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Understanding Insurance

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It’s a good idea to start learning about health insurance because it is an important part of your healthcare. It is never too early to begin learning about it because it directly impacts your well-being—you need good health insurance coverage to receive quality care and manage your primary immunodeficiency (PI).

We have included some information to help you understand the basics, but it’s best to talk with your parents and ask them questions because health insurance can be complicated.

What is health insurance?
Health insurance is used to cover the cost of medical care when you become sick. People, like your parents, purchase health insurance in return for coverage of all kinds of medical care, including, doctors’ appointments, visits to the emergency room, testing, hospitalization, and medications.

The idea is simple—medical care is so expensive that people can’t afford to pay for it all out of their own pockets. But if a group of people come together, like a group plan from your parent’s employer, and each agree to pay a monthly amount of money, called the premium, the “risk” is spread out over the whole group. This protects everyone from high healthcare costs because it is shared by all.

Why do I need health insurance?
Without insurance, medical bills can be pile up and be very costly. Your health insurance can give you peace of mind in knowing you are protected from most of these costs.

What happens if I don’t have insurance?
You have a primary immunodeficiency disease—you absolutely need insurance to see your specialist, to have your treatments and to manage you overall health!

Under new legislation, the Affordable Care Act (ACA), you will have to have insurance by 2014. If you do not have insurance, then you or your parents may face a penalty. Be sure to talk with your parents about making sure you have insurance coverage.

How do I 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.
  • 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

Make sure you talk with your parents about your health insurance. You don’t have to know everything, but the more you know, the better prepared you will be in the future!

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