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Navigate Insurance

Health insurance can be a helpful—often vital—resource for you as you live with lupus. But figuring out how to use your benefits to the fullest can be tough, even if you’ve lived with this chronic illness for many years.

I’m thankful for the benefits I get through my work. But sometimes it’s so hard to understand all the details.

What’s covered?

Every plan is different. What’s the best way to truly understand what’s covered for you? Call your insurance company and discuss it.


Make sure you’re clear on what they’ll cover, or what they won’t, and why. For example, a friend’s plan may pay 100% of fees for certain lab work while yours doesn’t. Or yours may require a small co-payco-pay: a set amount ($20, for example) you pay for a covered service, such as a doctor’s appointment or medication. This amount only applies after you've paid your deductible. for appointments with a specialist,specialists: healthcare providers with additional training or certificates related to certain diseases or conditions. while your sister’s requires her to pay in full.


As you talk to your insurer, ask for your plan’s Summary of Benefits and Coverage. It includes details about covered benefits and any limitations or exceptions.

Medications + insurance

Each insurance plan keeps a list of prescription medicines that are covered. This list, known as a “formulary,” is often broken down into tiers. The benefits, or amount of the cost of the drug that’s covered, is different at each tier.


There may be similar drugs at different price tiers. You may find that a medication your doctor has prescribed is on a high tier on your plan’s formulary. If so, consider asking your doctor if they can make another choice at a lower tier.

Keep in mind: You and your doctor may feel a medication on a higher tier is the best choice for you. If so, ask your insurer for an exception. Call your insurance company or visit their website for the paperwork you need for this process.

Formularies can change. Check your insurance plan’s website often to watch your medications. That way you won’t be surprised by any unexpected costs.

Open enrollment time

When open enrollment rolls around, do your research! Use the information provided by your employer to find a plan that works for you, your family, and your situation. Or, you may also want to look outside of job-based insurance plans by researching your available options in the Health Insurance Marketplace.


Review each plan’s network, or list of covered facilities, doctors/providers, and suppliers. Look to see if the doctors you visit most, such as your rheumatologist, ob-gyn, or family doctor, and the pharmacy you use are in-network. Out-of-network services/providers may require additional out-of-pocket costs, and those can add up quickly.


Also review each option’s formulary.formulary: the list of prescription medicines covered by a health insurance plan. This will help you understand how much of your prescription medication costs will be covered. Look for the medications you currently use or any that you are considering to help you choose your plan.

An advocate for you

Ask if your employer offers a health advocacy service. These services include nurses, counselors, financial resources, and other tools to help you navigate the many aspects of the healthcare system, including your insurance plan.

Learn the language

When you’re on the phone with your insurance company, does it sometimes feel like they’re speaking a foreign language? The next time you call, have this glossary open and ready!

  • Annual Limit

    Annual Limit: the total amount your insurance company will pay in a year. It may also include the number of visits that will be covered for a particular service.

  • Coinsurance

    Coinsurance: a percentage of the cost of a service (such as an ER visit or prescription) that a patient must pay for with their own money (out of pocket). Because it isn’t a set number of dollars, it can be hard to plan for this expense.

  • Co-Pay

    Co-Pay: a set amount ($20, for example) you pay for a covered service, such as a doctor’s appointment or medication. This amount only applies after you've paid your deductible.

  • Deductible

    Deductible: the amount you pay for healthcare services (such as a doctor’s visit) on your own before your insurance company starts to pay. The deductible resets to $0 at the beginning of each year. For example, if you have a $1,000 deductible, you will have to pay the first $1,000 of services yourself. After you pay that, you usually pay only a co-pay for the rest of the year.

  • Fail First

    Fail First: health insurers may require you to try a certain medicine before you can get the medicine your doctor had originally prescribed. This is sometimes called “step therapy.”

  • In-Network or Preferred Provider

    In-Network or Preferred Provider: a healthcare provider or facility contracted with your insurer to give you services at a lower cost.

  • Inpatient

    Inpatient: at its most basic, it means you’re admitted to a hospital or skilled nursing facility.

  • Open Enrollment Period

    Open Enrollment Period: a designated time when you can make changes to your insurance coverage for the following year. The time is set by your employer (for private plans) or the federal or state government (for non-group health insurance coverage).

  • Out-of-Network

    Out-of-Network: a healthcare provider or facility that does not have a contract with your insurer. Visiting doctors or hospitals that are out-of-network can cost more than visiting in-network ones.

  • Out-of-Pocket Cost

    Out-of-Pocket Cost: an expense that you pay for with your own money and that is not paid back to you by your insurance. These costs can include deductibles, coinsurance, and co-pays.

  • Premium

    Premium: the money you pay each month, quarter, or year for your health insurance.

  • Prior Authorization

    Prior Authorization: permission needed before a service or prescription is covered. If your plan requires prior authorization, for example, before you see a certain specialist, you must get your insurance company’s okay before the appointment.

  • Step Therapy

    Step Therapy: See “Fail First.”

  • Summary of Benefits and Coverage

    Summary of Benefits and Coverage (SBC): information about what is covered, what is excluded, certain costs, and other details of a health insurance plan.

  • Tier

    Tier: a level within a formulary.formulary: the list of prescription medicines covered by a health insurance plan The list of medicines covered is often broken down into tiers. Medicines in lower tiers are usually paid for with co-pay, typically ranging from $10 to $50. Medicines in higher tiers may require coinsurance.

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Ideas for the uninsured

If you are uninsured, contact your local health department to determine if there are any medical assistance programs available to you. Also, make sure to ask your doctors’ or hospital staff if they have any programs for uninsured patients.

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