Confirmed victory

I have Common Variable Immune Deficiency (CVID) which is a primary immunodeficiency. A genetic disorder where I don’t retain vaccinations or have an immune system to fight off illness.  I take blood plasma/immunoglobulin, to keep my immune system “normal” or stable. Without blood plasma I can die as this is a life threatening incurable disease.

This blood plasma keeps my system at homeostasis. Without it I have arthritis, chronic intestinal disease, asthma, anaphylaxis, Epstein Barr, bronchitis, sinus infections, and more. It affects most organs. I am told we are 20x more likely to develop lymphoma.

BCBS of IL is requesting patients take a four month break from treatment to prove (again) that we are really sick. The cutoff for treatment is a blood test of 400igg. I have 429. I was already receiving treatment since 2009 but they want me to stop and see "how sick I get" in order to prove I still have this illness. The very definition of this illness is that its incurable and life threatening. If I had that magic 400 in 2009 I wouldnt be facing this issue, but I am, along with many others. This treatment is roughly $60,000-$80,000 a year.

The American Academy of Allergy Asthma and Immunology states this is medical malpractice in their literature. Who asks a diabetic to stop insulin to see if they can handle diabetes without it?

This is unconscionable. 

I need your help in getting this news out to the public and getting my blood plasma approved along with all the others that are facing this same issue.

Thank you.

Randi Schulman

Letter to
senior vp and chief medical officer Stephen Ondra
BCBSIL Karen Atwood
bcbsil Mary Ann Schultz
and 2 others
CEO, Blue Cross Blue Shield of Illinois Patricia Hemingway Hall
BCBSIL Paula Steiner
Approve My Blood Plasma/immunoglobulin (IVIG, SCIG) for Common Variable Immune Deficiency. I could die being retested to prove again that I have this illness. The definition of the diagnosis means its incurable so why must I prove it again? I was 29 points from not having to go through this retesting....I appreciate anything you can do for me.