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Navigating the world of health insurance

Living with PI can be challenging and understanding insurance coverage can be daunting. IDF is here to help you better understand your insurance options, navigate the claims process, and advocate for the coverage you need.

Here you'll find information on insurance basics, including types of insurance, the claims process, and common insurance terms. You'll also get tips and tools for advocating for yourself or your loved one, as well as resources for finding insurance and financial assistance.

What is health insurance?

Health insurance is a way to pay for medical care when you get sick or injured. It covers a variety of medical expenses, such as doctor's visits, emergency room visits, hospitalization, testing, and medication.

Individuals buy health insurance in exchange for coverage of medical expenses they may face. The cost of medical care is too high for most people to afford, so people come together in a group plan and pay a monthly amount, called the premium.

By pooling their money together, the risk of high healthcare costs is spread out over the entire group. This shared cost protects everyone from high medical expenses, making healthcare more affordable.

How to choose a health plan

Understanding your plan can have a huge impact on your health and your finances. IDF offers tips to help you make the best possible choice in selecting a plan.


How to appeal a denied claim

Dealing with insurance companies can be a complicated and frustrating process, especially when it comes to PI. Many insurance companies deny various treatments for PI, but you can appeal that decision. Some plans may provide you with an insurance case manager for assistance regarding your grievance. 

The Affordable Care Act (ACA) includes rules that spell out how your plan must handle your appeal. When you request an internal appeal, your plan must give you its decision within 72 hours, if the claim is for urgent care. For non-urgent care of services you haven’t yet received, they have 30 days, and for denials of services you’ve already received they have 60 days. If you have a case manager, check with them to verify which mandatory appeal forms must be used.

Appeal process steps

You have the right to appeal decisions in writing to the appropriate department. 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. 

Working with your prescribing provider, write a clear and simple letter with the following details:

  • Pertinent clinical information regarding your health history and treatment history as well as your medical records documenting past drug trials and health history. Your prescribing physician should have these.
  • History of any adverse reactions or side effects, you have had to similar treatments
  • If your insurer requires the prescribing physician to complete a drug authorization form, you should make sure this has been done.
  • If you received a letter of denial for the treatment, ensure that the information provided directly addresses the reasons for the denial.
  • If the dispute is over the medical necessity of your treatment, your physician’s support in the form of a letter including studies supporting the benefit of the treatment in question is invaluable. Request that your physician write a letter of medical necessity. A service is medically necessary if it meets any one of the three standards below: 
    • The service or benefit will, or is reasonably expected to, prevent the onset of an illness, condition, or disability.
    • The service or benefit will, or is reasonably expected to, reduce or ameliorate the physical, mental or developmental effects of an illness, condition or disability.
    • The service or benefit will assist the individual to achieve or maintain maximum functional capacity in performing daily activities taking into account both the functional capacity of the individual and those functional capacities that are appropriate for individuals of the same age.
  • The letter should assert that the prescribed treatment is medically necessary and:
    • Any product on the formulary would not be as effective and/or would be harmful to you.
    • All other product or dosage alternatives on the plan’s formulary have been ineffective or caused harm, or based on sound clinical evidence and knowledge of the patient, are likely to be ineffective or cause harm.
  • Contact your insurer after submitting your request to make sure they have received it.

Your physician can request a peer-to-peer review to discuss the specific reason why this type of treatment is needed for you if the initial appeal is unsuccessful.

If your plan still denies your coverage after an internal review, you can ask for an Independent External Review, which is a reconsideration of your original claim by professionals with no connection to your insurance plan. Your plan must include information on your denial notice about how to request this review.

Tips for success

The following tips are from a clinical immunologist that has been successful in overturning Ig denials. You’ll also find some additional helpful information.

  • The appeal should be short, succinct and carefully documented. Keep in mind that the insurance companies are reviewing thousands of appeals. The shorter the appeal, the shorter the turn-around-time for a response.
  • You have roughly two (2) minutes of the Medical Director's attention, so keep that in mind.
  • Provide well-accepted diagnostic studies which are in the practice guidelines.
  • Provide standards of practical criteria to support the laboratory studies.
  • Provider proof and documentation of serious infections/complications that have not been responsive to appropriate medical/surgical intervention, including clear radiographic evidence of persistent disease, clinical documentation of infections, etc.
  • Focus on the rationale. A physician'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, there were three (3) episodes of pneumonia with fever of 102, and there was a chest x-ray that showed lobar pneumonia and five (5) days of antibiotics were required.
  • When concluding the letter, add the names of the immunologists that have completed the scientific research on the diagnosis in question, in case the insurer requests 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."
  • How much ACA rules will change your current appeal rights depends on the state you live in and the type of plan you have. Some group plans may require more than one level of internal appeal before you are allowed to submit a request for an external review. However, all levels of the internal appeals process must be completed within the timeframes referenced earlier.

Common insurance terms you need to know

The health insurance industry uses terms and concepts that the average person may not know. Check out our resource and glossary of important terms.

How IDF is helping to reform insurance

IDF has been advocating for fairer healthcare costs for people with PI, particularly those requiring specialty medications. Here are some key points:

  • Insurers have been discriminating against people with chronic conditions by offering plans with high coinsurance for specialty tier medications, which means that families don't know how much they'll have to pay until they access their treatments, making it difficult for them to plan expenses.
  • A 2014 IDF Health Insurance Survey found that one-third of patients with PI had skipped life-sustaining treatments due to high out-of-pocket costs.
  • IDF established the Affordable Co-pays and Treatments (ACT) for Nevada, which worked to pass legislation that requires insurers to have at least 25% of their plans offer flat fee co-pays for prescription medications.
  • IDF has also led the Iowa Co-pay Choice Coalition, which aims to pass legislation that offers flat fee co-pays with no deductibles for people with chronic conditions in need of expensive treatments.
  • IDF has been active in state access to care coalitions, proposing specialty tier legislation and meeting with legislative leadership to address discriminatory healthcare plan practices.


Explore IDF advocacy initiatives

Insurance for young adults and teens

You can most likely get health insurance through your parent's plan, even if you are an adult yourself. Here's how it works:

  • The Affordable Care Act (ACA) allows young adults to stay on their parent's health insurance policy until they turn 26 years old.
  • Most health plans that cover children must now make coverage available to children up to age 26.
  • You can join or remain on your parent's plan even if you are married, living away from school, not a full-time student, financially independent, or eligible to enroll in an employer's plan.
  • Your parents should check with their employer or insurer to make sure their plan is not an exception to this rule.

If you are no longer covered by your parent's health plan, here are some options for getting coverage:

  • COBRA: This program allows you to purchase the health plan your parents currently have for you so you can continue coverage, which may be extended up to 36 months.
  • Employer Plans: These plans are purchased through your employer and are often the least expensive option since employers usually pay a portion of the premium.
  • Individual Policy: You can purchase a policy on your own. Keep in mind that the Affordable Care Act (ACA) prohibits health plans from denying coverage for a child younger than age 19 because of a pre-existing condition.
  • Affordable Insurance Exchanges: Exchanges allow individuals and small businesses to compare health plans, find out if they are eligible for tax credits for private insurance, and enroll in a health plan that meets their needs.
  • Medicaid: Medicaid is a government-funded health insurance available to certain people, like low-income parents and people with disabilities. Medicaid enrollment criteria vary by state, but coverage is usually available only to those who are not eligible for any other type of health insurance and meet specific income guidelines.
  • Medicare: Medicare is a federal health insurance program that provides coverage for people over the age of 65, as well as those with certain illnesses or disabilities.


Getting answers can help create peace of mind. Ask us anything and we’ll consult with the experts.

How Medicare will cover your infusions is based on your diagnosis code. If your diagnosis code is listed here, you will be covered by Medicare Part B at 80% (after the yearly deductible). Your supplemental (Medigap) policy will then cover the remaining 20%. 

If your diagnosis is not included on the PI diagnoses list, Ig replacement therapy will be covered under Medicare Part D. Click here to learn about Medicare Part D since coverage is different.

If you have a Medicare Advantage Plan and not the original Medicare with a Medigap plan, the Advantage Plan determines how claims are paid (Medicare B vs. D). Most patients on an Advantage Plan, even with a Medicare B qualifying diagnosis, end up owing high out-of-pocket costs.

Medicare plans vary from state to state and even in counties within a state. To help you select the appropriate plan, regardless of Part B or Part D, your State Health Insurance Assistance Program (SHIP) has trained counselors who can tell you the plans you are eligible for and help you find answers to your questions about coverage.

Please share the following information when you talk with the SHIP counselor or an insurance plan representative. This will help them accurately verify coverage or put you in touch with someone that can verify coverage.

  • If your diagnosis is included in the PI diagnoses list, tell them your Ig therapy for primary immunodeficiency (PI) is a medical treatment covered under Medicare Part B. You should emphasize this since many of the counselors are used to dealing with Ig therapy covered under Part D for non-PI diagnoses. 
  • Regardless of your diagnosis, provide the billing code (J-code) for your product. (Your specialty pharmacy or immunologist’s billing office can provide this code.)
  • Provide your PI diagnosis code. (If your diagnosis is PI, refer to the link in paragraph one above.) If your diagnosis is not included in the PI diagnosis list, consult your healthcare provider to receive the diagnosis code.

Additional Information for Individuals with a PI diagnosis covered by Medicare Part B:

If you are commercially insured (not on a federally funded plan), contact the manufacturer of your Ig therapy product to enroll in their copay assistance program.

  • Federally funded plans include but are not limited to Medicaid, Medicare (including Medicare Part D), Tricare, Medigap, VA, DoD, or other federal or state programs (including any medical or state prescription drug assistance programs).

There are also nonprofit organizations that might be able to provide copay/premium assistance to individuals diagnosed with PI. If assistance is currently not available, inquire about being added to the waitlist.

Accessia Health:  

The Assistance Fund (TAF):

Patient Advocate Foundation (PAF): 

Financial hardship programs

  • Ask your specialty pharmacy if they offer a financial hardship program where the amount you owe can be reduced or eliminated. Specialty pharmacies cannot offer this to you. You have to ask.
  • Major medical centers (if you are getting your infusions done at a hospital or infusion suite) often offer programs where the amount you owe can be reduced or eliminated based on income. This information is often available on their website or by calling patient relations.

We also recommend signing up for PAN Foundation FundFinder

  • Phone: 866-316-7263
  • FundFinder is a free website that helps you track more than 200 patient assistance funds from nine charitable organizations. You can sign up for email and text alerts when a disease assistance fund you’re interested in opens at PAN or other organizations.

If you have further questions or are diagnosed with PI and looking for more support, please reach out to us at 410-321-6647.