The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
As we begin the new year, the Immune Deficiency Foundation (IDF) is happy to confirm that with the enactment of the Consolidated Appropriations Act on December 28, 2020, individuals enrolled in the Medicare IVIG Demonstration can continue to receive their immunoglobulin (Ig) therapy at home without disruption through 2023. The Medicare IVIG demonstration was set to expire at the end of 2020. Without the passage of legislation, the Medicare IVIG would have left enrollees without the ability to receive their lifesaving treatment at home.
The enacted legislation included provisions extending the demonstration for three years and expanding the cap on enrollment from 4000 to 6500 individuals. This will allow additional Medicare beneficiaries with primary immunodeficiency (PI) who require home IVIG to enroll in the project. It also included a provision requiring that the Centers for Medicare & Medicaid Services (CMS) report their findings on the effectiveness of the project by the end of 2022. This will help to avoid a potential gap in coverage by giving time for Congress to analyze the findings and pass legislation for a permanent benefit before the extension expires in 2023.
We are grateful to Representatives Brady and Matsui, who ensured this bill passed and have championed legislation to support a Medicare IVIG demonstration since before the initial bill passed in 2012. We appreciate all those in the PI community who have helped with this effort through participating in IDF Advocacy Day, responding to action alerts, and engaging in legislative calls. We couldn’t have reached this policy victory without the help of community members like you, and we hope that you will join IDF in future efforts to make this benefit permanent for individuals with PI.
The IDF advocacy team will continue to work on ensuring that a permanent benefit is created to cover the medication, services, and supplies required for home IVIG therapy. As has been highlighted during the pandemic, it is essential that individuals who are immunocompromised, especially those with primary immunodeficiencies, have an option to receive infusions at home.
Thank you again for your dedication to advocating for the community!
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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