Primary Immune Tribune
January 2014
IDF Approved for PCORI Funding for “PI CONNECT,” a Data Network to Accelerate Understanding & Treatment of PI
A team led by the Immune Deficiency Foundation (IDF) has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered National Clinical Research Network. IDF’s “PI CONNECT” data network is one of 29 that were approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.

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IDF Friends Being Migrated to Newly Designed Site Next Week
Site Will Return New and Improved!

IDF Friends, www.idffriends.org, our social network and discussion forum designed exclusively for patients and family members who live with primary immunodeficiency (PI), will be migrated to a newly designed website from January 27-29, 2014. Users will not be able to access the site during that time, and we apologize for this unavoidable interruption. But don’t worry—IDF Friends will return better than ever!

The new IDF Friends will be mobile-responsive, which means it will look great and be ready to use on your tablet and smartphone. The fresh layout and style make it easy to navigate. Most importantly, the new site will be 100% private and visible only to members. No one may access any site content without creating an account.


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IDF Scholarships Now Available
Deadline March 31, 2014

IDF is currently accepting applications for two separate scholarships for students living with primary immunodeficiency disease. The Eric Marder Scholarship Program of IDF is open to undergraduate students living with a primary immunodeficiency, and the Varun Bhaskaran Scholarship Program of IDF is available to undergraduate or graduate students living with Wiskott-Aldrich Syndrome (WAS).

The deadline for scholarship applications is March 31, 2014. Scholarship awards will be announced in June 2014.

CLICK HERE for more information.


Has BCBS of IL Requested You Take a Break from Treatment Even Though You Had Proper Tests?

The Immune Deficiency Foundation (IDF) has become aware that Blue Cross and Blue Shield (BCBS) of IL is requesting a number of patients take a break from immunoglobulin replacement therapy (IVIG) to prove that they truly have a primary immunodeficiency. This is a major concern as many of these patients have had proper testing. IDF is discussing this matter with immunologists in Illinois to determine a strategy to reach out to the BCBS of IL medical director about their guidelines.

Guidelines for IVIG were developed by the American Academy of Allergy, Asthma & Immunology (AAAAI) Primary Immunodeficiency Diseases (PID) Committee. These guidelines were created for physicians and for those responsible for coverage determinations to ensure the safe, effective and appropriate use of IVIG. According to AAAAI guidelines, “IVIG is indicated as continuous replacement therapy for primary immunodeficiency. Treatment should not be interrupted once a definitive diagnosis has been established.” Click here for more information about the AAAAI IVIG guidelines.

BCBS of IL is a part of Health Care Service Corporation (HCSC), the largest customer-owned health insurance company in the U.S. HCSC also operates BCBS subsidiaries in Montana, New Mexico, Oklahoma and Texas, so this issue may be more widespread than just Illinois.

In the meantime, we want to hear from anyone having an issue. If you or someone you know has been asked to stop your treatment for a primary immunodeficiency by BCBS of IL, or any health insurance company, even though the patient has had the proper testing, please contact IDF immediately. Call 800-296-4433 or submit our online form: www.primaryimmune.org/services/ask-idf/.


IDF Walk for Primary Immunodeficiency Launches Facebook Page

Visit www.facebook.com/walkforPI

Thank you for helping to make the IDF Walk for Primary Immunodeficiency an amazing inaugural year. We had 1,300 participants who combined with our sponsors raised a grand total of $430,000! We are so grateful for your efforts to exceed our goal and raise funds to help improve the lives of those living with primary immunodeficiency.

Our new, official Walk Facebook page already has over 500 likes! Like our page yourself so you can keep up with all the activities surrounding IDF Walk for Primary Immunodeficiency. We will begin to announce 2014 walk sites and dates in the next couple of weeks on our page and by following us you will be the first to know!

Click here to like our page now!


Since You Asked
IDF Question and Answer

Q:  My son is 25 and is on my insurance plan. However, I cannot use my HSA for reimbursement of his expenses, why?

 

Click "FULL STORY" to see the answer to this question.


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