Primary Immune Tribune
December 2013
Remember IDF in Your Annual Giving
Thousands of people living with primary immunodeficiency turn to IDF for education, resources and support. A gift to IDF can help us to continue to provide these vital programs and services to individuals, families and healthcare providers. We ask that you consider making a gift to IDF this year. Make an online donation at https://primaryimmune.org/give, or mail your gift to the Immune Deficiency Foundation at IDF, 40 West Chesapeake Avenue, Suite 308, Towson, MD 21204. For more information about ways to give to IDF, contact us at development@primaryimmune.org or 800-296-4433.


Update: Medicare IVIG Demonstration Project Implementation Delayed
The Medicare IVIG Access Act that was signed into law in January 2013 instructed the Centers for Medicare and Medicaid Services (CMS) to create a three-year demonstration project that would reimburse for the items and services needed to do home infusions of IVIG for patients on Medicare. Prior to this demonstration project, the items and services were not reimbursed by Medicare and only the cost of the immunoglobulin itself was paid for by Medicare. As the law was written, and as IDF has reported, the demonstration project was meant to begin in January 2014.

CMS has announced that the demonstration project will not begin in January as anticipated, as there are numerous system changes and approval processes still needed to implement the project. CMS plans to start taking applications later in 2014 and begin delivering services after an enrollment period of about one month.

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Coming Soon: 4th National Treatment Survey

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

The only national estimates of the experiences of patients with PI are from the three previous 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 Ig for patients with PI
• Describe in detail the health status of patients with PI
• Provide detailed data on patient reactions to various Ig treatment regimens
• Identify problems in access to treatment in this population

There will be a sample of patients contacted. We need to make sure we can get in touch with you because your input and participation is vital. So we ask all patients to provide IDF with your current contact information, including mailing address and e-mail address by visiting http://primaryimmune.org/get-connected/. It is important that we have your updated contact information because the survey will be mailed to a sample of patients this December. If you have any questions regarding this upcoming study, please contact IDF's Director of Survey Research, at 800-296-4433.


Deadline Approaching for Visiting Professor Requests
Submit Requests for IDF & USIDNET LeBien Visiting Professor Program TODAY

IDF invites teaching hospitals to take advantage of a free educational program—The IDF & USIDNET LeBien Visiting Professor Program. This popular program provides teaching hospitals throughout the U.S. with a leading clinical immunologist to conduct Grand Rounds and present at other educational activities, such as bedside rounds, house staff presentations and medical resident conferences. The ultimate goal of this program is to help improve the diagnosis and treatment of primary immunodeficiency diseases.

Requests for The IDF & USIDNET LeBien Visiting Professor Program for 2014 are now being accepted. Simply write a brief (one page) Letter of Request stating your reason to participate in the program and how your students would benefit. Please include a tentative list of teaching and clinical activities. Submit this information to IDFVisitingProfessor@primaryimmune.org by January 17, 2014. Call 800-296-4433 should you have any questions.


Do you follow @IDFcommunity?
Follow IDF on Facebook, Twitter & Instagram to find out the latest IDF news and stay connected with the community. You can also join IDF’s social networks dedicated to the primary immunodeficiency community: IDF Friends & IDF Common Ground for teens. Both social networks will be redesigned in 2014 with enhanced features, making them mobile responsive and completely private. You will be able to easily connect with others going through similar experiences on your smartphone or tablet. Make sure you follow IDF on Facebook, Twitter & Instagram, and stay tuned for new IDF Friends & IDF Common Ground for teens!


Happy Holidays from IDF

CLICK HERE to view our holiday card. Thank you for a wonderful year!


Since You Asked
IDF Question and Answer

Q: I am trying to choose a plan through my state's marketplace, but I am having a very hard time getting information on how these plans will cover my immunoglobulin replacement therapy. What can I do?

Q: I have Common Variable Immune Deficiency (CVID) and am currently breastfeeding my newborn. Since I have an immune deficiency, should I be taking some type of supplement to ensure my baby has all necessary nutrients?

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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