zekieban Posted October 1, 2017 Report Share Posted October 1, 2017 Hello, Our 18 yo son is scheduled to receive two infusions of ritucimab later this month. Has anyone had success getting insurance coverage? We have Anthem BC/BS and it was suggested by Dr. L's office that we proceed and pay for the treatments (very expensive) and then apply for coverage, with the theory that if it is denied prior to getting the treatments, it will never get covered. But we are worried about proceeding in this manner. It seems like we need to do something regarding insurance coverage prior to the infusions. Does anyone have any suggestions? Thank you so much. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted October 1, 2017 Report Share Posted October 1, 2017 Dr. L.'s primary mission is to care for your kid; how, exactly, that care gets paid for is on you. So they don't have much to lose in giving you this advice, and it prioritizes your child's care, if not your financial situation. In the past, BCBS used to recognize IVIG treatment for PANDAS; however, I believe that has been withdrawn in the last couple of years. So whether you apply in advance or attempt to submit for reimbursement after the fact, you are likely to, at a minimum, have a fight on your hands and, at a maximum, be held responsible for all of the costs directly, with no reimbursement whatsoever. The exception may be if your child has a documented immune deficiency. If he/she does, I would go ahead and contact the insurance company in advance as I don't think you'll have anything to lose. Hopefully some others will chime in here with direct, recent experience. All the best to you! Link to comment Share on other sites More sharing options...
dasu Posted October 2, 2017 Report Share Posted October 2, 2017 (edited) I have heard the pay-first approach has worked with UHC with a few other people. We also use Dr L. We did try that for IVIG and was successful the first time, not the second. Andrea at Dr L's office seems fairly experienced with this. BTW what is the cost for rituximab? I thought the patent expired so cost should drop? Edited October 2, 2017 by dasu Link to comment Share on other sites More sharing options...
BradsMom Posted October 2, 2017 Report Share Posted October 2, 2017 Our son was Dr L's first rituximab patient 3 years ago. It worked miracles - but it stopped working a year ago and we can't get him back, despite continued immune therapy. Re: insurance, it's not the company, it's how well FUNDED the plan is. We are blessed that my husband works for a fortune top 10 corporation who is self-funded and very generous. It was fully covered. Each treatment is in the neighborhood of $30,000. Don't get me started on that. Do you have a nurse case manager with Anthem? Call them to find out. if yes, she will be your best resource. God bless and best of luck Link to comment Share on other sites More sharing options...
tj21 Posted October 2, 2017 Report Share Posted October 2, 2017 In all my years of dealing w/insurance issues, I've not heard of this strategy, so will be interested to see what happens for you. If your insurance plan requires pre-authorization, then it's worth going that route since they could deny afterwards if you didn't do that. We just got denied for DS18's 3rd IVIG on BSCA. We got pre-approval for the two others under our other insurance AND BSCA. So apparently now BSCA is cutting back, or our current medical team didn't submit enough info. We're appealing the decision. Good luck, it's all so hard. Link to comment Share on other sites More sharing options...
zekieban Posted October 3, 2017 Author Report Share Posted October 3, 2017 Thank you all so much. I will try to find the nurse case manager for BCBS tomorrow. We were quoted $15000 per treatment, so a total of $30k. This is so mind boggling. Dr. L talks of curing our son and seems highly optimistic, so when I see BradsMom's response, it is disheartening. But what are we to do? Our son has struggled for so long -- ups and downs-- and we have had some success with plasmapheresis but not what we were hoping for. I'll keep you all posted. Link to comment Share on other sites More sharing options...
Atiredmom Posted October 7, 2017 Report Share Posted October 7, 2017 From personal experience, this approach fails. PA's don't take a lot of time to do and they protect you. Prior authorization is always preferable if you want insurance to cover. We have had all sorts of treatments covered that we submitted ahead of time and none that we submitted after the treatment for PANS. A friend of mine has been through the same with fertility treatments. Also $30k! Wow that's a lot of money. Google the cost of Rituximab. I know that the NP who treats in CA is not charging that much and Walgreens and CVS are not either. You can find out the cost per 100 mg of Rituximab on several websites. http://consumersunion.org/outrageous-health-costs/cancer-drug-markup/ That means when your insurance does get the bill, they will likely write off the cost that is above usual and customary and won't consider paying that amount even if they do cover the treatment. That number is usually right around the rates they contract to large pharmacies like Walgreens and CVS. No personal experience with this doctor but I did read some alarming comments regarding submitting insurance there in this article which is part of why I decided to seek care for my children at another office. http://www.bethesdamagazine.com/Bethesda-Magazine/January-February-2016/The-Mystery-of-PANDAS/ Link to comment Share on other sites More sharing options...
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