Study Explores Underuse of Hormonal Therapy by Black Women

Researchers used surveys to compare reasons why black women and white women report never starting treatment, not following their doctor’s treatment plan, and stopping treatment entirely
Breast Cancer News
November 1, 2018
Madison Hughes, Content Coordinator
Reviewed By: 
Margaret Quinn Rosenzweig, PhD

A study in the Journal of the National Cancer Instituteinfo-icon found that black women are more likely to take daily hormonal therapyinfo-icon pills less often, or on a different schedule than prescribed, than are white women.


Hormone receptor-positive breast cancers grow in response to the hormones estrogeninfo-icon or progesteroneinfo-icon. They are treated with hormonal therapy, a type of medicineinfo-icon that blocks these hormones from telling cancer cells to grow. Taking hormonal therapy exactly as prescribed lowers the risk of hormone receptorinfo-icon-positive breast cancer coming back, and can help prevent new breast cancers from forming. Hormonal therapy is a daily pill. This daily dosage requires people who need it to remember to fill their prescriptions on time and to take the pill each day. Treatment lasts anywhere from 5 to 10 years.

Though research shows taking hormonal therapy works to lower the risk of breast cancer return, many women never start taking it or they do not follow their doctor’s instructions on how often to take it. This can be because of the cost of the medicine, forgetting to take it, or severe side effects. With hormonal therapy, not following the treatment plan can make the medicine work less well.

Historically, black women in the U.S. are less likely to get recommended breast cancer treatment than white women. Researchers believe this may be part of the reason black women are more likely to die from the disease once diagnosed.

The goal of this study was to understand the reasons black and white women don't take hormonal therapy as recommended, and to see if the groups differ in their reasoning. The hope is that by knowing how these factors contribute to take hormonal therapy differently than recommended impact black women, care teams can better support them during treatment. 

This study used surveys to look at why black and white women choose to alter their treatment schedule without consulting their doctors, what barriers exist to taking treatment according to schedule, symptoms experienced during therapyinfo-icon, and their beliefs about how well hormonal therapy will work.


The researchers for this study selected women enrolled in the existing Carolina Breast Cancer Study Phase III, a project that collected data on women in North Carolina diagnosed with breast cancer between 2008 and 2013. For the CBCS project, women submitted information about their insurance coverage, health behavior, quality of lifeinfo-icon and access to healthcare, along with information about their diagnosisinfo-icon. These same women agreed researchers could contact them 2 years after diagnosis, and up to 10 years after diagnosis, to ask more questions about their experience.

The participants in CBCS took a survey 2 years after their diagnosis. A total of 1,280 women with early-stageinfo-icon, hormone receptor-positive breast cancer and who identified as either black or white responded. The survey included questions about the experience of taking hormonal therapy, including if the participant

  • had a hard time sticking to the treatment plan
  • had trouble remembering to take the pills each day
  • missed pills because they couldn’t afford the prescriptioninfo-icon
  • missed pills because they didn’t refill the prescription on time
  • skipped pills because of side effects
  • forgot hormonal therapy when traveling

The survey also asked whether the participants felt they took the medicine as prescribed, and if they believed the medicine would help prevent cancer recurrenceinfo-icon. At the same time as this survey, the researchers used another tool to look at which hormonal therapy side effects the women experienced.

The researchers used the survey answers to look at four aspects of following a treatment plan:

  • Adherence, how well someone follows their treatment plan as recommended
  • Non-adherence, not taking medicine as prescribed, or missing two or more pills in the last 2 weeks
  • Discontinuation, stopping the treatment entirely
  • Underuse, anyone who reported non-adherence or discontinuation


The survey results showed that black women were less likely to take hormonal therapy as recommended than their white peers. Notably:

  • 23.7 percent of black women reported underuse, compared to 15.9 percent of white women
  • 13.7 percent of black women reported non-adherence, compared to 5.2 percent of white women

When it came to discontinuation, or stopping treatment, black and white women reported nearly the same rate, around 10 percent.

The researchers also looked at why the women said they didn’t take the medicine as recommended. They found that black women were more likely than white women to

  • have a hard time sticking to their treatment plan
  • forget to take hormonal therapy when traveling
  • have trouble remembering to take hormonal therapy
  • miss pills because they forgot to fill the prescription on time
  • miss pills because of the cost
  • experience worse and more severe symptoms

The study also found that black women were more likely to report they believed their risk of the cancer coming back would not change if they stopped taking hormonal therapy. But black women were also more likely to report they believed their risk of recurrence was very low if they completed hormonal therapy treatment.

When the researchers looked at lifestyle factors of the women who reported underuse of hormonal therapy, they found that women were more likely to underuse the medicine if they

  • got health coverage through Medicaidinfo-icon
  • earned less than $50,000 a year
  • felt they did not have a voice in deciding their treatment plan

Overall, the study found that the best ways to predict if someone may underuse hormonal therapy were

  • if the person did not fully understand the risk of not following the treatment plan fully
  • if the person felt they didn’t share in making treatment decisions  

What This Means For You

Taking hormonal therapy as prescribed by your doctor is important. Studies like this help healthcare providers understand why people skip or stop using medicines. Knowing more about what makes following a treatment plan hard helps care teams support people in taking needed medicine as recommended.

Research has shown that race can affect both the breast cancer experience and the experience of America’s healthcare system. It can be hard for many people of color to get the support and education they need to make treatment decisions, and barriers in access to health care can make it hard to get treatment when it’s needed.

The researchers on this study recommend that doctors do more to address the cultural and lifestyle realities that impact medical decisions when treating black women for breast cancer.

If your doctor recommended hormonal therapy as part of your breast cancer treatment, it’s OK to ask why you’re taking it, how often to take it, and if changing the treatment plan without checking in with your doctor will make the medicine work less well. It’s important that you understand the ins and outs of any treatment, and feel that you were part of the decision-making.

If you think you will have a hard time affording treatment or picking up your prescription on time, let your doctors or social workers on your care team know. They can talk to you about resources to help you access the medicine when needed, and give you tips on how to remember to take a medicine every day.

LBBC has resources with tips for voicing concerns to your doctors, such as our Breast Cancer 360 about communicating with healthcare providers. You can also contact our Breast Cancer Helpline for advice and support if you need it.

If you want to learn more about hormonal therapy or if you have financial concerns, you can check out our Guide to Understanding Hormonal Therapy and our Guide to Understanding Financial Concerns.


Wheeler, S, Spencer, J, Pinheiro, L, et al. Endocrine Therapy Nonadherence and Discontinuation in Black and White Women. JNCI: Journal of the National Cancer Institute. September 2018; DOI:10.1093/jnci/djy136

You must have Javascript enabled to use this form.