Less Expensive Option for IVIG

[amyjoy]

I hope this is ok to post.

It is NOT a solicitation, but information that I would want myself if someone knew about it and i needed it!!!

 

I am a mom of PANDAS DS14, we are struggling to raise money to get him treated with IVIG - he needs 190 grams at the tic dosage of 2gm/kg, and he is 6ft 1, nearly 200 pounds. That's $12,436 just for the meds. You know what i'm talking about.

 

Every day families like me on this forum are at wits end trying to juggle and manipulate the insurance companies and find a way just to afford our children's care. This has me livid.

 

I am also a nurse practitioner in a progressive practice in northern CA and I just want everyone to know, that as a solution to this problem and to open the door for treatment for more of our children, we have started doing IVIG/gamunex for PANDAS children at extremely modest cost.

 

First of all, I can order the medication at a discounted rate of $72/gram which I've been told by our rep is the lowest rate available and we do not mark this up, as is typically the case, but pass the exact cost directly on.

 

Second, we do the entire both days of infusions including all pretreat meds, nursing care and supplies, for a total of $3500 inclusive. This is not for shoddy care, btw!!

 

Anyway, if this makes IVIG more possible for your child, just let me know.

 

If this is overstepping the bounds of this forum and is construed as a solicitation, I'm sorry and expect this posting to just disappear, or i will receive a notice saying this is not a good post. I just want this information out there so am taking a risk.

 

All of that said, i still cannot even treat my own son, yet! We have raised $5100 towards our goal and i pray that by the holiday break, he will be treated.

[dabel]

Bless your heart! This would have saved us thousands!! I think we paid $120/gram. If I was not personally involved in the fight to get our kids treatment, I would not believe what parents have to go through to get their kids the help they so desperately need!

Edited October 21, 2010 by dabel

[amyjoy]

Bless your heart! This would have saved us thousands!! I think we paid $120/gram. If I was not personally involved in the fight to get our kids treatment, I would not believe what parents have to go through to get their kids the help they so desperately need!

 

Yes, I hear that! Before i knew about this forum, i was so isolated in the struggle i thought i was going bonkers. well, i think this kind of situation could make any one feel that way. And you know, to hear you paid so much for the IVIG, and know that your provider then made $50/gram - per gram - on your child's treatment!! i have no problem with people making money and charging for their services, at all!! But being taken advantage of inside of a system that is fighting us every step of the way, that's just plain wrong.

[norcalmom]

You know, I never questioned that - but I am going to ask our infusion center to break down the cost of the gaumex. And I will ask if the Doctor is paid a fee by the infusion center or by the drug company. Since I know our Dr was well compensated for his time at the infusion center (and I shared him with 2 other patients during the 8-10 hours he was there, so they were paying the same fee) I'd be surprised if he was also making money from the infusion center "selling" their product. It sound unethical. our Dr. billed his time separately, so I don't believe he's is getting paid a "commission", but something to be aware of.