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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RubyWitch 03/24/2018

Hello. I'm a 66 y/o woman and was diagnsosed with CVID two years ago. It took the doctors at the hospital a YEAR of writing appeals to Medicare and my supplimental insurance company to finally get approval for IVIG infusion therapy. I don't think of myself as being abnormally stupid, but I'm apparently not understanding how this insurance works. I was told Medicare paid 80% and the suppliment paid 20%. That equals 100%.........at least in the math I grew up with. But now I'm being told that MY co-pay is 20% of the $5382.00 of the monthly infusion cost. I live on a pretty tight fixed income and simply do NOT have that kind of money. I have tried various foundations that are suppose to help with co-pays but have been told by the top three: They don't deal with Medicare. They don't cover the drug I was prescribed (Gammunex). They don't cover my type of disease. I have spent HOURS on the net searching for help, obviously with no luck. Can someone please tell me what I'm doing wrong? I can't possibly be the only one who can't afford this stuff! My doctor has tried to help by having me talk to the Patient Assistance person........she is the one who gave me the names of the three foundations who could not help me. I spoke with her again and she had no other avenues for me to pursue. Are we just suppose to crawl off and let nature take her course? I'm angry and I'm very scared and I feel HORRIBLE. ANY help or advice as to how you folks pay for this would be appreciated. BTW....I have written to several other support groups but have not heard back from anybody. Most likely because the last post was dated 3 years ago! Thank you so much.

thesauce 04/14/2018

Did you get approved for the once a month IVIG or weekly SubQ? I went with the SubQ and do it at home myself every 12 days. My doctor said it is easier to get approved. The medicine (Hyzentra) is $6,000 a month with no insurance. Fortunately I only pay $60. With the IV centers you are paying for the medicine and the facility and nurse every month. With SubQ you only pay for the supplies and medication.. Doing it every 12 days is less side effects than IVIG. A nurse comes to your house and trains you.

My insurance fought use, so we went to my husbands human resource at work and they got it approved. I am surprised that Medicare isn't covering more of the cost. Again, IVIG a lot more than SubQ.

Hope this helps.
Susan

Caroljsteller 04/20/2018

I had the same problem when I began with Medicare, but it was because I signed up for a Medicare Advantage Plan. A couple of years later, I changed to a. Medicare Supplement Plan F. It takes care of all charges, with no co-pays for anything. It’s amazing! But with a Medicare Supplement, you also have to pay for a Drug Plan. All in all, still a much better and much cheaper option than a Medicare Advantage Plan for those of us with CVID.

JenniferLeigh 04/21/2018

Use straight medicare. Its coinsurance not copayment and a not for profit hospital will help ypu with financial aide. Sub q through coram will also do a copay waiver

dianne11del 06/09/2018

I'd found a group online at primaryimmune.org they have a number of sections for help, one of them is for insurance, they may have more resources as well

Sassysnaps 06/17/2018

try my IG Source, They gave me an insurance assist card for $5,000, they might be able to help find other solutions as well.

Dianabelle 09/01/2018

I have a pharmacy called nufactor they take what my insurance company pays and they waived the copay because I couldn't afford them. Maybe you could ask your dr about this,good luck!

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