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The goal of the Immune Deficiency Foundation’s health insurance-related activities is to provide resources and support for both patients and healthcare providers to ensure patients with primary immunodeficiencies (PI) have full access to the treatments and care they need.

Efforts include developing insurance-specific tools for patients and providers to help them navigate medical policies within national insurance requirements and collaborating with healthcare organizations to support coverage for treatments and diagnostics. IDF also educates insurers, employers, and benefit management companies to better understand the treatment needs of those living with PI.

An open door for feedback

IDF welcomes patient and provider feedback via Ask IDF to gain a better understanding of the challenges patients face in obtaining coverage for PI-related medical care. In addition, IDF provides resources, support, and answers to frequently asked questions through Ask IDF to help resolve these challenges.

Gathering data

Using our new database, IDF is gathering information to identify and group key insurance-related issues, which allows us to address negative coverage trends. Additionally, IDF is pursuing data-sharing opportunities with other organizations to identify areas where patients need more advocacy and support and to better understand the scope of PI care nationally.

Developing insurance-company-specific guides

IDF is developing tools for patients and healthcare providers that will serve as a one-stop-shop of coverage information for each of the 12 largest national insurance companies (Cigna, Aetna, United Healthcare, etc.). These tools will include IVIG medical policies, medical guides, prior authorization forms, formularies, drug exclusion lists, and health plan criteria for individuals with PI.

Coverage for genomic diagnostics

IDF is working to promote coverage of newer diagnostic technologies, such as DNA screening panels, for earlier and more accurate diagnosis of PI.

Convening working groups

In 2021, IDF held an open dialogue with insurance companies, specialty pharmacies, healthcare providers, and patients to address specific concerns in coverage. This type of collaboration allowed for a mutual understanding of these issues to provide better coverage for PI.

Our goal is to hold additional workgroup sessions to address additional PI insurance-related issues and to use our findings to develop additional tools, webinars, and resources.

Want to advocate for insurance-related issues?

Sign up for IDF Action Alerts! When IDF identifies an insurance-related issue and needs your voice to be heard, we will notify you.