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[Immune Deficiency Foundation] Report shows health benefits of Medicare IVIG Demonstration

This article is from the Immune Deficiency Foundation, originally published 11/28/2022. See the original article on the IDF website,


In 2012, Congress created a Medicare “demonstration” to pilot coverage of supplies and services, such as skilled nursing, needed for in-home intravenous immunoglobulin (IVIG) infusions. Since then, IDF has advocated for Congress to make such coverage a permanent Medicare benefit. A recently released Centers for Medicaid and Medicare Services (CMS) interim report bolsters the case for making the demonstration coverage permanent, documenting the health benefits to project enrollees.

Source: Updated Interim Report to Congress, Evaluation of the Medicare Patient Intravenous Immunoglobulin Demonstration Project, Many Medicare patients on IVIG receive less than the clinically recommended number of infusions per year (13-18, based on treatment every 3-4 weeks) due to barriers associated with receiving treatment in outpatient facilities (e.g., doctor’s offices, hospitals) or the uncovered costs of receiving treatments at home. Demonstration enrollees self-reported improved access to IVIG therapy and, based on claims data, averaged 2.26 more treatments annually compared to non-enrollees. As a result, demonstration enrollees were 12.5% less likely than non-enrollees to receive infection-related care, indicating better management of their immune deficiency and better overall health. Indications of better overall health agree with the findings of other studies that have compared in-home versus outpatient IVIG infusion.

For many, moving onto Medicare from private insurance, which typically covers supplies and services for in-home IVIG treatment at least somewhat, has meant a surprise return to outpatient facilities for treatment. Said Cynthia Barber, a 73-year-old demonstration project enrollee in Illinois who has been on IVIG for 40 years, “When I went on Medicare, I was very upset they didn't cover the home infusions.” Barber elaborated, “Receiving my treatments at home takes less time since the nurse is experienced. Also, I don't have a long drive and am not exposed to illnesses present in a hospital setting.”

“In this time of COVID-19, it gives me nightmares to think about going to another setting for my treatments, especially considering how risky it is for those with a PI,” said Gail Nelson, a project enrollee from Baton Rouge, LA. Both Barber and Nelson echoed the advantages of in-home IVIG listed by both demonstration enrollees and healthcare providers in the report: decreased transportation barriers, reduced exposure to infection, increased treatment compliance, and improved infusion monitoring.

Nearly 4,000 Medicare beneficiaries with primary immunodeficiency have enrolled in the demonstration to date. The report clearly shows, while the demonstration impacts a relatively small population, it has had a positive impact on those beneficiaries’ health and well-being. The report estimates an additional cost of about $8,000 per enrollee per year for Medicare Part A and B services compared to non-enrollees. However, the report does not factor in the long-term cost savings associated with better overall enrollee health. Long-time champions of the PI community, Representatives Kevin Brady (R-TX) and Doris Matsui (D-CA) are working on a provision to make the demonstration project coverage a permanent Medicare benefit. Representative Brady retires at the end of this Congress and there is an opportunity for the bill’s passage to augment his legacy. As Congress and the Congressional Budget Office (CBO) contemplate the costs and benefits of finally making in-home IVIG permanently accessible to Medicare beneficiaries, they should strongly consider both the benefit to the PI community and the cost savings resulting from improved health outcomes.

Sign up for IDF's Action Alerts on their website. They will let you know when Representatives Brady and Matsui release their language for permanent Medicare coverage of supplies and services for in-home IVIG. The alert will allow you to take direct action and let your legislators know how important this issue is to the PI community.


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