Primary Immune Tribune
January 2016
IDF Medical Advisory Committee Issues Landmark Resolution
Explains Dangers of Arbitrary Insurer Requirements for Previously Diagnosed Patients with Primary Immunodeficiency

The Medical Advisory Committee of the Immune Deficiency Foundation (IDF) has issued a landmark resolution explaining the danger posed by the arbitrary insurer requirement for a diagnostic vaccine challenge for all previously diagnosed individuals with a specific type of primary immunodeficiency disease, Common Variable Immune Deficiency (CVID). CVID is a disorder in which affected individuals are unable to produce protective levels of antibodies, requiring life-long immunoglobulin (Ig) replacement therapy. Recently, dangerous and unnecessary guidelines regarding this life-saving therapy have been implemented by some insurers, and they are not consistent with the standard of care for people with CVID, causing extreme concern and prompting this critical resolution.

There are occasionally situations where immunologists may find it advisable to stop Ig replacement to perform a vaccine challenge, but these decisions must be made by qualified medical professionals based on the clinical history of the patient, not on an arbitrary guideline by an insurer.

IDF has heard from many individuals with CVID who have been forced to go without their life-saving Ig therapy for five to eight months to meet this vaccine requirement mandated by insurers, risking serious or potentially fatal infection that would normally have been prevented by their Ig therapy.

Click here to read the complete IDF Medical Advisory Committee Resolution.



Facing High Out-of-pocket Healthcare Costs?
Tell IDF and Let Us Advocate for You

The New Year isn’t always happy for those having to pay exorbitant out-of-pocket healthcare costs. Some find relief from government set out-of-pocket limits; however, many who are prescribed high-priced specialty medications are required to pay their full out-of-pocket maximum ($6,850 for an individual and $13,700 for a family) in the first couple months of the year. This causes severe financial heartache and forces some families to choose between paying their mortgage and filling their medication.

How are the front loading of out-of-pocket costs affecting your life? Tell us! IDF wants to hear your story, so we can advocate on your behalf and ensure the primary immunodeficiency community has access to affordable, adequate healthcare.

You can turn a negative into a positive by speaking out and sharing your experiences. Contact IDF to learn more about how your story can help: idfadvocacy@primaryimmune.org.



Check Out Our New IDF Walk for PI Wrap Up Video
You Helped Us Raise $1 Million This Year

In 2015, IDF Walk for Primary Immunodeficiency raised $1 million, and we made this video to wrap up such a successful year!

Click here to view our 2015 thank you video.

Over 3,100 walkers participated in 11 cities to raise funds to support the mission of the Immune Deficiency Foundation (IDF). Since our first walk in 2013, IDF Walk for PI has raised over $2 million thanks to our generous participants and sponsors.

We are already looking forward to our 2016 walks in Atlanta, Boston, Charlotte, Chicago, Cleveland, Fort Lauderdale, Houston, Los Angeles, Minneapolis, New York City, Philadelphia, and St. Louis. Registration coming soon. Learn more about IDF Walk for PI: www.walkforPI.org.


IDF Retreats 2016 – Registration Begins March 2016
Join Us for an Extraordinary Weekend!!

Registration for IDF Retreats 2016 is around the corner, and we’re busy planning wonderful weekend gatherings for you. We encourage patients, parents, siblings, partners and children to join us for learning, sharing and fun!

Boston, MA
June 17-19, 2016
Boston Marriott Newton

Salt Lake City, UT
August 19-21, 2016
Sheraton Salt Lake City Hotel

Mark your calendar, and stay tuned for registration in March 2016.



Since You Asked
IDF Question & Answer

Question: My insurance company has denied treatment as they say proper protocol was not done for the pneumovax 23 testing. I had the vaccine last year and now blood tests have revealed inadequate levels for 7 of the 23. Why does this not suffice for medical necessity? Why do I have to test again?

Question: Should there be concern for those of us who infuse immunoglobulin now that the FDA has updated the blood deferral recommendations for men who have sex with men (MSM)?

Click FULL STORY to see the answer to these questions.


[FULL STORY]



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