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Paying for IVIG?


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I guess what I meant was, if insurance isn't paying for it, how does a person get the funds to just drop down $10,000, $20,000+ on treatment? Especially if you are poor or middle class? Do you take out loans? Sell your car? How do you get the money? Are you wealthy?

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If your child has an immune deficiency, that is the first angle to try for coverage. I'm not aware of any insurance covering for PANDAS specifically, though some might get coverage for encephalitis. Check your policy language - if you can fit your child into a category in the policy, give it a try, though I recently read that insurance always pushes back; expect to appeal. We did not get coverage, though I recently read that it might be easier to get it through the prescription coverage service rather than through the regular medical coverage.


Keep eyes and ears open for clinical trials. I don't think there are any current PANDAS studies with IVIg though there might be another one in the future. See https://clinicaltrials.gov to search for studies currently recruiting participants. Here is a link to a search I made https://clinicaltrials.gov/ct2/results?term=ivig&recr=Recruiting&type=&rslt=&age_v=&age=0&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e= Interestingly, there is a trial for children with encephalitis but it looks like it's in the UK only. If your child has an immune deficiency and is prescribed low-dose IVIg, there is a trial of a new IVIg product.


Also the price may be different depending on where you are getting it. Our clinic has a slightly cheaper price for out-of-pocket patients, 70-something per gram (vs 90-something per gram), times how many grams + a couple hundred for the nursing fees. How many grams is based on dose (0.5 or 1 or 1.5 or 2 g/kg) and weight (how many kg does your child weigh?). Don't forget about frequency - if you are looking for a single high dose, that will be cheaper than frequent low dose (except that frequent low dose is much, much more likely to get coverage for an immune deficiency).

Edited by jan251
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We are faced with IVIG now too. Not sure if your child/patient has PI, but here is what I found tonight:


"Intended for US audiences only

Questions? Call 1-855-250-5111.



Let's face it. Health insurance can be daunting and confusing, especially when you have a chronic condition like primary immunodeficiency (PI). And even with insurance, paying for treatment can be tough at times. When you enroll in MyIgSource, you'll receive support to help you understand and manage your insurance, and you may be eligible to receive financial support, including a copay card for Baxalta Ig products for eligible patients with PI.


Insurance Support


MyIgSource can connect you with insurance experts who can help you better understand things like:


Insurance terminology and insurance basics

Understanding coverage

The ins and outs of choosing a new plan

How to manage coverage transitions

How denials and appeals work

What to expect if starting a new product

Additionally, we understand the challenges that may come from starting a new treatment and living with a chronic disease such as primary immunodeficiency. Thats why we offer health insurance coverage support for patients. See how we can work with your doctors and insurance companies to help you access the immunoglobulin (Ig) treatment your physicians prescribe.



Financial Support


For eligible PI patients with commercial (private) insurance, we offer financial support including a copay card for Baxalta Ig products to help ease the financial burden of immunoglobulin (Ig) treatment. To learn more about these programs, visit the product pages in the Baxalta Treatments section.


If you lose your health insurance coverage, we may be able to help you receive Baxalta products at no cost (For those who qualify. Financial criteria apply.). To learn more about this program, call 1-888-229-8379.


Reach Out for Support

Start taking advantage of all the resources and tools this program has to offer.



or call 1-855-250-5111"


USBS/MG89/16-0144 October 2016





Here are a few more resources on finacial aid/Patient Assistance:




Edited by mayzoo
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