INSURANCE AND COST OF IVIG FOR PANDAS

[MIAS_MOM]

I'm curious to hear how insurance companies are (if they are) going to pay for IVIG , and if they did not pay, then how did you handle the bill? We are 2 yrs into PANDAS, we have an appt with Immunologist in another state in June, I'm worried we may not be able to afford the cost of this treatment for our dd.

[heatherdawn]

We paid $4k.

[texasmom]

I'm curious to hear how insurance companies are (if they are) going to pay for IVIG , and if they did not pay, then how did you handle the bill? We are 2 yrs into PANDAS, we have an appt with Immunologist in another state in June, I'm worried we may not be able to afford the cost of this treatment for our dd.

Our insurance covered it. The total cost of treatment so far was 13000. Insurance paid all but 800.00. We travel from Texas to Ct. Hope that helps.

[kimballot]

We have United Health Care. They have covered 100%. Not even a copay.

[nicklemama]

Our insurance, BCBS MI, has denied us. We will appeal. The center where DS is having his IVIG has given us an uninsured price if insurance does not come through. Cost will be $9,000 in total. DS weighs 55lbs.

[MIAS_MOM]

WOW !!! I would like to believe in a place that would want to make you well without taking all your $.

[SSS]

WOW !!! I would like to believe in a place that would want to make you well without taking all your $.

 

 

 

 

Well, the product itself is the expensive part- and the more your child weighs, the more product you need. And then, you are paying for trained medical personal to execute the procedure.

My dd6 weighs 40 pounds.

We had no insurance coverage.

For 36 grams, 2 day outpatient service, we paid around $4,800.

For 26 grams, 2 day outpatient service, we paid around $2,900.

These prices also included hydration IV, benadryl, and steroid.

We went through Coram lab near our house, with our PANDAS Dr. sending the prescription over.

[nicklemama]

The charge to insurance, if it agreed to cover, was a lot more than that. I believe the gamunex is around $130 per gram and my son needs 1.5g to the kilo. He weighs 55lbs. The out patient centers total charge to us, without insurance coverage for this is $6600 for gamunex and facility fees for nursing, IV lines, use of a room for two days, IV fluids, benadryl administration preIVIG, not sure but maybe steroids. Our doctors fee is $2400. The total comes to $9000. I think the center is actually getting around $1800 for the two days. The IVIG med is nearly $5000 all by itself. I don't think they are getting rich on uninsured patients. The drug company seems to be getting its fair share.

 

We will appeal but I don't have much hope.

[tpotter]

Insurance is paying 100%, but we had to fight to get it (we went through several appeals, and finally won...it wasn't easy.) There's no way we could have afforded it otherwise, as my DSs are 160 and 200 lbs (at 1.5 g/kg) that's about $15 - $18 K EACH! But, that's why we fought insurance.

 

Try not to have the term "PANDAS" in the records if at all possible. Some insurance companies will pay for PANDAS, but most don't. If this is an immune deficiency, then code it as such. If it post-infectious encephalopathy or encephalitis, the code it as such (the doctor has to be able to justify this, though.) Doctors who know what they are doing should be able to code it right the first time (that also may be a reason to stick, for now, with doctors who really understand the importance of finding all the reasons possible that will get through insurance.

 

Good luck.

[MIAS_MOM]

Insurance is paying 100%, but we had to fight to get it (we went through several appeals, and finally won...it wasn't easy.) There's no way we could have afforded it otherwise, as my DSs are 160 and 200 lbs (at 1.5 g/kg) that's about $15 - $18 K EACH! But, that's why we fought insurance.

 

Try not to have the term "PANDAS" in the records if at all possible. Some insurance companies will pay for PANDAS, but most don't. If this is an immune deficiency, then code it as such. If it post-infectious encephalopathy or encephalitis, the code it as such (the doctor has to be able to justify this, though.) Doctors who know what they are doing should be able to code it right the first time (that also may be a reason to stick, for now, with doctors who really understand the importance of finding all the reasons possible that will get through insurance.

 

Good luck.

Yes, I have that in the front of our folder, to try to get a diagnosis other than pandas to get insurance to cover. I'm also looking in to taking out a secondary insurance just for her to help with ALL our medical bills, not to sure i can do this, just stared looking into it. Thanks, I like to know ahead of time what we could be looking at so I'm better pepared. God Bless you all in this horrible adventure.