subcutaneous SCIG to replace IVIG ?

[michaelmac]

good morning

I have been taking IVIG, but had a problem with blistering and mouth sores.

So, it was recommended that I try subcutaneous IG.

my question is about insurance coverage IN the United States

I am on Medicare [ an HMO] and have of secondary and drug coverage insurance.

so like everything in this world, it comes down to cost.

My insurance company is telling me that I need to initially pay $2000 , this is supposed to be a one time charge. And then I would be charged $90 an hour for any nursing care I needed and $50 per time for the supplies I would need.

so I’m wondering if anyone has any experience treatment. And, what they wound up paying and if they were satisfied with everything?

As always, thanks for any help

[Classicaljazz]

See if your insurance will fully pay for at least four or more subcutaneous infusions ordered to be given at a hospital or infusion center to see if the subcutaneous route has fewer side effects for you. Also, it is nice to learn from the infusion center nurses who have everything needed at their fingertips. It takes at least four or more infusions to get accustomed to how to self-infuse and it also takes about four or more infusions for your skin and subcutaneous tissue to get accustomed to the SCIg since initially there may be some significant bruising, rashes, itching, etc. that greatly calms down after the 2nd or 3rd infusion into a new general area. I have HMO insurance that covered all of my hospital infusion center subcutaneous infusions and now covers all of my home infusion supplies and immunoglobulin without any co-pays. If your hospital infusion center experiences go well then perhaps the prescribing physician, pharmacist, nurse practitioner, or physicians assistant can help make a compelling case for your Medicare and secondary drug coverage to pay for all or most costs, or perhaps just continue getting subcutaneous infusions at the infusion center.

[Cllady25]

ameripharmaspecialty.com/iv...

Check out the above information. It is a convoluted process, but this may be a simpler read for you to determine what to do in your situation.

Thank you for posting about this problem, there will be others who have the same questions.

[Cllady25]

This first site gives background on the Medicare coverage for at home PIDD (Primary Immunodeficiency Disorder) and it appears everything for home care should be covered.

I suspect the wording and the coding for at home care and any supplies will need to carefully worded and in the right spot to be covered as this article suggests.

ameripharmaspecialty.com/iv...

This second site gives a listing of the variety of PIDDs

my.clevelandclinic.org/heal...

Hopefully your Dr and his staff who will do the paperwork (computer work) are aware of the coding and all the possibilities for needing to be sure you can get the coverage you need.

Best wishes and please let us know how things go for you.

[Bajabarb]

I had been on monthly IVIG infusions at the hospital but was still occasionally getting respiratory issues. When I asked my oncologist abt switching to subcutaneous injections, she referred me to an endocrinologist who ran more extensive tests. He then prescribed the subcutaneous injections and a nurse was sent out to our house to teach us how to use it. Although there is a learning curve to it, we mastered it and I do it every Sunday without fail. Except for the unpleasantness of sticking yourself with 3 separate needles and sitting for an hour or so, I’ve been very pleased with the results. Since I’ve been on it (maybe 6-8 months) I have not been sick at all. I have Medicare A and B and a Humana drug plan and although we expected to pay something we have never billed either for the nurse, the supplies or the IG. We have traveled with the whole set up in an ice chest and haven’t really had a problem. You do have to keep the infusion Ig refrigerated. I am currently off it while in the hospital with Car-T treatment but hope to restart it once I get home. Hope this helps!

[lelliottaeten]

If you possibly can, try to get back on standard Medicare with a supplicant. That might not be possible with a CLL diagnosis due to the supplicant needing insurance underwriting. But if you can, go with a plan g or N and cost will be a non-issue.

[larrymarion]

My SCGG infusion materials were all covered by Medicare Part D. So the $2k co pay cap for 2025 covered my out of pocket. My insurance company and medicare covered the balance, which was more than $9k for each month.

I was surprised that the three home visits by an RN were also included, along with a lot of supplies. NO extra cost when i requested additional supplies, etc. When i whined that i needed a fourth visit, they said no.

Good luck. My IgG numbers hit , and then exceeded, the normal range within a few months of the home infusions.