Women Who’ve Experienced Breast Cancer Suggest Changes to Ease Financial Burden of Disease

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The costs of breast cancer treatment and follow-up care can be a financial strain for a number of people and their families, even with health insurance. Besides the cost of the treatment itself, you also may be facing extra expenses for travelling to and from a treatment center, child care while you’re having treatment, or lower income because you have to take time off from work.

Women who had been treated for breast cancer suggested changes to insurance and supportive services, among other recommendations, to help ease financial problems related to a breast cancer diagnosis, according to a study.

The research was published online on March 6, 2019, by the journal Cancer. Read “Patient recommendations for reducing long-lasting economic burden after breast cancer.”

About the study

To do the study, the researchers conducted in-depth interviews with 40 women who had been diagnosed with breast cancer about 12 years earlier, on average. The interviews were done between May and September 2015.

The women’s characteristics:

  • all the women lived in Pennsylvania or New Jersey
  • average age was 64
  • 42.5% were black and 52.5% were white
  • 53% were college graduates or had a graduate degree
  • 11% had an annual income of less than $30,000
  • 58% had an annual income between $30,001 and $70,000
  • on average, the household income supported two people
  • 35.1% had cash assets of less than $5,000
  • all the women had health insurance; 82.5% had private insurance
  • 62% were diagnosed with stage 0 or stage I breast cancer
  • 39% were diagnosed with stage II or stage III breast cancer
  • 77% were treated with chemotherapy
  • 83% were treated with radiation
  • 25% were treated with hormonal therapy
  • 60% had lymphedema

The in-depth interviews were designed to:

  • better understand the financial problems the women faced after being diagnosed
  • bring to light the types of issues they had with insurance companies
  • learn who the women asked for help
  • outline what the women thought should happen so women diagnosed with breast cancer in the future could avoid financial problems

The women’s recommendations

Overall, the women offered nine recommendations that could be put into action:

  • Help people understand what is covered by insurance and how to work through changes when switching to a new insurance provider.
  • Make sure that everyone has access to high-quality insurance that covers required and elective cancer services with low co-pays, premiums, and deductibles.
  • Expand insurance coverage for lymphedema supplies and lymphedema management, including long-term physical therapy and other complementary therapies.
  • Make sure everyone has access to supportive care and services by expanding support groups and buddy services.
  • Make home healthcare services after cancer treatment available to many more people.
  • Offer help with household chores, child care, and transportation.
  • Expand the eligibility for financial aid and social services to include people whose income is above the poverty line.
  • Provide financial counseling or navigation throughout the diagnosis and treatment process.
  • Expand policies to protect employment and offer more medical leave time.

“No one should have to make a choice between their health and their money,” said lead author Lorraine T. Dean, assistant professor of epidemiology at Johns Hopkins University. “Yet breast cancer survivors face incredibly high prices that can lead to severe financial hardships, even bankruptcy. 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.”

In the past, recommendations from patients to keep insurance costs low have been criticized for potentially increasing costs for insurance companies. Still, the researchers who did this study noted that in a state that expanded coverage for lymphedema services and treatment, patient out-of-pocket costs went down, as did hospitalizations related to lymphedema. The expanded coverage had less than a 0.1% effect on insurance claim costs and less than a 0.2% effect on insurance premiums after 10 years.

If you need help, financial resources are available

If the thought of paying for breast cancer treatment and follow-up care seems overwhelming, know that resources are available to help you. Don’t panic, and don’t skip any treatments or doctor’s visits.

While the women’s suggestions haven’t been implemented, there are steps you can take and services that will help you. Many doctors keep lists of organizations that offer financial assistance for breast cancer medicines and care, as well as local organizations that offer financial assistance for practical needs such as transportation, food, and child care. Many pharmaceutical companies have set up special funds to help pay for the cost of their medicines.

For much more information and links to resources, visit the Breastcancer.org Paying for Your Care pages.

You also can discuss your financial concerns with others in the Breastcancer.org Discussion Board forum Employment, Insurance, and Other Financial Issues.

Written by: Jamie DePolo, senior editor

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


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