May 2021

The Immune Deficiency Foundation Secures Extension, Expansion of Medicare Program

United States - Maryland

The Immune Deficiency Foundation (IDF), a Towson, Maryland-based advocacy, education and research organization that represents patients impacted by primary immunodeficiency diseases (PI), worked with Congress to secure an extension and expansion of an important Medicare demonstration program in late 2020. The extension and expansion kept the important program from sunsetting at the end of the year. Faegre Drinker Consulting helped IDF, a client since 2016, achieve this legislative victory.

People with PI have impaired immune systems, and many require regular infusions of immunoglobulin (Ig) therapies to restore the antibodies they are unable to produce. Under current Medicare law, beneficiaries are eligible to receive in-home intravenous immunoglobulin (IVIG), but Medicare does not have a permanent benefit to pay for the nursing services and supplies needed for this procedure. To address this gap, Congress established a Medicare in-home IVIG demonstration program that began in 2014. Faegre Drinker Consulting provided support and representation to IDF to secure extension of this project in 2017.

With a deadline again looming, Faegre Drinker Consulting supported IDF in working with bipartisan Congressional champions Democratic Rep. Doris Matsui of California and Republican Rep. Kevin Brady of Texas to secure an extension of the program through the end of 2023. Additionally, the new law expanded the number of beneficiaries able to participate by another 2,500 people and requires Medicare to produce a report evaluating the first six years of the project. This expansion came in the nick of time — as of April 2021, the demonstration project just exceeded the original cap of 4,000 beneficiaries. Ultimately, the hope is that the expanded demonstration will lead to a permanent in-home IVIG bundled payment in the Medicare program.

The demonstration extension has moved forward and IDF is continuing to work closely with the Centers for Medicare & Medicaid Services (CMS), including to inform the report required in the new law. IDF patient advocates thanked Congress for the extension at their annual Advocacy Day on April 28, 2021.

In addition to extending and expanding this demonstration, Faegre Drinker Consulting has supported IDF in efforts to secure additional gains in Medicare beneficiary access to Ig therapies, including an expansion in 2019 of eligible diagnostic codes. Faegre Drinker Consulting also assists IDF with other projects, including helping the organization form and lead the Immunocompromised Collaborative, a group representing immunosuppressed communities in navigating issues related to the COVID-19 pandemic and beyond.

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