U.S. patients and B12 insurance coverage

[anna4969]

Hi everyone and Happy New Year!

I am directing this question to those that live in the US and have a confirmed PA diagnosis. I have a definitive diagnosis of PA with IFAB, MMA and Homocystiene blood tests all confirming it. Does your insurance cover your B12 injections if you are self injecting at home?

I was just trained to do my own injections yesterday and when the cyanocobalamin prescription was sent to the pharmacy, they ran it though my insurance and insurance won't pay for it. However, if I have the injections done at the doctor's office, they will pay for the nurse to administer and for the cyanocobalamin vial. I am simply baffled because the office injection cost $135 and if I self administer, it costs about $5.00 per injection(B12 & syringe). I am wondering what other US patients are experiencing regarding insurance coverage when self injecting at home. Would anyone mind sharing their experience? (Since my diagnosis in July, I have gotten injections at the doctor's office because all of my out of pocket was met for the year, but now that it all starts anew on Jan. 1st, I need to be cost conscious).

Thank you so much everyone

[BigCatFreak]

Hi anna4969 I am in the U.S. with confirmed PA & have been SI at home for the last 20 yrs and my insurance has always covered it without a problem. Maybe it's an issue with a particular insurance company? I would call the insurance co & see if they can tell you why. I bet they don't make diabetics see a doc every time they need a shot.

[FlyGranny]

I have Kaiser-Permanente insurance. I self inject at home. No issues with them prescribing the cyancobalamine. I have to buy my own syringes though. Syringes are less than a dollar each.

[Hidden]

Hi anna4969. A Happy, Healthier New Year to you also.

I have had no trouble about insurance covering my cyanocobalamin supply for self-injection. The insurance would also cover my syringes if I were to have them prescribed with particularity. I just choose from among what is available at the drugstores, but I do not get the ones with Luer locks.

There have been periodic cyanocobalamin shortages, necessitating my scrambling to find any pharmacies in my area having any at all, and having my prescription transferred so I can keep supplied.

With my next prescription, I am going to try the Express Scripts mail-order pharmacy service. I understand that they will supply three months at a time for a single prescription co-payment charge.

[anna4969]

Thank you all so very much for sharing your experiences. After reading all of your helpful posts and speaking with several pharmacists today about what they typically see with insurance covering cyanocobolamin, I believe I may have my doctor's office start all the prior authorization paperwork and necessary record collection be sent to the insurance company. Part of my issue is that I feel that I also need to set a precedent with the insurance company because we all know this is life long injections. If they assume I will pick up the cost this time around, maybe they might be more hesitant to even approve a prior authorization because they think I can handle the cost.

The other thing, have any of your physicians or insurance companies ridiculously suggested sublinguals as a substitute? I worry about that as well.

Thank you, thank you everyone!!!

[Hidden in reply to anna4969]

No, that has never been suggested to me. You might want to get those, though, in the event of a supply shortage.

Also, be aware that Luer lock syringes waste a bit that you might otherwise draw from your product vials.

[anna4969 in reply to Hidden]

Kewpie Thank you. I picked up the syringes yesterday and the are not Luer lock so I should be good there. That is interesting though, because when they trained me a couple of days ago, it was the Luer lock syringe they had me use at the drs. office and I did clearly notice that I didn't get all the "precious, good as gold" b12 in that syringe. I will stay away from those. Thanks, I am so grateful for your advice. Gosh I am so happy for this site as I learn something new everyday about this diagnosis.

[Hidden in reply to anna4969]

You are very welcome. That stuff is far better than gold -- for us, it is The Elixir Of Life.

[anna4969 in reply to Hidden]

Kewpie, I did get the Source Naturals 5000mcg methylocobalamin sublinguals. I also have the Solgars 5000mcg sublinguals. I prefer the Source Naturals over the Solgars.

[Hidden in reply to anna4969]

I have 5000 mcg methyl too, from Vitamin World. I live in a little country town, and that is the only store in my area that carries any in the methyl form.

[anna4969 in reply to Hidden]

I will have to visit them and price out. I got both from Amazon, upon reading here that many just go through Amazon, and I really fell I got a very fair price. I do have Amazon prime so free shipping. Maybe take a peek at Amazon?

[Hidden in reply to anna4969]

I have never used Amazon. And now Amazon is on that big boycott list for selling goods associated with a certain family in the news a lot.

Understand, I make no judgment on your shopping from Amazon. I want you to have what you need and be as well as you can be.

[fbirder in reply to Hidden]

The amount you lose in the luer fitting is small. I've just measured it in one of my 2 mL syringes and it's about 30 uL, or 3% of a 1 mL injection. Not really worth worrying about.

[Hidden in reply to fbirder]

Well, the desperate times of nationwide shortages have kept me feeling still insecure. I use every bit that I can draw from my vials.

[jade_s in reply to Hidden]

Leaving a small air bubble at the top of the syringe helps push out the last bit of B12.

[anna4969 in reply to jade_s]

Thank you for that tip Jade

[anna4969 in reply to fbirder]

Thanks fbirder for going to that effort. Very nice of you. In reality, I suppose that is such a minimal amount. It is that I basically count down the hours to my next injection and want every little bit I can get. But, I know, really nothing to get my feathers ruffled about, plenty of other things I can save that for!

[_tracy_]

Before I got my doctor to prescribe more frequent injections (Kaiser Permanente insurance), I bought cyano from Canada. When I bought 10 ml vials in quantity and syringes at a local pharmacy, it worked out to about $2.50 per shot so about half what it cost you.

p.s. There is a PA Facebook group you can join that has a list of where to source B12 (and lots of other useful information) should you decide to buy your own.

[anna4969 in reply to _tracy_]

Tracy, thank you. I have been seeing that there is a facebook group. I just don't do facebook, but maybe this will prompt me to do it.

[tvellepern in reply to _tracy_]

Hello, I looked up PA groups on Facebook and found many. Please give me the exact name of the group so that I may join. I am also in the US. Thanks

[anna4969 in reply to tvellepern]

Hi there, I do not belong to a PA group on Facebook just this one. If you find one out please share.

[_tracy_ in reply to tvellepern]

Pernicious Anaemia/B12 Deficiency - Support Group

In the 3+ years since I posted above, I learned the real underlying cause: Lyme disease. Been treating the past 2-1/2 years and continuing to improve. And wouldn't you know it, the Lyme caused my B12 deficiency and gave a positive result on the IF antibodies test. I haven't needed to inject for the last 2 years and my B12 level is just fine.

[anna4969 in reply to _tracy_]

That's wonderful

[_tracy_ in reply to anna4969]

Lyme disease is NOT wonderful. I was in misery for years because of it. I haven't been able to work for the past 5 years. Even after the treatment I've had so far, my feet are swollen and still hurt when I walk, I have other lingering symptoms (trouble staying asleep, dizziness, fatigue, ringing ears, ...). Lyme disease is incurable. It can take years to put it into remission. Because of the politics involved, insurance often doesn't cover the cost of seeing a Lyme literate doctor or the antibiotics prescribed (mine doesn't -- I have to pay everything out of pocket). I'd much rather have to self inject B12 because of PA than to deal with Lyme disease the rest of my life.

[tvellepern in reply to _tracy_]

How did your doctor diagnose Lyme disease? I think that may have triggered all my problems. Was it through certain blood tests?? Thanks

[_tracy_ in reply to tvellepern]

I had to find a Lyme literate doctor. I used the ILADS web site to get some names near where I live (a much better way is to join some Facebook Lyme groups and ask for recommendations for your area). She ordered IGeneX tests for borrelia (Lyme) as well as others for some co-infections like babesia, bartonella. erlichia, and mycoplasma. From my symptoms she felt pretty sure I had Lyme, which was confirmed when my test results came in several weeks later.

I had asked my GP for a Western Blot but my request was refused because my HMO follows the outdated CDC protocol. I'd had a couple of ELISA tests a few years before that (in 2014 and 2015) but both were negative. The CDC says negative ELISA = no Lyme so no need to run a more sensitive Western Blot test. They don't know that it is quite common for chronic Lyme cases to test negative with the ELISA. Lyme is immunosuppressive, which results in fewer/none Lyme antibodies, and the ELISA measures antibodies.

You will have to find a Lyme literate doctor to order the more sensitive IGeneX tests (some LLMDs use other labs). Unfortunately most of them don't take insurance. Don't bother with an infectious diseases doctor, they are in denial that chronic Lyme exists and it is so widespread, most of us with Lyme have had terrible experiences with them.

[Colorado76 in reply to _tracy_]

Hi, just saw your post about getting B12 injections in Canada. I'm in NY and only about an hour and a half from Niagara falls. So you can go into any pharmacy and buy the vials and needles? Do they only sell one form of B12? Thanks for any info!

[anna4969 in reply to Colorado76]

She went to Thunder Bay and bought it at Shoppers Drug Mart. She did get me 5 vials but they got a little snippy about the 5. She got them though, no prescription needed. In regards to the needles, I ordered those online from Allegro Medical much cheaper that way. 100 syringes with needles for under 30 dollars.

[Colorado76 in reply to anna4969]

Thanks so much for the info!

[Gg4997]

Hey there! I am in the US as well and when diagnosed initially went to a clinic to have my injections done. Those were costing me around $160 so I talked to my neurologist about doing my own injections. She told me that it depends on your insurance whether they'll cover at home injections or not. Thankfully mine did aside from about $7 (this is for a prescription of 2 vials and 2 needles). My neurologist also has PA however and her insurance does not cover self injections. She said she researched everywhere and found Costco to be the cheapest. You do not need to be a member to use the pharmacy. It's around $100 for a year supply, which is about what I pay with partial insurance coverage. Hope this helps!

[anna4969 in reply to Gg4997]

Hi Gg4997

Thanks so much for that information. I actually read your email on Sunday and tried to call Costco but the pharmacy is closed on Sundays. I am calling tomorrow. This is so appropriate timing because I am ready to fill my next 3 months and was shopping around for prices, so you have given me a good lead. Thanks very much. My sister did acquire some cyano from Canada, so I have started to dip into that supply but feel it necessary to have the insurance company see that I am filling my physician's prescription. Principals. One of my other docs said the very same thing, that if you want to self inject, they are hearing insurances won't cover. Nonsensical, period!!! They would rather dole out that kind of money at the doc's office? Anyway...thanks for the tip. Someone referenced Buy-otc.com as a source and so I am still considering them as well. My first set of needles, I got from Walgreens but have since purchased them online at Allegro Medical, a box of 100 for about $20 + $6 shipping charge. This cost is quite reasonable. Anyway, thank you so much for responding. Take care.

[hmstgirl]

Up until 2017 my insurance, AVMed, has covered either injectable B12 or Nascobal prescription B12 nasal spray which has been quite effective. This year (2017) I am told, even after an appeal by my physician and my self with supporting documentation confirming my PA diagnosis, that they will not cover any form of B12 vitamin replacement. I am still trying to figure out what to do. If you have any suggestions I would be most appreciative.

[tvellepern]

I may be wrong but I believe once you reach the maximum for out of pocket expenses that the insurance pays all. You can call them to check if this is correct. I hope that's the case for you.