We have just gotten the diagnosis for SFN *AND* a prescription for gammagard IVIG, and just when we were happy that finally it was figured out and there is hope for successful treatment - we started hitting obstacles with insurance and the pre-approval. We're in midst of appeals, but as I'm looking online for guidance, I'm finding how it has been difficult for people to get this covered.

Do people have suggestions for how to get this approved through insurance, or other routes through the system?

I am finding some clues but they lead to more questions.. ie:

-- Is it better/ does it make a difference if you are getting in-home treatment or go to an infusion center? Somewhere I saw it looked like the centers might be easier to get covered, but not sure.

It is not one of the Primary Immunodeficiency Diseases which (I am just learning) makes a difference. This is for a loved one, we are all just learning about how this all works.

Thank you for any help/ experience here.

What state are you in? Your physician should be the one providing your insurance company the documentation for IVIG approval. You can call and speak with the patient coordinator with the specialty pharmacy where you might get your medication and they will be a great source of how to get the medication through your insurance. Also, if you cannot afford the copay you can ask for a financial waiver from the pharmacy (where you will get your IVIG). You can ask for a specific pharmacy and you do not have to use the one the physician says. You can also have your infusion at home vs going to his office or a suite. I will try and do what I can from my end. I am getting ready to start IVIG myself. I am an infusion nurse and have given tons of IVIG to patients. I'm not that well versed on the insurance side; but I know people.

Thank you so much for helping.
We are in Pennsylvania. A neurologist made the perscription and insurance denied it. There was 1 first level appeal so far the doctor provided medical reports and other information, and that was denied. We are starting the next level appeal, I am learning more about this process and how it works. Meanwhile Right now we are in the hospital for an emergency related to his sfn and it is not the same system as the specialist who perscribed it.. the dr here isn't delivering it and I wasn't here to understand of it was bc of insurance or bc he didn't agree w the other dr. We are trying to coordinate them better and hopefully get the first dose here.. he needs it now.

I was unable to message you so I will try to help you here. There is a specialty infusion pharmacy in Aston PA who may be able to help you with your rx getting it through the insurance company maze. The company is Infucarerx.com Call and ask for the patient coordinator for new referrals. This company is a specialty pharmacy; but they also arrange infusion nursing care. If you can ask for, then ask for a contract nurse and not one they get from a home health agency. The contract nurses are usually specialty infusion nurses and understand IVIG. Let me know if I can help any more. I don't want to look like I am trying to "sell" a company. This is just the one I am using.