Breast Cancer Causes Long-Term Financial Burden for Many People, Especially Those With Lymphedema

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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 had to take time off from work. Then there is the cost of treating and/or managing long-term side effects, such as lymphedema or peripheral neuropathy.

One of the first studies to look at the long-term financial toll of being diagnosed with breast cancer has found that 12 years after being diagnosed, women had between $1,000 and $3,300 out-of-pocket care costs per year.

The research was published online on Aug. 18, 2018, by Supportive Care in Cancer. Read "'It still affects our economic situation': long-term economic burden of breast cancer and lymphedema."

Breastcancer.org Professional Advisory Board member Kathryn Schmitz, Ph.D., M.P.H., professor at the University of Pennsylvania Perelman School of Medicine, is one of the study’s authors.

More than half of people diagnosed with breast cancer face financial hardship

About half of people diagnosed with cancer face financial hardship because of their diagnosis. For people who develop lymphedema -- abnormal swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy -- healthcare costs can be even higher.

This study included 129 women from New Jersey and Pennsylvania who had completed treatment for stage I to stage III breast cancer. All the women had more than one lymph node removed. Other characteristics of the women:

  • 46.5% had been diagnosed with breast cancer-related lymphedema
  • the average age was 63
  • average time since being diagnosed with breast cancer was 12 years
  • about 60% of the women were college graduates or had advanced degrees
  • about 60% of the women were white and about 40% were black
  • about 62% of the women diagnosed with lymphedema had an annual income of less than $70,000
  • more than half of the women who didn’t have lymphedema had an annual income of more than $70,000
  • more than 98% of the women had insurance

The women were asked to record 6 months of direct, indirect, and productivity costs related to their healthcare, including:

  • copayments for doctor visits
  • physical and occupational therapy visits
  • complementary and integrative therapy visits
  • emergency department visits
  • hospitalizations
  • lab workups
  • X-rays and other tests
  • wellness resources (gym memberships, for example)
  • all lymphedema-specific healthcare needs for any part of the body (compression garments, bandages, etc.)
  • medicines or other health-related products
  • health insurance premiums, if paid out of pocket

The women also recorded what were called productivity losses at home and at work. Productivity losses were defined as times when the women couldn’t perform usual activities or needed help to perform these usual activities.

To capture a full year of information, the researchers asked the women to recall the previous 3 months of healthcare costs, using personal calendars, insurance statements, and receipts as memory aids. After recording healthcare costs for 6 months, the women also were asked to project the next 3 months of healthcare expenses.

To better understand why the women spent what they did and how their financial situations evolved since their diagnoses, the researchers did face-to-face interviews with 40 of the women. The women who were interviewed represented a range of socioeconomic status and ages and included women with and without lymphedema.

Many used savings, took out loans, or went into debt to pay for medical care

Many women said they used their savings, took out loans, or went into debt to pay their medical bills. Many women also said that paying their medical bills made it hard for them to pay for other basic needs, such as utility bills.

“I had to take my 401K money and pay bills, buy medicine…all the money I had saved up that would have sustained me [as a retiree] was gone,” said one woman who had been diagnosed with lymphedema.

“…I was no longer able to work because I had three surgeries,” said another woman who did not have lymphedema. “Then I had to do chemo and then I did radiation. I had my lights cut off. I had my water shut off. I had my gas shut off.”

The women’s medical care costs had a cascading effect on their future financial status by decreasing their ability to help family members, support their children’s education, and retire. For women who had been diagnosed with lymphedema, medical costs affected their ability to effectively manage the condition.

“I cannot afford to buy the compression sleeve,” said one woman with lymphedema. “...And insurance does not cover it … I had [private insurance that] did give me one sleeve. Right after that, they changed my health insurance [to Medicare], so it went from getting the sleeve to not getting the sleeve.”

Excluding productivity costs, the researchers estimated that women with lymphedema had an average of $2,306 in out-of-pocket medical costs per year. Women who didn’t have lymphedema had $1,090 in out-of-pocket costs. When productivity costs were included, women with lymphedema spent an average of $3,325 in out-of-pocket costs and women without lymphedema spent $2,792.

Paying for care is a recurring burden

"That extra $2,000 or so may not break the bank in one year," said study leader Lorraine T. Dean, Sc.D., assistant professor of epidemiology at Johns Hopkins University. "But it can take away discretionary spending, or whittle away retirement savings. If it's a recurring burden each year, how can you ever rebuild? That extra $2,000 in spending can cripple people over the long term."

Dean said that steps often discussed to help people cut costs, such as encouraging healthy behaviors, puts the obligation directly on patients to find ways to save money. Rather than add more to the burdens of people still dealing with the consequences of a serious disease, the researchers suggested strategies that change the healthcare system and the division of financial responsibility between insurers and patients.

For example, most insurance companies don't fully cover lymphedema care needs, which can be substantial. Congress is considering legislation that could amend Medicare to cover certain items, such as compression garments, as durable medical equipment.

"The U.S. is too resource-rich for people to have to make decisions between their health and their wealth," Dean said. "By making some important changes in coverage, we can help breast cancer survivors who continue to struggle with economic burdens long after their cancers are considered cured."

Financial resources are available

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

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. There are also lymphedema organizations, such as Lymphedema Resources, Inc., that have funds set up to help provide lymphedema garments and therapy to people.

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

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


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