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CSL Behring has decided to discontinue the production of their Carimune NF intravenous immunoglobulin in the latter half of 2018.
Leave a Legacy for the PI Community: IDF Legacy Society
One of the most powerful ways you can help future generations affected by primary immunodeficiency diseases (PI) is to name IDF in your will. By doing so, you become a lasting part of IDF, the national patient organization dedicated to improving the diagnosis, treatment and quality of life of people with PI.
Ensuring Affordable Access to Care
As a rare disease community, those living with PI may find it difficult to get the lifesaving treatment they need through affordable rates and flat fee only co-pays. IDF works on the issues of co-pay and affordability on both a Federal and State level, but often the State level is where the issue gets met head-on and why IDF leads the charge for our community in states like Iowa.
It’s a simple question, yet it’s one that holds so much meaning: Why do you walk for PI? We like to ask the PI community this occasionally to hear from our community and understand what the walks mean to them. The answers are always inspiring and motivating, and help us remember just how important IDF Walk for PI is to those living with PI.
Why do you walk for PI?
These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
The incredible story of David Vetter’s life was recently featured in the BBC’s Witness program, including a touching interview with his mother and IDF Board of Trustees member Carol Ann Demaret.
In 1971, David, affectionately known as the boy in the bubble, was born with Severe Combined Immune Deficiency (SCID), one of the most severe types of primary immunodeficiency disease (PI).
“David’s gallant life and death took science on a path that has improved the quality of life now for SCID babies and children born with PI,” said Carol Ann.
At approximately 5 a.m. ET on Friday, February 9, the U.S. House of Representatives passed the nation’s spending Continuing Resolution. The President is expected to sign the two-year spending deal. In that spending deal is language that will fix the Medicare reimbursement problem for the administration of subcutaneous immunoglobulin replacement therapy (SCIG).
UPDATE - SCID in Indiana 2/14/18
HB 1017, which adds which spinal muscular atrophy and severe combined immunodeficiency to the list of disorders in the newborn screening requirements for Indiana, passed the House. It has now crossed over to the senate and has been referred to the Senate Committee on Health and Provider Services. IDF will be monitoring its progress and advocating in support of its passage to help ensure funding is allocated to implement SCID screening in the coming year.
Renew Your Volunteer Position before February 9
Looking back on 2017, IDF is thankful for the hard work and dedication from all of our volunteers. You are the heart and soul of many of our programs. From supporting IDF staff at special events, to outreach and raising awareness for primary immunodeficiency diseases (PI), your willingness to devote your time and skills helps our community.
With a growing demand for services and programs from IDF, we are counting on our volunteers to renew for the 2018 year in order to reach those who need us most.