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extreme expense of IVIG-88K !

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Hello all,


it has been a long time since I have visited this forum. We have been very blessed. After 7 years of battling tics and PANDAS with several IVIG doses, Thomas "grew out of it" when he started having signs of oncoming puberty. Many thanks to those on this forum that helped me through one of the darkest periods of my life.


Now, I am helping a dear friend whose daughter has been diagnosed with PANDAS primarily with OCD symptoms. She is getting better after PEX and 2 doses of IVIG. The first was in Chicago and the second in our local hospital.


Here is the problem. This family was just presented with an outrageous bill. $88,000 for 2 outpatient days of 6 hours each to get IVIG. Our bills never went over 5 K for each of our IVIG treatments (and we were hoppin mad about that !)


Has anyone had this experience ? Have you been able to fight it ? I told them at first it was a typo. But the family went through several meetings with the financial department of the hospital who claim it is correct. The bill reads that it cost the hospital 54K just to order the drug. !! How can that be possible ? Wouldn't a hospital make you sign a form that said you were aware of the cost before you had the treatment ?


Any advice or insight would be appreciated ! Thank you

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UNBELIEVABLE! Our 20 year old had IVIG over two days also. Total was a bit over $15,000 (for the hole shebang), but my hubby is a pharmacist and he said the actual drug acquisition was around $6,000. If we remember correctly, that was for 80-90g. total - but I can't swear to that.


Would it be possible to find out EXACTLY what total dose and brand name they used? You can PM me with the info.


I'm so disgusted with "health care". I'm beginning to think the only thing they care about is large profits.

Edited by searching_for_help
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That's awful!


In August of 2013, our daughter's in-home IVIG infusion (2 days) cost almost $14,000 with $13,033.87 being the charge for the
"drug". She weighed about 180 pounds--weight being a factor in the amount needed. We did sign a form with an estimated charge that was close to the actual charge. Is there some kind of patient advocate who can help?

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Ask them for the uninsured rate. I'm surprised she was admitted and it was administered without prior approval from insurance or without you signing a waiver. My son had IVIG at an outpatient hospital. The insured rate for a child who weighed 65lbs was $22,000. The uninsured rate was $7600. Med costs were $5800 directly from the manufacturer and the $1800 was for the nursing care, supplies, etc.. for the two days. We had to pay the uninsured cost up front.

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patient advocate, as already suggested, is an option for you, but you may also want to contact attorney general in your state. give AG info about Walgreen prices, ask for investigation. also, contact local newspaper, remind them of the NY times stories about medical costs. they should be interested. contact then your state representative and inform them.

I am very sorry that your friend has to deal with this on top of PANDAS, like PANDAS does not screw up your family's world.

best of luck

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If contacting advocates and Attorney General don't provide results I would try change.org. Insurance companies don't want the bad press and a silver lining is more people would understand the devastation PANDAS has both on the family but also costs in the long run for schools.

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