Understanding Health Insurance for Cancer Treatment

Community // September 6, 2017

Combing through health insurance policies is almost certainly not something you want to spend your afternoon doing. They tend to be lengthy, complicated, and oftentimes downright difficult to understand documents that can be a pain to get through. While it’s perfectly understandable that most people want to put it off, as a cancer patient your health insurance policy is one of the most important parts of your care.

The cost of cancer treatment increases with each passing year, making financial planning a crucial element of cancer care. Having a good health insurance plan is one way cancer patients can help manage the costs of their care and avoid unexpected medical bills.

Health Insurance Basics to Keep in Mind

There are thousands of different policies you can choose from, but how do you know which one is right for you? To simplify things, start off with the basics.

Your Rights as an Insurance Buyer

Most people have health insurance through their employers or government programs, like Medicaid or Medicare. But if you’re purchasing your own insurance or considering getting add-on insurance, it’s important to understand your rights and expectations to have of the policies you’re considering.

Insurance Buyers' Rights

  • You cannot be denied insurance because of a condition you had before you applied for insurance, known as a “pre-existing condition,” which can include a cancer diagnosis.
  • Insurance companies cannot put a limit on how much they pay for care in your lifetime, which is especially important for cancer survivors whose health needs extend well beyond initial treatment.
  • A company cannot cancel your insurance if they find a mistake in your application.
  • Consumers must be given a summary of benefits, which is a short and easy-to-understand document that lists exactly what you will be covered for.

Most of these rights came through the Affordable Care Act (ACA), otherwise known as Obamacare, which passed in March 2010. Though it doesn’t solve every coverage issue for cancer patients, it did help mitigate some of the concern of having coverage dropped or denied because of a cancer diagnosis.

However, many policies were considered “grandfathered in” to old rules because they were in effect before the bill’s passage. In these cases, new rules laid out by the ACA would not have to be abided by unless the insurers adjusted the plan in the future. It’s unclear how these rules will change in the future under the Trump administration, though hopefully cancer patients and others won’t lose some of these rights that help protect their coverage.


Coverage refers to all of the medical services that your insurance provider will pay for. In general, most plans will cover preventive care, annual checkups, and prescriptions. But for cancer patients, care goes far beyond these basics. Diagnostic tests, for example, may be covered to an extent but an insurer can deny coverage of additional tests for a second opinion.

A health plan may require that you only get care from specific doctors, specialists, hospitals, and clinics. Insurers will usually call these “in-network” partners, which can be a broad network or rather limiting for patients. Any healthcare provider outside of this network is called “out of network” and seeking care from such doctors or clinics will be much more expensive and some penalties may be applied.

This can become a burden for patients needing more specialized care, like those facing mesothelioma. Specialists for this rare cancer are much fewer than for more common cancers, and are located throughout the country. Finding a specialist considered in-network can become challenging, and force patients to seek less qualified care or face the added expenses of going outside of their network.

Out-of-Pocket Costs

In addition to the potential costs or penalties for any out-of-network care, patients should understand the regular out-of-pocket expenses associated with their individual plan.

Costs for medical insurance includes things like the monthly premiums, annual deductibles, co-pays, and coinsurance, which will all vary in the amount and frequency of payment. For example, a deductible is a baseline amount a policyholder will have to reach before the plan will take over costs, while a co-pay is a set amount a patient will pay each time for a particular service like a doctor’s visit.

Understanding these expectations for your plan can help avoid unexpected medical bills. Luckily, most plans today will also have a cap on how much patients are expected to pay, which can help keep costs a little more reasonable.

Learn about options to handle out-of-pocket costs for mesothelioma

Insurance and Clinical Trials

For patients suffering from mesothelioma, clinical trials can mean receiving the most promising treatment available and potentially extending survival. Patients typically have a very short life expectancy, and seeking a clinical trial can often be the best way to potentially overcome the odds.

Unfortunately, clinical trials may not have much coverage under certain policies. Costs of clinical trials are broken down into research expenses and cost of patient care. In general, health insurance will typically not cover any research related costs, like additional lab work. Federal law requires most health insurance plans to cover routine patient care costs under certain conditions.

Insurance Criteria for Clinical Trials

  • You must meet eligibility criteria for the clinical trial.
  • The trial must be an approved clinical trial, meaning it’s federally funded and researchers running the trial have submitted a form for FDA approval of the drug or treatment.
  • The trial does not involve out-of-network doctors or hospitals, if out-of-network care is not part of your plan.

In many instances, clinical trials have a sponsor that may help cover part or all of the related research expenses that health insurance won’t. But be sure to discuss this option with both your insurance provider and medical team to avoid unexpected expenses.

Overcoming Limits in Coverage

Regardless of how great an insurance plan may seem on paper, there will undoubtedly be some limitations in coverage. When facing already high and increasing costs of treatment, it’s important to understand some ways to overcome these limits and keep your medical bills more manageable.

Appealing a decision is one way to attempt overcoming health insurance limits. Keeping track of all your expenses, including secondary costs like travel and lodging, in addition to reimbursements from your insurance provider can help you make an appeal against a decision to not cover certain costs.

Supplemental insurance can be another way to help cover the costs of cancer care. These plans can help cover the additional expenses not covered by your primary plan or help cover out-of-pocket costs. These supplemental plans, like disability insurance or long-term care insurance, will vary with coverage and qualifications, but may be worth exploring in some cases.

For mesothelioma patients, there also may be other avenues of financial assistance available beyond insurance that can help cover the costs of treatment. Understanding your rights and knowing the options can greatly ease the financial burden of a mesothelioma diagnosis.

There is a lot of information to go through when it comes to healthcare plans, but the importance of understanding your individual insurance coverage can’t be understated. Don’t be afraid to seek help by reaching out to your provider, as well as speaking with your medical team to avoid any surprises along the way.