Primary Immune Tribune
December 2016
Happy Holidays from the Immune Deficiency Foundation!
Enjoy Our Holiday Greeting

Season’s greetings and best wishes for the New Year from IDF! 

Click here to view our Holiday Greeting.


You Can Help Change Lives
Turn Your Support into Action

As a reader of the Primary Immune Tribune, you followed us throughout 2016 as we talked about the triumphs, challenges and people that drive IDF forward. 

Did you know that in 2016 we had more than 7,000 information requests from individuals and families living with primary immunodeficiency diseases (PI), there are now 42 states screening for Severe Combined Immune Deficiency (SCID), and nearly 7,500 people attended our educational meetings across the country? In addition, IDF received another 4-star rating from Charity Navigator, and made our first research grant award from funds raised through IDF Walk for PI. And this is just a snapshot of the impact we’ve made in 2016. 

As the holiday season is upon us, IDF is proud of what we’ve been able to accomplish in 2016 and thankful you have regularly read about the IDF community in this monthly e-newsletter. Now, we ask that you turn your interest and support into action and make a donation to IDF before December 31, 2016

Click here to donate to IDF today.

If you have already made your gift, we appreciate your generosity. Gifts are tax deductible. Thank you for your commitment to help people living with PI.


Save the Date: IDF 2017 National Conference

Anaheim Marriott
Registration begins February 2017


Patient Notification System
Ensure You Receive Product Withdrawal & Recall Alerts

The Patient Notification System is a free, confidential, 24-hour communication system providing information on withdrawals and recalls of plasma-derived therapies, such as immunoglobulin (Ig) therapy, the life-saving treatment many people with primary immunodeficiency diseases (PI) receive.

You can go online to www.PatientNotificationSystem.org or call a 24-hour, toll-free number 888-UPDATE-U (888-873-2838) for current information on therapy recalls or withdrawals. To maximize the usefulness of the system, it is important for you to keep accurate infusion logs and record the lot number, therapy name, and manufacturer for all therapies used. (IDF ePHR, the online personal health record for people with PI, is a great way to easily keep track of your product information.)

There is no fee to participate in the Patient Notification System. The system was created to provide consumers with a single, convenient, and confidential source for up-to-date withdrawal and recall information. Led by the Plasma Protein Therapeutics Association (PPTA), the Patient Notification System was developed by the manufacturers of plasma protein therapies with direct input from consumers.

To register for the Patient Notification System, click here.


You Helped Raise Over $1 Million – Wow!
IDF Walk for Primary Immunodeficiency 2016

For the second year in a row, with your help, IDF Walk for Primary Immunodeficiency has raised over $1 million, and the numbers are still climbing!

We want to recognize the incredible efforts of our top teams (click FULL STORY to see the list) and our IDF Order of the Zebra members (individuals who raised $1,000 or more this year). Because of your dedication to create a better future for patients and families living with PI, you have made an impact on the lives of thousands for generations to come.

Click FULL STORY to read more.


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IDF Health Insurance Surveys
What We’re Learning

In 2014 and 2015, IDF conducted the first national health insurance surveys of people with PI. Over 1,600 members of the IDF community participated, and by doing so helped IDF gain greater insight into health insurance coverage and satisfaction among people with PI. These findings have also been used in IDF advocacy efforts on behalf of the PI community.

According to the results from both the 2014 and 2015 health insurance surveys, 99% of patients are insured and satisfied with their coverage and quality of healthcare they receive (over 80% across the 2014 and 2015 health insurance surveys). However, serious health insurance issues, such as affordability and access to specialists, still affect some members in our community. For example, in 2014, 21% reported problems affording visits to healthcare specialists; this increased to 22% in 2015.

To learn more about the 2014 results, you can now download the summary report, Health Insurance & Primary Immunodeficiency Diseases: A 2014 Immune Deficiency Foundation Survey, which covers the following topics:

  • Insurance Coverage
  • Costs of Health Insurance
  • Perception of Quality of Care
  • Immunoglobulin (Ig) Replacement Therapy and Health Insurance Policies

Click here to download the 2014 summary report.

We want to continue to learn about the experiences related to health insurance people with PI face. Recently, IDF launched the 2016 IDF Health Insurance Survey, and it will remain open until mid-January 2017. If you received an email invitation for this survey and have not yet completed it, please participate today. As a rare disease community, every voice counts.

If you have any questions, please contact IDF at: idfresearch@primaryimmune.org or 800-296-4433. Thank you in advance for participating!


Since You Asked
Question & Answer

Question: I have Common Variable Immune Deficiency (CVID). Can I take Tamiflu if I end up getting the flu?

Question: I will be retiring in early February and am trying to understand Medicare coverage. I have CVID and do subcutaneous immunoglobulin (SCIG) therapy. Will this be covered and what is my best option?

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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