Re: Insurance denied 2nd round of SubQ

[Guest guest]

I had the same issue...my son is 5 yo and his levels are good but he is

always sick sinitis / strep... our subq was denied the 1st time. We have

been on ivig for 5 months now so I am feeling the same way as you I want to

switch but afraid they will deny it again

On Jun 3, 2011 9:21 PM, " Steltz " <kmay77@...> wrote:

>

> Our 5yo and 2yo are on SubQ since Nov (6months). They just resubmitted and

our 2yo was approved but our 5 yo was denied b/c his levels weren't " low

enough. " It's very frustrating for my husband and I b/c my 2yo has the worse

bloodwork (of the two boys) but my 5 yo has the worse clinical picture

(MRSA, pneumonias, sinusitis, rotavirus, regressions with illness etc).

>

>

>

>

>

>

> Im just curious....what are our options if my 5yo's levels are " within

normal limits " now? They were slightly low when we began this journey after

a dx of CVID. Going into this, we were told the 2yo was a 'classic' picture

but our 5yo was borderline. I " m torn....do we just 'wait and see' how he

does? What is the protocol? I have not yet talked to our immuno, as we just

found out today from insurance. If he can manage on his own....great, but

realistically, he is a complicated picture (metabolic issues, endocrine

issues etc). So, I think he'll probably do okay off SubQ during the summer

but next school year is going to be a nightmare and dangerous. I am just

curious about how others have handled insurance denials? How do you decide

if you will appeal them? Is it worth appealing if the blood levels aren't

what THEY want to see?Thanks for any thoughts, Kim

>

>

[Guest guest]

I'm confused. The " levels weren't low enough " ? Was this on the initial

bloodwork? Did they make you take the kids off subQ to see what their

levels would be without it? I would think they would have to be off a

couple of months to get a true reading--and that's insane to undo all that

good work after just 6 months of therapy!

The reason I say this is that my son only does trough levels now, to

determine if his dose is high enough. If you do levels while ON

immunoglobulin, you are still measuring with the effects of immunoglobulin

in the system.

If this is just the insurance company reconsidering approving the

immunoglobulin after six months, the you need to arm yourself with his

record of infections/illnesses and sick days before therapy, versus how he

did while on immunoglobulin and get the physician to do the same. APPEAL!

But make sure that you have as much info, including the recommended

protocol in this situation (you can call IDF for help).

Mindy, mom of , CVID, aged 9, on SCIG for right at a year

>

> Our 5yo and 2yo are on SubQ since Nov (6months). They just resubmitted

> and our 2yo was approved but our 5 yo was denied b/c his levels weren't

> " low enough. " It's very frustrating for my husband and I b/c my 2yo has

> the worse bloodwork (of the two boys) but my 5 yo has the worse clinical

> picture (MRSA, pneumonias, sinusitis, rotavirus, regressions with illness

> etc).

>

>

>

>

>

>

> Im just curious....what are our options if my 5yo's levels are " within

> normal limits " now? They were slightly low when we began this journey

> after a dx of CVID. Going into this, we were told the 2yo was a

> 'classic' picture but our 5yo was borderline. I " m torn....do we just

> 'wait and see' how he does? What is the protocol? I have not yet

> talked to our immuno, as we just found out today from insurance. If he

> can manage on his own....great, but realistically, he is a complicated

> picture (metabolic issues, endocrine issues etc). So, I think he'll

> probably do okay off SubQ during the summer but next school year is

> going to be a nightmare and dangerous. I am just curious about how

> others have handled insurance denials? How do you decide if you will

> appeal them? Is it worth appealing if the blood levels aren't what THEY

> want to see?Thanks for any thoughts, Kim

>

>

[Guest guest]

, what did the rest of his labs look like? How are his memory B and T

cells...his NK cells.....his titers to vaccines?  Perhaps if these are

abnormal, along with the clinical picture, and with the dr's report of his

improved clinical picture while on the Ig (i.e. less ER visits, fewer

antibiotics, less hospitalizations...they need to know they will be saving $ if

he continues the Ig therapy)...then they will approve it on appeal.

Also, I have another question...how is his neutrophil count usually? His CBCs?

Has he ever been checked for neutropenia or cyclic neutropenia or poor

neutrophil function? Some of the infections you describe may be due to problems

with his WBCs along with his antibodies....(this is the case with my son, who

has bone marrow dysfunction)

Don't give up the fight! They want you to......but keep appealing and gathering

more data.

Keep us updated....hugs, Sue

From: Steltz <kmay77@...>

Subject: Insurance denied 2nd round of SubQ

Date: Saturday, June 4, 2011, 1:21 AM

 

Our 5yo and 2yo are on SubQ since Nov (6months). They just resubmitted and our

2yo was approved but our 5 yo was denied b/c his levels weren't " low enough. "

It's very frustrating for my husband and I b/c my 2yo has the worse bloodwork

(of the two boys) but my 5 yo has the worse clinical picture (MRSA, pneumonias,

sinusitis, rotavirus, regressions with illness etc).

Im just curious....what are our options if my 5yo's levels are " within normal

limits " now? They were slightly low when we began this journey after a dx of

CVID. Going into this, we were told the 2yo was a 'classic' picture but our 5yo

was borderline. I " m torn....do we just 'wait and see' how he does? What is the

protocol? I have not yet talked to our immuno, as we just found out today from

insurance. If he can manage on his own....great, but realistically, he is a

complicated picture (metabolic issues, endocrine issues etc). So, I think he'll

probably do okay off SubQ during the summer but next school year is going to be

a nightmare and dangerous. I am just curious about how others have handled

insurance denials? How do you decide if you will appeal them? Is it worth

appealing if the blood levels aren't what THEY want to see?Thanks for any

thoughts, Kim