How to deal with the financial cost of cancer

WCancer is not only emotionally and physically exhausting: it can take a heavy toll on patients, caregivers and families.

In fact, two years after diagnosis, adults with cancer are 71% more likely to have financial problems than those without a cancer diagnosis, according to January 2022 research in Journal of Clinical Oncology. This type of financial hardship due to medical bills is sometimes referred to as financial toxicity, or when out-of-pocket medical expenses not covered by health insurance cause financial problems for a patient.

Cancer treatment costs vary widely depending on the type of disease and the stage at which it is diagnosed. Insurance claims for an initial diagnosis of kidney cancer cost an average of $39,500 annually, according to a July 2020 survey in Epidemiology, biomarkers and cancer prevention. For end-of-life kidney cancer treatment, that number can average $92,300 per year, with an additional $11,400 for prescription drugs.

If you have insurance, you’re not responsible for all of this, but depending on your coverage, you could still owe thousands. Some people with cancer say they spend more than 20% of their annual income on medical care, according to the National Cancer Institute (NCI).

Joe Gillette, 58, of Brooklyn, NY, is intimately familiar with these statistics. A longtime volunteer with the American Cancer Society (ACS), he was shocked when he received his own diagnosis, on August 5, 2022, his 57th birthday: stage 4 kidney cancer that had spread to his lungs, stomach and brain.

Gillette’s treatment plan called for brain surgery first, which would require a week of hospital stay, then radiation and immunotherapy. He planned to be off his job as a lawyer for a week. Due to complications, he was in a coma for two and a half months and his practice placed him on disability leave. There was a six-month wait for payments to take effect.

“Luckily, with my wife working, we can barely cover the mortgage,” he says. “We had some savings we needed to spend.” Although his wife is sensitive to the cold, “she learned not to turn on the heat in the house unless it was very cold,” adds Gillette. “The grocery bill was for basic needs, and that wasn’t how I lived.”

The disability payments amount to much less money than Gillette earned when he worked. But he feels safer now than he did during those precarious six months. “We walked on water during this period,” he says.

Others may have to change their finances more dramatically. “They may delay treatment because they don’t have funds for treatment or a second opinion,” says licensed clinical social worker Vilmarie Rodriguez, vice president of patient care and community engagement at the cancer support organization CancerCare. “Financial toxicity reduces the quality of life, because [patients are] constantly worrying about medical bills or struggling to pay rent or mortgage or put food on the table. Their employment is affected because they are constantly undergoing treatment. All of this combined leads to worse health outcomes.”

Of course, your financial situation before Cancer is a huge predictor of how you might weather this storm, as is the type of cancer you were diagnosed with, how advanced it is, and the treatment it requires. But regardless of your unique scenario, the following tips can help you prevent or lessen the effects of financial toxicity during cancer treatment.

Speak to a social worker or patient navigator

Many healthcare facilities have social workers or qualified people known as patient navigators on their oncology teams who can help you from multiple angles: emotional, physical, and financial. But you might not know about these features unless you ask what’s available. “The worst they can say is, ‘No, we don’t have that,’” says Rodriguez.

Hospital social workers, in particular, are familiar with the money-saving options you may have, including prescription assistance plans, transportation assistance, and bill negotiation or payment plans. “They do a great job advocating for patients and taking care of patients in general,” says Alan Klein, director of development at the HealthWell Foundation, a nonprofit that assists the underinsured by offering help with drug copays, insurance premiums and insurance, deductibles and other out-of-pocket expenses, including for behavioral health care.

See more information: How to Talk to Children When a Parent Has Cancer

Ask about costs upfront

Once you’ve connected with a social worker or patient navigator — or even a trusted doctor or nurse — try to learn as much as you can about the financial burden ahead. “Patients should always ask the cost upfront,” says Rodriguez.

For example, your treatment plan may change without your knowledge to include an out-of-network doctor, resulting in a much higher cost to you. Asking about your participation will remind your healthcare team to keep you informed.

Although it requires some extra work on your part, don’t give up until you’re satisfied. Sometimes this requires repeated reminders to your doctor or patient navigator that you are in an unstable financial situation and need their support, which is not always easy to do. But it’s the only way these professionals will know to reach out on your behalf, says Rodriguez.

If you receive a surprise bill that’s more than $400 above your estimated charge, you can dispute that charge under the No Surprises Act, says Zhiyuan (Jason) Zheng, senior principal scientist and health economist at ACS.

Connect with supporting organizations

Groups like ACS, CancerCare, HealthWell and the Cancer Financial Assistance Coalition offer various types of monetary help for people with cancer and their families or can connect you with local or national groups that do, Rodriguez says.

These groups typically do a brief assessment of your diagnosis, medication, and finances and then create an action plan to get you the support you need. It usually takes less than 10 minutes, says Klein.

Here’s how to contact them:

Don’t consider these expenses mere pocket change: Since opening a kidney cancer-specific fund in 2015, HealthWell has awarded more than $200 million to more than 32,000 beneficiaries, says Klein.

Follow your treatment plan

Skipping follow-up appointments or delaying treatment is dangerous to your health and should not be part of your approach to dealing with the financial costs of cancer (or any diagnosis).

“We routinely hear that patients who cannot afford their medication regimen as prescribed only fill their prescriptions or receive medication at intervals they can afford, which is often suboptimal, especially in oncology. Access to cancer medications should be the last thing these patients should worry about,” says Klein.

Financial hardship is associated with higher death rates, including from cancer, according to a March 2024 survey in JAMA Open network which Zheng co-authored. “You have to make the horrible decision of paying for your medications, your rent, or your food, and that’s just not acceptable,” says Klein.

Even in the case of an advanced diagnosis, remain hopeful and committed to your treatment plan. “I was diagnosed with stage 4 cancer because it had spread to my stomach, lung and brain,” says Gillette. “When you first hear it, you think, ‘It’s over.’” But immunotherapy successfully reduced the size of many of his tumors. “Fortunately, through treatment, they were able to stop it for now.”

Consider crowdfunding

When Gillette was really in need of funds, his community came through: Friends he made through volunteering with ACS started a GoFundMe campaign that raised more than $43,000 for his care, he says.

Crowdfunding for healthcare is a popular tool and can be “a great show of support for that specific person through that person’s network,” says Klein. “I just wish it didn’t have to be like this. There should be a more systematic approach available to a patient that can guide them in the right direction from all the available resources at their disposal. These people may qualify for things they don’t even know. It’s a complicated web to navigate.”

This approach isn’t for everyone: You or your family may not have the time or energy to start a campaign, you may have privacy concerns, or it may not be acceptable in your culture or family to ask for money publicly, Zheng says. . But if you’re curious and want to try it, “it’s better than doing nothing,” says Klein.

See more information: Why are so many young people getting cancer? It is complicated

Drive policy change

The US currently has no national standards for paid sick leave, although many other industrialized countries require this benefit for workers. Consider voting for local and national candidates who advocate paid sick leave policies and contacting your senators and representatives to express your support for paid sick leave if and when you have the energy to do so.

“Regardless of the generosity of paid sick leave, it is typically not enough for patients who need to go to a radiation center three days a week over a six-month period, for example,” says Zheng. Still, “any paid sick leave policy is associated with earlier diagnosis and better treatment outcomes.”

Remember that navigating the financial costs of cancer may seem like a task that is up to you alone, but there are resources available that you may not yet know about. “It’s a matter of reaching out to them and being vulnerable enough to say, ‘I need help,’” says Rodriguez.