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Health insurance is extremely important but also very complex. It is essential that you understand your health insurance coverage because it directly impacts your well-being—you need good coverage to receive quality care and manage your primary immunodeficiency (PI).

Without insurance, medical bills can wreak havoc on your finances. Your health insurance can give you peace of mind in knowing you are protected from most of these costs. Unfortunately making sense of your health insurance coverage can be frustrating. With some preparation and valuable information, you can be your own best advocate when it comes to health insurance.

Ways to Get Insurance
Most people get health insurance through their employers, but there are other ways to obtain health insurance:

  • Your Parent’s Plan – You can be covered under your parent’s plan. The Affordable Care Act (ACA) enables young adults to remain on their parent’s health insurance policy until they turn 26 years old. Before the ACA, insurance companies could remove enrolled children usually at age 19, sometimes older for full-time students. Now, most health plans that cover children must make coverage available to children up to age 26. By allowing you to stay on a parent’s plan, the law makes it easier and more affordable for young adults to get health insurance coverage. You can join or remain on your parent’s plan even if you are married, living away from school, not a full-time student, are 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. There is one temporary exception: Until 2014, “grandfathered” group plans do not have to offer dependent coverage up to age 26 if a young adult is eligible for group coverage outside their parent’s plan, meaning you are working and have the option to purchase insurance at work. Your insurer was required to provide you notice of its decision to remain a grandfathered plan. If you are unsure about your plan’s status, ask the employer or insurer.
  • COBRA – When you are longer covered by your parent’s plan, this program enables you to purchase the health plan your parents currently have for you so you can continue coverage. Coverage may be extended up to 36 months. For further information on COBRA coverage and your rights under COBRA law, your parents should contact the human resource department or the benefits manager within their organization or call their local Department of Labor.
  • Employer Plans – Employer plans are purchased through your employer. They are often the least expensive option since employers usually pay a portion of the premium. Most people are insured through their employers.
  • Individual Policy – You can purchase a policy on your own. Under the ACA, health plans cannot limit or deny benefits or deny coverage for a child younger than age 19 simply because the child has a “pre-existing condition”—a health problem that developed before the child applied to join the plan. This rule applies to all job-related health plans as well as individual health insurance policies issued after March 23, 2010. Starting in 2014, these protections will be extended to Americans of all ages.
  • Affordable Insurance Exchanges – Affordable Insurance Exchanges, another new part of the ACA, are designed to make buying health coverage easier and more affordable. Starting in 2014, exchanges will allow individuals and small businesses to compare health plans, get answers to questions, find out if they are eligible for tax credits for private insurance and enroll in a health plan that meets their needs. An exchange can help you look for and compare private health plans, get answers to questions about your health coverage options, find out if you are eligible for health programs or tax credits that make coverage more affordable, and enroll in a health plan that meets your needs. For individuals and families, the exchange is a single place where you can enroll in private or public health insurance coverage.
  • Medicaid – Medicaid is a government funded health insurance available to certain people, like low income parents and people with disabilities. Medicaid enrollment criteria also vary from state to state, but coverage is usually available only to those who are not eligible for any other type of health insurance and meet poverty guidelines. For more information, visit
  • Medicare – Medicare is a federal health insurance program that provides coverage for people over the age of 65, blind, disabled individuals, and people with permanent kidney failure or end-stage renal disease. The Medicare program is administered by the Centers for Medicare and Medicaid Services (CMS) and pays only for medical services and procedures that have been determined as “reasonable and necessary.” For more information, visit

Choosing and Managing a Plan
When deciding on a health insurance policy, you really need to do the research to make a wise decision. And once you have a plan, you need to keep on top of the details to ensure that you are getting all your benefits. If you do not take the time and evaluate all areas of coverage when choosing a plan, than there could be negative consequences to your choice.

  • You need to do a thorough plan comparison: the cost of premium, coinsurance, copayments, deductibles, and the prescription coverage, all need to be compared. Choosing a plan based strictly on premium cost could be detrimental to your finances if you are stuck with extremely high out of pocket costs and maximums. Click here to download the health insurance chapter from the IDF Patient & Family Handbook for insurance basics and a glossary of insurance terms.
  • Check to see if your providers are part of the plan. It would be unfortunate to have to switch doctors because yours does not participate with the insurance plan, and you cannot afford the out of network cost.
  • Ask such questions as: How are chronic conditions like PI covered within the plan? How is my immunoglobulin replacement therapy covered—is this covered under my medical or prescription benefit? Do I have a copay or coinsurance, and does site of care affect the cost? Do I need referrals to specialists? Do they have restrictions on prescription drugs?
  • Read your policy and then ask your personnel department, the Immune Deficiency Foundation (IDF), and any other resource you can find, lots of questions. Try to keep current with information concerning the new rules affecting your policy.
  • Compare your medical bills to your explanation of benefits to check for mistakes; billing errors occur more often than you might think.
  • Keep important information such as your policy number, your ID number, insurer’s address and phone number as well as you doctors’ contact information in one place to refer to whenever you communicate with your insurer. Use the IDF eHealthRecord to keep this and all of your medical information in one place.
  • Many employers offer open enrollment once a year when you may change your coverage to another plan offered by your employer. Ask your employer if and when an open enrollment period is offered. If you have difficulty getting benefits through your employer, consider coverage through associations, schools, professional groups, farm groups, or local chambers of commerce. You may qualify for individual or group benefits.
  • Document each time you contact your insurer. Get the full name and title of each person you talk with whenever you contact your insurer. This information will be important if you experience difficulties with your coverage and need to document your situation in writing.

If your problem becomes more complicated, there are other courses of action. You, and/or your clinician, may appeal to the medical director of the insurance company and may need to work with the provider to submit additional justification of your claim. Often, in the case of PI diseases, insurers need to be educated as to what the condition is and what the approved forms of treatment are. Most of the manufacturers of Ig offer reimbursement support services for their products and can be an excellent source of information.

There may come a time when an insurance company terminates your policy. If it does so for any other reason than bankruptcy, they are required by state and federal law to find you new coverage. Enforcing this law is up to the State Insurance Commissioner. You should contact them, especially if you feel your cancellation is due to a pre-existing condition. Arbitrary cancellation is illegal.

For more detailed information about health insurance, including a glossary of terms, visit the IDF Patient Insurance Center.

You can also visit the young adults section at