The primary immunodeficiency (PI) patient community has unique needs with which most policymakers are not familiar. To help solve some of the problems that our community faces, IDF maintains a full-scale advocacy program focused on national and state healthcare issues.
Although the specific issues may change, the IDF advocacy program focuses on one main thing – access to quality care. This includes access to all treatments, all sites of care and specialists. Please look at the links below to learn more about our Advocacy Campaigns and how you can become involved and join with us to make your voice heard!
IDF will periodically post status reports, links to other websites, and explanations of various provisions of the Affordable Care Act as well as implementation reports. Click here for more information
IDF advocates that patients have access to safe and effective biologic and biosimilar medicines. Biologic medicines are made from living organisms and are far more complex than traditional chemical drugs. Biosimilars are medicines that are highly similar, but not identical to biological medicines. Because of the uniqueness and complexity of biologics, biosimilars are not generic copies of biologic medicines. The FDA has the authority to approve biosimilars and there are many key decisions that are unknown that can impact patient safety. Click here for more information
Get the facts about the IDF SCID Newborn Screening Campaign using the Newborn Screening Toolkit to become a successful advocate. Our goal is to have all states screen newborns for Severe Combined Immune Deficiency (SCID). Click here for more information.
In January 2013, the Medicare IVIG Access Act (HR 1845) was signed into law by President Barack Obama, creating a three-year demonstration project for Medicare Part B recipients with a PI. It will study the impact of paying for intravenous immunoglobulin (IVIG) home infusions. Click here for more information.
IDF advocates against harmful insurance preferred product formularies and policies for immunoglobulin (Ig) replacement therapy. IDF believes that physicians, in consultation with their patients, should make decisions about changes in IVIG treatment as they are in the best position to understand the specific medical history and unique needs of each patient. Please contact IDF if your insurance plan is instituting a preferred product formulary for Ig therapy. Click here for more information.
IDF routinely monitors legislation and public policy issues around the country that have an impact on patients with PI. Below are some examples of positions IDF has taken to support the PI community.