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Women at High Risk for Breast Cancer Face Financial Barriers to Preventive Care, Even With Insurance

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Women with a higher-than-average risk of breast cancer face barriers to preventive care because of financial concerns, even when they have health insurance, according to a study.

The research was published online on March 21, 2021, by the Journal of Genetic Counseling. Read the abstract of “Financial constraints on genetic counseling and further risk-management decisions among U.S. women at elevated breast cancer risk.”

Preventive care for high-risk women
About the study
What this means for you

Preventive care for high-risk women

According to the American Cancer Society, women at high risk of breast cancer include women who have one or more of the following:

  • a known BRCA1 or BRCA2 mutation or other mutation linked to a higher risk of breast cancer
  • a strong family history of the disease
  • a history of benign breast disease
  • a history of DCIS or LCIS
  • had radiation therapy to the chest between age 10 and 30

The U.S. Preventive Services Task Force recommends that women with either a personal or family history of breast or ovarian cancer and women who are Ashkenazi Jewish (of Eastern European descent) should have their risk assessed by their family doctor using a validated risk assessment tool. If the risk assessment tool shows that a woman has a higher-than-average risk of breast cancer, then genetic counseling is recommended. The genetic counseling process helps women decide whether they want to have genetic testing.

Other steps high-risk women can take to reduce their risk of breast cancer include:

  • enhanced screening, including more frequent screening and possibly ultrasound or MRI screening
  • preventively removing the healthy breasts, called prophylactic mastectomy
  • preventively removing the fallopian tubes and ovaries, called prophylactic salpingo-oophorectomy
  • taking a type of medicine called hormonal therapy to reduce the risk of hormone-receptor-positive breast cancer

Still, research strongly suggests that these risk-reducing steps aren’t used by many high-risk women.

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About the study

The researchers who did this study wanted to know if financial concerns affected whether or not women at high risk of breast cancer were able to use preventive care.

The study included 50 women at high risk of breast cancer who had never been diagnosed with cancer:

  • 30 were white
  • 20 were Black
  • 3 were Ashkenazi Jewish
  • 16 had genetic counseling
  • 13 had genetic testing
  • average age was 44
  • 40 had private insurance
  • 7 had Medicaid or Medicare
  • 3 had no insurance and 9 had no insurance at some time in their lives
  • 18 had an undergraduate degree and 15 had a graduate degree
  • 26 worked full-time, 6 worked part-time, 5 worked at home raising children, 5 were students, 4 were retired, and 4 were disabled
  • 11 were single, 28 were married or living with a partner, 8 were divorced, and 3 were widowed

The researchers interviewed the women in person or over the phone. The researchers asked the women about:

  • how they perceived their breast cancer risk
  • how they got information on breast cancer risk
  • whether they used genetic counseling or other risk-related healthcare
  • how well they understood their options to reduce risk
  • what they thought of their risk-reducing options
  • how they made decisions about risk-related healthcare and whether finances played a role in their decisions
  • their psychosocial well-being

While 47 of the women had some type of health insurance, 22 of them said they said they had financial concerns because of underinsurance. Underinsurance included:

  • limited coverage
  • high deductible costs
  • high prescription costs
  • high co-pays

All these factors affected the women’s healthcare decisions.

The researchers found that 36 of the women were taking some sort of breast cancer risk management steps and 14 were not. Of the 36 women taking steps, 19 reported delaying or skipping specific risk-reduction steps because of financial concerns. These delayed or skipped steps included:

  • mammograms or MRIs
  • genetic counseling or testing
  • prophylactic mastectomy
  • prophylactic oophorectomy
  • doctor-recommended lifestyle changes
  • mental health counseling

Enhanced screening was the most common risk-reducing step affected by financial concerns and was an issue for women whether they had insurance or not. While more frequent screening with ultrasound or MRI is recommended for women at high risk of breast cancer, the women in this study reported that it was difficult to get insurance to cover these extra screenings.

The study also found that some of the women felt their doctors didn’t suggest genetic counseling or other preventive care because the women didn’t have insurance, had low income, or both.

When the women made decisions about whether they could afford preventive care, they didn’t just look at the cost of a specific test or procedure. They had to balance the cost of preventive care with other expenses, including child care and medical debt for themselves or other members of their families.

"Financial barriers seem to regularly impede access to critical information that high-risk women can only get through genetic counseling and testing, and keep them from using regular screenings that could catch cancers in the earliest and most treatable stages," said co-lead author Tasleem Padamsee, assistant professor of health services management and policy at Ohio State. "For women at the highest levels of risk, financial impediments can also put the most effective preventive surgeries and medications entirely out of reach," she added.

"Underinsurance was a really big factor — even for those women who have private insurance, they come across a lot of hurdles with requesting coverage for genetic testing, counseling, risk-reducing surgeries and enhanced breast screening," said study co-lead author Rachel J. Meadows, Ph.D., MPH, who worked on the research as a doctoral student at Ohio State's College of Public Health. "These women are managing other priorities, including weighing paying for care for chronic diseases they currently have against managing a future risk. And they have other financial demands, including raising children and supporting other family members."

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What this means for you

All women — no matter their age, ethnicity, economic status, or insurance status — deserve the best healthcare possible.

The results of this study are troubling and strongly suggest that even with what is considered high-quality health insurance, women are often delaying or skipping preventive care they would like to have.

If you know that you’re at high risk of breast cancer and are concerned about paying for more frequent screening, it makes sense to talk to your doctor, a hospital social worker, or a staff member at a mammogram center. Ask about free or low-cost mammogram programs and healthcare services in your area.

If your insurance company balks at covering extra screening or screening with MRI, talk to your care team and ask if there is a way they can help get the screening covered.

It’s your health and your future, and you deserve the best care possible.

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Written by: Jamie DePolo, senior editor

Reviewed by: Brian Wojciechowski, M.D., medical adviser


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