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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.

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.


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 to appeal a denied claim or file a complaint

If you have private health insurance, learn how to appeal a denied claim or how to make a complaint to your state’s insurance commissioner or the Department of Labor’s Employee Benefits Security Administration (EBSA).

Man sitting at his desk on the phone.

How IDF is helping to reform insurance

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

  • A 2014 IDF Health Insurance Survey found that one-third of patients with PI skipped life-sustaining treatments due to high out-of-pocket costs.
  • IDF is a steering committee member of the All Copays Count Coalition, which advocates for the abolition of copay accumulators and copay maximizers in health insurance plans at the state and federal level.
  • IDF also advocates for formulary inclusion of all immunoglobulin products and modes of administration because immunoglobulin replacement therapy should be personalized to meet the needs of each individual.  

Explore 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/guardian's health insurance policy until they turn 26 years old.
  • You can join or remain on your parent/guardian's plan even if you are married, not living nearby, not a full-time student, financially independent, or eligible to enroll in an employer's plan.
  • Your parents/guardians 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/guardian's health plan, here are some options for getting coverage:

  • COBRA: This program allows you to purchase the health plan your parents/guardians 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 ACA prohibits health plans from denying coverage because of a pre-existing condition.
  • ACA marketplace 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 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 who qualify for and are receiving Social Security disability benefits.

Explore your options


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.