You are here

IDF wants to keep patients and families living with primary immunodeficiency (PI) up-to-date about the Affordable Care Act (ACA), also known as the healthcare reform law.

Since the 2016 Presidential election, IDF has continued to focus on what will happen with healthcare coverage and access under the new administration. There are many unknowns at this time, but we want to remind members of the PI community that it is still vital that those who need insurance through the Marketplace enroll, regardless of the possible repeal of the ACA.

It is important to remember that changes to the ACA will not be immediate, and those who rely on insurance through the Marketplace (or exchange) should proceed as they previously would until told to do otherwise.

IDF continues to be committed to working with other patient organizations to make sure our patients are not forgotten. As more information becomes available regarding any proposed changes in healthcare law and healthcare plans, we will be there advocating for our community, and we will share information through our various IDF communications. Remember, “Put Patients First!” Sign up for IDF Action Alerts to keep in the know!

Click Here to Sign Up for Action Alerts

We will periodically post status reports, links to other websites, implementation reports and explanations of various provisions of the law. For more information regarding general insurance issues, visit our Patient Insurance Center.

Health Insurance Marketplaces

Estimate your out-of-pocket health care costsOne of the major provisions of the ACA are the health insurance marketplaces. Health Insurance Marketplaces are designed to help you find health insurance that fits your budget with less hassle.

If you are thinking about enrolling in one of the plans that will be offered in your state health insurance marketplace, IDF has resources to assist you.

  • Read IDF's overview of the purchasing health insurance in the marketplaces. It can help prepare you, as someone living with primary immunodeficiency, to compare and purchase health insurance coverage in the marketplaces.
  • Use the National Health Council’s interactive game to help you understand how unexpected life events can affect your out-of-pocket healthcare costs.  An injury, new diagnosis, even a shark attack! – affect a person’s health care needs and out-of-pocket costs.  Play the game at to see how different types of health plans can impact a person’s budget.
  • Have your questions answered at the National Health Council’s –Answer My Questions resource page where you will find useful, patient-focused materials and guides provided by trusted organizations.
  • Use the National Health Council's Putting Patients First Estimate My Costs calculator. As a member of the National Health Council (NHC), IDF has access to valuable resources, including this calculator that can help you understand the different types of marketplace plans that will meet your health and budget needs.
  • Visit for specific information on how to enroll. There is also a 24-hour toll-free consumer assistance number: 800-318-2596 (855-889-4325 TTY/TDD). Operators can provide enrollment assistance in more than 150 different languages.

To further help patients and families living with primary immunodeficiency learn more about the implementation of the ACA, IDF offers additional resources from the NHC. Click here for more helpful resources.

ACA Provisions and Implementation

The ACA represents the largest change to the healthcare system in the U.S. since the passage of Medicare in 1964 and Medicaid in 1965. IDF is monitoring the new policies and where necessary will be raising the voice of the PI patient community to make sure that our "zebras" are not left out in the cold. Click here for information about the ACA provisions and implementation.