Jump to content
ACN Latitudes Forums

HELP! IVIG for PANDAS $$$$


Recommended Posts

That doesn't make any sense. I work with the health insurance business. Doctors don't ask patients to promise not to try to collect from insurance companies. Forgive me if in misunderstanding what you said. The patient may be asked to sign an ABN (an advance beneficiary notice or waiver of liability) that states you are personally responsible for an "uncovered service" But the doctors don't ask you not to "try to recoup uncovered expenses." There's something fishy about that story. I'm sure most insurance cos wouldn't cover any "unproven" procedures but its our right as consumers to ask and appeal when they do no.

Link to comment
Share on other sites

Well, the story is second hand- but that is my understanding of what the person said happened. I know, sounds fishy to me, too. Maybe they misunderstood? I just wondered if anybody else had a similar experience....

 

 

Edited to add: Went back and re-read, they said they had to sign a waiver that Dr.K would not submit to insurance.

Edited by peglem
Link to comment
Share on other sites

Yes, it does not sound right. It would be more likely that the person signed a form from Dr K acknowledging that the procedure may not be covered by insurance and you are the one responsible for contacting insurance to find out. DS has had two ivig's with Dr K. They were both covered, the last one in Nov. He never spoke with our insurance.

 

Ok, now that sounds right. He does not submit to insurance. The surgical center he works with does it. He does submit any appointments with him to your insurance.

Edited by nicklemama
Link to comment
Share on other sites

Insurance most likely won't cover as there they only have to cover "standard of care" procedures and insurances. Still, we can try! Also, doctors can submit claims til their blue in the face and no insurance company can do anything other than reject them.

 

My guess is that the patient signed a waiver that they were responsible for all charges Re this uncovered service.

Link to comment
Share on other sites

We have a BCBS policy but my husbands employer is a huge corporation that self insures and uses BCBS to administer the program. I think the most important thing is not putting PANDAS all over the medical records and insurance submissions. My son is considered to have post infectious encephalitis. It's diagnosable, has a code, and billable. I will say we have a high deductible policy, as that is the only choice we have for a BCBS policy. We left the HMO a few months after DS was dx'd with PANDAS. So, even with insurance, its not exactly cheap. It has cost us around $5k each time.

Link to comment
Share on other sites

Nicklemama,

I tried to send you a personal message and could not get through. I would like to speak with you further about Dr. K and IVIG, and also what co-infections I need to have my son checked for before we proceed with the IVIG. I am new to the forum so forgive me if I am breaking any rules by trying to contact you. Could you please send me a personal message with your contact info? I am desperate to help my son. We also have BCBS. Thanks. Motherof2

Link to comment
Share on other sites

The surgical center recanted it's quote after I told them I could not find anybody else who paid that price....they said, "that is why we don't like to give examples". Huh? I said, "I did not ask for an example, I asked for a price ". Whatever.....Anyway, in the end, the new prices are as following...$5.000 for ivig $1,800 for facitlity use $2400 for Dr. K. Grand total $9,200...We are paying out of pocket and have decided to give it a try...We must. Perhaps Matty will be those few that never relapse....It will be done in June...

Link to comment
Share on other sites

Here's my very best advice. Get it in writing. The lady in billing that you speak to is Patricia. 630-928-1048 x 2109. She handles the IVIG billing. When you call Dr K's office to schedule, you will be sent the contact info and procedures. You can then call Patricia. She'll already have the orders from Dr K and she'll give you the price and explain everything and send you written confirmation. Then, expect to get a call a few days in advance to request payment on a credit card. They will not take a check the day of the procedure.

 

My second best advice is to request them to bill your insurance when you check out on the second day. You never know, they might pay like ours did. We did not seek preapproval and I was told the facility was out of network when I called about preapproval.

Link to comment
Share on other sites

We have had great success with long term abx to wipe out the infection(s) first, then IVig x 1. We just had another IVig in-home yesterday and the day before. Most people wouldn't have gone for the 2nd one because our son was pretty stellar-looking. However, he still had some minor flares when exposed, so we decided to try to push him completely across the frnce with one more. For us, IVig is a very positive experience and helped to bring our son to 98%. However, I belive that it may not have been successful had we not treated him with 2.5 years of daily abx first. Both IVig treatments were out of pocket, 40 g total over 2 days (son is 45 lbs) and cost a little under 5000.00. Feel free to PM me for more ionfo.

Link to comment
Share on other sites

NickleMama, you say you have post infectious encephalitis as your ICD-9 code. Just curious, do you have any imaging or labs to support that dx? There are no codes specifically for PANDAS so I just wanted to understand what you meant. Did your kiddo hand am elevated SED rate? How do you know he's suffering from encephalitis? Just curious for our own billing issues.

Link to comment
Share on other sites

We do not have imaging nor labs to support. I am not a doctor. I can only tell you that he got sick after a flumist vax, as in two days later. I don't know what is required for a post infectious encephalitis dx. I can tell you I have read the symptoms and they fit. That is the dx assigned to him by his doctor. That is all I know.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...