Patient Insurance Center

Great progress has been made in the treatment of primary immunodeficiency diseases. 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.

IDF Health Insurance Toolkit for Patients with Primary Immunodeficiency Diseases and Their Families

Having the tools you need to select the right healthcare plan for you and your family is very important. Individuals affected by primary immunodeficiency diseases (PIDD), as well as other rare disorders, need to make educated decisions on their coverage options. The Immune Deficiency Foundation’s (IDF) Health Insurance Toolkit provides you with the information and resources to make the best possible choice in selecting a private health insurance plan.
CLICK HERE

Patient Resources

Here for You – Contact Our Patient Advocate
You may have questions that you want to discuss with someone who understands the primary immunodeficiency community and has experience handling insurance issues. IDF’s Patient Advocate is here for you. Our Patient Advocate provides individualized assistance for patients who face insurance problems including denials for therapy, procedures related to primary immunodeficiency diseases, reimbursement complications and help getting insurance. Through our Patient Advocate, you can also locate a specialist, connect with peer support, request educational materials and more.

Call 800.296.4433 or contact our Patient Advocate via Ask IDF – CLICK HERE.

Understanding Insurance Basics
Insurance procedures and terminology are often complicated and can be confusing. You can start by learning the basics of insurance from IDF’s Patient & Family Handbook for Primary Immunodeficiency Diseases 4th Edition, specifically the chapter on health insurance. In just a few pages, you will have a better understanding of insurance procedures and terminology. Download the health insurance chapter – CLICK HERE.

FAQ – Health Insurance Frequently Asked Questions

Get answers to general insurance questions to help you better understand your options and policy. View the FAQ – CLICK HERE.

American Academy of Allergy, Asthma & Immunology (AAAAI) IVIG Toolkit

Patients with primary immunodeficiency diseases have rights, especially in terms of treatment and standards of care. (Click here for IDF’s Bill of Rights for Patients with PIDD.) To help patients protect those rights and educate healthcare providers and/or insurance companies, the American Academy of Allergy, Asthma & Immunology (AAAAI) Primary Immunodeficiency Diseases (PID) Committee created an IVIG toolkit. The kit 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. The IVIG toolkit includes:

Eight guiding principles for safe, effective and appropriate use of IVIG (PDF)

Guidelines for the site of care of the administration of IVIG therapy for patients with PID (PDF)

AAAAI Work Group Report: The Appropriate Use of Intravenously Administered Immunoglobulin (IGIV) (PDF)

“Use of intravenous immunoglobulin in human disease: A review of evidence by members of the primary immunodeficiency committee of the American Academy of Allergy Asthma & Immunology,” published as a supplement to The Journal of Allergy and Clinical Immunology in April, 2006 (PDF)

Letter to contract and medical directors to advocate for the coverage of IVIG (PDF)

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. Read the appeal tips – CLICK HERE.

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 – CLICK HERE.

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 – CLICK HERE.

Healthcare Reform

As the Affordable Care Act is implemented, IDF will periodically post status reports, links to other websites, and explanations of various provisions of the new healthcare reform law. Stay updated about healthcare reform and how it affects you. – CLICK HERE.

Insurers Are Not Doctors

Insurers Are Not Doctors is our campaign against harmful insurance formularies for immunoglobulin (Ig) therapy. Please inform IDF if your insurance plan is instituting a formulary for Ig therapy. Read the latest news at insurersarenotdoctors.org – CLICK HERE.

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 – CLICK HERE.