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 have shared, the Medicare IVIG Access Demonstration (demo) allowing Medicare beneficiaries with primary immunodeficiency (PI) to receive intravenous immunoglobulin replacement therapy (IVIG) in the home will end on Dec. 31, 2020 unless it is renewed by act of Congress.
In 2017, IDF was successful in ensuring congressional renewal of the demo that began serving patients in 2014, and is now working diligently to get the program renewed again. Presently, there is legislation, H.R. 7839, introduced in the House of Representatives which, when passed, will (1) extend the demo through 2022; (2) expand the enrollment cap; and (3) require Medicare to provide an evaluation of the first 6 years of the program. The program’s evaluation should support the need for a permanent benefit. With the support and advocacy of the PI community, IDF is striving to get this legislation incorporated into the package of bills that must pass by the end of the year.
Those in the PI community can contribute to IDF’s efforts to extend the demo by responding to the most recent IDF Action Alert to contact your elected representatives about this vital legislation. Additionally, signing up for Action Alerts will allow you to contribute to the ongoing advocacy efforts around this issue.
While IDF is optimistic that this legislation will pass, it is important that individuals in the PI community evaluate their personal treatment plan and prepare for the possibility of a lapse in the coverage provided by the demo project. We recommend investigating your Ig therapy options by consulting with your physician, specialty pharmacy, or infusion provider. Additionally, we recommend that demo enrollees review this Noridian article to help when considering future treatment possibilities.
It is essential that Medicare beneficiaries, who are currently enrolled in the demo, make a plan now to ensure that they continue to have access to Ig therapy in case H.R. 7839 does not pass before the end of the year. Consult with your treating physician to make that plan and consider the following options:
Please know that IDF is working tirelessly to renew the demo project and extend benefits for at-home IVIG for those in the PI community. We ask our community to remain on the lookout for ways you can help IDF with this mission, and to ensure you have a plan for your treatment in the months to come.
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