved…But, there have always been ‘standards’ by insurance companies that docs MUST submit updated testing and/or documentation showing improvements of some sort… Albiet, improvment can be deemed ‘not getting worse’.
      I wish you luck and keep at it! I realize that it’s exhausting just to even THINK about the fight? But where will you be w/o IVIG? Sounds like your doc is trying [and they’ve got much more experience than you do] to solve this. I truly hope they ‘fix’ it!

    • Anonymous
      December 8, 2010 at 10:03 pm

      Please seek out legal counsel. BC/BS paid for four years, and did so without reservation, and NOW seeks to dictate the amount of IVIG you can receive for your condition? Ridiculous! I can understand that you may not want to confront BC/BS at this point when it has agreed to pay for another six months of (reduced) IVIG treatment. However, you must be prepared for BC/BS to pull the plug completely, almost certainly in six months’ time. Consulting an attorney at this point does not mean that you have to take action, but do at the least explore your legal options, and do so during this period when BC/BS is still willing to pay, and you are not under the gun to come up with a solution immediately. Be prepared.

    • Anonymous
      December 9, 2010 at 11:56 pm

      Exactly, limecat, ^^^^^, no better advice or time.
      Do NOT wait.

    • Anonymous
      December 10, 2010 at 7:36 pm

      I’m applied for an Expedited Appeals yesterday.
      You are all 100% right about being prepared for any other denials and/or mine is not re-instated quickly. In process of getting insurance benefits attorney in my area.

      I think about how IVIG have drastically given me back my life. Being able to do everyday simple things without unbelievable difficulty. To not be in indescribable pain 24/7……

    • December 10, 2010 at 8:30 pm

      Just a thought, but Gamunex was FDA approved in September 2008 for the treatment of CIDP, so it is a label use drug. I have never taken other brands of IVIG so I don’t know if they have FDA usage approval for CIDP. Would this make a difference with BCBS?

    • Anonymous
      December 11, 2010 at 1:39 am

      [QUOTE=GAVol]Just a thought, but Gamunex was FDA approved in September 2008 for the treatment of CIDP, so it is a label use drug. I have never taken other brands of IVIG so I don’t know if they have FDA usage approval for CIDP. Would this make a difference with BCBS?[/QUOTE]

      No, all IVIG is an accepted treatment of CIDP (correctly diagnosed, etc.). Shouldn’t matter what brand and when I had BCBS for ~3 years of my treatment, it was never an issue.

    • Anonymous
      December 11, 2010 at 11:41 pm

      Keep on fighting for what is rightfully yours !!! I am glad that you are on top of this and are holding BCBS feet to the fire and not letting them get away with this.

      I am so afraid that this is what we all will be facing in the future. All of the “freebies” that were required of insurance companies under Healthcare reform will cause these insurance companies to cut costs any way they can, any denying coverage is tops on the list. Especially high cost treatments like iVIG. They will search through records just to see if anything is missing and then deny coverage. The heck with the patient, all about $$$$ and profits.

      My heart is with you 100% and I hope you get it all worked out. As you already know, your neuro is doing all they can paperwork wise, and I am sure you are doing all you can as well. I am so sorry that you have to go through this at all. I wish I could take some of your pain away so it would be easier on you.

      This really makes me mad. It is quite unfair.

    • December 12, 2010 at 9:44 am

      Too bad other’s don’t see it your way (my way too) Dick. The ins companies are going to be forced to tighten their belts on those of us who pay our “cadillac plans” to make up for those that have to join the gov pool at a lower rate and get the same unbiased care. Why can’t people see this? It is plain as day? This world we live in is getting messed up more and more, day by day. Why aren’t we watching what is happening in London, greece, everywhere. Why don’t we see the writing on the wall? It is there, the lesson others have learned and it is playing out daily and we are ignoring it!! We are supposed to learn from history, not repeat the mistakes. Greece is a perfect example, it has fallen twice now. I am so worried, about the fate of everything!!

    • Anonymous
      December 12, 2010 at 9:13 pm

      First off, As I have read past ‘eligibility requirements and continuation of treatments’ as were first posted by insurance companies about 3-5 years ago… [until they found out that we found out about them?] were key words: Continued support documentation as to improvements under such therapies…albiet? Standards were and have never been set… Not yet as I know of….
      THUS it is the prescribing docs’ RESPONSIBILITY to report in a consistent and timely manner [again, standards not set?] as to the status of any infusion recipient. The Factors by which any standards are set, or how improvement or status-quo or even deterioration is determined is NEVER MENTIONED. ANYWHERE! Thus? Some insurance cos can get off the ‘hook’ because THEY have not articulated to the docs WHAT they must do to keep patients treated. To me? [B]=[B][/B][/B] gross neglligence by the insurance cos.
      I for one, will glady submit to new tests to get my IVIG! Honestly I’m not a fan of nerve conduction studies? But I’ve been so ‘dead’ I’ve fallen asleep during some! Spinal Taps? Well, do what you must, when you must..just please! Not too often.
      Dawn? Having been one IN the Government Pool as both an employee and spouse of one? I have to say, that Federal plans are not Cadillac? More like Silver Plated pot metal. What is being proposed shoud be a source for discussion under a separate ‘forum’ by this association so things can and should be discussed freely. As one who has been an ’employee benefits manager’ in the private sector? I can say that the bigger the enrolled ‘pool’? The more likely all are to have clout in coverages and at a cheaper cost than most employers [small businesses] can provide. Buy in bulk, buy cheaper .. quirk in the works? Are regulationed state by state…. As in Arizona- mite change?. Face it! It’s COSTCO for health care! Regulated by the Gov’t!
      I think the current plans reflect learning from history! What all fear is: They don’t know HOW it’s gonna affect them!. It will work, given time. Likely better than what’s been going on to date…in THAT I have FAITH!
      Dawn’s post and my partial response should have been split onto another post. MODS? Are you out there? Please?

    • December 13, 2010 at 8:48 am

      Look Home Again,

      I am not in the frame of mind for a debate or arguement with you or anyone on this site. I DID NOT say the gov plan is cadillac, I said my plan that my husband pays 22 thousand a year for is cadillac and because the silver pot metal plan as you call it will be in existance, I will be forced to loose benefits because the greedy insurance companies will have to compensate for their losses of the pool people.
      Since when can we just not state our fears or feelings without being told what we think is wrong or someone knows better than what we think or feel. What is the reason for the calling of mods as you call them? Are you trying to insight another arguement? Have you not noticed that people don’t even post here anymore? his was a site where people offered their gutwrenching experiences for the good of others, information, statistics, suggestions and facts. Now it has become a place of little more than a post here or there and many posts of new people seeking answers with no one helping. It was brought up that so many have moved to facebook, well there were about 20-3- different people (new) with questions, no one helping? Where are all of the people who have valuable info? Are they tired of being cut up and down if they offer info?

      I am tired of tiptoeing around here wondering who is going to accuse someone of something or make something out of nothing. Stop it, if someone posts info on here that is wrong or misguided, of course they should be corrected, but otherwise, who are we to decide what should be posted by one, what tone it should take or what level of didactics should be allowed. There are lost scared people out there who do need help and are looking for help and don’t need these sophmoric at best tit for tats clouding up their quest to search for info to help them. Enough is enough. I think we should just focus on helping others and leave it at that, allow others to state their opinions without fear of an attack.

    • Anonymous
      December 13, 2010 at 4:26 pm

      Hey guys, I have no dog in the fight here.

      As I have said before, I have worked as an attorney in the insurance industry for more than twenty years. My wife is a county employee and she carries my health insurance. At one time we had no co-pays for doctor office visits or prescriptions, and an annual individual deductible of $100. Now it’s $25 for the first and $30 for the second, and going up. We have individual annual deductibles of $2000 for in-network providers, and a separate annual deductible of $4000 for out-of-network treatment. We have additional individual annual deductibles of $600 for diagnostic testing of any sort. Between co-pays and deductibles, I have spent somewhere in the range of $7500 to $10,000 out of my own pocket this year alone.

      I don’t know exactly what is going to happen with health insurance in the future, but I do know that in general insurance companies WILL NOT lose money. Nor will they even accept significant reductions in profits. I hear rumors that annual individual deductibles may go as high as $10,000. No matter what, I think we can anticipate that we will all be expected to personally pick up more and more of the cost of health care. Those of us with insurance will be paying more and more for less and less.

      If someone is in perfect — or even relatively good — health, they obviously don’t have to be too concerned at the moment. Unfortunately we don’t have that luxury. We have serious health issues, or we wouldn’t be here. I know how scared many of us must be, because I’m just as scared. Not only do we have to face all the challenges to our health, and all the other concerns that come with our health issues, but we must also worry about affording the medical care we so desperately need.

      Our common interests should cause us to stick together and try to help each other as much as possible. I know there will be disagreements, but remember that there is much more that unites us than divides us.

    • Anonymous
      December 13, 2010 at 8:28 pm

      so just by cahnce or not really…i was at my nuero appointment last week and i was telling him about the dizziness and headaches. he said that perhaps making the ivig go slower (6 hours instead of 4) would help.
      so i call my infusion nurses company and she explains that my insurance only pays for 2 hours of infusion.
      so i can’t get my ivig extended to 6 hours and as it is they are “eating” two hours.
      so i am stuck with 4 hour infusions or i can get two 3 hour infusions.
      just thought i would throw that out there.
      i have heard that insurance companies will back down if called and really they are just putting the constraints out there until someone challenges them. is it bad that i don’t want to go through all the phone calls?

      good luck everyone

    • December 13, 2010 at 10:29 pm

      If you can take the two day infussion intrusion, I would do it. My son would get the aseptic reaction every time we did it for 4 days in a row. We now break it up into one day every two weeks. Not sure how much you are getting, but there is a standard formula they use for weight and product to infussion rate. See how close they are to the recommended amount, maybe you could use that for ammunition if the 2 day infussion is a pain in the but. It shouldn’t have to be too many calls for you, typically a note from the doc explaining your reaction, with the proper wording of course, should be enough for the insurance company. They just try to push and squeeze all they can with the hopes of none of us speaking up. It is so wrong… Good luck to you.

    • Anonymous
      December 13, 2010 at 11:24 pm

      Home infusions are considered ‘home nursing’ and for MY insurance and many others 2 hours is IT! IF you go five minutes over? YOU pay that next full hour’s rate and it’s not at the plan’s rate.
      Going to the doc? They are allowing up to six hours to infuse. So? Even tho, in the past, BETWEEN the Doc offices’ infusion costs and the Hospital costs vs home infusion costs—the home infusion costs and a lot of plusses doing at home mostly COST until now? Home was the best option.
      As for insurance companies? You gotta KNOW that they are gonna make it so they make money! That is their goal and mission in life…not necessarily to keep us healthy nor to help those who have the more expensive ‘chronic conditions’. We are blanket Losses on their ledgers and that’s why more and more roadblocks will be put into place to keep us from treatment unless we get constructively active!
      The buggerboos of it all are: CIDP is NOT universally nor consistently diagnosed [lead? Physician Training and BACKGROUNDS and UPDATES] CIDP is not consistently treated nor with consistent results [back to diagnosis, and training and backgrounds]. Just as there is no consistent defination of PAIN? In our case, all of our symptoms are not consistent in either cause, effect or treatment.
      I USED to work in health benefits and what has and IS happening IS APPALLING and well beyond excessive in the probable profit-taking aspects.
      Just look at what the Medical, Drug and Medical Tech fields spend on ‘advocacy’. Then look at the ‘proprietary costs’ they tend to charge for meds needed by many yet at exhorbitant rates. IF PUSHED as a new approach mite instigate? That’d go down fast! And, w/US ingeneuity and not imports from China. [I squelch-noun definition? at the thought of relying on generic antibiotics imported from Asia as our only ‘safe’ alternatives’]
      All health care costs are exceeding inflation by about 75% now? Guess where we mite be w/o a set of brakes in the next five years?
      Honestly get real, and on the band wagon for the Plans? Not perfect, but, they just mite help you get what health help you need w/o going bankrupt.
      The inclusion of the pre-existing plans and the continuation of benefits to age 26 + is something that will be a life raft for many.
      What we fear is change and not understanding IT or how it works. Know that these things are organic and will adapt to each of us IF we are advocates IN the right places.
      God bless one and all. The option is not bankrupted banks? It’ll be hospitals!
      Wishing one and all a peacefull and lower pain holiday season!

    • Anonymous
      December 14, 2010 at 8:47 am

      Just curious if anyone else gets home infusion partially unattended.

      My home infusion nurse shows up and carefully checks me, gets me hooked up and slowly raises level of infusion to max rate, checks me one more time for temp, blood pressure, heart rate etc. then takes off. When I’m done, I unhook myself and send the pump back to Hopkins by Fedex. They even give me a portable pump with a backpack and I motor around the house pretty much unimpeded.

      Except for some flu like symptoms for the rest of the day and night, I tolerate the IVIG very well so I guess they feel its safe. I kind of assumed most of us were done the same way. Certainly keeps the cost down and I’m happy not to have the nurse underfoot all day.

      Is this unusual?


    • Anonymous
      December 14, 2010 at 1:47 pm

      Ron – That is not how most home care companies work. I have heard of people who get their IVIG your way & in my opinon, it’s very dangerous.

      My daughter’s nurse takes her vitals every 15 minutes for the 1st hour then every 30 minutes for the duration of her 2 hours 45 minute infusion.

      A person can respond to IVIG without incident for years & then they can have a bad reaction during the infusion out of the blue. It is my personal opinion that a RN should be on hand at ALL times during an IVIG infusion.

      I’m certainly not trying to scare you but just give you my opinion. Like I said there are others would get it without a nurse on hand…it’s just not something I would ever allow for my daughter.


    • Anonymous
      December 14, 2010 at 2:47 pm

      Limecat, the first 2, possibly 3, sentences that you cited as BC/BS’s reason for denying coverage of IVig is exactly what BC/BS gave as the reason for denying coverage of cellcept. I think it is simply standard language, because in my case, and surely yours, my neuro did give a dx of cidp as part of his input into the initial request for coverage (he copied relevant info from my file) and also cited articles stating that cellcept was a standard therapy for cidp.

      It’s been stated by several of us….contact your state insurance commissioner. I did and BC/BS’s decision was unequivocally reversed. You don’t need a lawyer for that…just persistence! Good luck.


    • Anonymous
      December 14, 2010 at 7:01 pm

      Blue Cross didn’t contact me or neuro’s office within 72 hour protocol for Expedited Appeal.

      Researched NC Insurance Commission–Expedited External Appeal form. Will discuss this route with neurologist tomorrow.
      Keep fingers crossed.

    • Anonymous
      December 15, 2010 at 3:18 pm

      Thanks for the info Kelly. I’ve just been going along with the recommendations of the Johns Hopkins folks assuming this was fairly normal.

      I’ll probably continue as usual though cuz I really do like it that way. Just “living” on the wild side I guess.



    • Anonymous
      December 16, 2010 at 2:03 pm

      When NC Insurance Commission Department contacted BCBS about NCICD’s Expedited Expedited Appeal–BCBS suddenly decided they’d not have me wait 30 days and then put me in for a 72 business hour decision–hhmm. The squeaky wheel turns…

      BCBS had given me various unsubstantiated info and I did document who said what. Shame on one BC phone rep who said they would decide whether my situation was “life or death”–excuse me? What a thing to say.

      The NC Insurance Commission is FREE. They ultimately decide and what ever they decide over rules BCBS. I downloaded the NCICD Expedited External Appeal forms to fill out and had my neuro’s office fax this plus medical/my appeals letter to them.

      I am putting my NC Insurance appeal on hold to use when/if BCBS denies me. This way NCICD had definite reasons I was denied to address.

      I thank Goodney, Jdunk, Yeuhan and others for sage advice.
      To others–please consider your state insurance commission avenue for appeal.

      IVIG Magazine said 94% of denied benefits are NOT appealed.

    • December 16, 2010 at 2:34 pm

      Hi Limekat,
      I read the article in ivig living yesterday, I was thinking of you!! From the article, it sounds like as soo as you challenge them, they approve?! I hope that is what happens in your case. Nothing like purposely stressing out people!! Praying you get the best present ever this Christmas with news of approval!!

    • Anonymous
      December 16, 2010 at 2:37 pm

      [QUOTE=Dick S]All of the “freebies” that were required of insurance companies under Healthcare reform will cause these insurance companies to cut costs any way they can, any denying coverage is tops on the list. Especially high cost treatments like iVIG. They will search through records just to see if anything is missing and then deny coverage. This really makes me mad. It is quite unfair.[/QUOTE]

      I share your sentiments, Dick, and agree that we need to be forceful advocates for our own care, especially when it comes to insurance companies. I would like to point out, however, that one aspect of healthcare reform — the removal of the lifetime benefits “cap” — is all that is standing between me receiving IVIg and me being cut off in a couple of years’ time.

      Just another perspective, stated respectfully.

    • December 16, 2010 at 2:42 pm

      I think about that often!! As Kevin is 13 and has had this since 9. Companies switching insurance coverage did work in our favor. I think there should have been some sort of law for the ins. co being able to pick up where you left off when you return to them. (should the cap be re-instated) For instance, if a new contract is signed, years later, the tally should have been able to start fresh.

    • Anonymous
      December 17, 2010 at 5:30 pm

      Right now involved with BCBS as having Expedited Appeal.

      Guess what… little print in BCBS online member’s benefit info. While having an Expedited Appeal BCBS MUST continue with said treatment. Yes, they still must pay for it. I’m getting IVIG for infusion for this weekend. :p

    • Anonymous
      December 18, 2010 at 5:40 am

      That’s fabulous news! Thank goodness for small print!

    • December 19, 2010 at 11:49 am

      Great news Limekat!! We will be praying that BCBS does the right thing!!

    • Anonymous
      December 19, 2010 at 2:07 pm

      Limekat – I cannot even express into words how proud of you I am. You are standing up & fighting for what is right & for your health.

      You just keep pushing BCBS & I am certain, in the end, you will win this fight!


    • Anonymous
      December 19, 2010 at 8:07 pm

      So, I get a letter from my insurance company’s provider of Gammagard 10% Liq 20 Grams VI (Baxter) saying ‘our records show you you are currently using the generic version of Gammagard… and we are informing you that the U.S. Food & Drug Admin has reclassified it as a branded drug effective Jan 1, 2011. As a result the med will be charged at your plan’s brand-name amount…if you don’t want to pay that … contact your doctor for alternative therapy options’ !!!

      If I can’t afford the new surprise or find a generic equivalent, I have no idea what to expect. I’ve been on IVIG at least 10+ years and can’t imagine ‘life’ without it. Other ‘pills’ just don’t work on me and IVIG works!!! I don’t have all the ‘facts’ yet but this doesn’t sound good at all. Last month they doubled my co-pay and now this.

      Of course, I will fight with all I have (left) and am a good self-advocater. Are we seeing the ‘beginning’ of government-managed health care?

      Any one else been re-branded or know of an generic equivalent?

    • Anonymous
      December 19, 2010 at 8:54 pm

      your past insurer or current one Limecat? But are there any ‘grandfathering’ or ‘coverages for pre-existing conditions’ built into either the old and/or new policies? Example: IF you started chemo for cancer before the new ‘plan’ year? It would either be grandfathered into the new policy or you would continue to be carried by the old plan. I suppose it’d take a lawyer or someone else with clout to get to see the contracts and how they were ‘written’? But worth a shot.
      I am crossing my fingers [as best as they can work?] for you! I know you are nothing but TIRED from all this? But I feel [just me] that it’s a good fight to fight.

      Big Tree? I got that when I had ‘hospital infusions’? Well, folks we all know there are NO generic equivalants to any prescribed brands of IVIG! Contact BOTH your US and Senate representatives…they will give you the key folks to talk to at the FDA… I FOUND THEM SUPER HELPFUL when I’d contacted them! Gave me in writing chapter/verse all the legalese I needed to get things right!
      What It means is: IVIG CAN be substituted, BUT they’ve got to notify prescribing doc w/in 5 days of infusion[avoid liability if reactions?] and the DOC must notify you w/in 10-15 days from their receipt of that notification. IN the hospital? I’d been substituted the IG BRAND 10 times out of 12 infusions, WITH NO Notifications! I called the state health board. Staff got retrained FAST, and my insurance was re-billed for the lower-cost not prescribed stuff. My last infusion THERE? I got aseptic meningitis…don’t want to get that ever again! [Whole thing was downright surreal]
      I hope this helps others, I sure don’t want anyone to ‘experience’ that headache I had! And, we DESERVE what is prescribed for us! Not any bait and/or switch! That is playing with our lives. Get it right and get better!
      Ask questions away – We learn from each other and know better in the end.

    • Anonymous
      December 19, 2010 at 10:25 pm

      We all need to be hyper-vigilant. The insurance companies don’t know exactly what the medical care reforms are going to mean down the road, but they have a sneaking suspicion their profit margins may be reduced. So they are going to start protecting those margins now by looking to deny or limit coverage for “shock” claims, and that means those of us with chronic diseases requiring expensive, long-term therapies.

    • Anonymous
      December 20, 2010 at 12:51 pm

      Big Tree – I’m almost 100% certain there are no generic forms of Gammaguard. You need to contact your dr & your insurance company ASAP.

      Good luck,

    • December 20, 2010 at 7:10 pm

      Is it possible the denial is for gammaguard s/d? The powder form? I know in the past it was supposed to be reserved for specific illness.

    • Anonymous
      December 21, 2010 at 7:24 pm

      I did get approval for 3 months of IVIG. I feel so vulnerable from being denied it on a technicality. So tired. I’ll comment more later.

    • Anonymous
      December 21, 2010 at 7:50 pm

      But, temporary ‘reprieve’ is NOT what you need for peace of mind! Don’t coast along now? Just start getting your battle plan in action and your facts in line and GO GET THEM!
      Remember, It’s not too energy draining to be on hold for hours? Leave the facts and have them e-mail you chapters and verses of what is or is not allowed. Be sure to ASK if there are no generic equivalents? What happens then?
      We can win with persistence, when we do? We set precedence. With that follows POLICY!
      When you work hard for your rights? You are a leader for not only yourself, but for many others! Power comes to and for US, in lots of little steps to the insurance companies, then for lots of US as we chip away at the ‘systems’.
      For the meantime, enjoy the infusions! Keep faith that YOU CAN MOVE MOUNTAINS, as you certainly dented ONE in getting a diagnosis!

    • Anonymous
      December 21, 2010 at 10:51 pm

      Get some rest. I know fighting with insurance companies can be exasperating. The insurance company will count on wearing you down. We all need to be prepared to do exactly what you are doing — fighting for our treatment — and therefore for our health. So many give up at the very moment when victory is withing their grasp. Don’t let that happen to you. We are all with you.

    • Anonymous
      December 22, 2010 at 11:00 am

      Limekat – I’m very happy to hear that you have the next 3 months figured out. I am CERTAIN it will all work out in the end. The insurance company is just going to make you work for it.


    • Anonymous
      December 22, 2010 at 7:41 pm

      Looking at my BCBS approval letter. It spells out my 3 months of IVIG to the date. “The Medical Director reviewed the documentation and I meet the diagnostic criteria for CIDP. IVIG is an appropriate treatment”. Lots of procedure codes here and there. The only thing missing is me getting stamped with the expiration date of service.

      Was told I’d be going through this whole process again–every 3 months. Need the approval to be submitted one month in advance. I have never received anything like this or the original denial letter in 5 1/2 years.

      I had pain in my calves so badly Sunday night I was shaking. It was beyond my break-thru pain meds. I’m walking stiff legged as my calf muscles are frozen. My whole body is zapping. Sleeping has been next to impossible.

      One thing that the BCBS phone reps kept saying was my situation was not life or death–nowhere in the letters/booklet does it say this for their Expedited Appeal. “Pain that can not be adequately managed and ability to regain maximum functionally without the requested care or treatment” –that’s me according to my neurologist. Who are these phone reps to chastise me? My suppository 72 hour appeal has taken 3 weeks.The 30 day appeal would had been months. I may not be able to find an available infusion nurse till after Xmas.

      I would to thank you all for your wonderful support and advice. This has been a very unpleasant experience. I’ll be ready when BCBS comes a calling next time .

    • Anonymous
      December 22, 2010 at 9:41 pm

      That has helped me in the past? Staffs have worked hard and long de-tangling some of my insurance’s messes in terms of claims for IVIG [and, they were VERY messy!] But they got worked out in increments.
      Thing is usually? That that ONE good person you got has since been promoted and well? You have to start over again. Or…you simply get no response to voice mail or any other attempts to seek expert help. You need NOT your average clerk to deal with such squirrelley issues! And don’t take no! HOLD until you get someone or if disconnected…call back and ask for a supervisor BECAUSE you were disconnected!
      It’s time consuming, yes. Stressful? Sort of. Frustrating, definitely. Patience required absolutely! Don’t know about anyone else? But the pile of papers I have to keep ‘near’ me for reference? ALWAYS seem to collapse at the wrong time! Well? On the good side? I don’t have to stand in line for an hour or the like!
      Good luck! Sometimes you get GOOD insurance staffers! When you do? Worship them! I mean it!
      May Santa be super to you in some silly way! HUGS!

      Yep, It feels soo good when I stop beating my head against brick walls! Those endorphins! Good stuff!

    • Anonymous
      December 22, 2010 at 10:24 pm

      It’s the stress causing the increase in your symptoms. Hang in there. You will feel better. Lean on us. We are all here for you. Request that BC/BS appoint a case manager to you, if one hasn’t already been assigned. If one has, request the contact information for that individual and deal with them exclusively. “If you have to go through hell, keep going.” — Winston Churchill.

    • Anonymous
      December 23, 2010 at 11:00 am

      I have had some more minor medical tests denied (under $1000) by BC BS that were deemed medically unnecessary. I just kept calling and telling them to reevaluate. Everyone that I have ever spoken with at BC BS has been really helpful, even conferencing other parties on the line to get an issue resolved. I would agree with the recommendation of a case manager. Some nurse calls me every now and then to see if I need help with something. I would recommend that you keep calling and appealing and hopefully, it will go in your favor. Good luck!

      Goodney, I have read some of your posts about insurance companies not wanting to pay claims. Perhaps this is in regards to personal lines or health benefits, but I have worked in commercial lines for 15 years. It is rare that claims are denied, actually. I can’t speak to health claims of course, but I think that insurance companies get an unfair rep sometimes. I work on the brokerage side and we do everything we can to get claims paid. Just my 2 cents.

    • Anonymous
      December 23, 2010 at 12:29 pm

      It really sounds like you have been busy on top of things. This post has been
      sooo informative for me. Right now I’m still kinda in limbo, sounds like I will
      be getting a port, along with home infusion (1 wk. in Jan.) but as of right now
      everything is still in process of being set up. I’m just so glad you followed
      through and turned to the insurance comm. to get BC/BS off their a…..!!
      Thanks to you all for all the wealth of information and I hope everyone is
      blessed during the Holiday Season!

    • Anonymous
      December 24, 2010 at 12:49 am

      I have worked with and for many people employed by insurance companies over the past 23 years of my legal career, and they have been some of the nicest, fairest, and most compassionate people I have ever met.

      My professional experience has been on the liability side of claims, where denial is pretty much the order of the day. I have seen the effect of property/casualty insurers’ lack of stock market returns over the last ten years or so lead to shabby treatment of those making claims — and of their own employees.

      My most relevant personal experience has been with my health insurance carrier — Blue Cross/Blue Shield. Earlier this year I had to endure months of horrendous neuropathic pain because BC/BS refused to cover the Lyrica that so effectively controlled my pain, until I had tried (and failed) a number of cheaper generic versions of other ineffective medications.

      I don’t begrudge any company the right to make a profit; that’s what they exist for. I just want everyone to understand that insurance companies are in the business of maximizing their profits (like all other large, for-profit corporations), and it does anger me that those profits sometimes are so directly supported by corporate policies that cause so much human suffering.

      I encourage everyone to fight every insurance denial.

    • Anonymous
      December 25, 2010 at 2:03 am

      I know we who are fighting with insurance companies for treatments are not alone and really appreciate the folks who who take the time to encourage. To all of you – Thank You.
      From the first refusal 10+ years ago – to being ‘accepted’ and the day I sat in the infusion chair – I took notes. About 60+ pages so far and still going! I try to get everyone’s name, extension, work title, and ask ‘is there anything else I need to know?’ Don’t always get it but I try.
      One particularly nasty person who was a ‘resolution specialist’ told me “No, and that’s final, I AM the SPECIALIST”. I told him I’d check my notes and call him back but he refused to give me his extension and hung up. I checked my notes and concluded I was right.
      So I again dialed the main number and when the machine asked if I knew the extension I just punched in any old numbers until a phone rang and a person answered. I told her “Oh, I must have been routed to the wrong extension. I’m trying to get a hold of ‘Bob the Resolution Specialist’, do you have his number?” She said, “Sure…let me look it up for you… it’s XXXXX.”
      So I called back, punched in Bob’s extension and when he answered and I told him it was me getting back to him with that information he wanted. He said, “How did YOU get this number?!!!” I told him, “You gave it to me, Bob, remember?” He was so confused he actually helped me, told me I was right and we resolved the problem.
      I’m sure glad I keep those notes. I can get pretty far up the food chain when I can quote names, dates, use their terminology, and when someone tries to pass me off to the ‘black hole’ of their bureaucracy I’ve had pretty good success at getting the right party.
      Its all process oriented, so I learn the process. One person who called me back said she could only speak for three minutes or she’d get in trouble, so I asked if there was a time limit if I called her … “No, there isn’t.” says she and gives me her extension ~ I called her back, expecting a ‘leave your number’ but she answered! and we took care of the problem, no problem.
      I’m still working the current problem and don’t know the outcome yet. Gee, if I wasn’t sick this would all be a lot easier.

    • Anonymous
      December 25, 2010 at 11:06 am

      You are doing it right. It’s such a shame that those who are sickest and in the most pain and under the most stress have to work the hardest.

    • Anonymous
      December 27, 2010 at 6:49 pm

      Keeping a record of everyone you talk with is important. I have a notebook of what I discussed with whom, when and where.

      Big Tree–good for you tracking down “Bob”.

      I gave infusion my nurse all the helpful contact info I had compiled as another of her home cases had their IVIG stopped. We’ll just keep on helping each other to insure continuous access to IVIG.

      When I had my infusion yesterday I actually got woozy as it was the second in four weeks. I slept wonderfully……

    • Anonymous
      December 28, 2010 at 3:20 pm

      I always get woozy for a day or so after my IVIG. I’ve also noticed that my body feels really cold for a day or two after my infusion, and I am really fatigued. I nap a lot for a couple of days. Maybe I just can’t take the Pennsylvania winters anymore.;)

    • Anonymous
      December 28, 2010 at 5:33 pm

      Good job BigTree!! 😀

      It’s a tough job, (and tougher when we’re sick) but we all need to do it!

    • Anonymous
      January 30, 2011 at 12:09 am

      After demanding, in an assertive way, my insurance company send me a written response to my simple questions. I told them I was done calling them and from know on they were to call me. I did receive a call and was told my situation was now going to the “president’s so & so committee and believe me we take this serious”. I told him I was simply not impressed, because the time to ‘get serious’ was a long time ago and the ‘actions of the parties’ was all I had to go on. I asked if the ‘president’ actually attended the meetings he referred to and he said ‘Well …l he reads the report’. Knowing I wouldn’t get it, I asked for his name and address so I could jot him a serious little note. I emphasized, again it must be in writing and clearly address my concerns.
      As a side note: I have done this before, not with my insurance company, but I did look up the name and phone number of the president of a large engineering company, and called his home on Sunday afternoon to inquire about the drawings his company promised me numerous times that were were yet received. He was actually pleasant, said he appreciated my call ~ and the next day I had my drawings. He even called me back to make sure I had what I needed.
      So, the insurance company did in fact send me a letter in answer my three basic questions. Written in typical insurance style (noncommittal) it was about 75% OK. So, yesterday I had my IVIG ‘treat’ with the so-called re-branded no longer generic (Baxter) immunoglobulin (same stuff I always get) and now await the bill and see if what they told me and alluded to in their letter is fact.
      It would not be fair of me not to acknowledge and thank the ‘front line’ clerks and many fancy-titled low-paid folks who really did try to help me. The problem was not ‘them’ but was truly a management issue and the solution belonged to management. Years ago I learned the power of a simple concept called assertiveness. It’s not a well understood process and easy to get off track and into anger ~ but it does really work.
      I’m under no illusion that more problems with my insurance company lie ahead, and I will prevail.

    • Anonymous
      March 2, 2011 at 11:32 pm

      This is my first post here. I was diagnosed in 1975 with CIDP – one of the original group that defined the illness. The highly respected Dr Raymond Adams at Mass General did the work up and presented me at grand rounds to 100 neurologists. So I figure you can’t have a stronger diagnosis.

      UCLA Research managed my case for years and I had very few relapses. In ’95 they tried ivig and I got meningitis. Ugh.

      Last year I had a major relapse and was put on high doses of steroids and also ivig. Obviously the doctors were very concerned about giving it to me again and it had to be administered extremely slowly in a hospital with vitals checked constantly. My blood pressure would start to drop and they’d slow it down – sometimes it would take 10 – 12 hours for a single dose. I did five days in the hospital 11 times. 55 days. Then a day every other week. I stopped for a couple of months and got much worse. In the last 13 months I have been in the hospital for ivig infusions 60 times. I’m also on 2,000 mg of Cellcept.

      God bless Aetna. They paid without every questioning. They called to offer support. I never had to worry.

      Now CIGNA has taken over as the carrier for my husband’s company. They are refusing to pay for the last two hospitalizations, and are saying any future infusions must be pre-approved, not take place in a hospital, and we must demonstrate that the treatment is providing measurable improvement. Are you frigging kidding me?!

      Any advice from you all? I’m fighting for my life here and CIGNA is making it a lot worse.

      – Rosemary

    • Anonymous
      March 3, 2011 at 7:10 am

      We are all seeing this more and more. I have given this advice before, and I hope you will find it helpful. Contact Cigna. Get a copy of the insurance policy, and pursue any appeals that are necessary within the guidelines of the policy. Find out if Cigna has assigned you a case manager, and if not, request that they do so. (That way, you have a consistent contact person who knows your case.) Keep meticulous notes as to all communications with Cigna, including date, time, identity of anyone you have talked to, and substance of the conversation. Confirm everything in writing. Contact your state insurance commissioner for help. If necessary, retain an attorney who specializes in obtaining insurance benefits. Persistence is the key here. Best of luck.

    • Anonymous
      March 3, 2011 at 5:02 pm

      Thanks. We’re working it from all angles minus the legal one at this point. I’ll take your advice on keeping notes. I’ve done that in documenting my illness and it’s been a huge help.

      Very frustrating.

      Thank you again!

    • Anonymous
      March 3, 2011 at 9:23 pm

      Guess who’s sniffing around my door again…..was told today a certain insurance company is grumbling about my IVIG.
      I’m loading up for bear.

    • Anonymous
      March 4, 2011 at 9:51 am

      BCBS is starting to grumble again about my IVIG……..:rolleyes:

IVIG Denied

    • Anonymous
      May 26, 2006 at 3:47 pm

      I have GBS after a flue shot in 2001. I had IVIF last summer and in January. Today, my insurance denied treatment. 😡 It is the same insurance for the last two treatment and is a PPO. I cannot walk and almost bedridden. I have tried accupuncture, neurontin, viox for 2 years, celebrex, elavil, cymbalta and many other drugs. I even went to the Mayo clinic for a second opinion 3 summers ago.

      First, I realize each person is individual. What criteria am I missing besides a + EMG and no leg reflexes.:(

      What should I do. I just would like to be better!
      Thank you.

    • Anonymous
      May 26, 2006 at 4:45 pm

      Hello Donna,
      The first thing to do is to try to get the IVIG’s back because they do help. Given time, I hope other’s who have had insurance denial, will respond. What I would recommend, is to get a really strong letter from your doctor stating and/or demandiing that the IVIG’s are critical to your recovery, then send that to your insurance company. Will your insurance approve PP (plasma pheresis), an alternative to IVIG?

    • Anonymous
      May 26, 2006 at 6:14 pm

      I am sorry to hear that you are still experiencing so much trouble after so long. I agree with the other poster, get a letter from your doc and don’t give up.

      How did they confirm a diagnosis of GBS?


    • Anonymous
      May 26, 2006 at 6:15 pm


      Did you get a spinal tap to see whether you have elevated proteins?? Here are some supporting documents for you so that you can show your insurance company:


      Also if that fails to get them to approve it, [url]www.needymeds.com[/url] has links to programs and information on how to get free or discounted meds including IVIG.