Just diagnosed

[june365]

Hello, After 5 years of going to doctor after doctor, having test after test, and feeling worse and worse, I was FINALLY diagnosed with CVID. I was diagnosed by 2 different specialists, each at at presteigous hospital in the Los Angeles area. I have been denied Infusion treatment twice by my insurance company. Insurance says I'm not sick enough. Luckily, I haven't suffered from chronic infections all of my life. I guess my weight loss, muscle atrophy and constant joint pain AND my low Igg numbers don't count. I'm a 45 year old male trying to maintain my normal life.
Any advice with the insurance company or alternative treatments. Thank you.

[hlh]

How low are your IgG? Have you had any infections?

What does your doc say? Is s/he an Immunologist experienced with CVID who can argue for you?

[june365]

Thank you for answering.
Gamma Globulins. 0.5 Range 0.6-1.3
Gamma Globulins%. 6.9 8.6-16
IGG. 680. 726-1512mg/dl

I haven't suffered from chronic infections but I've been in constant body pain; weight lost; some muscle atrophy. Over the years MS,ALS, CFS etc.have been ruled out.
My doctors are hematologists/oncologists. On my last visit to my internist, my b12 level was 2000+, so fearing myeloproliferative disorders she sent me to an onc/hem.
He diagnosed the CVID. Then, a second opinion with an onc/hem confirmed. Hopefully , another appeal will go through.
Thank you.

[mothergoose]

I had to get script from an immunologist, it then it went to a board for approval, basically they had to agree I was sick enough for approval.

I did not pass vaccine titter tests, I also had infection 1-2 per month and some serious infections, sepsis, septic arthritis.

I believe every where is a bit different and each insurance is a bit different

[frankbymonster]

I remember my time when I was diagnosed with illnessee.com/hidradenitis-groin-pictures/ and I couldn't believe that. I thought my life is ruined but with support from my friends and my family I handle it and keep enjoying life.

[tfg3]

Insurance, we all need them. Sadly health insurance coverage is so fluid in this present time.
I believe there are criteria to meet in order to have your insurance pay for IVIG or IVIG treatments.
see a board certified immunologist, MD
he/she will have to have your IGG levels and sub class levels drawn
also you might need to have a vaccine challenge to see if you build up a titer, if you don't you can usually qualify for the medication
log your history of infections and the type of infections
MD usually has to do a PA/prior authorization for your medication articulating the above
I hope this helps.

[marksmom]

I'm with tfg3 - you should see an immunologist pronto. Heme/onc is great but they are not immunologists. Also, I would recommend reaching out to the Immune Deficiency Foundation - primaryimmune.org. They have a department that helps with insurance issues with IVIG and they will likely have suggestions and advice for you.

I hope things go well for you and you get the treatment you need. Insurance is scary.
Rachel
Mom to Mark, 15, CVID