About The Surveys


The Patient Protection and Affordable Care Act (ACA) became law in March 2010. The goal of the law is to make healthcare more affordable and accessible for millions of Americans who either do not have access to or cannot afford health insurance.

Recent history suggests that even small changes to how healthcare related services are delivered covered, reimbursed or distributed to those with a primary immunodeficiency (PI) can have a profound impact on this vulnerable, chronic rare disease community. The changes ACA has thrust upon the U.S. healthcare system is certainly not small and IDF is concerned that some of these changes may create problems for persons with PI.

With the passage of the ACA into law, many of its provisions are of benefit to those with PI. However, some outcomes and policies may have unintended consequences, not only for those insured under the Federal or State Marketplaces but also those insured through private health insurance. The decentralized nature of the healthcare marketplaces and far-reaching changes to healthcare under ACA make it difficult to project what types of issues or challenges patients may face.

In order to capture the impact ACA may have on those with PI, as well as to describe in general the health insurance experiences of those impacted by PI, IDF conducted a series of web-based surveys of patients in our database in 2014, 2015 and 2016. It is our hope that the data from this series of surveys will help better inform policymakers as to the experience of those in the primary immunodeficiency community, as healthcare reform continues to evolve over the next few years.


The IDF Survey Research Team and other IDF Staff developed the IDF National Health Insurance Survey questionnaires. Each of the three individual surveys contained about 53 main questions, with an average completion time of approximately 25 minutes. Topics covered in the surveys included:

  • Out of pocket costs, premium costs, deductible, co-pay/co-insurance
  • Annual limits
  • Essential health benefits
  • Access to preferred therapy- product, site of care and mode of infusion
  • Ability to access specialists

Each of the survey study protocols were individual and independently reviewed by Schulman IRB Associates. All three surveys received exemptions from IRB review and approval.

The IDF Survey Research Team programmed, tested, piloted, refined and fielded the surveys. All self-identified adults with PI and self-identified parents/caregivers of children with PI who also had a valid e-mail address in IDF’s patient database received e-mail invitations to participate in the surveys. Survey participants were not offered incentives for their participation.

IDF 2014 National Health Insurance Survey

  • In field: November 14, 2014 – December 4, 2014
  • 9,133 e-mail invitations delivered
  • 1,417 surveys completed

IDF 2015 National Health Insurance Survey

  • In field: December 4, 2015 – December 31, 2015
  • 10,532 e-mail invitations delivered
  • 1,504 surveys completed

IDF 2016 National Health Insurance Survey

  • In field: November 30, 2016 – January 15, 2017
  • 11,198 e-mail invitations delivered
  • 1,414 surveys completed


PowerPoint Presentations

IRB Exemption Letters


Funding for the IDF’s Health Insurance & Primary Immunodeficiency Diseases was provided in part by unrestricted grants from Grifols and Shire.