Even though Kati Wolfgang had help — and insurance — it wasn’t easy.
After two of her aunts developed breast cancer by the age of 34, her father got tested to see if he carried the BRCA gene, a mutation that substantially elevates the risk of developing breast and ovarian cancers.
His results came back positive, opening the door for genetic counseling for Wolfgang and her sisters when she was just 18. By the time she was 28, she had spent a decade doing annual ultrasounds and MRIs to monitor whether cancer had developed in her breast tissue.
By then, she was ready to have a preventive mastectomy.
“I was tired of the anxiety of somebody telling me that ‘You haven’t got cancer yet, but just wait until the next time,’” Wolfgang said while recovering from a follow-up surgery in New Orleans.
Wolfgang had a 2-year-old and 4-year-old at the time of her first surgery. For “two or three months,” as she was recovering, her mom and sisters helped take care of her children since she couldn’t afford to pay for child care.
Despite the help and private insurance, her family struggled with the “financial burden of it all” for years, she said, especially as she developed complications that needed follow-up surgeries.
“We still had these babies and diapers” to pay for, Wolfgang said. “And then, of course, medical bills. They come in quickly and they’re almost impossible to understand. So you pay what you can, and you hold off on what you can’t.
“It was really hard on me. It still is. I blamed myself for our financial issues.”
A study appearing in the Journal of Genetic Counseling delved deeper into how women such as Wolfgang, who are at high risk for breast cancer but are relatively healthy, weigh the financial costs of seeking more information and further care for their conditions.
Lead authors Rachel Meadows and Tasleem Padamsee of Ohio State University interviewed 50 women — 30 White and 20 Black — all of whom had private insurance and knew they were at high risk for developing breast cancer.
Regardless of their income, the majority of women interviewed for the study said financial barriers stood in the way of them being able to access preventive services, including genetic counseling and advanced screenings, such as MRI scans, which allow doctors to see breast tissue more clearly.
“Having private insurance isn’t enough,” said Meadows, who now works at the Center for Outcomes Research at the JPS Health Network in Fort Worth. Meadows was completing a doctoral degree when she and Padamsee, an assistant professor of public health, began their research.
The paper is part of a broader study looking at how this growing population of American women — those who are aware of their greater likelihood to develop cancer — navigate that risk.
Death rates have dropped by 40 percent since 1989, but the prevalence of breast cancer diagnoses has increased slightly, a recent ACS report found. Death rates were also substantially higher among Black women than their White peers.
Padamsee noted that when it comes to insurance, access to care is typically compared between those who have private insurance and those who don’t. That leaves out a lot of gray area for the “underinsured”: those who have private insurance plans but still struggle to get care.
“Financial constraints are really relevant across the health-care and preventive choices of many, many women,” Padamsee said. This concern was “much more universal” than even she expected it would be.
These constraints aren’t just about what a particular procedure, test or appointment costs, she added.
“It’s also about the financial realities of women’s lives” — weighing MRI screenings against other budget items, like day care, housing or other medical bills.
Among the women they interviewed, child care repeatedly came up. Women with young children, in particular, told Meadows and Padamsee that they felt genetic counseling, screening and preventive surgeries were out of the question when they have day-care or school bills to pay.
“'Do we really shift the priorities for the whole family checkbook away from where they currently are, and into my prevention?'” Padamsee explained. “Women were really saying strongly [that] was not necessarily a choice that they could make.”
The study also found some considerable differences between Black and White women.
There are many steps between learning about your risk to being able to receive treatment — documenting family histories, getting genetic tests and counseling, and seeing specialists, Padamsee said. Throughout each step of the process, Black women were disadvantaged.
“African-American women systematically knew less about the prevention options that were available to them. Even if they had talked to a health-care provider at some point about breast cancer risk, they had been told less specifics about what that meant or what their risk management options might be.”
Lisa Schlager, vice president of public policy at Facing Our Risk of Cancer Empowered, an advocacy group centered on those with hereditary cancers, said she was relieved to see the research. For years, she said, FORCE has been trying to raise awareness about the limits of insurance coverage for breast, ovarian and colon cancers.
A lack of transparency about the costs of these procedures, as well as different state mandates on what insurance companies can charge, make it difficult for women to know what to expect, she said.
Mammograms tended to be among the most affordable screening techniques available to women at high risk of breast cancer. But when Schlager asked a group of high-risk women about their out-of-pocket costs for an MRI — a method of screening recommended for high-risk patients — answers ranged from $0 to more than $3,000.
“We have all these different rules,” Schlager said. “That is really confusing, not only for the patients and the providers, but for the system in general.”
This was true Wolfgang’s experience. Though she didn’t have to fight her insurance company to cover most of her procedures — 14 in total — it was challenging to meet “asinine, high deductibles” to be able to afford the surgeries.
The study also found that high-risk women of all socioeconomic backgrounds voiced concerns about future discrimination if they get genetic testing, despite current laws barring such practices.
Under the Affordable Care Act, insurance companies cannot use “preexisting conditions,” such as genetic history and obesity, to hike up health-care costs or prevent people from joining plans. Still, women were wary that this could change.
Joy Larsen Haidle, a genetic counselor in Minnesota, said the concern comes up on a “somewhat regular basis” in her sessions.
While cancer screening has dropped off dramatically during the pandemic, Haidle said her clinic’s switch to telehealth appointments helped increase access to genetic counseling, especially for people in rural and underserved areas.
It’s important to continue to reach these women, Haidle pointed out, because they will help pass along information and get the rest of their family screened for hereditary cancers. Women with BRCA mutations, for example, can have up to a 72 percent risk of being diagnosed with breast cancer in their lifetimes, compared to 12 percent for the average American woman. Men with these genes also have elevated risks of breast cancer, prostate cancer and melanoma.
There has been government interest in expanding genetic testing to more people, Schlager said, but without making preventive care more affordable, it raises an “ethical problem.”
“It’s unethical to test people and tell them, ‘Oh, you have a high risk of cancer. Sorry, you’re on your own now,’" Schlager said. “It’s bad enough for people with insurance. For people without insurance, it’s impossible.”
Anya Prince, an associate professor at the University of Iowa College of Law, agreed. While she acknowledged that far more preventive procedures are covered now than in decades past, there is still much work to be done.
Existing guidelines for what insurance ought to cover are set for the general population, Prince pointed out, and don’t apply to people at high risk, who face a different set of recommendations: earlier and more frequent screenings, and more aggressive procedures to minimize risk.
“There’s a lot of discussion in society that equates information with prevention,” Prince said. “It’s a huge problem where we might be giving some people information that they can’t do anything about.”