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Managing Your Health Insurance

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Just as you will manage your relationship with your healthcare team, you also will want to manage interactions with your health insurance plan. If you don’t feel you can take this on yourself, get a family member or loved one to help you. Also, find out if there is a certain person in your hospital’s billing office who can answer questions about health insurance. Many hospitals now have patient financial counselors who can assist you as you interact with your insurance company.

With a cancer diagnosis, you may find that the health insurance plan you have doesn’t cover enough of your medical costs. It might make sense for you to consider switching to a plan that may have higher premiums, but will cover more of your costs over the long run. If you’re covered through Medicare but never purchased any supplemental insurance, this also might be something to consider. Without a “Medigap” policy or other secondary insurance, you are responsible for 20% of treatment-related costs. Generally, you would have to wait until an open enrollment period, which is the time of year that health plans accept new applicants. This can vary depending on whether you’re considering a job-based plan, a Medicare supplement, or an individual plan through the Health Insurance Marketplace. The Cancer Support Community has partnered with other cancer organizations to create The Cancer Insurance Checklist, which can help guide you in choosing a plan on the Health Insurance Marketplace.

Health insurance out-of-pocket costs

  • Deductible: This is the amount you have to pay for medical services each calendar year before your health insurance plan will kick in and cover a portion of your costs. Routine preventive care such as physicals and screenings may be covered no matter what. But for other types of services, you have to pay for a certain amount before your health insurance plan starts covering costs. If you have a $2,000 deductible, for example, you’d pay $2,000 before benefits kick in. If it’s $5,000, you’d pay that before benefits start.

    The clock starts over with each new calendar year. So, for example, if you meet your deductible in 2018 and your plan kicks in, the coverage turns off on January 1, 2019, until you meet your deductible again. Since cancer treatment takes place over time, the costs can add up quickly from year to year — especially if your plan has a high deductible.
  • Copayment: A copayment, or “copay,” is the amount you pay every time you visit a doctor’s office or use other services such as getting lab work done or filling prescriptions. If you haven’t met your deductible, you’ll pay the cost of the service set by your insurance plan. Once you’ve met the deductible, the copay is a fixed fee you pay every time ($20 or $40, for example). Your plan may have different copays for visits to specialists, other care providers, or lab tests or medications.
  • Coinsurance: Coinsurance is the percentage that you pay toward medical services after you’ve met your deductible. Depending on your plan, you might pay 10-, 20-, or even 30% of your medical costs, and the health plan covers the rest.
  • Medications: Health insurance plans often have a list of medications that are covered by the plan, known as a formulary. However, how much a plan will cover can often vary depending on the medication. For example, some plans won’t cover a brand-name medication if a generic version is available. Others won't cover more expensive chemotherapy medications — such as oral versions of drugs — if cheaper options are available. Some plans create “tiered” lists of medications, with higher-tier drugs requiring a higher copay or coinsurance. Get familiar with your plan’s formulary, or have someone help you with this.
  • Be aware that your plan also will have an out-of-pocket maximum for the year. Once your deductible, copays, and/or coinsurance payments hit that maximum, the plan will cover 100% of medical services that are included in its coverage. As with the deductible, the clock “resets” at the end of the calendar year. For 2018, the U.S Department of Health and Human Services defined the out-of-pocket maximum for an individual plan at $7,350. For a family plan, it is $14,700. Your plan’s out-of-pocket maximum may be lower, depending on how you purchase your insurance (on your own versus an employer, for example).
  • Out-of-network costs: Some plans have a network of approved or preferred providers who participate in the plan. If you go “out-of-network” to a doctor or other care provider who is not on the list, you’ll pay more or possibly have to cover the entire cost of service. And these costs are not counted toward your out-of-pocket maximum. Out-of-network expenses sometimes can crop up unexpectedly during hospital or other treatment visits when there could be a physician or other care provider who sees you but is not part of your plan. It's just something to be aware of as you work with different care teams.

Understanding your plan could help you feel more in control as you start treatment. Even if your out-of-pocket costs are higher than you thought they would be, you can take steps now to get help.

13 tips for working with your insurance company

  • Make sure you have an up-to-date copy of your plan's basic information (sometimes called a summary plan description). This will tell you how your plan works, its benefits, and how to file a claim. Also make sure you have accurate contact information for the insurance company.
  • If you buy your own insurance rather than receiving it as a benefit of your or your spouse's employment, make sure you pay your premiums on time.
  • Ask your insurance company if you can be assigned a case manager so you talk to the same person each time you call.
  • Take advantage of your health insurance plan’s website. By registering for online access as a member, it’s often easy to see the details of your plan, the healthcare services you’ve received, and how much your insurance company has paid vs. what you owe.
  • Your doctor may want to refer you to one or more specialists, such as a radiation oncologist or a reconstructive surgeon. Make sure these specialists are in your plan. For any in-hospital treatments, tell your team that you want to make sure that any providers who care for you are part of your plan. Sometimes, patients are surprised to get large bills from physicians who saw them in the hospital but aren’t accepted or preferred providers in their insurance plan.
  • For any follow-up testing, such as imaging or lab tests, make sure you’re going to a facility that is included in your insurance plan.
  • Know which procedures require a copayment and/or coinsurance and how much it will be.
  • Keep detailed records of all the claims you submit and note when they were submitted, whether they're still pending, and when they were paid. Again, the plan’s website might help do some of this work for you.
  • Keep copies of any and all paperwork related to your treatment, diagnosis, and insurance claims, including:
    • requests for sick leave
    • receipts
    • letters from your doctor, employer, and insurance company
    • letters you write to your doctor, employer, and insurance company
    • bills
    • summaries of phone calls to your insurance company, including the date, time, and the name of the person to whom you spoke
  • Know how you should pay for treatment. Does your doctor’s office or hospital bill the insurance company first? Or do you pay the bill and then get reimbursed?
  • If you're required to submit bills to your insurance company, try to send them in as soon as you get them. If you're recovering from treatment, ask a loved one or friend to help you.
  • If your insurance company denies a claim, talk to your case manager to find out why. Ask if and how you can file an appeal. Talk to the patient financial counselor or other person who handles insurance claims at your hospital or doctors’ office. This person often can help with the appeal process and provide any documentation your insurance company requires. Keep records of all your communications as you go through the process. It can be frustrating, but stay calm in any dealings with the insurance plan, as this can help increase your odds of success!
  • Ask about coverage for services such as home health visits, palliative care, physical therapy and rehabilitation, and mental health care and counseling. These may be important to your recovery, so it makes sense to ask whether your insurance plan covers them.

Understanding COBRA benefits

In the United States, if you change jobs during breast cancer treatment or lose your insurance coverage because you're working fewer hours, the COBRA (Consolidated Omnibus Budget and Reconciliation Act of 1986) allows you to temporarily stay in the insurance plan sponsored by your former employer. The same holds true if you’re covered through a spouse’s plan and he or she loses insurance coverage because of work stoppage or reduced hours, or your spouse passes away or you get divorced. The law only applies to group health plans maintained by private-sector employers with 20 or more employees, or by state or local governments. The law does not apply to plans sponsored by the Federal Government or by churches and certain church-related organizations. Some states do require COBRA for companies with fewer then 20 employees; check with your state for details.

The amount of time you can continue in your former plan through COBRA depends on the reason why you lost your coverage:

  • You get up to 18 months of COBRA coverage if you stop working or reduce the number of hours you work (or your covered spouse does).
  • You get up to 3 years of coverage if you lose coverage because of divorce or death.

It's important to know that COBRA coverage isn't automatic. You have to ask for it within 60 days of getting a written COBRA notice. This may not be within 60 days of when you stopped working or when your hours were reduced. It's a good idea to talk to your human resources representative as soon as you have a COBRA "qualifying event" such as working fewer hours. You also might want to talk to your insurance company to find out who needs to do what to make sure you have uninterrupted coverage. Get more information on COBRA benefits.

The rates for COBRA insurance are usually much higher than the rates you were charged as an employee or spouse. If you have trouble affording it, you can look for other options through the Health Insurance Marketplace at or by calling 1-800-318-2596 (TTY 1-855-889-4325). To qualify for special enrollment in a Marketplace plan, you must select a plan within 60 days before or 60 days after losing your job-based coverage. Some people use COBRA as a “bridge” until they can find a Marketplace plan that meets their needs.

If you've had health insurance for at least a year with no loss of coverage for more than a couple of months, the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA) allows you to switch jobs and be guaranteed health insurance through your new employer, as long as your new employer offers group insurance. HIPAA also guarantees that you can't be denied coverage because of a pre-existing health problem. Get more information on HIPAA.

The resources listed in this section are based in the United States and the regulations mentioned are U.S. regulations. Other countries may have different laws regulating insurance coverage and hospital operations. If you live outside the United States, ask your doctor about resources in your country.

Disability insurance

If you have disability insurance, you will face decisions about if and when you need to use it. Often this depends on what types of treatment you need, how long you will be in treatment, and the specifics of your diagnosis.

  • If you have short-term disability insurance, find out exactly what your benefits are. In some states, laws require that most employers provide short-term disability benefits for up to 26 weeks. Short-term disability usually pays you a percentage of your salary for a specified period of time. Some policies may require that you use up all your sick time and vacation days before you receive any disability benefits. Talk to your company's human resources representative so you know exactly what you will receive, when you'll receive it, and for how long.
  • Your employer isn't required by law to offer long-term disability insurance. Still, many medium- and large-sized businesses do offer long-term benefits for at least 5 years. A typical long-term disability policy pays about 60% of your salary and starts when short-term benefits have been used up. The length of time you receive long-term benefits can range from 5 years to life. Long-term disability policies vary widely. Talk to your human resources representative at work and find out if you're covered, what is covered, and how long you can receive payments. It's also important to know if your employer's plan considers other benefits you may be receiving (Social Security disability benefits, for example) when figuring out how much long-term disability pay you'll receive.

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