Questions about your coverage

Whether you are newly diagnosed with cancer or facing choices of new or additional treatment advice, review your policy for clarification of benefits available regarding healthcare providers. Providers of medical care means the healthcare provider managing your medical plan, as well as the facility where that care is delivered. Review all of your covered benefits. Get the most current copy of the provider membership directory. Read it to be sure the providers you want to use are included in it. Or you can also check online to see if certain providers are included.

Read through the questions and points of discussion below. They may help you solve possible problems.

What do the words usual, customary, and reasonable mean? Is there a limit to the coverage for my particular type of cancer or its treatment?

Usual, customary, and reasonable is often abbreviated on insurance forms as UCR. This is a method of figuring out payment the insurance company will allow for a claim. UCR is determined by the insurer. This is done by comparing charges of providers of care with those of like providers of service in the same region or community.

The extent of benefits the insurance company will cover for your particular type of cancer is defined under Limitations. They are important to understand:

• Limitations are restrictions placed on a benefit. Often this refers to the number of times for use or the circumstances of use for a certain service or treatment.

• Exclusions are those services not covered at all. Excluded services can't be accepted as within the scope of medical practice, conditions not considered related to health or illness, or may be specific services excluded from the plan by request of the plan contract parties. This is generally the insurance group health agent and the group or employer. Experimental procedures as defined by the insurance company may be found in the list of exclusions.

How is experimental care defined and funded?

When choosing a plan, look closely at the marketing materials from your plan and your employer. See how the plan defines experimental care, and under what conditions the plan might cover such care. This is very important for cancer patients who are joining a new insurance plan. Or for consumers who believe they are at high risk for the disease because of a strong family history of cancer. If the plan's materials don't clearly define the term and how the plan uses it, you can ask your employer to see the contract with the plan. You can also call the plan and ask plan administrators to give you information on the plan's coverage of experimental care, such as use of off-label medicines and care in clinical trials, which are discussed in greater detail below, and guidelines on how the plan decides what care is experimental.

Some people in managed care plans have reported problems getting access to care because their plan considers a particular product or service experimental. When plans deny coverage for a service on this basis, the plan won't pay for the care. Most managed care plans routinely exclude experimental care from coverage in their contracts.

While there is no widely accepted and used definition of experimental care, plans typically regard it to mean that the medical benefit of a particular service has not been proven to the plan's satisfaction. Each plan defines the term as it wishes and may apply it differently from contract to contract. Some of the things that plans often exclude from coverage as experimental are the following:

• Off-label use of some medicines. In some cancers, healthcare providers and patients want to use a medicine for a diagnosis other than what the medicine is approved for by the FDA. Plans make case-by-case decisions on whether to cover off-label use of the medicine. They may deem some off-label uses experimental, if the plan believes there isn't enough scientific basis to justify it.

• New tests or treatments. As medical technology produces new services for cancer patients, managed care plans evaluate these new services to make policy decisions about what they will cover and pay for. They review published medical studies of the new test or procedure and government approvals (where applicable) and consult with leading oncologists. After this review, if the plan's administration believes that a new test or procedure has not been sufficiently evaluated, or its effectiveness is uncertain, the plan may designate the service as experimental and refuse to provide coverage and payment.

• Clinical trials. The Affordable Care Act requires that insurance pay for all of the healthcare services related to the clinical trial beginning after Jan. 1, 2014.  Insurance started before Jan. 1, 2014, can limit or even stop paying for your healthcare.

The issue of whether something is or is not experimental is not black and white. Plans, patients, and healthcare providers often disagree about whether a service, such as a bone marrow transplant, is an experimental treatment for a particular diagnosis. There have also been many state and federal court cases in which patients and healthcare providers have challenged plans' decisions not to cover and pay for care of a plan labeled experimental, but which the patient and healthcare provider believed appropriate. The courts have ruled that whether a service is or is not experimental may depend not only on published medical studies, but also on whether the healthcare providers in a community believe it is appropriate for a particular diagnosis, as well as expert opinion. Thus, standards of care vary around the country. If a managed care plan refuses to cover and pay for a treatment or test on the grounds that the service is experimental, consumers and their healthcare providers need to work closely together to challenge the decision.

When consumers and their managed care plan disagree over whether a test or treatment is experimental, consumers can appeal the plan's decision. This process starts with notifying the managed care plan. All managed care plans have an appeal process for reviewing denials of care. Consumers should file an appeal by writing a letter to the plan, and get a letter supporting their position from their healthcare provider. The healthcare provider also should submit to the plan copies of medical studies and expert opinion that support the appeal.

If a consumer and a plan can't resolve their differences, the consumer may want to consider filing a complaint with a state regulatory agency, such as the state health department, insurance department, or attorney general's office. A complaint to these agencies should include copies of all correspondence with the plan and copies of relevant medical studies. The state agency may be able to help mediate a resolution to the complaint, or it may intervene directly on the consumer's behalf if it discovers that the plan is not sticking to the terms of its contract with you or is violating a provision of state law. State laws vary in how much authority these agencies have over managed care plans.

In some cases, consumers need legal help, and might consider filing a lawsuit against the plan to get the care they need. Consumers in a self-insured plan (employers or plans can identify if they are self-insured) can't turn to state regulatory agencies for help. They need to speak with a lawyer who has experience helping consumers pursue complaints against self-insured plans. Self-insured plans are regulated by the federal Department of Labor, which generally does not help consumers with complaints over a denial of care on the grounds that it is experimental.

An ethics committee is now part of the formal review system in many managed care organizations. These committees may have medical and legal representatives, ethicists, and other healthcare providers as members. One of the functions of an ethics committee is to review cases in order to develop coverage policies and criteria for benefit application.

What questions need to be answered to define breast cancer coverage?

If you have breast cancer, it's important to find out if these are covered as part of your benefits:

• Treatment for recurrence of the primary cancer

• Wigs and hair pieces, breast prosthesis

• Surgical repair of both breasts even if single mastectomy covered (breast reconstruction)

• Counseling or supportive services

• Coverage for new or innovative therapies and biologics

• Genetic testing for inherited breast cancer, such as BRCA 1 and BRCA 2

• Contralateral prophylactic mastectomy

• Molecular or special testing on the tumor to determine recurrence risk (Oncotype DX, Mammoprint)

Is the healthcare specialist you want available?

Some policies limit your access to medical care to healthcare providers listed in the Provider Membership Directory. This publication should be available from the customer service department of the insurance company. Get the most current copy available. Be sure the specialists listed in the directory are ones with expertise in treating your particular problem and that they are available to you at the time you need them. Confirm with your employer's benefit manager and with the customer service department of the insurance company whether this specialist is included with your plan. Call the healthcare provider's office directly to verify what you have been told by the plan representative and make your appointment. Once you are receiving treatment from the specialist, check from time to time that they are still a participating provider in the network. Don't assume the Provider Membership Directory stays current or accurate for any length of time.

What is the procedure if you need to have tests, to see a specialist, or to be hospitalized?

Most health maintenance organization (HMO) plans require you to get a referral from your primary care provider to see a specialist or receive special tests and procedures. Plans may vary in the process. HMOs, preferred provider organizations (PPOs), and most fee-for-service plans require approval before admitting patients to the hospital. This is known as precertification. Precertification has a preset list of guidelines for hospital admission and length of stay in the hospital. You may want to ask the plan representative what those guidelines are and how many days are approved for a planned hospitalization. Emergency hospitalizations often have added or different guidelines. Check your plan.

If you are approved to have a certain type of procedure or treatment, ask where it can be done. HMOs may use only certain hospitals or a designated medical center as the only place you may go to have a certain treatment.

What if the primary care provider or the plan won't give approval for a referral to a specialist you request?

If your primary care provider or the plan administrator refuses to allow the referral or services you believe you need, find out how you may appeal the decision. The appeal or grievance process is defined in your health plan.

What questions do you need to ask your employer if you become totally disabled?

If you become totally disabled from cancer and can't return to work, check for answers to the following questions from your employer benefits manager:

• How long will the policy stay in effect during a medical leave of absence?

• How much of the premium must you pay?

• Are benefits changed or reduced while on disability?

• If you become eligible for medical disability, will the managed care plan agree to become your secondary insurance?

• What are the short-term benefits available through the company disability coverage?

• What are the long-term benefits available through the company disability coverage?

• Are there specific services or benefits excluded from coverage through the disability plan?

• Is there a case manager who can work with you to help with your insurance and with the healthcare system?

What is the role of utilization review?

Utilization review (UR) is a process by which an insurer reviews the care a patient receives to assess if it was appropriate and provided in a cost-effective manner. UR is most often associated with indemnity insurance plans. But it's also used in other forms of managed care, such as HMOs and PPOs. In all these cases, UR is a means of controlling the use of services by patients, and thus, the costs of care. Managed care plans use UR in a number of ways:

• Assess hospital lengths of stay, and keep patients in the hospital no longer than is necessary

• Limit the number of visits a patient makes to a particular healthcare provider, for example a specialist

• Choose the setting in which a patient receives care, such as inpatient versus outpatient care

• Manage catastrophic illness, to help coordinate the care provided and to move the patient along from 1 phase of care to the next.

Ideally, UR should help a consumer get the best care at the best price in the right setting. Consumers in managed care plans can appeal decisions by the plan's UR departments that they believe are inappropriate. They should work with their healthcare provider to document for the UR department their disagreement with the decision and outline why another treatment choice is preferable. In fact, under the Affordable Care Act, when treatment is denied, you have the legal right to ask for an internal review. If this appeal is denied, you can legally ask for an independent, external review. This right applies to plans created after March 23, 2010. Finally, if needed, consumers can also file a complaint with their state agencies, such as the health or insurance departments, or the attorney general's office.