Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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TinaMcG 04/23/2011

They lowered the copay on Hizentra to $150 every three months on my Medco pharmacy plan!

I was printing up some paperwork to bring to my doctor in a few days and thought I had typed in the product name or dosage wrong. Previously it showed as $350 every three months, but they changed it's status to "preferred product" and put it in a lower tier with a copay of $150. I guess it is because of the discontinuation of Vivaglobin.

I had been waffling on switching from IVIG to SubQ, mainly because of the additional $1400 a year it would have cost me. Now with the drop to only $50 a month or $600 a year it's time tell my doctor I'm ready. I'm glad I decided to look up the copays again.

Check your pharmacy plan, I hope you all find a pleasant surprise there like I did!

Joyfully
TinaMcG

deleted_user 04/24/2011

Okay, I guess it's time for me to ask what is the difference between all/most of the replacements. I get Gammagard. I have terrible reactions but have been told they will get better the more I get them. The first time I had a seizure, my BP went to 196/164 ( normal for me 116/68) and my temp went to 101.2 ( my norm: 97.4). It has gotten better but I hate the pre-treats. I am so out of it for almost 3 day after infusion. HELP

markincleveland 04/24/2011

Tina, I've never heard of Medco shipping Hizentra. I thought all of their specialty pharmacy meds went through Accredo, the specialty pharmacy they own.
On your plan is it treated as a pharmacy or medical benefit? If it is pharmacy do you have a tier 4 in your plan or is tier 3 the highest?
Thanks, I learn something every day.

TinaMcG 04/25/2011

If I get SubQ immunoglobulins at home, Accredo provides the supplies and nurse support under my medical insurance, Medco provides the Hizentra under my pharmacy plan. Getting Privigen in the outpatient hospital setting the whole thing, including Privigen, was covered under my medical plan. It's enough to make your head spin. They are using a three tier system, with plan preferred being the second tier.

Lekpinkham, I haven't had much experience with different brands, I like the Hizentra subQ because it doesn't require refrigeration and seems to be well tolerated by many people. The first few months I was on Gammagard iv I felt really, really crummy for a few days afterwards, but each month got easier. I hope it starts getting better for you.

TinaMcG

TinaMcG 04/25/2011

Correction, it appears the whole thing including nurse support and supplies is covered under the pharmacy plan. Medco provides the medication, Accredo supplies the hardware, I supply the pharmacy copay.

deleted_user 04/25/2011

Thank you Tina... my first treatment was terrible. Seizures and really close to cardiac arrest. Now they pretreat me and I still have the seizure and elevated temp. I hate the treatments. It takes me about 3 days to start feeling better. I would love to do all this at home. Seeing a specialist tomorrow at the University of Michigan tomorrow. Maybe I can get more info on different treatments. I would love to do this at home instead of the hospital.

deleted_user 04/25/2011

I am having BP problems too with the Hizentra, but not as severe as what you describe. Possibly because it is weekly, so not as much of a dose at one time. I am told it should get better with time too, but until then it has been wearing me out.
I also get my meds through Accredo. They have told me it is a monthly specialty pharmacy copay. I just started 6 weeks ago, so I haven't gotten the bills yet to confirm that the prices are what they said it would be.

Marilyn-Doss-Wright 04/25/2011

I also have Medco Accredo. I was told that I was not able to get 90 day supply/cost of my IVIG (currently Gammagard S/D low IgA). My insurance says $120 for 30 day supply or $160 for 90 day supply. I called Medco and asked why I was unable to get a 90 day supply and no one could tell me. I pushed the issue and they kept sending me to other people to find out why I was limited to a 30 day
supply. After 6 people, I was finally approved for the 90 day supply. I think someone else on here receives the IVIG monthly but pays the 90 day rate.

deleted_user 04/25/2011

Why have I not gotten a bill yet for any of my IVIG. I have Medco as well. I have seen nothing. This is going to be an outrageous bill when I finally do. Does having my treatment in a hospital setting make the difference? HELP

TinaMcG 04/26/2011

Receiving the ivig in the hospital, I was charged under my medical plan, and Medco wasn't part of the transaction at all. The hospital pharmacy supplied the privigen/gammagard/etc and the whole treatment was billed to Aetna. Under my last insurance, it was $75 a month copay, under my present insurance I pay $650 deductible, then 20% of the bill up to a maximum out of pocket of $2150. if you paid a copay, you might have already paid your part.

Call the hospital, or your insurance, whichever is more helpful, and ask what your charges are going to be. It's better than cringing every time you open your mailbox!

Tina

deleted_user 04/26/2011

I'm kinda getting used to the mailbox cringe. I think that is part of CVID too. LOL. thank you for the advice.

deleted_user 06/22/2011

Tina, this has been interesting to read, I too am switching over for SubQ Hizentra after IVIG for 15 years. In fact my first infusion is on this coming Monday which I'm pretty excited about. I've been wondering about the coverage under prescription vs coverage under medical like I was on for IVIG. It's difficult to get useful answers from the people at United Health care but Accredo has been pretty helpful so far. I'm in the same boat with Medco sending the drug and Accredo sending the supplies and nurse. If you'vfe already switched over to Hizentra I'd be very curious to hear how it's been so far.

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