The Patient Protection and Affordable Care Act (ACA) became law in March 2010 as a means to help make healthcare more affordable and accessible for millions of Americans who either do not have access to or cannot afford health insurance. As a result of the ACA there were several changes to how healthcare related services are delivered covered, reimbursed or distributed. It was thought that these changes, even if small, may have a profound impact on people with primary immunodeficiency diseases (PI).
In order to capture the ACA’s impact on those with PI, as well as to describe in general the health insurance experiences of those impacted by PI, the Immune Deficiency Foundation (IDF) conducted a series of web-based surveys of persons with PI in our database in 2014, 2015 and 2016.
The findings from these surveys are now available online: www.primaryimmune.org/insurancesurveys. You will find four factsheets covering the following topics:
Additionally, in the About the Surveys section, the survey background, methodology, questionnaires and a PowerPoint presentation are available.
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 PI community, as healthcare reform continues to evolve.
IDF will be creating a similar site for the IDF 2017 National Patient Survey. The 2017 National Patient Survey was recently sent to select households and if you have received the survey please take a few moments to complete and mail back the survey. The information you provide will help the PI community and a summary of the results will be available online.
Questions about any of IDF’s surveys? Have feedback about the health insurance findings? Contact IDF: firstname.lastname@example.org. Thank you!
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.