insurance denying B12 in 2017

I have been taking prescription Nascobal (B12) spray for PA for several years. My insurance, AV Med, is now denying this medication and ANY vitamin replacement prescription or non prescription. My physician and myself have appealed and sent lab results, gastric biopsy, etc. confirming the diagnosis of PA and were still denied B12. I am told I cannot absorb B12 via oral or sublingual route and need the nasal spray or injectable form. Any ideas on how to pursue this with my insurance company?

17 Replies

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  • Hi I am assuming you may be in the USA and if so you would need to source your local health authorities best practice guidelines for the treatment of pernicious anemia and hand it to your insurance company. As you will know once diagnosed PA means medication for life which means your body cannot absorb it other than medication your doctor needs to stress this to your insurance company along with the relevant guidance. Hope you get sorted

    Mark

  • Thank you Mark for the recommendation to obtain the best practice guidelines. That was very helpful and I will definitely take this advice as I continue to appeal to my insurance company.

  • Hi hmstgirl If you have a diagnosis of P.A. then the only course of treatment is via B12 injections for life and if you are in the U.S. (as holehead surmises) the B12 of choice is cyanocombamalin. Surely would that not be available on prescription and covered by your medical insurance as P.A. is a life threatening disease?

  • Thank you so much for your reply. You certainly would think B12 would be covered for patients with confirmed PA and in my case it has been covered since my diagnosis in 2010. ObamaCare has change our healthcare dramatically. Premiums and deductibles continue to rise. Unfortunately, now B12 is excluded from my coverage.

  • whilst there are many small scale studies showing that oral B12 can be affective in treating B12 absorption problems and high dose oral B12 has, I believe, been licensed for treatment of B12 absorption problems the emphasis is on the fact that it works for lots of people but does NOT work for everyone.

    Not sure if this article will help or will be used as a counter - the abstract looks unsupportive but the devil is always in the detail and one detail would be the need for monthly monitoring if oral is used ... and whether the expense associated with that is actually greater than the cost of the medication ... which I strongly suspect it would be.

    ncbi.nlm.nih.gov/pmc/articl...

  • This is so helpful. Thanks for taking the time to share this. I will use this for my ongoing appeal.

  • Hi Hmstgirl. Just a thought...the Pernicious Anaemia Society has a support group in St Louis, Missouri (details on the PAS website). If you're a member of the PAS, might be worth contacting that support group - they may have information about the vagaries of health insurance American style and may be able to offer support and advice. They may have come across this issue before and have some ideas about what might work.

    It might also help if you download some information from the PAS website (information for Heath professionals on the website to) and put together an information 'pack' about pernicious anaemia so as to make your insurance company aware how vital - life saving - treatment with B12 deficency is...also include information about subacute degeneration of the spinal cord...and point out that this is the outcome if treatment with B12 injections is withheld from those who have pernicious anaemia.

    Point out to your insurance company that if they refuse to provide this treatment...they are leaving you open to developing this.

    Just wondering if,you have managed to make it clear what the outcome is of withdrawing treatment...and having previously funded it...are they then liable for any potential irreversible neurological damage you suffer (not saying this to frighten or worry you - rather it might be something to prod your stupid annoying insurance non-provider back into action). Perhaps if they have to worry a little about the potential for litigation...as opposed to the very small cost of injections 😄😄

    It seems just ludicrous that they are refusing what is, after all, a life saving treatment...the only treatment.

    Some of our friends across the pond turn to self-injecting when they can't access injections (or enough injections) any other way (though I expect they have to pay) and if this turns out to be your only option, we can help advise about that.

    Good luck, hope the insurance company 'comes good' 👍

  • Thank you for the wonderful and informative reply. Lots of great thoughts and ideas.

    I just finished writing another request for a second appeal to my insurance company and used some of your points. Thanks for taking the time to share this information.

  • No problem hmstgirl. Hope the appeal works. Let us know how you get on 👍

  • How disturbing! If your doctor will document you have PA, the insurance should cover costs -- based on the U.S. dosage guideline, which is for one injection every 2 months. Your doctor could make a case for nasal spray as an alternative and simpler form of treatment than injections. I'm not at all certain it would work, but I encourage you to submit an appeal and follow it as far as you can. The first level rejection is just to make you go away; read the instructions they send for the next level of appeal and make it. Taking action is a way of telling yourself and others that your condition, and you, cannot be just ignored. Although I have not appealed for B12 coverage, I have appealed for other medications. I have to appeal one medication every year, and have had to take different forms also, but persistence has paid off with lower costs. (For PA, I use methylcobalamin which has to be compounded, and compounding is not covered.) Do fight for yourself, and let us all know what happens -- and how you are doing.

  • Just curious, where have you come across a guideline for US dosing that stipulates every two months? I would be great to be able to pin a link to that info for others who need it too.

  • Galaxie, I will look through all my notes to find the exact citation. I remember that the U.S. uses the 1994 British guideline for every 2 months. Give me a week or so to find the exact source.

  • I'm not so sure that is the case. I've most often heard once a month cyano injections being offered for PA in the US. I think, if anything, that the manufacturer labeling is what is getting followed by most practitioners. I'm pulling this right off of the American Regent prescribing info: "Information for Patients: Patients with pernicious anemia should be informed that they will require monthly injections of vitamin B12 for the remainder of their

    lives. Failure to do so will result in return of the anemia and in development of incapacitating and irreversible damage to the nerves of the spinal cord. Also, patients should be warned about the danger of taking folic acid in place of vitamin B12, because the former may prevent anemia but allow progression of subacute combined degeneration."

    Link: americanregent.com/Products...

    I don't know that the US actually has any set of official guidelines that doctors are required to follow regarding B12 dosage. That wouldn't be such a bad thing if more doctors were aware of the seriousness of the deficiency, or how important it is to monitor and treat ongoing symptoms. It's the combination of lack of knowledge about the deficiency as well as the lack of good guidance on how to treat it when it is found that is doing us so much damage.

  • There is a National Guidelines Clearinghouse (NGC) under the AHRQ, the A??? for Healthcare Research and Quality of the Dept. of Health and Human Services. NGC: 010402. Revised 2014. Shows Developer as British Society for Haematological Guidelines + Schedule of the British National Forum (BNF). (Sorry my notes were sloppy for the full AHRQ.)

    Also, there is the USP, U.S. Pharmacy? (again, incomplete notes, but website is usp.org). They are a scientific nonprofit that sets standards, enforceable by the FDA. The USP-NF is the National Formulary. The US FDA Act designates the USP-NF as the official compendia for drugs marketed in the U.S. It is a public/private collaborative process.

    Regarding frequency, my notes are confusing. I believe the AHRQ is 2 x month, but CMS.gov for Medicare patients is 1 x month. Of course, it's all for cyanocobalamin.

    I did this research several months ago, intending to make a Medicare appeal. The Medicare Benefits Policy Manual at cms.gov, Pub. 100-02, Chap 15, 50 - Drugs and Biologicals, #3 shows the 1 x month and says not to exceed frequency "unless there are spec. medical circumstances that justify additional injections". I believe a case can be made for more frequent injections, but compiling research for a coherent appeal seemed formidable. I have a doctor's appointment this month and will raise the question of an appeal, but I believe the research for any appeal will have to rely on the patient.

    hmstgirl's post about her insurer shows how fragmented our U.S. situation is.

  • Thanks for the advice. Unfortunately my physician has sent all the supporting documents to confirm the diagnosis of pernicious anemia but the insurance denied the med. After that, I wrote a letter of appeal and it was denied. I just typed up my second letter of appeal and will send it certified tomorrow. Upon receipt of the 2nd appeal the insurance company will set up a video conference with their "experts" and myself and my representatives. I don't know who best to use to defend my case other than my physician. I don't know if I should go to a Hematologist to have an additional physician support the necessity for the B12.

    Thanks again. Keep your thoughts/suggestions coming.

  • You really know what you are doing and are experienced. I wish you well. I just posted to galixie about the National Guideline Clearinghouse of the AHRQ at Dept of Health and Human Services, also the usp.org. You probably already know those, but just in case.

  • I just checked the NGC, which has dramatically changed its website and is difficult now to search. Sorry.

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