In 2017, Susan learned that she carries a genetic mutation that may elevate her lifetime risk of developing breast cancer to 69 percent.
Her doctor explained that individuals who have this mutation in the BRCA2 gene have choices in treatment. Some people opt for a preventive double mastectomy. But Susan could instead choose to undergo increased cancer screenings, which, for her, would mean an annual mammogram and annual MRI scan.
Because she had just had her first child, Susan chose increased surveillance — that meant she'd be able to preserve her ability to breastfeed.
Both Susan and her husband, who make their home in Broomall, Pa., have insurance provided through their respective employers to help pay for medical treatment. But there's an expensive hitch: These annual scans she'd need would be pricey, and their companies offered only high-deductible health plans.
Susan's annual deductible for her plan (which covers her and her child) is $6,000 annually. (NPR has agreed to use only Susan's first name because she worries any publicity might jeopardize her job.)
"I've worked at my employer for 17 years," she says. "When I first started, there was no paycheck deduction for health insurance and my copay was only $5. But in 2011, my employer switched to only providing high-deductible insurance plans."
Susan went in for her first mammogram and MRI in February 2017. Her out-of-pocket cost for the MRI was more than $2,000. The bill for her mammogram was $1,088 (although she was eventually able to appeal and have the charges for the mammogram reduced to $191).
As a result of the high bill, Susan decided to put off her 2018 annual screenings until she had dealt with paying off the bills from 2017.
Susan's story of delaying care because she's underinsured is not an outlier. A study published last month in Health Affairs examined claims data from a large national insurer for 316,244 women whose employers switched insurance coverage from low-deductible health plans (i.e., deductibles of $500 or less) to high-deductible health plans (i.e., deductibles of $1,000 or more) between 2004 and 2014.
The study group consisted of women who were in low-deductible plans for one year, then switched to a high-deductible plan for an additional one month to four years. The control group consisted of women who remained in low-deductible plans.
In particular, the researchers looked at the relative effects of such plans on women who have low incomes versus those with higher incomes.
Women with low incomes who had high-deductible insurance plans waited an average of 1.6 months longer for diagnostic breast imaging, 2.7 months for first biopsy, 6.6 months for first early-stage breast cancer diagnosis and 8.7 months for first chemotherapy, compared with low-income women with low-deductible plans.
In some cases, delays of that length might lead to poorer health outcomes, says J. Frank Wharam, an internist and specialist in insurance and population health, who led the study. More research needs to be done to confirm that, he says.
Interestingly, women with high incomes who relied on high-deductible health plans were not immune to such delays — they experienced lags of 0.7 months for first breast imaging, 1.9 months for first biopsy, 5.4 months for first early-stage breast cancer diagnosis and 5.7 months for first chemotherapy, compared with high-income women with low-deductible plans.
The researchers also found that having a high-deductible health plan was linked to delays in care whether the women lived in metropolitan areas or not and whether they lived in neighborhoods that were predominantly white or predominantly nonwhite.
"In general, we are finding that the effects of modern high-deductible plans on access to care are sometimes predictable but often surprising," Wharam explains.
"In addition to well-recognized factors that can influence how quickly a patient is diagnosed and treated — such as income and education levels — other aspects of her life likely play a role too," he says, such as her familiarity with her disease and insurance benefits, her previous experience interacting with an insurer, her tolerance of risk and her familiarity and ease with the health care system and its jargon.
Other recent studies have noted similar delays in diagnosis and treatment for complications from diabetes, cardiovascular illness and other conditions. And a report from the Kaiser Family Foundation in 2017 found that 43 percent of adults with health insurance reported difficulties in meeting their deductible — up from 37 percent in 2015.
Dr. Veena Shankaran is co-director of the Hutchinson Institute for Cancer Outcomes Research at Seattle's Fred Hutchinson Cancer Research Center, where her work focuses on studying financial challenges experienced by cancer patients. Though not involved in the Health Affairs study, Shankaran says the findings don't surprise her.
"We're seeing that high-deductible plans are really the epitome of the access-to-care problem," she says. "People don't have the liquid cash to meet their deductible, so you see delays in care or even avoiding treatment altogether."
According to data from the Centers for Disease Control and Prevention, from 2007 through 2017, enrollment in high-deductible health plans that are linked to a health savings account increased from 4.2 percent to 18.9 percent among adults 18 to 64 who had job-based coverage, while enrollment in high-deductible health plans without an HSA increased from 10.6 percent to 24.5 percent in that same age group.
Meanwhile, enrollment in more traditional workplace plans decreased.
The Patient Access Network Foundation, a nonprofit in Washington, D.C., assists underinsured patients who have life-threatening chronic or rare diseases get access to medications and treatment by assisting with out-of-pocket costs. Dan Klein, the organization's president and chief executive officer, says he has noticed an uptick in the number of patients seeking PAN's help.
"One thing that worries me," Klein says, "is that Congress is very focused on lowering prescription drug prices. That's a good goal, but it's meaningless in an environment where patients still can't access care or medications because of their deductibles."
Susan resumed screenings this year. She says she did look into patient-assistance programs, such as the one offered by Right Action for Women, which helps individuals at high risk for breast cancer get access to MRI screenings. But she did not meet the criteria.
In preparation for her next scan, she has established a flexible spending arrangement at work and a health savings account so she can pay for at least some of her medical expenses from tax-free income. And she has been setting up payment plans with her health care providers. Still, concern over how she and her husband will pay for looming tests and treatment preoccupy the couple.
"After that first MRI bill, I wanted to give up," Susan says. "Because, in addition to dealing with the BRCA diagnosis, the insurance bills were overwhelming.
"I sometimes think about opting for surgery as a way to deal with my mutation," she adds. "But then I get nervous — because I'm afraid of the resulting bill from the hospital."
Erika Stallings is an attorney and freelance writer based in New York City. Her work focuses on health care disparities, with a focus on breast cancer and genetics. Her work has appeared in HuffPost, New York Magazine, Jezebel and O, The Oprah Magazine. Find her on Twitter: @quidditch424.
A previous version of this story suggested that the estimated lifetime breast cancer risk associated with carrying a deleterious BRCA2 mutation is 72 percent. The estimated lifetime risk is actually 69 percent.