Insurance isn’t enough for women at high risk of breast cancer

Women at high risk for breast cancer face cost-related barriers to care, even if they have health insurance, a new study finds.

The findings suggest the need for greater transparency in health care pricing and policies to remove financial barriers to early cancer detection.

The study led by Ohio State University researchers included in-depth interviews with 50 women – 30 white and 20 black – who are at high risk for breast cancer based on family history and other factors. It appears in the Journal of Genetic Counseling.

The researchers considered it a given that without any insurance, women would face serious barriers to preventive care, including genetic counseling and testing, prophylactic mastectomy, and advanced breast imaging.

But they wanted to understand the nuances better – how finances played different ways in decision-making and for women who had insurance.

“Financial barriers seem to regularly hinder access to critical information that high-risk women can only get through genetic counseling and testing, and prevent them from using regular screenings that could contract cancer at the earliest and most treatable stages,” said co. lead author Tasleem Padamsee, assistant professor of health services management and policy at the state of Ohio.

“For women at the highest risk level, financial barriers can also put the most effective preventive surgeries and medications completely out of reach,” said Padamsee, who is also part of the Ohio State Comprehensive Cancer Center.

The research yielded several new insights into barriers to care, including:

Financial constraints don’t just affect the health care and preventive choices of low-income or uninsured women. Across the financial spectrum, women reported worrying about the financial consequences of prevention choices and avoiding measures they cannot afford or do not know whether they can afford. When women decide whether they can afford a procedure or test, they don’t just consider the cost of that particular care – they balance these costs with other financial demands they face, from medical debts to childcare to other illnesses that affect them. they can have. pay to treat themselves or a family member. Competing demands play a unique role in cancer prevention care, the authors said. Financial considerations are not only influenced by the financial realities of women’s lives. They are also influenced by broader social and political issues, such as a lack of price transparency in insurance companies, which often forces women to guess which services are covered and which are not.

“Underinsurance was a really big factor – even for those women who have private insurance, they face many hurdles in applying for coverage for genetic testing, counseling, risk-reducing surgery and improved breast screening,” said study co-lead author Rachel. J. Meadows, who worked on the study as a doctoral student at Ohio State’s College of Public Health.

“These women manage other priorities, including balancing paying for care for chronic illnesses they currently have against managing a future risk. And they have other financial demands, including raising children and supporting other family members,” says Meadows, currently at the Center for Outcomes Research at the JPS Health Network in Fort Worth, Texas.

Many high-risk women are also concerned about the risk of future discrimination if they undergo genetic testing, she said, although current legislation prevents genetic discrimination.

Often times, studies simply look at the association of income and insurance status with health care use, but the detailed conversations of this work with women can help lawyers, health care providers and others better understand the subtleties of decision-making, the researchers said.

“All of this information is critical to our ability to improve care. Knowing that a wide variety of high-risk women face financial constraints suggests they could be better served by caregivers who are trained and ready to help. to share information about insurance coverage, costs and financial assistance programs in addition to information about potentially useful tests and procedures, “said Padamsee.

The study’s findings also suggest that there is a need for regulatory changes, such as long-term guarantees against genetic discrimination and stricter requirements that insurance companies disclose their full benefits and co-pay in more transparent and understandable ways, she said.

“These changes could improve women’s ability to access high-risk care, reduce the number and severity of future cancers, and avoid future cancer treatment costs for both patients and payers.”

Another new study in the same group of women found that 45% of the participants – and only 21% of the black participants – were aware of their options for taking medications to reduce their risk of developing breast cancer. Women were more likely to have heard of these drugs, usually tamoxifen or raloxifen, if they had access to specialist care. The study appears in the journal BMC Women’s Health.

“Lack of chemoprevention awareness is a critical gap in women’s ability to make health-protective choices,” said Padamsee.


Other authors of the second study are Megan Hils and Anna Muraveva.

The research was supported by the National Cancer Institute.

CONTACTS: Tasleem J. Padamsee,; Rachel J. Meadows,

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