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Understanding Health Insurance
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.
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.

WORKING WITH YOUR HEALTHCARE PROVIDER AND/OR INSURANCE COMPANY
AAAAI IVIG Toolkit

This toolkit created by the American Academy of Allergy, Asthma & Immunology (AAAAI) Primary Immunodeficiency Diseases(PID) Committee includes recommendations and guidelines for physicians and for those responsible for coverage determinations to ensure the safe, effective and appropriate use of IVIG.

Health Insurance Denial: How to Appeal

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.

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.

Insurance FAQS

If you did not have a FSA, you would be able to claim certain medical expenses as deductions on your taxes. However, since you do have an account, taxes were never taken out of your FSA contributions. For that reason, medical expenses paid for with FSA money cannot be included on your tax return. You should speak with a tax consultant when determining what expenses are eligible for deduction.

If you have a primary immunodeficiency disease with the diagnosis codes 279.04, 279.05, 279.06, 279.12, or 279.2, your IVIG/SCIG treatment is reimbursed under Medicare Part B. If your provider submits the IVIG/SCIG service claim under Part D, it will most likely be denied. Your provider will have to reprocess and submit those IVIG/SCIG claims through Medicare Part B.

In some cases, a Medicare Advantage plan may cover other primary immunodeficiency disease diagnosis codes under Part D. You should check with your Medicare Advantage provider to see how they are processing your claim.

  • Adult children may remain as dependents on their parents’ policy until their 26th birthday.
  • Children under age 19 may not be excluded for pre-existing conditions.
  • No more lifetime or annual caps on health coverage.
  • Free preventative care for all people.
  • The “doughnut hole” is in the process of closing for Medicare patients, making prescription medications more affordable for seniors.
  • Insurance plans are available for persons who have not been able to purchase medical insurance because of a pre-existing condition.
  • When filing a claim, it is best to obtain the most current records from your relevant treating sources, for example, your immunologist, rheumatologist, etc., and submit them at the time of the application. This will help expedite your claim. You should also obtain letters from your treating physician and other specialists with supporting objective evidence such as lab findings, MRIs, x-rays, etc stating that you are unable to sustain a 40 hour workweek. This will greatly support your claim.
  • Stay in contact with your disability examiner every 10-14 days. Their name and phone number should be located on the mail they send to you. Ask them if they have received all your pertinent medical records. Most hospitals and physicians’ offices rely on copy services which only come by once a week. It may take several phone calls/faxes to obtain the needed information which could make a huge difference in your claim.
  • When Disability Determination Services (DDS) sends you forms to complete regarding how pain affects your activities, fatigue, etc you should be as detailed as possible and don’t be afraid to add extra sheets to the forms. Describe a typical day when completing an activity of daily living form. You will also be asked to complete a work history form. This should include the jobs you worked in the last 15 years. Please be as detailed as possible regarding your job duties, rate of pay, supervisory duties, etc.
  • You may be asked to attend a medical exam at no expense to you to in order to obtain more information. This is more common in cases such as rheumatoid arthritis, SLE, fibromyalgia etc when detailed joint range of motion and mobility/gait information is needed in addition to the information about your PIDD. It is very important that you keep this exam. Your disability examiner will contact you by phone or mail regarding the details of the exam.

For more detailed information, please go to the Social Security Administration Website.

Below are some “how to” tips from a clinical immunologist that has been successful in overturning IG denials. This is followed by a link to the IDF website that includes additional information including sample appeal letters that should be tailored to the patient’s clinical history.

The appeal should be short, succinct and carefully documented.

  • Keep in mind that you have 2 minutes of the Medical Director’s attention.
  • Provide well-accepted diagnostic studies which are in the practice guidelines.
  • Provide standards of practical criteria to support the laboratory studies.
  • Provide proof and documentation of serious infections/complications which have not been responsive to appropriate medical/surgical intervention; including clear radiographic evidence of persistent disease, e.g. lungs, sinuses et al, clinical documentation of infections etc.
  • Focus on the rationale for immunoglobulin therapy – a doctor’s letter that states “because it is medically necessary” is not specific enough to be added to an appeal letter. Precise statements are required. . . for example: 3 episodes of pneumonia with fever to 102. Chest x-ray (if available) showed lobar pneumonia and xx days of antibiotics were required.
  • Keep in mind that the insurance companies are reviewing thousands of appeals; therefore, the larger packets, will be put to the side. The shorter the appeal, the shorter the turn-around-time for a response.
  • When concluding the letter, add the names of the immunologists that have completed the scientific research on the diagnosis in question, should the insurer request a peer review. For example “Should you have any questions, I would request a peer review by either Dr. John Smith or Dr. Ann Jones from the University School of Medicine”

Click here for more information to share with your healthcare professional.

POS is a Point-of-Service Plan. It is a type of managed care plan that is an HMO with an out of- network option. You can decide whether to go to a network provider and pay a flat dollar or to an out-of-network provider and pay a deductible and/or a coinsurance charge.

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

What if I have questions about IDF ePHR?

We are here to help! Simply e-mail info@idfephr.org or call 800-296-4433.

Is my information safe with PI CONNECT?

Rest assured, your information is safe in IDF PI CONNECT. We use the latest health information technology to ensure your information is secure, including adhering to federal and state regulations, and maintaining comprehensive standards, frameworks and security controls.

What is PI CONNECT?

PI CONNECT is the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) developed by the Immune Deficiency Foundation (IDF), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.

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