Health Update

Sigh. Insurance…. IVIG…. Sigh: IVIG Being Cut Off

You may be wondering where the IVIG #4 update is. Well, there won’t be one. I know; I’m shocked too. Please read my remarks with sarcasm, not bitterness.

The reason is one of the following two:

  1. My IVIG infusions were never approved by my insurance in the first place. The pharmacy misunderstood a lack of denial from my insurance was not necessarily an approval, and shipped me the IVIG under the (mistaken) impression it was covered. They sent me a form to sign showing how much my insurance would cover and how much would be my responsibility, so they definitely thought it was covered. They submit a pre-approval before every single shipment. When they ran the pre-approval for the most recent shipment, they had to do things a little differently (that’s a long story of things getting messed up in multiple ways – story for another time maybe) and it came to their attention my insurance would not cover my next infusion.
  2. The insurance covered the first 3 infusions, then come the 4th infusion, when the pharmacy sought pre-approval for a years worth of infusions (rather than just a month’s worth as they had previously), they thought, “WOW! So this is going to be long term….” then re-evaluated my case and reversed their decision to cover it for an off label use.

It is being sorted out. A mistake was made somewhere and, as you can imagine, neither party is eager to take the blame. I spent about 5 hours on the phone with people. Initially, I thought the first scenario was more likely. However, based on the most recent information I’ve been given, it appears the insurance (despite what they said when I called) is paying for the first three treatments. They would not do that if they had never approved it. Either way, I’m not responsible for the cost of the first 3 IVIG infusions that may or may not have been covered, so that isn’t a concern. In the end, what it comes down to is if my insurance ever did cover IVIG, it no longer will. Apparently, not only should you not believe you’ve gotten IVIG approval if it is too good to be true; you should not believe you got IVIG approval if it is too good to be true, even if: you receive treatment for 2 months, you receive statements from the pharmacy breaking down your insurance company’s coverage of treatment, and you have in your possession a selfie photo shoot with your bottles of IVIG.

I double checked. It is not an illusion. I am holding a bottle of IVIG in this picture. It happened.

My insurance company sent a letter explaining their denial. I was expecting the denial to be based on the fact it is an off label use of IVIG (Sjogren’s Syndrome and unidentified autoimmune disease causing neurological issues) and considered experimental. That’s what insurance companies do. What I was not expecting for them to say was that my two doctors who have viewed my biopsies, seen my blood work (mildly elevated anti-dsDNA), examined me, monitored my symptoms, and reviewed my history have misdiagnosed me with Sjogren’s Syndrome. Their doctor, who looked at my doctors’ notes, decided I’ve been misdiagnosed.

You know what’s wrong with me oh mighty insurance company!? Hallelujah! Tell me so I can finally have my life back!

Nope. They don’t know what is wrong with me or why my biopsy shows lymphocytes infiltrating my lacrimal glands exactly how they do in Sjogren’s Syndrome, they just think this is a wrong diagnosis. Therefore, even if they were going to consider covering IVIG for Sjogren’s Syndrome, I wouldn’t be eligible because I don’t have it.

What annoys me is not the fact they question my diagnosis. Okay, I’m lying. That annoys me quite a bit — but I get it. It is the insurance doctor’s job to identify ways to save the company money and one way to do that is spotting misdiagnoses. What annoys me is they don’t seem to stop to think “Hmmm.. what do her doctors know that we do not?”

Now here’s the deal. I am confident I (and my doctors who have been offered phone consults with the insurance doctor) could explain to them why I do fit the criteria for Sjogren’s Syndrome. I shouldn’t have to get them the information, but I would and I could. Heck, I’d probably write them a short paper. I have a binder divided by subtopic devoted to research relevant to my case. I have objective labs, biopsies, and so on to prove I fit. I have always been open to the idea Sjogren’s is not my only, or even main, autoimmune issue. There are more things about autoimmunity we don’t know than things we do. I’m also not saying it is impossible it is some mystery, non-autoimmune condition not currently discovered/named that causes lymphocytes to infiltrate my body parts. All I’m saying is I do fit objective criteria for diagnosis of Sjogren’s Syndrome.

Their main beef with my diagnosis is I had a lacrimal gland biopsy rather than a salivary gland biopsy. I hope to write a post, with research links, about the use of lacrimal gland biopsies in diagnosing Sjogren’s, but for now, just trust me that the insurance doctor is wrong about it not being usable for diagnosis. (By the way: If I “want” to go get a salivary gland biopsy, they’ll cover it. Yay for unnecessary, invasive procedures!) Anyways… let’s say we get them the research showing the science behind why a lacrimal gland biopsy can be subbed in for a salivary gland biopsy. They’ll likely take their time reviewing the information (they get up to 30 days) before they relent and say, “Okay, you’re right. Jackie does indeed have Sjogren’s Syndrome.” We will have won one battle, but not the war.

What is the second battle? Well, just because I have Sjogren’s Syndrome doesn’t mean I get IVIG. I need to prove it is a medical necessity. Which, again, with this insurance company’s policies, I believe I can do if I am diligent. I have loads of research supporting the notion this treatment could help me. I have my own body which, after early 7 years of having a fever most days of the week, only had 2 fevers in 8 weeks. So, I could present them with all of this and my doctors could submit their insights. However, again, they get up to 30 days to make a decision.

When you consider the fact I am only on this insurance until May 23, it just does not make sense to put myself through fighting them for approval, then restarting IVIG only to stop it again after 4 infusions when I switch insurance companies. The original plan was to try IVIG for 6 months in order to determine if it would benefit my neurological issues or not. Fortunately for me, the end of the 6 months fell right when my insurance changed. If it didn’t help, I wouldn’t have to bother fighting for IVIG with a new insurance company. If it did help, on top of my doctors’ recommendation and research, I’d have evidence it was an effective treatment. Having already had something proven objectively effective can help sway insurance companies when it comes to a treatment they may otherwise not approve. Plus, I’d know I was fighting for something I for sure need.

I only got two months in before this interruption and it hasn’t been easy. My family members picked up more slack than I can convey in order to help me through. However, having this opportunity to find out if IVIG could give me back my life or not made the quality of life I’ve experienced the past 2 months, due to side effects on top of my existing conditions, worth it. In the name of figuring out if this treatment could help me, I was okay with missing out on aspects of my wedding planning and also missing out on more day to day life than usual. The suffering was for a bigger reason. Now, the main gain from enduring IVIG treatment is I showed myself how tough I am. I guess that’s something, but pretty much all I have endured was for nothing

In my mind, the best case scenario in terms of getting IVIG back is I jump through all of my current insurance company’s hoops and am back on it in about a month. The accumulation of improvements is like a snowball rolling down a hill which is why it takes time to see if it helps. Due to a loss of accumulated effects as a result of the interruption of treatment, it will take beyond the original projected date (probably an additional 5 months from when I restart, if I restart soon) to know if IVIG is beneficial to me or not. Come May 23, if it hasn’t begun helping, I won’t be certain of the reason (treatment interruption versus just not beneficial to me) like I would have been had I got to continue treatment as planned. I won’t know for sure if it is worth fighting for with a new insurance company or not. If you know me, you know I will decide to fight for it anyway, but it would have been nice to be fighting with the knowledge this treatment for sure helps me. While pleading my case, my treatment will be interrupted, yet again moving back the date at which we can know for certain if this treatment is helpful or not. The new insurance company will not look at my case until I am officially covered under them. I am doubting they will immediately approve it for an off label use, so we’d be looking at about a 4 week interruption, but likely longer.

Let’s say I was successful in convincing my current insurance company I need to continue IVIG and I restarted treatment in a month or so. There is the fact I’m getting married May 2. I figure as long as I am married at the end of my wedding day, it was a success, but it sure wouldn’t hurt to have helped plan it and felt good on it. I will have to use a full days energy many days in order to coordinate doctors offices and talk with the insurance company to explain the Sjogren’s and get IVIG approved. Then there is the fact the little bit of tolerance I have built will be diminished when I restart. This likely means side effects. I would only be two infusions in on my wedding day which isn’t long to adjust. So, in getting it approved and restarting treatment, I’ll miss out on more wedding stuff than I already have due to IVIG, and more than I already will due to my chronic illness. This is not to mention how well I will be feeling on the actual wedding day. Then, after all that, the IVIG could be taken away yet again before I find out if it is effective.

Like I said, I was willing to deal with all of the side effects as my body adjusted. I was willing to take a risk on how I’d feel on my wedding day and honeymoon. It was worth it because no amount of physical discomfort is worse than the idea of living the rest of my life in this state of health. I realized this was possibly my only opportunity to try IVIG since it is tough to get approved for my conditions. However, given the current situation, the suffering I endure could very likely be for nothing. Knowing a treatment doesn’t help my condition isn’t nothing. However, irregardless of what I choose to do with the current insurance company, I am not guaranteed to have even that much come May 23.

So, my decision is to let the insurance company win. I gave myself permission to take a break for the week from spending hours on the phone, solving the puzzle of how I ever got IVIG in the first place. Knowing why won’t make an IV line full of IVIG magically appear in my arm. It is not worth letting is suck up one more single day of this week. I will seek out IVIG with the new insurance company in May. Meanwhile, I will work on getting into planning this wedding and posting more on here, especially about Sjogren’s (no guarantees). I am not happy my IVIG was taken away (HA – probably don’t need to tell you that if you’ve read this far), but thanks to not having an infusion Monday, I got to go watch Jake try on his tuxedo and then we picked out wedding bands. That definitely is a silver lining to this situation.

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I’ve known about the IVIG/insurance situation for a week now. At first, all at the same time I was: upset, invigorated to fight, disheartened, neglected, enraged, sad, incredulous, devastated, combative, disappointed, exhausted, miserable in my misery, hostile, worried, determined, and beat down. Let me tell you, it was hard to cope when I couldn’t even identify which emotion I was feeling and needed to cope with! Now when think about it, I know I’ve made the best decision for the situation I have been given and can usually redirect my thoughts. If I can’t, I know how I feel: incredulous, disappointed, furious, and determined. Those emotions go together nicely and are therefore easier to deal with than the initial jumble I described. Continuing to have symptoms and side effects brought about by IVIG certainly is not helpful toward coping. They are an unpleasant reminder.

Well, I could probably ramble on forever about this. I should probably stop.

Here is my bottom line.

If the mistake of my getting 2 months of IVIG is indeed the result of the insurance company reversing their decision, and not a mistake on the pharmacy’s part, I begrudge them for granting me it at all if they weren’t prepared to see out my treatment in full, however long that may have been. I also will begrudge them for saying they’d cover it for my condition, and doing so for 2 months, then upon realizing my treatment would go on for many months, or even years, claiming I don’t have the condition and therefore they cannot approve treatment. That’s no way to handle a person’s psyche. 

Whether or not the mistake was the insurance’s fault, they are still in the doghouse with me as a result of their basis for the recent denial. I understand my insurance company is a business and their goal is to make money. However, beyond a certain point, they should not be deciding whether or not I have a condition; they should be deciding whether the treatment my doctors have submitted is a covered medical necessity for my conditions. If we were submitting to treat me with chemotherapy for cancer, and I’d never had any objective tests looking for/showing cancer, I’d understand them denying based on an unfounded diagnosis and the basis of protecting the patient, but that isn’t what is going on here.

22 thoughts on “Sigh. Insurance…. IVIG…. Sigh: IVIG Being Cut Off

  1. No way! I am so sorry that this has happened, Jackie! What an enormous bummer! Sending big hugs. Hoping your new insurance deals with this in a more favorable way. Glad you were able to go choose wedding rings. They are very nice.

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    1. Thank you! If the new insurance pulls similar tactics (I will be surprised if they don’t!), unlike my current situation, it’ll be worth my while to argue medical necessity. I am patient, organized, and persistent, so I think I have somewhat of a shot at winning!

      Liked by 3 people

    2. I hear your pain. I was just diagnosed with specific Autoimmune deficiency, no IGg. I too got 2 months on Medicare and then denied as Medicare under the facilitator Noridian, does not recognize my diagnosis from an immunologist or the vaccine challenge required for the diagnosis. Who knew after working all my life that I’d turn 65 and be denied treatment that I need every month for the rest of my life. Selling the house may be may only option to pay for treatment. Waiting nervously for Noridian/Medicare to reverse my denial.

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      1. That is horrible you have an on label diagnosis with a proper workup to back it up and are being denied. Is the financial assistance most immune globulin manufacturers offer to patients using IVIG/SCIG on label available to those insured by Medicare?

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  2. I’m so sorry this happened to you! Ugh! Insurance companies.

    Sometimes the drug companies will give a huge discount to people who require medications that they can’t afford. Write a compelling letter to the drug manufacturer asking them for help with the cost. Often they will provide for free or step in and assist with your insurance fight.

    Just a thought. I hope you get it sorted out! I say you put up a fight with the current insurance company to cover it. You have nothing to lose. If it’s not good timing with the wedding you can always not get the infusion.

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    1. Thanks!

      If needed, my game plan is to take that approach if the insurance company I will be covered under starting at the end of May won’t cover it. The drug costs roughly $10,000 a month, so the drug manufacturers tend to help people they see as truly needing it (have a condition where research is clear it will help a majority of people with their condition) but are either uninsured or don’t have good coverage. With people such as myself who may have their life changed from it, but also may not derive any benefit from it, they’re understandably more hesitant… It definitely is still worth a try if it comes to that though.

      As for my current situation, I see your thought process, but unfortunately it wouldn’t work out for me. To my knowledge from other patients, drug cost assistance usually isn’t approved in less than 3 weeks, and anything longer than that will not be good timing. Also, before they’d consider me, they’d probably want me to go ahead and have my doctors prove to the insurance I do indeed meet criteria Sjögren’s and see if that gets me covered which would burn up some time. So, I’ve decided not to use my energy on pursuing manufacturer assistance while under my current insurance plan.

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  3. I am so utterly outraged at the ignorance of them feeling they can play with your life in their hands when they know so little of the full situation. I am sorry you are having to endure this on top of everything else. My heart aches for you. I am always here with open ears if you need to vent.

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  4. Insurance companies are literally a law unto themselves. I hate how their decision/misinformed decisions rain havoc on innocent patients lives and they don’t think twice about the consequences. It’s an utter joke. I hope you get it sorted without too much negative impact on your health (I realise that is highly unlikely but always live in hope).

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  5. Hi I’ve been following your story after seeing you on DINET. I too get ivig as a result of autonomic neuropathy caused by autoimmune diseases and also having had low igg and igm on my total quantitative immunoglobulin. My lip biopsy for sjogrens showed infliltrates but not high enough to prove sjogrens, so I am UCTD at this point with positive skin biopsy for sfn and a biopsy showing early lupus.

    I am on privigen too, along with plaquinel, glumetza, and naturethroid. The ivig companies have a program to cover you should you be denied your ivig. They will also help you fight the denial. I’d contact the company directly. There are also links to supports at primaryimmune.org and the jeffery modell foundation. Here is the thing about fighting this insurance company now. If you win the fight then your next insurance company with not be able to deny you. My husbands insurance changed and my new insurance made an attempt and then backed off and I am now 3 years out. I have improved, but not cured. Never will be I imagine. But it has stopped the decline for now. My best to you, M

    Liked by 1 person

    1. Thanks for reading and sharing your experience! It is great to hear the perspective of someone who has been there.I’ve thought of the angle you brought up.

      If I get it approved with this insurance, I wouldn’t be able/willing to restart it at this point without getting pretty sick, which I’m not going to do to myself with my wedding coming up. Therefore, with the new insurance, I wouldn’t have a continuity of care/previously established as effective with previous insurance coverage as a basis because I wouldn’t have taken it for a few months by that point. All I’d have is precious approval which I didn’t act on. Usually if it’s continuing a treatment that has been helping but was discontinued due to new coverage, they’ll bite the bullet and pay, but I wouldn’t fall in that category.

      So with that in mind, I don’t see it as being worth it to put myself through all I’d have to go through (2 doctor consults each 2 hours away, hours on the phone, hours of organizing good info) and not being able to enjoy these 6-7 weeks leading up to the wedding! I rarely put anything for myself (especially my own comfort) ahead of getting my life back, but this is a time I’m doing it.

      I hope IVIG continues to benefit you and that in the summer, I’ll rejoin the IVIG club. 😊 I will definitely be coming back to this comment after the wedding to access the links to supports you provided — thank you!

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  6. Damn! Sorry. That’s the nicest word I can find. And I have quite a few choice ones in mind… You are a tough woman. Sending all sorts of positive vibes for a beautiful wedding and a “happily ever after…”

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    1. When something makes the most professional of doctors whisper a curse under their breath…. well… I don’t feel so bad about all the less than polite language that has come out of my mouth in recent times — damn definitely being among the nicest of words I can find.

      Thanks for being angry on my behalf. It makes me feel better when people think this is as reprehensible as I do!!

      Thank you — Our wedding is going to be so happy and I’m pretty sure the same is true of the happily ever after!! Our relationship has already survived and thrived through many trials. We definitely have the “in sickness and in health” part down!!

      Liked by 1 person

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