This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
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Download the debut episode of the new podcast from the Immune Deficiency Foundation (IDF), Primary Immunodeficiency Q&A, now available on iTunes.
Each episode will feature a special guest, from physicians and nurses to life management experts and patients with primary immunodeficiency diseases (PI). They will provide listeners with helpful information about living with PI, a group of more than 350 rare, chronic diseases affecting more than 250,000 in the U.S.
How It’s Affecting You
If you receive co-pay assistance from the manufacturer of your immunoglobulin (Ig) replacement therapy or other necessary treatments, and those payments no longer count towards your deductible or out-of-pocket maximum, we have some important information for you.
Kim DiGangi experienced infections her entire life. She spent many years on antibiotics but never connected the dots. When Kim was finally told she may have a primary immunodeficiency disease (PI), she was in complete denial. She sought out second, third, and fourth opinions. Finally, she found a doctor that did not feel she had a PI and sided with him. Several years later, the complications continued, and she resigned herself to her diagnosis of Common Variable Immune Deficiency (CVID).
Have you been hearing from your specialty pharmacy that they may not be able to cover your subcutaneous immunoglobulin replacement therapy (SCIG) as a Part B Medicare benefit?
The IDF Advocacy Workshop 2018 will take place in historic Annapolis, MD on Saturday, September 29, 2018. This day will give members of the primary immunodeficiency (PI) community a chance to become informed, skilled advocates.
Your Input Creates a Better Understanding of Immunoglobulin (Ig) Replacement Therapy
The IDF 2018 National Ig Treatment Experiences and Preferences Survey will be released in September 2018 and will be mailed to randomly selected households in the IDF community. This survey specifically focuses on individuals’ experience with intravenous immunoglobulin replacement therapy (IVIG), subcutaneous immunoglobulin replacement therapy (SCIG), and intramuscular immunoglobulin (IM) replacement therapy.
These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
I spent the first 27 years of my life hiding my invisible illness.
I was diagnosed with Hyper IgE/Job Syndrome when I was ten years old. That diagnosis wasn’t easy to come by; my mom had taken me to see countless doctors, specialists, and healers. When an immunologist finally gave us a diagnosis, we learned the name of the disease but not much else. This immune deficiency is incredibly rare, and nobody knew what to do with me.