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Living with Polyneuropathy CIDP, GBS, & CMT

Cost of IVIG


#1

My adult son was diagnosed with CIPD in July. He has started IVIG treatment. His insurance has a 30% co insurance payment, after deductibles are met. We are expecting his portion to be about $18,000 dollars. We could pay that one time, but not on an ongoing basis. Anyone want to share their experience? How do you manage to continue treatment at those cost? Is there any help?


#2

He might want to look into getting a home infusion via a company such as Axelacare, Bioscrip etc. Generally those are cheaper than in the hospital setting. I've been on IVIG for about 2 years, and I'm 19, so trust me, I know about the financial hardship. Look into different infusion centers as well - not all of them have the same costs.


#3

I agree totally with rgalla7822 above. Different companies have diifferent agreements with insurance companies When I had it done in the hospital - they charged insurance over $60 K just for the infusion and meds I have had Walgreens do it since and my outlay was significantly less - plus they were willing to let me make monthly payments, which helps a lot since I had to retire Good luck - but definitely shop around


#4

Some of the Immunoglobin companies will help with your copay. I get Gamunex and they have a copay program. Every year I get a prepaid Visa with $2500 on it to put towards my out-of-pocket insurance expense. It won't cover all your out-of-pocket but every little bit helps. I don't know about other immunoglobin brands but Gamunex does have a copay assist program. Call your company and find out.


#5

I get IVIG for auto-immune induced ataxia. I get it in Israel where it is free or cheap because there is universal health care. My suggestion: Call your local congressperson/or/and TV station. Make a stink. I know this is a pain but it might be helpful. On a practical note: Look into treatment in India-- much cheaper or Canada. Medical Tourism, the field is called.


#6

Thank you all so much for responding. We are trying to find any information possible, and what better source than veterans. Again thank you.


#7

I am in Australia, I too don’t pay. My dr has to ju$tify treatment though. If I didn’t respond well enough no ivig I wouldn’t be allowed to get it. What happens to you if you can’t work & therefore can’t pay? I had no ida how expensive it all was. I was just glad someone finally had an idea of what was going on; and they had treatment. Good luck!


#8

http://www.gbs-cidp.org/You should be able to participate in a program through the drug manufacturer. My wife takes GamunexC & they pick up the out of pocket for the drug. I recommend having the infusions at home. You may want to contact the CIDP org. as they have additional resources: http://www.gbs-cidp.org/


#9

My IVIG treatments are run through my insurance as a "preventative" cost....which covers 100%. You may want to check and see if it can be run through your insurance this way instead. It is all in the way it is coded. I have been getting IVIG treatments for 2 years and haven't paid a dime because it is coded this way. It is worth checking into.


#10

Reading the above responses, I get my infusions at home and use Bioscrip if this helps any.


#11

I used Gammunex C and have now switched to Omigram. I am told they are the same thing just Omigram is cheaper.My infusions are done in the hospital ambulatory clinic.
Tammy said:

Reading the above responses, I get my infusions at home and use Bioscrip if this helps any.


#12

I am an American living in Australia and was/am surprised to learn that ALL IVIG products here are stored/distributed by the Red Cross...(when I asked the nurse about it she said "it is a blood product") .just saying maybe check with the American Red Cross?

Cheers


#13

Welcome to the group! Sorry you need to be here, but what a great support group it is. It has been very encouraging reading from everyone, knowing we are not alone & there are lots of folks out there for each other. I’m extremely fortunate as my insurance pays 100% of my treatment costs minus my $30 copay. I am on a biweekly IVIG treatment schedule so it extremely expensive & if not for my ins couldn’t function, I get my infusion at my neuro’s office. They have set aside a small unit where we can go & it is right next to the doctors office just in case we have an adverse reaction. I’m not sure how many doctors do it this way but it is covered the same as a regular visit to the doctor’s office. The hospital would be much more costly for me. Maybe you could find a neuro that does it this way & maybe the ins company would cover it as mine does.
Best wishes -
Terri


#14

When I was diagnosed, here in West Virginia, I automatically qualified for Social Security disability coverage. It took a yeast, but now I pay $102 every 21 days. This includes hospital admission because my drip must be veerrrrryyy slow at 65. Have your son apply for disability. Many law firms handle everything. My lawyer told me CIDP automatically qualifies. Good luck.


#15

I have been told by my neuro that the Ivig treatments are very expensive,as we all know. Up till last month,I was covered by my spouse's insurance and only needed to pay a co-pay of $40. I am now on Medicaire and I will have to pay a percentage of the treatment,which will be more than I can really afford. Is anyone on medicare now and if so how can you get at home or free "preventative" treatments?I live in a very rural area, but now being on medicare I can go to some other areas to get infusions. Any ideas would be helpful as some of the above suggestions. Bless us all and try to be positive. Pumpkin


#16

Ask the Dr to admit your son thru the ER & he can get the treatments in the hospital as an inpatient… That’s what my Dr did with me for many years!
Heather


#17

Goodness! I do know how you must feel, I was diagnosed with CIDP and had to wait for months before my insurance would pay. Fortunately, we chose to have in home IV infusion. After the first loading dose (5 days) I had a remarkable effect. One tremor, numbness, balance...etc. went away. I have marked all on calendar. OK. Cost...after Rx from Oct.-Dec. we are looking at paying out of pocket $1,200. I don't know why, all I am saying...see the results one gets from IVIG. Younger people will see differences due to their age and constant changes, Older people...we are a toss-up. Some do well others not so well. I did well. Now, I will fight for you that do not do well or are in the "pool." The "pool" is what I describe as all that have been thrown away because of "neuropathy." Better diagnosis...find a doctor that will guide you to a place and will not drop you into the "pool." Cost varies country to country. In US, if you sign up for ACA, they don't discrimanate because of previous health issues. Don't know anything more about AHC...since I have my own insurance. Don't give up. Don't throw yourself in the pool.


#18

Neta,
My daughter is moving to Israel from the US. We are deciding whether to purchase insurance in Israel. Is there a specific insurance there that will cover the IVIG infusions?
Thank you in advance for any information.


#19

Have you thought of contacting a specialized agency such as Nefesh B’Nefesh? They seem to have quite a lot of information about how health insurance works for people who are making Aliyah. Here’s an example. (click on the blue)

Seenie


#20

I have CIDP and I’m on Medicare. I’ve been round and round with them and my Plan D drug insurance company about the costs. What it comes down to: If you’re on Medicare and have medigap insurance too, you can go to an outpatient infusion center and all costs will be covered by Medicare B except for your deductible at the beginning of each year. BUT — Infusion centers have contracts with certain drug companies, so you might have to change brands (which is up to your doctor). I am still getting in home infusions through Axelacare, and I pay all nursing costs out of pocket — almost $1,000 a month. I also have a co-pay of $700 every four weeks to my Plan D drug insurance. I want to switch to an infusion center, but my neuro wants me on Gammunex C and NONE of the infusion centers in my area (Northern Virginia) carry it. It’s either Gammagard or Privigen. My neuro is afraid I’ll have a reaction if I switch, because each brand has different additives. (You have to consider the additives, such as salt and glucose; the gamma globulin content is the same.) I feel like I’m stuck, because I could be getting it all for free but because of the infusion centers’ drug contracts I have to pay massive out of pocket expenses to get what my neuro prescribes. This not a cheap disease.