How to Finance and Find Funding for Mesothelioma Treatment
Put simply, all cancer care is expensive—and mesothelioma care is no exception. If you are a mesothelioma patient or loved one, you have likely started to experience sticker shock from the sometimes-outrageous costs associated with mesothelioma treatment.
What kind of costs are commonly associated with mesothelioma?
First, let’s talk cancer treatments themselves.
First-Line and Experimental Treatments (including follow-up and ongoing appointments and monitoring): Treating mesothelioma usually involves some combination of surgery, chemotherapy, radiation, and/or experimental treatments, all of which tend to be very expensive. Some patients require multiple rounds of treatment, which only multiplies treatment costs.
- An 8-week round of chemotherapy can cost $30,000-$50,000.
- Surgical procedures may cost around $30,000-$40,000
- A course of radiation treatment averages out to around $8,000-$12,000.
Since mesothelioma is a very rare cancer, treatments tend to be highly specialized, which can drive the costs up even further. However, treatment for mesothelioma is highly individualized, and is catered to each patient’s case—meaning that it may include varying amounts of treatment types and varying durations of treatment. It is therefore somewhat difficult to say what the “average” cost of mesothelioma treatments are, since they may include a wide variety of different treatment combinations with a wide variety of accompanying costs.
For a point of reference, we can look at the average cost of general later-stage lung cancer treatment—which, according to the American Cancer Society, costs $68,000 on average. Even this metric is subject to variation: the ACS specifies, for example, that utilizing immunotherapy can skyrocket the costs to over $100,000.
Patients with insurance are responsible for less than the full sum of these treatments—though how much they will be responsible for out-of-pocket depends entirely on their insurance plan, and on the specifics of their treatment.
In addition to the treatments mentioned above, there are many other costs which might arise during the course of mesothelioma treatment. These may include:
- Hospital stays: Treatment and disease complications as well as other factors may lead to hospitalization, whether for shorter or more extended periods of time. These hospital stays often incur significant costs.
- Diagnostic testing, lab work, imaging, and biopsies: There are many different types of diagnostic tests for mesothelioma, all of which have different pricing. It is standard, however, for diagnostic testing to rack up thousands of dollars in costs before insurance. Mesothelioma can be difficult to diagnose, and the average mesothelioma patient will require multiple tests before a definitive diagnosis can be established.
- Palliative procedures: Mesothelioma patients often undergo palliative procedures in order to manage their mesothelioma symptoms, such as pleurocentesis/thoracentesis (draining of fluid from around the affected area). These procedures can be relatively expensive and may or may not be covered by insurance.
- Prescription medications: Mesothelioma patients are often prescribed medications to deal with symptoms and to improve the effectiveness of treatments. These medications may or may not be covered by your insurance and may be very expensive.
- Travel costs: Many patients travel for mesothelioma treatment, whether this means commuting in a car every day, or traveling to another state or country for care. Expenses can add up quickly, including the cost of meals, car rentals, plane, bus, and/or train tickets, gas, and lodging.
- Home health aide costs: Some mesothelioma patients require the assistance of a home health aide to improve their quality of life and help them with their healing. HHAs may or may not be covered by insurance.
- Mobility devices, medical furniture, and accessibility renovations: Mesothelioma patients often have mobility challenges and may require the use of mobility devices like a wheelchair, and/or medical furniture, for a significant portion of their treatment. In some cases, renovations must be made to a mesothelioma patient’s home for accessibility (i.e., installing a wheelchair ramp).
- Specialized diet, vitamins, and supplements: Mesothelioma patients often eat specialized diets and begin taking a variety of vitamins, minerals, and supplements in order to support the treatment process. This may result in a significant increase in food-related spending in the patient’s household.
- Mental health services: It is highly recommended that mesothelioma patients and their loved ones utilize mental health services, support groups, and other form of psychological care. While some services are offered at low or even no cost to cancer patients, private mental health services may come with a significant price tag, which may or may not be covered by your insurance.
- Complementary therapies: Many mesothelioma patients utilize a wide range of complementary therapies alongside first line treatments, such as acupuncture, reiki, homeopathy, yoga, hypnosis, and/or massage. Like mental health services, while some of these therapies are available at low or no cost to cancer patients, others may be pricey.
- Rehab, assisted living, and/or hospice care: Some mesothelioma patients require admission into a medical care facility, such as rehabs, assisted living facilities, or hospices, during their treatment. These facilities are very expensive, and require significant maneuvering to be covered by insurance.
In addition, patients and their loved ones should factor in lost wages, the costs incurred by having to take time off of work. Usually, going through mesothelioma treatment means that a patient and sometimes their caregiver(s) will not be able to work or bring in income. That lost income should be considered a mesothelioma expense.
So, how do I afford all of this?
That’s a completely reasonable question, and you aren’t the only person asking it. The average American family has less than $400 in savings for emergency expenses, and most mesothelioma patients are unable to pay the tens or even hundreds of thousands of dollars that rack up over the course of treatment on their own.
Thankfully, there are options and resources to address this issue.
- Health Insurance: The first thing you need to consider when evaluating your financial assistance needs is where you stand with insurance.
If you have insurance, many of the costs incurred by mesothelioma may be covered by your policy, significantly reducing the portion of the costs that you are responsible for paying. However, even the best insurance policy will require you to pay some amount of co-pay, deductibles, and/or co-insurance in addition to your premiums. Generally, the more comprehensive your treatment is, the less of it will be covered by your insurance company.
In 2020, the American Cancer Society reported that for the average lung cancer patient on an individual marketplace plan, out-of-pocket costs were around $12,046 annually (while costs without insurance were over $140,000 annually). Most hospitals and cancer treatment centers have an insurance specialist or medical social worker who can advise you about your insurance coverage.
If you do not have insurance or are under-insured, you may initially be held responsible for the entire bill out-of-pocket (though some of the resources below may help significantly mitigate the costs). While treatment centers, hospitals, and doctors often provide discounts to self-pay patients, those “discounts” usually do not offset the inflated prices driven up by insurance companies. Still, carefully going over and negotiating all of your medical costs, especially with the help of a specialist, can yield much more significant savings on mounting bills.
After evaluating your insurance situation, you can consider additional options for treatment funding, and for lowering the cost of treatment generally. These include:
- Medicare: Most mesothelioma patients qualify for Medicare, a federal health insurance plan for people 65 and older. Medicare may significantly cut down on the costs associated with your mesothelioma treatment and care.
- Medicaid: People with lower income (or people whose income and assets have been significantly depleted by medical costs) may qualify for Medicaid, a federal and state program that helps pay medical costs. Medicaid plans often offer more expansive coverage than Medicare plans, including nursing home and personal caretaker coverage.
- Social Security Disability Insurance (SSDI): Some mesothelioma patients may qualify for SSDI (sometimes simply called “disability” or “social security”), a federal insurance program that provides monthly benefits to eligible participants. SSDI could significantly reduce the medical costs associated with mesothelioma.
- VA Benefits: Around 30% of mesothelioma patients are veterans. These patients may be eligible for help through Veterans Affairs (the VA), which offers its own form of monthly disability compensation that may include financial compensation, medical costs/medical care, and housing.
- Workers Compensation: Mesothelioma patients who developed their condition as a result of workplace exposure to asbestos may be eligible for workers’ compensation benefits. It should be noted that accepting these benefits generally prevents patients and their families from pursuing legal avenues to compensation, so patients should always consult with professionals before agreeing to accept workers’ compensation for mesothelioma.
Charity/Non-Profit Resources: There are a number of charities and nonprofit organizations that offer financial help and other resources to mesothelioma patients. Some cover the cost of specific treatments or expenses, while others are more comprehensive.
A full range of resources available to you or your loved one can be explored with a cancer funding specialist. However, some of the common types of this sort of resource include:
- Grants: There are many organizations which offer money for various aspects of treatment. Some offer grants for travel, lodging, food, gas, and other expenses that arise when traveling for treatment. These are sometimes called “travel grants”, and are offered in addition to direct services like those provided by the American Cancer Association’s Hope Lodges, where mesothelioma patients and their loved ones can stay for free when traveling to another city for treatment. Others offer grants to pay for cost-of-living expenses within a patient’s home, such as rent and utilities, or grants to pay for specific parts of treatment itself. Organizations like CancerCare, the Patient Advocate Foundation (PAF), and the HealthWell Foundation, and the Cancer Financial Assistance Coalition (CFAC) can help you navigate resources you or your loved one may qualify for.
- Financial Aid at Individual Hospitals and Treatment Centers: Often, individual hospitals and cancer treatment centers have programs dedicated to providing or supplementing the cost of care for those who cannot afford it. Ask to speak with a hospital/cancer center financial counselor or social worker for more information on these programs.
- Crowdfunding: While asking for help can be very difficult, it has become increasingly common for mesothelioma patients to supplement the cost of their care with GoFundMe and similar crowdfunding efforts. Many of these efforts are very effective and can significantly reduce the burden of medical care and associated costs, even with other forms of financial aid.
Legal Resources, Damages, and Compensation:
- Asbestos Trust Funds: When companies that produced and exposed their workers to asbestos were initially sued, many of those companies went bankrupt. As part of those bankruptcies, the companies were compelled to establish trust funds to financially protect anyone who has been exposed to asbestos and subsequently developed mesothelioma (or other asbestos-related medical conditions). There is currently over $30 billion available collectively between several of these asbestos trust funds.
Many mesothelioma patients are eligible for payment from at least one of these trust funds, and in some cases from several of them. Money from accepted claims can be used to cover any and all medical and living expenses incurred during the course of a patient’s condition and treatment.
In order to file a claim, patients must prove they were exposed to a given company’s asbestos products. A legal professional specializing in mesothelioma trust funds can help you discern your eligibility and can drastically improve your chances of filing a successful claim.
- Mesothelioma Lawsuits and Settlements: Many mesothelioma patients have viable lawsuits against various parties who are responsible for their exposure to asbestos, even if the exposure happened decades ago.
Most mesothelioma lawsuits are personal injury and/or wrongful death lawsuits.
As soon as a mesothelioma patient is diagnosed, they can file a personal injury lawsuit against the parties responsible for their asbestos exposure. If a mesothelioma patient has passed away or passes away during the course of a personal injury suit, specific loved ones (their spouse/life partner; their children and stepchildren, their parents and grandparents, the executor of their estate, and in some cases any financial dependent) can file a wrongful death suit on their behalf.
The vast majority of these cases end in settlements, which are calculated to pay for all costs associated with the patient’s care, as well as compensation for their pain and suffering (and that of their loved ones) and any other damages. Settlements yield an average amount of $1 million. The small percentage that go to trial (around 5%) tend to yield more, averaging at around $2.4 million.