Mesothelioma and Health Insurance Coverage

There’s no doubt that health insurance helps mesothelioma patients pay for treatments, but there may be limitations and other complications involved in the claims process.

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Good health insurance can make a big difference with a diagnosis of mesothelioma because it allows a patient to focus on specialized treatment without an overwhelming financial worry.

To varying degrees, health insurance should make mesothelioma treatment affordable. However, health insurance is a complex, controversial topic in America today.

A 2017 Milliman Research Report looked at the cost of treating lung cancer, which is comparable to pleural mesothelioma. With employer-sponsored health insurance, the average total cost was $248,000 after three years, with patients paying an average of $9,000 out of pocket.

That same year, a JAMA Oncology study reported average out-of-pocket costs for cancer patients with Medicare. Cancer patients with only basic Medicare paid an average of $8,115 per year. Annual out-of-pocket spending was around $5,500 for those with additional private or employer-sponsored insurance.

Health insurance helps make it possible to get the tests and procedures, see the doctors who can help, and receive the medical care that can prolong life.

It is a virtual necessity today to help offset the high costs associated with cancer care, particularly with a rare cancer like mesothelioma, which requires a personalized approach.

How Does Health Insurance Help?

Health insurance comes in a variety of ways, serving as a contract between a patient and an insurance company that has agreed to pay a portion of the medical costs.

Plans today will differ on how much of the total cost it will pay or exactly what it will cover. Yet most are designed to protect against serious injuries and diseases, providing financial help for a life-changing cancer diagnosis.

What Does Insurance Actually Cover?

Insurance coverage depends on each particular plan, but most of the diagnostic testing and treatments associated with mesothelioma should be covered in the plan. There are often high deductibles to reach and copays — both of which add to the cost of care — but having health insurance is considerably better than not having any coverage.

Cost estimates for care could vary, depending on many factors, but they typically are out of reach for most families without health insurance or other ways to pay.

An eight-week cycle of chemotherapy could cost $30,000. Monthly radiation treatments can be more than $2,000. An average surgery, which doesn’t include the largest, most aggressive ones, could cost $40,000. Having insurance will cut those costs significantly or eliminate them completely.

Private Insurance

Private health insurance options are either group health plans or individual health plans, but they work in a similar fashion.

Group plans cover many people, usually employees and dependents of those workers. The employers often pay a portion of the monthly premiums to provide their workers coverage.

The individual plans cover individual workers, often dependents, and are sold directly by an insurance company. Higher premiums generally mean more complete coverage.

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Public Insurance

Medicare and Medicaid are the largest federally funded public health insurance programs in the U.S., although both are administered by the states which adjust them accordingly.

Medicare typically covers those over the age of 65 who have paid into the system throughout their working lives. There are four main parts in Medicare that will determine what is excluded or included in each person’s coverage:

  • Part A: Everyone involved receives this. It covers inpatient care in hospitals, inpatient care in a nursing, hospice or home facility.
  • Part B: Costs an additional premium each month and includes doctor visits, laboratory costs, medical equipment and ambulance care.
  • Part C: It also costs an additional fee and is a combination of parts A and B. It’s provided by private insurance companies as supplemental insurance.
  • Part D: Helps pay for prescription drugs.

Medicaid is designed to cover the cost of medical care for those below a certain income level who did not qualify for Medicare. Not all health care providers accept it, and the benefits can vary from state to state, but mesothelioma treatment can often be obtained.


Many health insurance plans have a broad network of providers that offer a variety of choices for your care. Others have narrower networks and choices are limited, which becomes a problem, but not a door closer.

Mesothelioma presents a unique set of health insurance problems because it is so rare. Few medical professionals are familiar with it and comfortable treating it effectively. To get the best care, patients should locate a mesothelioma specialist, even when it means going outside the network – and meeting a higher deductible – to do it.

Talk to your local oncologist or your primary care physician and explain your insistence to see a mesothelioma specialist. They can help facilitate the approval to go outside of network if necessary. Medicare and Medicaid patients who need to go outside their state will encounter additional hurdles, but they are not usually insurmountable. Mesothelioma Guide

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What Happens When a Claim Is Denied?

If a claim is denied by your insurance company or you are told your coverage doesn’t include a particular mesothelioma specialist, don’t stop there. Don’t get discouraged. And don’t take no for an answer. Be your own advocate.

Medical Outreach Director and Patient Advocate Missy Miller said: “a lot of times people just give up when they are told no.”

“But you can’t give up. You resubmit the request. You go back to your doctor, and you talk to him about it,” Miller said. “We work with patients to help get them approved.”

Affordable Care Act

The Affordable Care Act (ACA) helps low-income families acquire health insurance through government subsidies. It also set minimum health insurance standards that include cancer screenings, cancer treatment and follow-up care.

The ACA ensures cancer patients participating in clinical trials will be covered. It also removes annual and lifetime maximums that insurance plans would pay for cancer patients. It prohibits insurance companies from dropping patients with life-threatening diseases like mesothelioma, and it allows patients with pre-existing conditions, like cancer, to obtain coverage with a health insurance plan. Mesothelioma Guide

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VA Benefits and Insurance

Military veterans often are eligible for benefits under the U.S. Veterans Health Administration, a national network that includes Dr. Robert Cameron in Los Angeles and Dr. Abraham Lebenthal in Boston, two prominent mesothelioma specialists.

Veterans account for an inordinate amount of mesothelioma diagnoses. They are eligible to see mesothelioma specialists wherever they choose, provided their local doctor agrees. And their out-of-pocket expenses should be minimal in the VA system.

Insurance and Diagnostics

Not only is mesothelioma difficult to treat, but it also is difficult to diagnose, which means multiple tests to confirm a diagnosis. The early symptoms often mirror those of less serious illnesses, which lead to a battery of tests, many of which must be approved by insurance plans.

The diagnosis might start with X-rays, followed by an MRI and later CT scans and PET scans — all designed to eliminate other possible causes. Fluid and tissue samples are later obtained through biopsies to confirm any suspicions of mesothelioma. Those can be done multiple ways, depending on the doctor performing them.

Biopsies can be done through a thoracoscopy, which involves a camera-equipped tube that is inserted through the chest wall or a fine needle aspiration. There also are excisional biopsies, which include tumor cell samples.

A mesothelioma specialist, who knows exactly what to look for, often can streamline the process, making the insurance issue easier.

Find the Best Mesothelioma Specialist

Finding a mesothelioma specialist often requires out-of-network and out-of-state travel to find the best possible medical care, which can complicate health insurance. But finding a top specialist will be worth the extra step and cost.

There are many examples of mesothelioma patients extending their lives because they were willing to fly across the country to see thoracic surgeon Dr. David Sugarbaker, who is now at the Baylor University Lung Institute in Houston.

Others have seen Dr. Raja Flores at Mount Sinai Hospital in New York, or Dr. Rodney Landreneau at Allegheny General Hospital in Pittsburgh.

“To get the best treatment, it’s critically important to find a mesothelioma specialist,” said Moffitt Cancer Center’s thoracic surgeon Dr. Jacques Fontaine, whose patients travel across the Southeast to see him. “It can make such a difference in terms of survival.”

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Last Modified January 14, 2019

Lawyer and On-Site Legal Advisor

Joe Lahav is a lawyer and legal advisor at The Mesothelioma Center. He graduated with honors from the University of Florida College of Law in 2000, and he's licensed to practice in Washington, D.C., and Florida. Joe lost his mother to cancer, and he understands the emotional toll mesothelioma can have on families.

Walter Pacheco, Managing Editor at
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5 Cited Article Sources

  1. Dieguez, G., Ferro, C. & Pyenson, B. (2017, Apr. 11). A Multi-Year Look at the Cost Burden of Cancer Care. Retrieved from:
  2. Narang, A. & Nicholas, L. (2017, June). Out-of-Pocket Spending and Financial Burden Among Medicare Beneficiaries With Cancer. Retrieved from:
  3. American Cancer Society. (2015, February 16). Government-funded health plans. Retrieved from:
  4. American Cancer Society. (2015, February 16). Covering the costs of cancer treatment Retrieved from:
  5. National Institutes of Health. (2015, February 6). Economic Impact of Cancer. Retrieved from:

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