Patient Insurance Center

Print Friendly

Great progress has been made in the treatment of primary immunodeficiency diseases (PI). However, these treatments often come at a significant financial burden to the patient or family living with these diseases. The majority of patients rely on some form of insurance to assist with expenses, but dealing with health insurance and understanding the maze of issues involved can be overwhelming.

Often health insurers need additional paperwork to justify the use of the therapy prescribed. Added red tape and follow up phone calls can frustrate patients and caregivers. Even individuals who have adequate insurance coverage often face expensive insurance premiums or high co-payments. Patients may be confused about their insurance options. Others simply lack affordable health insurance and feel forced to stop treatment.

IDF understands these significant concerns for individuals and families living with primary immunodeficiency diseases. Our Patient Insurance Center provides information regarding insurance issues, as well as other possible sources of assistance, for you and your family.

Understanding Health Insurance:
Things to Consider When Choosing a Health Plan

IDF Health Insurance Toolkit for Those Living with PI

Having the tools you need to select the right healthcare plan for you and your family is very important. Individuals affected by PI, as well as other rare disorders, need to make educated decisions on their coverage options. The IDF Health Insurance Toolkit provides you with the information and resources to make the best possible choice in selecting a private health insurance plan.
Download Toolkit

Affordable Care Act

As the Affordable Care Act, also known as Healthcare Reform, changes, IDF will periodically post status reports, links to other websites, and explanations of various provisions of the law. Stay updated about healthcare reform and how it affects you.
Read about the ACA

Patient Resources – Contact Our Patient Advocate

You may have questions that you want to discuss with someone who understands the PI community. IDF’s Patient Advocate is here for you, providing individualized assistance for patients and families who face insurance problems including denials for therapy, procedures related to PI, reimbursement complications and help getting insurance. Our Patient Advocate can also help you locate a specialist, connect with peer support and more.

Call 800-296-4433 or contact our Patient Advocate via Ask IDF.


Understanding Insurance Basics

Insurance procedures and terminology are often complicated. You can learn the basics of insurance from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases 5th Edition, specifically the chapter on health insurance. In just a few pages, you will have a better understanding of insurance procedures and terminology.
Download Health Insurance Chapter

FAQ – Health Insurance Frequently Asked Questions

Review frequently asked questions to help you understand your options and policy.
Health Insurance FAQs

IDF Q & A – Patient Questions Answered

Over the years, we have received great questions from our community. We created a comprehensive categorized list of these questions and responses. Many have appeared in IDF publications.
View IDF Q & A


The American Academy of Allergy, Asthma & Immunology (AAAAI) Primary Immunodeficiency Diseases (PID) Committee created an IVIG toolkit, which includes recommendations and guidelines for physicians and for those responsible for coverage determinations to ensure the safe, effective and appropriate use of IVIG. You can share these documents with your healthcare provider and/or insurance company.
Download AAAAI IVIG Toolkit

Health Insurance Denial: How to Appeal

Immunoglobulin (Ig) therapy is an expensive therapy, and unfortunately, some insurance companies deny Ig therapy for primary immunodeficiency diseases until the insurer understands the rationale behind this life-sustaining therapy. Many are reluctant to approve expensive payments each year where indications are not substantiated.

IDF worked with a clinical immunologist to develop tips to help you explain the importance of Ig therapy and overcome denials. These ideas have been successful in overturning many denials for others and may be useful for you. We have also included a link to sample appeal letters that you can tailor to your own clinical history.

The IDF Medical Advisory Committee issued a resolution in January 2016 regarding the danger posed by the arbitrary insurer requirement for a diagnostic vaccine challenge for all previously diagnosed individuals with Common Variable Immune Deficiency (CVID). Click here to read the resolution.

Read the Appeal Tips

Manufacturers and Assistance Programs

Many manufacturers of immunoglobulin (Ig) therapy and other treatments for primary immunodeficiency diseases offer assistance programs for patients in the event there is a lapse in insurance coverage. Because of these programs, patients can continue to receive the manufacturers’ products and continue treatment. Oftentimes patients must enroll in these programs prior to loss of insurance.
Learn More about the Programs

Other Insurance and Treatment Resources

Many organizations and services offer a range of assistance for patients–from applying for disability to arranging patient travel for medical purposes. There are also additional insurance and treatment cost resources. Take advantage of other resources

Additional Resources