Primary Immune Tribune
September 2014
IDF Issues Recommendations Regarding the Outbreak of Enterovirus D-68

The media has recently reported several accounts of outbreaks of lung infections caused by a virus called enterovirus (EV) D-68. The initial cases were found primarily in the center of the country and it is now spreading more widely. Enteroviruses are a large group of similar viruses that are typically the cause of respiratory symptoms or bad colds during the summer months, although they can rarely cause more severe systemic illness. EV outbreaks are common nearly every year and we all have been exposed and probably infected once or more times. The Centers for Disease Control (CDC) does not have evidence at this time to indicate that this outbreak is unusually severe compared with previous years and there is no evidence yet to indicate that individuals with primary immunodeficiency (PI) are experiencing more severe illness than in previous EV outbreaks.


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The New IDF ePHR Is Live!
Visit www.idfePHR.org Today

The IDF ePHR is a completely new system, and it transforms how patients with primary immunodeficiency diseases (PI) manage their health using innovative technology and easy-to-use features.

The new IDF ePHR improves on all the functionality found in the original IDF eHealthRecord, adding easy-to-use features as well as convenient tools to help patients live healthier lives. You can access your IDF ePHR from your computer, or download the new app to access your information anywhere from your smartphone or tablet.


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IDF Walk for PI Update

The IDF Walk for Primary Immunodeficiency has already raised over $142,000 to support the mission of IDF! This year is on track to be bigger and better than our first. This year's first walk in Philadelphia was a success with walkers coming together to celebrate the start of the season! Be on the lookout for pictures and updates soon. The next walk will be in Boston on October 5, followed by Los Angeles on October 19, New York City on October 26, Greater Chicago on October 26 and Houston on November 9.


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Enrollment Deadline Extended for IVIG Demo Project

Enrollment for the Medicare IVIG Demonstration Project has been extended! Because the number of eligible applicants did not exceed the statutory limits, effective September 15, 2014, new applications for participation in the Medicare IVIG Demonstration Project will be accepted on a rolling basis until the project reaches the statutory limit on funding and/or enrollment. For complete details and how to enroll, go to www.medicarenhic.com.



Since You Asked
IDF Question and Answer

Q: I have Medicare and would like to be able to do my infusions at home since I donít have reliable transportation. Why is my doctor telling me they will not cover this?

Q: I have been having severe joint pain for a few years and my labs continue to come back normal. I'm on 50 g IVIG every three weeks. Is there a statement or notes supporting inaccurate labs because of IVIG antibodies? Iím just doing my own research to see if that is throwing off my labs for Rheumatoid Arthritis, Lupus, Sjogrens, or anything else that could cause this.

Click FULL STORY to see the answer to these questions.


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