Financial Resources

The financial stresses we experience as cancer patients
get in the way of our healing.

Cancer care costs vary widely by the type of disease and the stage at which it’s diagnosed. Insurance claims for an initial kidney cancer diagnosis average about $39,500 annually, according to July 2020 research in Cancer Epidemiology, Biomarkers, & Prevention. For end-of-life kidney cancer care, that number can stretch to an average of $92,300 a year, with an additional $11,400 for prescription medications.

If you have insurance, you aren’t responsible for all of that, but depending on your coverage, you can 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, N.Y., is intimately familiar with these statistics. A long-time American Cancer Society (ACS) volunteer, 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’s hospital stay, then radiation and immunotherapy. He planned to be out of his job as an attorney for a week. Due to complications, he ended up in a coma for two and a half months, and his office put him on disability leave. There was a six-month wait for the payments to kick in.

“Thankfully with my wife working, we were able to barely cover the mortgage,” he says. “We had some savings we had to go through.” Though his wife is sensitive to the cold, “she learned not to turn on the heat in the house unless it was truly freezing,” Gillette adds. “The grocery bill was bare necessities, which was not how I had ever lived.”

The disability payments amount to much less money than Gillette made when he was working. But he feels more secure now than during those six precarious months. “We treaded water for that time period,” he says.

Others may have to shift finances around more dramatically. “They may delay treatment because they don’t have the funds to get to treatment or a second opinion,” says licensed clinical social worker Vilmarie Rodriguez, vice president of patient assistance and community engagement at the cancer support organization CancerCare. “Financial toxicity reduces 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 gets affected because they’re constantly going to treatment. All of this combined leads to worsening health outcomes.”

Of course, your financial situation before cancer is a large predictor of how you may weather that storm, as is the type of cancer you’re 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 with a social worker or patient navigator
Many health-care facilities have social workers or knowledgable people known as patient navigators on their oncology teams who can help you from many angles: emotional, physical, and financial. But you might not know about these resources unless you ask what’s available. “The worst they can tell you is, ‘No, we don’t have that,’” Rodriguez says.

Hospital social workers in particular are familiar with the money-saving options you might have, including prescription assistance plans, transportation assistance, and bill negotiation or payment plans. “They do an outstanding job of being the patient advocate and looking out for patients in general,” says Alan Klein, chief development officer of the HealthWell Foundation, a non-profit that assists the underinsured by offering help with medication copays, insurance premiums, deductibles, and other out-of-pocket expenses, including for behavioral health care.

Ask about costs up front
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 load ahead. “Patients should always ask the cost up front,” Rodriguez says.

For example, your treatment plan might change without your knowledge to include a doctor who is out-of-network, resulting in a much larger out-of-pocket cost to you. Asking about your share will remind your health-care team to keep you in the loop.

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

If you do get a surprise bill that’s more than $400 over the estimated charge, you may be able to dispute that charge under the No Surprises Act, says Zhiyuan (Jason) Zheng, a senior principal scientist and health economist at the ACS.

Connect with support organizations
Groups like the 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 to local or national groups that do, Rodriguez says.

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

Here’s how to contact them:

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

Stick to your treatment plan
Skipping follow-up appointments or delaying treatment is dangerous for your health and shouldn’t be part of your approach to handle the financial toll of cancer (or any diagnosis).

“We routinely hear that patients who cannot pay for their medication regimen as prescribed only fill their prescriptions or receive their medication treatment in intervals they can afford, which is often suboptimal, especially in oncology. Affording their cancer medications should be the last thing those patients should be worried about,” Klein says.

Financial hardship is associated with higher rates of death, including from cancer, according to March 2024 research in JAMA Network Open that Zheng co-authored. “You have to make the horrible decision to either pay for medication or for rent or food, and that’s just not acceptable,” Klein says.

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,” Gillette says. “When you first hear that, you think, ‘It’s over.’” But immunotherapy has successfully reduced the size of many of his tumors. “Thankfully, through treatment, they were able to stop it in its tracks for now.”

Consider crowdfunding
When Gillette was really strapped for funds, his community pulled through: Friends he had made through volunteering with the ACS started a GoFundMe campaign that has raised more than $43,000 for his care, he says.

Crowdfunding for medical care is a popular tool and can be “an excellent show of support to that particular person through that person’s network,” Klein says. “I just wish it didn’t have to be that way. There should be a more systematic approach available to a patient that could point them in the right direction of all available resources at their disposal. These folks might qualify for things they don’t even know about. It’s a complicated web to have to navigate.”

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

Push for policy change
The U.S. does not currently have national standards for paid sick leave, despite many other industrialized countries requiring this benefit to employees. Consider voting for local and national candidates who champion 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 for a period of six months, for example,” Zheng says. Still, “any paid sick leave policy is associated with earlier stage diagnosis and better treatment outcomes.”

Remember, navigating the financial toll of cancer might feel like it’s a task left to you alone to handle, but there are resources available to you that you may not know about yet. “It’s a matter of looking for them and being vulnerable enough to say, ‘I need help,’” Rodriguez says.

 

Triage Cancer Navigating Finances
These materials and resources will teach you about avoiding the financial burden of a cancer diagnosis (often referred to as financial toxicity), managing medical bills and debt, paying for prescriptions, finding financial help, budgeting, and more.

If you are looking for direct financial assistance, please see our database of Financial Assistance Resources. Triage Cancer does not provide direct financial assistance.

The Cancer Support Community 
Our toll-free Cancer Support Helpline is for anyone affected by cancer.
Our navigators are available and ready to assist you, whether you are looking for cancer resources and information or someone to talk to about the emotional and social worries that cancer can sometimes bring into our lives.
Call 888 793 9355 and online via our live chat service.
The Cancer Support Community is here to help you by offering free navigation for cancer patients or their loved ones by phone and online.

 

Tips from Christina, a Financial Navigator for our Cancer Support Hotline …
Christina was catching some exercise on her stationary bike one morning when she received a text with the news she had been hoping for. A leukemia-focused nonprofit was notifying her that some funding had just opened in its co-pay assistance program.

Christina, a Financial Navigator for our Cancer Support Helpline, was thrilled. “The planets aligned that day,” she says.

Part of Christina’s role as a Financial Navigator is connecting callers with resources that may help with their cancer-related treatment expenses. Her hope was that the leukemia foundation’s funding would help a man who needed a specific and expensive medication to treat his leukemia.

A few days earlier, the man’s son had called the Helpline seeking guidance. “His dad, who lived several states away, had a Medicare Part D plan with a substantial co-pay,” recalls Christina. “I think it was stressful for him, as a caregiver and a son, to be far away from his dad, not knowing if it was going to be okay.” Christina immediately thought of the leukemia nonprofit and its co-pay assistance program. But that day the program had no available funding. From experience, Christina knew that funding might open any day — or it could take months. It is impossible to predict exactly when and for how long funds from any resource will be available. So, she waited. And she hoped.

Fast forward a few days later to the moment Christina received the text that funding was now available. Wasting no time, she jumped on a call with the leukemia non-profit to confirm the news. In these cases, she explains, “I provide basic eligibility screening to be sure that [patients] meet criteria for funding.” Then she contacted the patient’s son to tell him the good news and how to apply.

Within 2 hours, the man’s father was approved for the funding and was able to get his medication. “I was so happy that day,” Christina says.

Financial stressors like medical bills, health insurance, and household expenses are one of the top reasons callers reach out to our Helpline seeking support and guidance. For patients and their families, facing a cancer diagnosis can be overwhelming. Add cancer care costs to the experience, and it may feel like you are carrying the weight of the world on your shoulders.

Christina has observed, first-hand, the distress it can cause. She is a licensed clinical social worker and a board-certified oncology social worker who has been working with cancer patients and their families for more than 20 years. “Financial distress weighs on the psychosocial health of people,” she says.

In our own research, 7 out of 10 participants in our Cancer Experience Registry survey reported that no one from their healthcare team spoke to them about the cost of their care. In addition, 1 out of 3 depleted their savings or used money from retirement to cover treatment costs, and 1 out of 10 postponed filling their prescriptions to reduce costs.

For many people, asking for help can be difficult, and not everyone feels comfortable talking about their financial concerns. As a Financial Navigator, Christina helps normalize these conversations. “I say to people, ‘I understand that talking about money is not something we feel comfortable doing, but you took the first step by making this call. If, at any time, my questions feel uncomfortable for you, just let me know and we’ll stop.’”

My goal is to normalize talking
about your financial health  and distress
in a cancer setting
and to empower you to make changes
to improve your situation.
— Christina,
Financial Navigator,
Cancer Support Helpline

Christina and Aimee, another Financial Navigator on the Helpline, frequently research potential new resources that may help support Helpline callers with their concerns about cancer costs, including national, state, and local resources. Christina helped one caller save $140 a month on his medication costs after finding the medication at a lower cost through a new specialty pharmacy backed by investor Mark Cuban (yes — that Mark Cuban, of the business-themed reality TV series “Shark Tank”). She helped another patient find her medication at a lower cost through the same pharmacy.

“These stories are really cool, and important,” says Christina. “I feel like we are barely touching the tip of the iceberg with these calls.”

Christina and Aimee can also offer tips on:
Communicating with healthcare providers about the cost of care and payment
Understanding insurance benefits
Navigating changes in insurance coverage or work circumstances, including loss of employment

Christina says,

One of the things I love
about our [Helpline] program
is that we are an unbiased third party.
We are not trying to get the hospitals paid.
We are trying to get patients
the resources they need
to continue their care.