Primary Immune Tribune
August 2014
Medicare IVIG Demonstration Project is Open for Enrollment
Enrollment Period Ends 9/12

IDF is pleased to announce that enrollment for the Medicare IVIG Demonstration Project has begun! Patients who are covered under Medicare Fee-For-Service (traditional Medicare) and enrolled in Part B, have a diagnosis of primary immunodeficiency (PI), and are not currently covered under a home health episode of care, are eligible for enrollment.


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Two Important New Studies Further Validate Importance of Newborn Screening for SCID

Within the past three weeks, two landmark studies have been published in major medical journals that bolster the need for universal newborn screening for Severe Combined Immune Deficiency (SCID).

In July, a study in The New England Journal of Medicine examined transplant outcomes for SCID from 2000-2009. Researchers found that infants who received the transplants at the age of 3½ months or younger had a 94% five-year survival rate.

And this past week, the Journal of the American Medical Association published a retrospective study of more than 3 million infants screened for SCID in 10 states, plus the Navajo Area Indian Health Service, finding an incidence of one case of SCID per 58,000 births, nearly twice the previously estimated rate of one in 100,000.
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IDF 2015 National Conference in New Orleans
Save the Date! June 25-27, 2015



Help IDF Walk for Primary Immunodeficiency Get 1,000 Participants and 250 Teams by September 3

Help us get to 1,000 participants and 250 teams by September 3!  Currently, the IDF Walk for Primary Immunodeficiency has 800 participants and 219 teams. We need you to help make the walks successful! It is time to start or join a team!

In 2014, we will have walks in Boston, Chicago, Houston, Los Angeles, New York City and Philadelphia. If you don’t live near one of our official sites, you can join the virtual walk program, and support the walk from your hometown!

Register now to begin to earn incentive prizes, attain membership into the IDF Order of the Zebra, and meet other patients and family members while having a fun time.

Visit www.walkforPI.org for more information.


IDF Health Insurance Toolkit for Patients with PI
Get Help Choosing the Plan that is Right for You

It's that time of year...open enrollment is right around the corner. Make sure to download a copy of the IDF Health Insurance Toolkit so you are prepared to choose a plan.

The IDF Health Insurance Toolkit for Patients with Primary Immunodeficiency Diseases and their Families was created to provide you with information, resources and worksheets to help you choose the best possible health insurance options for you and your family.

The toolkit will be regularly updated with the most current information. For the most updated version, go to http://primaryimmune.org/services/patient-insurance-center/idf-health-insurance-toolkit to download a copy today!


New Advocacy Channel Video
Targets Restrictive Immunoglobulin Formularies

The latest installment on the IDF Advocacy Channel illustrates the harmful effects of restrictive Immunoglobulin formularies. Heather tells her story of coverage denial, career-ending illness, and her fight for the treatment that had proven successful for 12 years.

CLICK HERE to watch the new video.

Additionally, you can watch all of the IDF Advocacy Channel videos at http://primaryimmune.org/idf-advocacy-center/idf-advocacy-channel.


Walk for PI Kickoff Parties
Coming to a City Near You!

Want to learn more about the IDF Walk for Primary Immunodeficiency? Attend one of our kickoff parties! We had our first kickoff party on 8/21 in Chicago and it was a huge success!

August 28, 6-8 pm – Philadelphia, Fado Irish Pub, Philadelphia, PA
September 9, 6-8 pm – Los Angeles, BJ’s Restaurant & Brewhouse, Burbank, CA
September 10, 6:30-8:30 pm – Houston, Olive Garden, Humble, TX
September 17, 7-9:30 pm – New York City, NY by Gehry, 8 Spruce St., New York City, NY

Please RSVP to walk@primaryimmune.org if you are interested in attending!


Since You Asked
IDF Question and Answer

Q: What suggestions do you have for fatigue associated with CVID?

Q: I do my Ig therapy subcutaneously and have been really happy with that method, except sometimes I have itching at the site of insertion. What causes this and what can I do to avoid it?

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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