IVIG most recent insurance successes?

[amyjoy]

Hello and best wishes for a much happier new year to all of us!!

 

As a mom of a PANDAS child and a health care provider to children with PANDAS, its a special mix of blessings.

 

In our office we have been offering IVIG (at cost by the way) to families and have had some success now with insurance reimbursement from Cigna and United, but none at all from Anthem Blue Cross (in California).

 

We have worked hard to educated Anthem Blue Cross about PANDAS and have submitted all the literature in support of IVIG, and have even participated in peer-to-peer review, yet all end in decline thus far. We figure, at some point in the not-too-distant future, it will become protocol to treat PANDAS with IVIG in some instances and reimbursement should become more routine. But in the meantime - how can we push that envelope??

 

Dr. Schweig had a great idea about having our office take this on, including the possibility of publicly pressuring insurance companies through social networking if they do not cover PANDAS treatment, including long-term antibiotics. Personally I'm up for taking it on! Not only were we turned down for IVIG and ended up having to do a fundraising event to be able to treat my DS, but I recently ended up purchasing a bunch of zithro from a Canadian pharmacy as well as we can still only get 3 pills at a time from Anthem.

 

So, two things:

In the most recent past (since July onwards( has anyone received reimbursement from insurance and if so, would you kindly just let me know which one? Also, declines from which ones?

 

I'll figure out how to use the general info (no personal info of course) to put together some kind of advocacy packet for insurance companies and see what happens.

 

Many thanks!

[tapiash]

My son has had 4 IVIG. All made in full by Cigna. I did not have to be reinbursed because I did not have to pay any out of pocket. Is this what you are asking?

Hello and best wishes for a much happier new year to all of us!!

 

As a mom of a PANDAS child and a health care provider to children with PANDAS, its a special mix of blessings.

 

In our office we have been offering IVIG (at cost by the way) to families and have had some success now with insurance reimbursement from Cigna and United, but none at all from Anthem Blue Cross (in California).

 

We have worked hard to educated Anthem Blue Cross about PANDAS and have submitted all the literature in support of IVIG, and have even participated in peer-to-peer review, yet all end in decline thus far. We figure, at some point in the not-too-distant future, it will become protocol to treat PANDAS with IVIG in some instances and reimbursement should become more routine. But in the meantime - how can we push that envelope??

 

Dr. Schweig had a great idea about having our office take this on, including the possibility of publicly pressuring insurance companies through social networking if they do not cover PANDAS treatment, including long-term antibiotics. Personally I'm up for taking it on! Not only were we turned down for IVIG and ended up having to do a fundraising event to be able to treat my DS, but I recently ended up purchasing a bunch of zithro from a Canadian pharmacy as well as we can still only get 3 pills at a time from Anthem.

 

So, two things:

In the most recent past (since July onwards( has anyone received reimbursement from insurance and if so, would you kindly just let me know which one? Also, declines from which ones?

 

I'll figure out how to use the general info (no personal info of course) to put together some kind of advocacy packet for insurance companies and see what happens.

 

Many thanks!

[amyjoy]

Hi Shirley

Yes, I meant, whatever has been paid by insurance, or not.

Thanks alot.

i hope your son is doing really well!!

[melanie]

I have NJBCBS and have had 16 IVs paid for .Not under PANDAS Dx but under CIVD

[wornoutmom]

Amyjoy: Denied, denied, denied by Aetna for IVIG in June. Despite 3 appeals, peer to peer review phone call and letter from the chief of pediatric neurology of a very well respected children's hospital. Paid entire amount out of pocket.

[kimballot]

HI - you might want to include the fact that Canada recognizes IVIG as an accepted treatment for PANDAS. Here is a quote from PANDAS Denmark that I am copying and pasting from another thread.

 

Hi,

So very sorry to hear, that you are having such a hard time getting treatment for your child !

Hoping this might help you :

 

"Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions" :

 

In Canada, intravenous immunoglobulin (IVIG) use has increased by 115% over the past 7 to 8 years.

Given this increased usage, Canadian Blood Services and the National Advisory Committee on Blood and Blood Products for Canada identified the need to develop and disseminate evidencebased guidelines to facilitate appropriate IVIG use.

As a result, guidelines for IVIG use in hematologic and neurologic conditions have been developed and are published in this supplement of Transfusion Medicine Reviews. This commentary provides a brief description of the process used to develop

these guidelines and includes a summary of the recommendations for IVIG use in the various conditions evaluated.

 

The guidelines states, that :

 

"Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS)

IVIG is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of

PANDAS requires expert consultation."

 

(http://www.bloodmed.com/contentimage/guidelines/2854.pdf)

 

Best wishes -

[norcalmom]

Denied. We should hear back in the first appeal Amy day now.

 

Laying in bed last night thinking about this. Insurance coverage would change sooo much. Not just

The money, but the perception of how to treat pandas. I think so many of us wait to long for ivig. Because if doctors

Won't prescribe it, insurance companies call it "experimental", it scares the heck out of parents.

 

I dint know any thing about how to get insurance companies to change, but I feel that some of them have knowingly

Done much harm with their policies, I'm thinking class action law suit might be an option!

 

For example, our provider, begins and end in A, and their own website has a definition of what pandas is (and they list

3? Doctors that reviewed it) and in it it says in severe cases ivig and pex are used as treatment.

[amyjoy]

Thanks for all info, that is awesome about canadian system, i know someone was recently on the forum from canada looking for PANDAS care for her child and feeling desperate, i'll see if i can find that and be sure she has made a good connection.

 

We were thinking that publicly pressuring the insurance company by a grassroots social media campaign would make them look demonic if they don't cover. Actually it was Dr. S that thought we could put together a solid best practice packet (which of course we've done more or less with each submission)and if necessary, create bad press for them via like facebook, tweeter etc, where millions of irate anti-corporate BS anti-big brother$$ people can be reached within minutes. A couple of people had suggested we do this when DS was turned down by anthem and we were fundraising for his ivig. i wanted to, but i just didn't have the bandwidth at the time, it was too personal and i was totally crazed. but now we're over that hump and i want to do something to impact our ability to get the care our children deserve and to have it covered as it should be and, we believe, it will be in the not too distant future.

 

the thing about "severe cases" is on the NIH website, still. I don't understand why exactly but the language says that because of the side effects of IVIG, it is reco'd only in severe cases. What constitutes a severe case? That is too vague to leave in the hands of insurance companies. A couple of kids who received IVIG in our office had the severe headache which we treated and they got through it, even some nausea and vomitting but if you asked them, not enough to warrant not getting the IVIG. The risk of true anaphylaxis is practically negligible if the child does not have abs to IgA which should be screened in advance, and if they have a true IgG immunodeficiency syndrome, you would test for abs to IgG, and then IVIG is the treatment of choice for those children. And of course, they are meticulously monitored for safety throughout the infusion. If you ask the child or the family, for the most part, once they consent, they believe that the risks are worth it. That should be left up to each individual family to decide for themselves, not some insurance processor. This whole thing totally rattles my cage.

 

anyway so far, i'm hearing that cigna and united has covered, aetna and blue cross not so much.

[JAG10]

We have Independence BCBS's direct HMO-Keystone and found out yesterday she is covered for 6 months of IVIG. (Praise God!)

 

It depends on how it is coded. Is your purpose to get it covered....or get it covered for PANDAS?

[amyjoy]

We have Independence BCBS's direct HMO-Keystone and found out yesterday she is covered for 6 months of IVIG. (Praise God!)

 

It depends on how it is coded. Is your purpose to get it covered....or get it covered for PANDAS?

 

Hallelujah, congrats.

 

To answer your question, for each child, to get it covered and code to the best possible chances of reimbursement.

in the bigger picture to bully the insurance companies to just say yes to PANDAS.

 

Can i ask what state you live in and any other info you care to share about the billing?

thanks alot!!

[JAG10]

We live in the suburbs near Philadelphia, PA.

 

It is not automatically covered, in fact, with the same insurance we paid out of pocket in May with Dr. K. I don't know exactly what information Dr. B submitted that swayed them, but he seems to have a good track record and perhaps your Dr. S can call him. He submits for different immune deficiencies based on the lab results obtained. My dd11 had low IgG, low IgA, failed strep pnemoniae titers (vaccine) some failed H Influenzae vaccine too. Some companies have specific thresholds for what is covered for "low IgG or IgA" i.e. just cuz the lab says it is low doesn't mean they think it is low enough for treatment. I also don't know if it is a combination of factors that can tip the scales, but he did have us repeat the Strep Pneun. 14 serotypes so he would have two measurements, both of which dd failed with no response to a majority of strains.

 

I'd have your doc call him. He said he usually doesn't call the peds or GPs unless they have an interest in PANDAS, but if they do then he is more than willing to help the cause.

[Priscilla]

we had 4 HD ivig paid for by United Health Care under a PANDAS/Immune diagnosis. Would have been responsible for $2000 out of pocket maximum but pharmacy ate that cost on 1st dose knowing they would be reimbursed at 100% for next 3 doses.

[adkmom]

Amy,

 

We're only 2 months into the Pandas "world" but many thanks for taking this on! Sounds like you're the perfect person since you know the in and outs of the health care field.

 

darlene

[amyjoy]

We live in the suburbs near Philadelphia, PA.

 

It is not automatically covered, in fact, with the same insurance we paid out of pocket in May with Dr. K. I don't know exactly what information Dr. B submitted that swayed them, but he seems to have a good track record and perhaps your Dr. S can call him. He submits for different immune deficiencies based on the lab results obtained. My dd11 had low IgG, low IgA, failed strep pnemoniae titers (vaccine) some failed H Influenzae vaccine too. Some companies have specific thresholds for what is covered for "low IgG or IgA" i.e. just cuz the lab says it is low doesn't mean they think it is low enough for treatment. I also don't know if it is a combination of factors that can tip the scales, but he did have us repeat the Strep Pneun. 14 serotypes so he would have two measurements, both of which dd failed with no response to a majority of strains.

 

I'd have your doc call him. He said he usually doesn't call the peds or GPs unless they have an interest in PANDAS, but if they do then he is more than willing to help the cause.

 

YES i will ask him to do that!!

Thanks for the idea.

[kimballot]

HI - I came across this site called "Advocacy for Patients With Chronic Illnesses". It looks very interesting and they have some good ideas for advocacy in general...

 

http://www.advocacyforpatients.org/index.html

 

 

 

They also have a specific section on IVIG and appealing IVIG denials. They do not have examples for PANDAS, but perhaps someone from this forum would be interested in working with them to do that Amyjoy - could this fit in with what you are doing?

 

http://www.advocacyforpatients.org/hi_ivig.html

Edited January 6, 2011 by kimballot