Patients With Breast Cancer Provide Recommendations to Ease Financial Toxicity


Key Points

  • Patients with breast cancer in the United States may experience greater economic burdens than those with other types of cancer, particularly those with treatment side effects such as lymphedema.
  • Previous studies of breast cancer–related financial toxicity have focused on provider and insurer perspectives on reducing costs, but not patient perspectives.
  • For this study, interviews were conducted with 40 long-term breast cancer survivors, and the interviewees offered 9 actionable recommendations, including changes to insurance, supportive services, and financial assistance.

A qualitative study yielded nine patient-driven recommendations across circumstances that include changes to insurance, supportive services, and financial assistance to reduce long-term, breast cancer–related economic burden. The study was published by Dean et al in Cancer.

Unique Burdens

Patients with breast cancer in the United States may experience considerably greater economic burdens compared with those who have other types of cancer. The financial burdens are often exacerbated for patients who are managing treatment side effects, particularly breast cancer–related lymphedema.

Lymphedema affects nearly 35% of U.S. breast cancer survivors and results in an estimated $14,877 in out-of-pocket costs in the first 2 years of a diagnosis. Previous research suggests that 10 years postdiagnosis, breast cancer survivors with lymphedema have over double the health-care costs as those not affected by lymphedema.

“No one should have to make a choice between their health and their money. Yet breast cancer survivors face incredibly high prices that can lead to severe financial hardships, even bankruptcy,” said lead study author Lorraine T. Dean, ScD, Assistant Professor in the Johns Hopkins Bloomberg School’s Department of Epidemiology, in a statement. “These recommendations offer ways to adapt a range of policies and practices that would make it more likely that breast cancer survivors can afford and attain the care they need.”

Previous studies of breast cancer–related financial toxicity have focused on provider and insurer perspectives on reducing costs, but not patient perspectives, noted Dr. Dean. “This study offered breast cancer survivors a voice to tell us what they think should be done to make their lives better,” she explained.

Methods and Findings

For the study, interviews were conducted with 40 long-term breast cancer survivors from New Jersey and Pennsylvania in 2015. Participants were chosen to ensure a range of ages, lifestyles, and severity of lymphedema. Of the 40 participants, 24 had lymphedema. The interviews were designed to better understand the financial problems participants faced after cancer, what types of issues they may have had with insurers, who they asked for help, and what they thought should happen so that future breast cancer survivors could avoid high costs.

The interviewees offered nine actionable recommendations:

  1. Provide assistance with understanding what is covered under insurance and how to navigate changes when switching to a new insurance provider.
  2. Ensure high-quality insurance that covers required and elective cancer services with low copays, premiums, and deductibles.
  3. Expand insurance coverage for lymphedema-specific supplies and lymphedema management, including long-term physical therapy and complementary and alternative medical treatments.
  4. Address psychosocial costs by expanding support groups and buddy services.
  5. Expand the availability of home health care services after cancer treatment.
  6. Provide domestic assistance with household chores, child care, and transportation.
  7. Expand eligibility for financial aid and social services to those who are not in poverty.
  8. Provide financial counseling or navigation throughout the diagnosis and treatment process.
  9. Expand policies that protect employment and medical leave to offer more acceptable leave time.

Previous recommendations included affordable insurance, prompt information on costs, and access to financial navigation and peer support. In this study, recommendations included institutional changes and policies that patients see as setting or driving costs.

Survey participants offered several ideas for changes to private business services and nonprofits. For example, mortgage deferment services, which are currently used for other reasons besides health, could be used to reduce expenses that could then be used for cancer treatment.

While many nonprofits currently have charitable assistance programs, study participants suggested that eligibility for assistance be determined by whether or not the patient has access to additional resources, rather than based on poverty guidelines. Additionally, physicians and health-care providers could make referrals for financial counseling services during the course of care.

The authors concluded, “Without changes, out-of-pocket costs will continue to be a challenge for the growing number of breast cancer survivors in the United States.”

Disclosure: The study authors' full disclosures can be found at

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.