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The Immune Deficiency Foundation (IDF) assists individuals, families and clinicians in navigating through the maze of private insurance access issues unique to primary immunodeficiency diseases (PI). These issues include ensuring appropriate immunoglobulin (Ig) guidelines, standards of care, sites of care and access to specialists. Educating insurance payers about the need for open access to treatments to address the needs of the PI community will result in better care.

This important work of addressing insurance issues has resulted in publication of several articles and op-eds in payer industry publications, as well as draft model Ig replacement therapy guidelines to guide payers. IDF continues to effectively intervene on behalf of individuals living with PI to have insurance policy guidelines changed so that those with PI have access to the therapies and services they require.

With the increased emphasis by all payers on reducing costs, IDF is taking proactive steps to ensure payers understand the high value that effective treatments, including all forms of Ig therapy, provide to individuals with PI.

In October 2018, IDF held a roundtable education and discussion session with eight different payer representatives held parallel to the annual Academy of Managed Care Pharmacy (AMCP) Nexus conference on the appropriate use of Ig therapy for PI. As a result of this session, IDF improved its relationship with payers and is developing content to be shared with many pharmacy manager representatives throughout the U.S. Building on this success, IDF is now working directly with AMCP to provide content, medical experts and real world patient experiences for AMCP member educational events to address appropriate treatment for PI. IDF plans to continue our education and collaborative efforts to cover a variety of topics impacting the PI community to ensure individuals with private insurance have access to the treatments most appropriate for them as determined by their physician.

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