The more you understand about primary immunodeficiency (PI), the better you can manage it. Learn about PI diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Whether appealing a denial or filing a complaint, be sure to keep written records of all interactions with your health insurance company, including dates and times, as well as the names of representatives you speak with.
Dealing with insurance companies can be a complicated and frustrating process, especially when it comes to PI. Insurance companies may deny various services or treatments for PI, but you have the right to appeal that decision, generally within 180 days of receiving the denial. The explanation of benefits (EOB) for the denied claim must provide information on how to appeal the decision and the amount of time you have to do so. Some plans may provide you with a case manager for assistance regarding your grievance.
The information below applies generally to all types of private health insurance plans. However, always verify the exact process and timing with your insurance company, including whether you need to use specific appeals forms.
You have the right to appeal decisions in writing to your insurance company. You can find the address to submit appeals in the denial letter, your coverage documents, or by contacting your insurer using the member services telephone number on your ID card.
If the denial is for medication and your insurer requires the prescribing physician to complete a drug authorization form, verify with your provider’s office that this has been done before filing your appeal.
Before you file an appeal, you may want to request a peer-to-peer review between your healthcare provider and an insurance company doctor to discuss why you need the service, benefit, or treatment. Note that some insurers do not allow peer-to-peer reviews after a written appeal has been filed. In addition, some doctors will not participate in peer-to-peer reviews because they feel the process is another uncompensated way for insurers to deny care. However, a successful peer-to-peer review may save you from having to file an appeal.
To file an appeal, work with your healthcare provider to write a clear and simple letter with the following details:
Contact your insurer after submitting your appeal to make sure they receive it.
The Affordable Care Act (ACA) requires your plan to respond to your internal appeal within certain time limits. Your plan must give you a decision about your appeal within 72 hours if the claim is for urgent care. For non-urgent services you haven’t yet received (i.e., appealing the denial of prior authorization), they have 30 days. For appeals of denials of services you’ve already received, they have 60 days.
Some plans may require more than one level of internal appeal before you can submit a request for an external review. However, all levels of the internal appeals process must be completed within the ACA-mandated timeframe.
If the dispute is over the medical necessity of the service, benefit, or treatment, request that your healthcare provider write a letter of medical necessity. Your insurance company may have a template or form for this letter.
A service is medically necessary if it meets any one of the following standards:
The letter should state and provide evidence that:
The following tips are from a clinical immunologist who has been successful in overturning denials for immunoglobulin replacement therapy.
If your plan still denies coverage after an internal review, you can ask for an independent external review [5]. During the external review, professionals with no connection to your insurance plan review your original claim. You must request an external review within 120 days of receiving your plan’s final internal review determination.
Some states have their own external review processes [6], while others use the Department of Health and Human Services’ (HHS) Federal External Review Process [7]. Your plan must include information on your denial notice about how to request an external review.
Your insurer is required by law to comply with the external reviewer’s decision regarding coverage.
Healthcare providers caring for those with PI can play an integral role in ensuring their patients have access to the treatment they need.
Download these template letters of medical necessity to help your healthcare provider craft a succinct but detailed response that gets your Ig approved.
If you think your insurance company has broken state or federal law, ignored their own rules or processes, or implemented a practice that is unfair to patients, you can file a complaint with either your state department of insurance [8] or the Employee Benefits Security Administration (EBSA) [9].
We have seen a rise in access issues for the PI community, including copay accumulators, denials, and policy changes that limit options. By filing a complaint, you can fight for better access to the treatment you need. To file a complaint, you must be the insured person on the policy (or the parent/legal guardian of the insured person).
If your health insurance plan is state-regulated, you can file your complaint with your state department of insurance. Visit the National Association of Insurance Commissioners (NAIC) website and select your state from the “insurance department” dropdown menu to find contact information [8]. State-regulated plans include those purchased through ACA marketplaces, individual plans, and most plans offered to state and county government employees.
If your health insurance plan is federally regulated, you can file your complaint with a regional office of EBSA [10] or through EBSA’s website [11]. Federally regulated plans include self-insured health plans offered through private employers.
Your insurance company is required to respond to the state department of insurance or EBSA.
Gather the required information listed above and send a request for help through Ask IDF.
Ask IDFUnderstanding your health benefit needs and your health insurance plan can have a huge impact on your health and your finances.
This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.
Adapted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition.
Copyright ©2019 by Immune Deficiency Foundation, USA
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