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.
- senior vp and chief medical officer
Mary Ann Schultz
- CEO, Blue Cross Blue Shield of Illinois
Patricia Hemingway Hall
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.
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