In 2014 and 2015, IDF conducted the first national health insurance surveys of people with all types of primary immunodeficiency diseases, including Chronic Granulomatous Disease (CGD). Over 1,600 members of the IDF community participated, and by doing so helped IDF gain greater insight into health insurance coverage and satisfaction among people with PI. These findings have also been used in IDF advocacy efforts on behalf of the PI community.

According to the results from both the 2014 and 2015 health insurance surveys, 99% of patients are insured and satisfied with their coverage and quality of healthcare they receive (over 80% across the 2014 and 2015 health insurance surveys). However, serious health insurance issues, such as affordability and access to specialists, still affect some members in our community. For example, in 2014, 21% reported problems affording visits to healthcare specialists; this increased to 22% in 2015.

To learn more about the 2014 results, you can now download the summary report, Health Insurance & Primary Immunodeficiency Diseases: A 2014 Immune Deficiency Foundation Survey, which covers the following topics:

• Insurance Coverage
• Costs of Health Insurance
• Perception of Quality of Care
• Immunoglobulin (Ig) Replacement Therapy and Health Insurance Policies

Click here to download the 2014 summary report.

We want to continue to learn about the experiences related to health insurance people with PI face. Recently, IDF launched the 2016 IDF Health Insurance Survey, and it will remain open until mid-January 2017. If you received an email invitation for this survey and have not yet completed it, please participate today. As a rare disease community, every voice counts.

If you have any questions, please contact IDF at: idfresearch@primaryimmune.org or 800-296-4433.

Thank you in advance for participating!