Financial toxicity, defined as economic consequences resulting from cancer treatment, is a complex source of distress in people living with metastatic breast cancer – equivalent to the toxic side effects of treatment. Addressing financial toxicity has been identified in the Alliance’s latest priority statement paper as a key area of focus in delivering the organization’s mission of improving the lives of people living with metastatic breast cancer.
A cancer diagnosis.
There are few life events as catalytic, jarring, and life changing – not just for the patient, but for their families.
According to the National Cancer Institute, around 2 million people in the US will get this diagnosis, or 5.5% of the US population. With cancer ranked as one of the most expensive medical conditions to treat in the US, the impact on American families can be devastating.
And, for those diagnosed with metastatic breast cancer, the effect is exponential. While Stage IV breast cancer remains an incurable disease, new therapies and drugs are increasing life expectancy and quality of life. But navigating the lifelong medical bills and additional costs associated with MBC is a significant challenge – one that hits even harder for those in marginalized communities.
“From co-pays and out-of-pocket medical expenses to lost income and childcare or eldercare expenses, the costs of a cancer diagnosis can accumulate quickly,” says Beth Burnett, Chair of the MBC Alliance. “In listening to people living with metastatic breast cancer, it’s clear this is an immense area of unmet need. As a collective dedicated to serving the MBC community, it is important for us to take action together to advocate for change, while amplifying the resources and education our members offer in this area.”
To unpack this crucial conversation, we sat down with Joanna Fawzy Morales, Esq. She is a cancer rights attorney, author, speaker and CEO of Triage Cancer, an MBCA nonprofit member organization that offers free education on practical and legal issues that impact individuals coping with cancer and their caregivers.
WHAT IS FINANCIAL TOXICITY?
Financial toxicity, a term coined in 2013 by researchers at Duke University, describes the financial side effects and impact of cancer treatment.
According to an Institute of Medicine report, “the costs of cancer treatments are escalating unsustainably, making cancer care less affordable for patients and their families and creating disparities in patients’ access to high-quality cancer care.”
That means many people living with cancer are forced to make choices between basic needs or paying for treatment – decisions that could mean the difference between life or death. Beyond that, the pressure of carrying an intense financial burden takes its own toll.
“Financial toxicity also refers to how the crippling cost of cancer treatment can impact physical, mental, and emotional health of the patient and their families,” says Joanna.
AM I AT RISK FOR FINANCIAL TOXICITY?
Financial toxicity is not a new problem. But despite years of conversation, there has been little progress in addressing this issue. In part, Joanna and her colleagues believe this is due to the intense focus on cost of care, rather than a holistic approach to addressing the many factors that contribute to financial toxicity.
The best time to prevent financial toxicity, she notes, is before getting a cancer diagnosis. That means it’s not just a topic for those living with cancer – it’s an area that deserves everyone’s focus.
Running a quick “health check” on these four contributing factors can tell you your risk for financial toxicity.
Do you have adequate health insurance coverage?
High out-of-pocket medical costs are by far the biggest contributor to financial toxicity. That means just getting healthcare insurance may not be enough to protect your finances. It’s preferable to find a plan that offers low co-pays – and essential to ensure you have a plan that caps out-of-pocket costs at an amount you will be able to pay, even if your income is impacted.
“The overall cost of treatment doesn’t matter for patients if there is enough health coverage, and a cap on out-of-pocket costs,” shares Joanna.
Do you have avenues to address loss of income?
Loss of income is another major contributor to financial toxicity that can impact the entire household. Many people living with MBC need to leave the workforce and go on disability. During cycles of intense treatment, a spouse or other close family member may also need to stop working, or work less, in order to be a caregiver.
Disability or long-term care insurance can help cover this gap. So can knowing your state’s laws on sick leave, family leave, unemployment benefits, and compensation for caregivers.
“Loss of employment, loss of hours, and not understanding employee rights is severely under-discussed when unpacking financial toxicity,” Joanna explains.
What is your existing financial health?
There is no blank check that arrives with a cancer diagnosis. Your current level of household debt, available savings, income and cash flow all play a role in how prepared you are to deal with financial stress.
”Financial toxicity affects all incomes and households, but if you are not in the best financial shape (when you are diagnosed), it will absolutely contribute to financial burden,” says Joanna.
Are you navigating major life changes?
A diagnosis of MBC is in itself a major life change, demanding an ongoing investment of time, energy and costs associated with medical treatment and care. When a diagnosis collides with other costly life transitions, from divorce to putting kids through college, it adds to financial stress.
“Life keeps moving regardless of a cancer diagnosis,” acknowledges Joanna. While costs may be avoidable, planning ahead, trimming where possible and keeping general financial health in good shape can help you be ready for the unexpected.
WHAT IF I’M ALREADY UNDER FINANCIAL STRAIN?
Financial toxicity is a slippery slope. It starts fast and becomes unmanageable extraordinarily quickly. But help is available.
“Though preventable, most of the patients who reach out to us are already inundated with financial burden,” Joanna shares. “But even then, there are many options, solutions, and opportunities. The most important thing for them to know is there is help out there.”
As a national nonprofit dedicated to providing free education on the legal and practical issues that impact both people diagnosed with cancer and their caregivers, Triage Cancer offers a wealth of information on its website that is freely available to the public.
The organization also provides free one-on-one support to individuals diagnosed with cancer, as well as caregivers and healthcare professionals, through its Legal and Financial Navigation Program – a service that is vital for people who may be overwhelmed by the many stressors and uncertainties that come along with a cancer diagnosis.
While many cancer nonprofits offer some limited financial support to help patients with medication, treatment bills or other costs, Triage’s Navigation Program goes deeper by helping callers identify and address the root of their financial problems.
“The first thing we want to understand is why the patient needs financial assistance,” says Joanna. “When patients do reach out to us, it is our responsibility to lay out all of their options to prevent or eradicate financial toxicity.”
Loss of hours and work? The Triage Cancer team can provide information on employee rights. Managing medical bills? Triage can help with strategizing payment plans or inquiring about a writeoff of medical bills from the treating hospital. And for other issues around finances, Triage can point people to resources in the cancer community for getting transportation to treatment, home cleaning services, covering copays, and so much more.
One of the most common areas of focus for the Navigation Program is to ensure that callers not only have sufficient health insurance, but also understand what their coverage entails.
“One of the biggest issues we see with patients is not understanding how to use their health insurance or effectively navigate the system,” Joanna explains.
That may be as simple as understanding how to choose medications that are covered, or how to request an exception. Or it can be as momentous as understanding the process for filing an appeal with an insurer over a denial of coverage.
Joanna notes that 99.9% of coverage denials are not appealed, leaving patients to pay out of pocket for what may be crushing costs. That’s because most consumers don’t know the internal or external appeals processes exist – but with an average of 50% of all external appeals being approved, patients are missing out on a huge opportunity if they do not attempt to appeal.
Another factor is that when facing the emotional and physical demands of treatment, the idea of combing through paperwork, mail, or filling out long applications for assistance may seem insurmountable. That is the time, Joanna reminds people, to ask for help and outsource any tasks that may be beyond their current capacity.
That might look less like sharing a pan of lasagna, and more like help with opening mail and organizing bills, calling the insurance company to check on coverage, or sitting down together to fill out online forms. Calendaring tools like Lotsa Helping Hands and My Lifeline can help organize a support network.
“I encourage patients to lean on the support that has been offered,” says Joanna. “Usually there are friend groups, family groups, church groups, who have all said: ‘anything you need, let me know.’ Put those people to work.”
HOW CAN WE CHANGE THE SYSTEM?
To make more progress on dismantling financial toxicity, it’s crucial to raise awareness for preventative measures.
“There is support out there, but not enough to go around,” Joanna notes. “We need to start catching people further upstream. It’s paramount to understand how to make smart choices regarding insurance before something like cancer affects you or a loved one.”
To start moving the needle, stakeholders across the MBC community can also take these actions:
- Nonprofits: Empower patients to take a proactive approach towards financial freedom through education, awareness, and fearless conversations around the impact of financial toxicity.
- Medical Professionals: Talk about financial toxicity at all touch points with patients, and direct them to the team members within your healthcare system whose job is to connect patients with support and resources, or point them to cancer community resources.
- Advocates: Ask policy makers to support federal paid leave for patients and caregivers, and to set a cap on out-of-pocket medical costs.
Though financial toxicity is not a choice, as a community we can take steps to discuss, prevent and help resolve this all-too-common eventuality.
Experiencing financial toxicity, or want to learn more about this topic? Visit Triage Cancer online or explore our searchable library of financial resources from Alliance members.