This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.

Among the many challenges associated with a cancer diagnosis, the financial burden of treatment frequently creates another overwhelming layer of stress. "Financial toxicity" refers to the financial struggle that cancer patients incur from treatment and the accompanying mental health challenges. The 2022 Kaiser Family Foundation Health Care Debt Survey reported that medical debt has driven millions of Americans into homelessness, and an American Cancer Society study found that increased medical debt was associated with higher cancer mortality rates. In Michigan, several efforts are underway to help cancer patients prepare for, manage, and alleviate the effects of financial toxicity.

In 2021, researchers at University of Michigan Health Rogel Cancer Center published a study examining financial toxicity in patients with breast cancer. They interviewed 32 patients who received financial assistance from The Pink Fund, a Michigan-based nonprofit that covers up to 90 days of non-medical cost-of-living expenses for breast cancer patients in active treatment. In an interview about that study, Dr. Reshma Jagsi reported that many of those interviewed spoke of "the awful double whammy of facing financial difficulties at the same time as they were trying to manage a scary cancer diagnosis."

Others shared that they had expected to get back to work much sooner than they were able to, which created more stress and financial trouble. Many hadn’t accounted for additional expenses such as gas, food, and parking during frequent hospital visits, lotions or wigs after treatment, or payments for child care and other duties they could no longer do themselves.

"In the end, we identified four important gaps patients often experience: unclear treatment expectations, few conversations with providers about costs, not knowing how to access financial resources, and lack of support in navigating the health care system," Jagsi said in the article. "We have made a lot of progress in many types of cancer treatment, which is wonderful. But we must turn our efforts to confronting the financial devastation many patients face. We believe focusing health systems’ attention on each of these four areas could really make a big difference in patients’ lives."

Consortium focuses on financial toxicity

In collaboration with the Michigan Department of Health and Human Services (MDHHS), the Michigan Cancer Consortium brings together public and private organizations with the goal of reducing the human and economic burden of cancer among Michigan residents.

"The impact of cancer goes far beyond the physical effects. Sometimes it can bring really extreme financial challenges," says Debbie Webster, MDHHS program director for breast cancer in young adults and cancer patient navigation consultant. "Due to the high costs of cancer care, for some there's really high cost-sharing requirements. And they can be really unsure how to even pay for treatment — and that's people who have good insurance. It can be worse for those who are underinsured or don't have insurance at all."

Webster notes that bankruptcies increase with high medical debt.

"Some might sell property or other belongings in order to help cover the costs," Webster says. "The other thing that we have heard is that sometimes they actually choose not to seek treatment."

Webster advises people prescribed cancer treatment to initiate conversations with their care teams about costs and ability to pay early on. Health systems and hospitals may have financial navigators or social workers who are trained in connecting cancer patients with financial help.

"A patient had chosen not to receive treatment because of the impact it would cause on their family. [The navigator] did some research and was able to help this patient solve that cost problem — they did receive treatment," Webster says. "The average cancer patient doesn't know all of the different copay assistance programs or cost-of-living support services that are out there."

According to the 2021 Michigan Behavioral Risk Factor Survey, 5.2% of Michigan adults who have ever been diagnosed with cancer and needed to see a doctor in the last year did not do so because of cost. Additionally, Michigan adults who have ever received a diagnosis of cancer reported feeling anxious 10.8 days of their past 30 days.

"The MCC membership has really come together and addressed financial toxicity and financial navigation," says Audra Brown, MDHHS comprehensive cancer control program director. "MCC held sessions on this topic at its past annual meetings. In 2016, health system representatives identified the need for financial navigation programs and the need for information on how to develop and implement such programs. As a result, the MDHHS with members of the MCC financial navigation subcommittee addressed these questions and developed a white paper, Financial Navigation for People Undergoing Cancer Treatment. We've also held webinars on the topics and continue to share resources and information with our membership."

Detroit-based project will provide resources for entire state

In Detroit, the Karmanos Cancer Institute conducts cancer research in partnership with Wayne State University’s School of Medicine. As a result of some of that research, Karmanos’ Office of Cancer Health Equity and Community Engagement assembled 11 Cancer Action Councils composed of cancer survivors, caregivers, and advocates to ask what issues are the most difficult for people diagnosed with cancer. Financial hardship was at the top of the list in many of the councils’ conversations.

In response, Dr. Theresa Hastert, associate professor of Population Science at Wayne State University, and her colleagues developed the Michigan Community Outreach to Address Financial Toxicity (MI-COST) to address financial toxicity among cancer patients. First, MI-COST delivered a series of educational webinars in spring 2023 that helped people with cancer and their caregivers navigate different financial barriers. The webinar topics included: fundamentals of health insurance for people with cancer, resources for dealing with your cancer, employee benefits for people with cancer, understanding disability benefits for people with cancer, and discussing cost concerns with health care providers.

Second, they began building the MI-COST website, where people living with a cancer diagnosis can access videos of those webinars along with articles addressing those topics.

"There's a section on employee resources like understanding the Family Medical Leave Act, the Americans with Disabilities Act, working with HR departments, how to replace income, and in-depth information about Medicaid, Medicare, and health insurance," Hastert says. "The purpose of all that information is to cover the most common issues and questions that people with cancer have."
Dr. Theresa Hastert.
Third, the website will feature a centralized database where people living with cancer or their caregivers can connect with cancer resources available in Detroit, Michigan, or nationally.

"They can also search for specific things like young cancer survivors, children, older adults, or help for those who have income restrictions or transportation," Hastert says. "It will also list other general resources that are available, like how to apply for SNAP benefits or Medicaid."

For example, Hastert says a person living in a rural area who has challenges traveling to a hospital for infusion chemotherapy may be able to find out how they can access oral chemotherapy without being charged more.

"I give a lot of credit to the state of Michigan for doing some things to alleviate financial hardships for people with cancer," Hastert says. "The issues we’ve seen most often are out-of-pocket costs, insurance, employment, and transportation. Anything that we can do to improve any of those things for people with cancer is going to be beneficial."

Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children's books. You can contact her at Estelle.Slootmaker@gmail.com or www.constellations.biz.

Photos by Nick Hagen.