Primary Immune Tribune
October 2013
Walk for Primary Immunodeficiency
Off to a Great Start!

Thank you to all who participated in our inaugural Walk for Primary Immunodeficiency - Greater Philadelphia on Sunday, September 29, 2013! It was an absolutely beautiful day, we more than doubled our original fundraising goal, and over 500 people walked with us.

The success of the Philadelphia Walk provided excellent momentum as we move onward to L.A., Chicago, and our Nationwide Virtual Walk! Visit for information on how you can get involved, and click on the links below to view a specific event.

The remaining dates for 2013 are as follows:

October 19, 2013Greater Los Angeles Walk – Long Beach, CA
October 27, 2013Greater Chicago Walk – Wheaton, IL
Now-December 2013Nationwide Virtual Walk

The New Health Insurance Marketplaces

If you want to know more about the new health insurance marketplaces–one of the major provisions of the Affordable Care Act (ACA), IDF has compiled an overview of the marketplaces and plans, as well as what a patient with PI should consider.

As of October 1, 2013, people who are not covered by a health plan can sign up for a guaranteed issued (i.e., cannot be denied coverage due to pre-existing conditions) qualified health plan through these health marketplaces in each state. Some of these marketplaces, sometimes called “exchanges,” are run by the state and others are run by the federal government, if a state has chosen not to run its marketplace. The open enrollment period ends March 31, 2014. If you do not enroll before March 31, you cannot enroll unless you have a “qualifying life event” such as moving or birth of a child, or until the next open enrollment.


IDF Teen Escape Weekend in Needham, MA Nov. 9-10
Escape with IDF!
IDF Teen ESCAPE  – Needham, MA
IDF invites all preteens and teens, ages 11 to 18, diagnosed with a primary immunodeficiency (PI) to an IDF Teen Escape! This fun, free event is scheduled on November 9-10, 2013 at the Sheraton Needham Hotel in Needham, MA. To register, e-mail  
Activities are designed to promote friendship, build leadership skills and develop coping abilities. Medical and life skills experts present valuable age-appropriate information to the teens as well as encourage them to discuss what it means to live with PI with other participating teens. Other sessions focus on transition and advocacy issues. There will be separate parent sessions that offer opportunities for parents to network and share ideas.

IDF Teen Escape
November 9 (9:00 a.m.) – November 10, 2013 (12:15 p.m.)
Sheraton Needham Hotel
100 Cabot St.
Needham, MA 02494

Click here to register now!

“eHealth Yourself” Challenge!
Help Us Get 100 New IDF eHealthRecord Users!

The IDF eHealthRecord,, recently underwent a redesign to make the online personal health record designed specifically for the primary immunodeficiency community more user-friendly. IDF is challenging the primary immunodeficiency community to “eHealth Yourself” and create an account with the IDF eHealthRecord to help us get 100 new users! You can enter to win a $100 American Express Gift Card.


4th National Treatment Survey: 2013
Be a Part of It!

To obtain a current picture of patients with antibody deficiencies who require Ig replacement therapy and their experiences in the U.S., IDF is conducting the fourth National Treatment Experiences and Preferences Survey of Patients with Primary Immunodeficiency Diseases (PI) this winter.

The only national estimates of the experiences of patients with PI are from the three IDF National Treatment Surveys conducted in 1997, 2003 and again in 2008. It is time to do it again!

This survey will:
• Demonstrate the importance of early diagnosis and proper treatment with immunoglobulin for patients with PI
• Describe in detail the health status of patients with PI
• Provide detailed data on patient reactions to various immunoglobulin treatment regimens
• Identify problems in access to treatment in this population

Your input and participation in this survey is vital and we need to make sure we can get in touch with you. Please provide IDF with your current e-mail address and contact information, by CLICKING HERE to fill out the contact/information update form. Look for the survey in your mailbox this December, and if you have any questions regarding this upcoming study, please contact IDF’s Director of Survey Research at 800.296.4433.

Since You Asked
IDF Question and Answer

Q: My total IgG level is 458 with the deficiencies being in Subclasses 1and 2. My insurance company says the total must be below 400 to receive immunoglobulin replacement therapy? What is the mean level for a 64 year old woman?

Q: I need health insurance. The marketplaces have officially opened; however, I feel completely unprepared. I would like to do a little research and make an informed decision, but I am not sure if I have enough time. How long do I have to enroll?

Click “FULL STORY” to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols

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