Women at high risk of breast cancer face cost-related barriers to care even when they have health insurance, a new study has found.
The findings suggest the need for greater transparency in the pricing of healthcare and policies to remove financial barriers to the early detection of cancer.
The researcher-led study at Ohio State University included in-depth interviews with 50 women – 30 white, 20 Black – who are judged to be at high risk of breast cancer based on family history and other factors. Appears in the Journal of Genetic Counseling.
The researchers thought it considered that uninsured women would face serious barriers to preventive care including counseling and genetic testing, prophylactic mastectomy and advanced breast imaging.
But they wanted to better understand the nuances – how finance played a part in making decisions in other ways and for women who had insurance.
Financial barriers appear to regularly hinder access to critical information that high-risk women can only access through counseling and genetic testing, and prevent them from using regular screenings that could catch cancers at the earliest and greatest stages. treat them. “
Tasleem Padamsee, co-lead author, assistant professor of health services management and policy in the State of Ohio
“For women at the highest levels of risk, financial barriers can also put the most effective preventive surgeries and medicines out of their reach,” said Padamsee, who is also part of the State of Ohio Comprehensive Cancer Center.
The study provided several new insights into barriers to care, including:
- Financial constraints not only affect the health care and preventative choices of low-income or uninsured women. Across the financial spectrum, women indicated that they were concerned about the financial effects of prevention options and avoiding taking actions that they cannot or do not know if they can afford.
- When women decide whether or not they can afford treatment or a test, they do not just consider the cost of that particular care – they balance these costs with other financial demands they face, from medical debt to childcare to other illnesses they could do. be paying to treat for themselves or a family member. Competitive demands play a unique role in cancer prevention care, the authors said.
- Financial considerations are influenced by more than the financial reality of women’s lives. They are also influenced by broader social and political issues such as a lack of price transparency on the part of insurance companies, which often leads to women having to guess which services are included and which are not.
“Under-assurance was a huge factor – even for those women with private insurance, they encounter many obstacles in seeking coverage for genetic testing, counseling, risk reduction surgeries and better screening on the breast, ”said co-lead author of the study, Rachel J. Meadows, who worked on the research as a doctoral student at Ohio State College of Public Health.
“These women manage other priorities, including weighing up payment for chronic disease care they currently have versus managing risk in the future. And they have other financial requirements, including parenting and support other family members, ”said Meadows, who currently works at the Outcomes Research Center at JPS Health Network in Fort Worth, Texas.
Many high-risk women also worry about the risk of future discrimination if they undergo genetic testing, she said, although current law prevents genetic discrimination.
Often, studies simply look at the link between income status and insurance with using health care services, but the in-depth conversations of this work with women can help advocates, providers and others better understand the subtleties of decision-making, say the researchers .
“All this information is vital to our ability to improve care. Knowing that financial constraints affect a wide range of high-risk women suggests that providers who are trained and willing to share information about insurance, costs, better servicing them, and financial aid programs alongside information about tests and procedures that may help, “Padamsee said.
The study’s findings also suggest the need for regulatory changes such as long-term guarantees against genetic discrimination and stronger requirements for insurance companies to disclose their full benefits and pay in more transparent and understandable ways, he 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 patients and payers.”
Another new study involving the same group of women found that 45% of participants – and only 21% of Black participants – were aware of their options for taking medications to reduce their risk of developing cancer breast. Women were more likely to have heard of these drugs, usually tamoxifen or raloxifene, if a specialist could get care. The study appears in the journal BMC Women’s Health.
“Lack of awareness of chemoprevention is a critical gap in women’s ability to make choices that protect health,” says Padamsee.
Meadows, RJ & Padamsee, TJ (2021) Financial constraints on genetic counseling and further risk management decisions among US women at increased risk of breast cancer. Journal of Genetic Counseling. doi.org/10.1002/jgc4.1413.