Feature

High costs of breast cancer-associated lymphedema can 'cripple' patients financially

Lorraine T. Dean, ScD 
Lorraine T. Dean
Kala Visvanathan, MD, MHS 
Kala Visvanathan

Individuals with breast cancer continue to face high health care costs years after a diagnosis, according to study findings published in Journal of Supportive Care and Cancer.

The problem is particularly apparent among those with breast cancer-associated lymphedema.

Results showed annual out-of-pocket costs of $2,306 for those with lymphedema vs. $1,090 for those without lymphedema — a 112% difference — when excluding productivity costs, and $3,325 vs. $2,792 when including productivity costs.

“That extra $1,000 or so may not break the bank in 1 year,” Lorraine T. Dean, ScD, assistant professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, said in a press release. “But it can take away discretionary spending, or whittle away retirement savings. If it is a recurring burden each year, how can one ever rebuild? That extra $1,000 in spending can cripple people long term.”

HemOnc Today spoke with Dean and Kala Visvanathan, MD, MHS, professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, about the potential explanations for why breast cancer is associated with such high costs, and what should be done to address the problem.

Question: What prompted this research?

Dean: We already knew that just having a breast cancer diagnosis could increase health care costs, and that it could lead to increased financial burden or even bankruptcy. Greater financial burden also is associated with greater mortality after cancer. There is limited information on the costs for those living with lymphedema. On top of this, most studies on lymphedema costs had only been calculated within the first 2 years of lymphedema diagnosis. Lymphedema is a chronic condition, and people live with it long term, yet we did not know the long-term costs associated with this condition.

Q: How did you conduct the research?

Dean: This study had two components: a survey and an interview. We had patients — half of whom had lymphedema and half of whom did not — track their out-of-pocket costs for an entire year. We measured arm circumference to determine the severity of lymphedema. We then asked them to fill out a log about their health care costs in different categories, and to bring in receipts and documents. Through an online survey, they were able to document how much they spent for each visit and whether those visits were related to lymphedema. In addition, we asked them about their time away from work and any out-of-pocket health care costs they may have faced, including those specifically related to lymphedema. We also did one-on-one, 30-minute interviews with 40 randomly selected patients. We asked them questions about their history, how their financial burden had changed over time and what they thought should happen as a result. This is the topic of a pending paper that we hope to publish.

Q: What did the findings show?

Dean: No surprise to us, we found that even 10 years later, women with breast cancer-related lymphedema had higher costs. What was surprising was the magnitude. These women had more than double the costs of women without lymphedema.

Q: Why are breast cancers associated with such high costs?

Visvanathan: As shown in this study, the high costs are not just due to initial treatment, but also ongoing treatment — such as hormone therapy —and complications of treatment, such as lymphedema. Only some of these costs may be covered by insurance. Higher costs, in turn, can delay treatment, reduce income and delay retirement.

Q: What should be done to address the problem?

Dean: There is something very direct that clinicians can do. There is an advocacy step here. Every year since 2010, a piece of legislation known as the Lymphedema Treatment Act has been presented in Congress. Essentially, this legislation would allow all lymphedema supplies, not just breast cancer-related lymphedema supplies, to be covered as durable medical equipment under Medicare, thus reducing or eliminating out-of-pocket costs for patients. Unfortunately, although it had many co-sponsors last year, it was not brought to a vote. But it is gaining traction. A lymphedema directive was included in the House and Senate Appropriations Committee Report, which will elevate its importance.

Q: Is there anything else that you would like to mention?

Dean: Our study suggests that higher costs are an issue for more than just women who do not have insurance. In this study, 98% of women had insurance. This speaks to the fact that even when someone has health insurance, it is not covering out-of-pocket expenses, which is why we need to expand insurance coverage. – by Jennifer Southall

For more information:

Lorraine T. Dean, ScD, can be reached at Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St., E6650, Baltimore, MD 21205; email: lori.dean@jhu.edu.

Kala Visvanathan, MD, MHS, can be reached at Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St., Baltimore, MD 21205; email: kvisvan1@jhu.edu.

Disclosure: Dean and Visvanathan report no relevant financial disclosures.

Lorraine T. Dean, ScD 
Lorraine T. Dean
Kala Visvanathan, MD, MHS 
Kala Visvanathan

Individuals with breast cancer continue to face high health care costs years after a diagnosis, according to study findings published in Journal of Supportive Care and Cancer.

The problem is particularly apparent among those with breast cancer-associated lymphedema.

Results showed annual out-of-pocket costs of $2,306 for those with lymphedema vs. $1,090 for those without lymphedema — a 112% difference — when excluding productivity costs, and $3,325 vs. $2,792 when including productivity costs.

“That extra $1,000 or so may not break the bank in 1 year,” Lorraine T. Dean, ScD, assistant professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, said in a press release. “But it can take away discretionary spending, or whittle away retirement savings. If it is a recurring burden each year, how can one ever rebuild? That extra $1,000 in spending can cripple people long term.”

HemOnc Today spoke with Dean and Kala Visvanathan, MD, MHS, professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, about the potential explanations for why breast cancer is associated with such high costs, and what should be done to address the problem.

Question: What prompted this research?

Dean: We already knew that just having a breast cancer diagnosis could increase health care costs, and that it could lead to increased financial burden or even bankruptcy. Greater financial burden also is associated with greater mortality after cancer. There is limited information on the costs for those living with lymphedema. On top of this, most studies on lymphedema costs had only been calculated within the first 2 years of lymphedema diagnosis. Lymphedema is a chronic condition, and people live with it long term, yet we did not know the long-term costs associated with this condition.

Q: How did you conduct the research?

Dean: This study had two components: a survey and an interview. We had patients — half of whom had lymphedema and half of whom did not — track their out-of-pocket costs for an entire year. We measured arm circumference to determine the severity of lymphedema. We then asked them to fill out a log about their health care costs in different categories, and to bring in receipts and documents. Through an online survey, they were able to document how much they spent for each visit and whether those visits were related to lymphedema. In addition, we asked them about their time away from work and any out-of-pocket health care costs they may have faced, including those specifically related to lymphedema. We also did one-on-one, 30-minute interviews with 40 randomly selected patients. We asked them questions about their history, how their financial burden had changed over time and what they thought should happen as a result. This is the topic of a pending paper that we hope to publish.

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Q: What did the findings show?

Dean: No surprise to us, we found that even 10 years later, women with breast cancer-related lymphedema had higher costs. What was surprising was the magnitude. These women had more than double the costs of women without lymphedema.

Q: Why are breast cancers associated with such high costs?

Visvanathan: As shown in this study, the high costs are not just due to initial treatment, but also ongoing treatment — such as hormone therapy —and complications of treatment, such as lymphedema. Only some of these costs may be covered by insurance. Higher costs, in turn, can delay treatment, reduce income and delay retirement.

Q: What should be done to address the problem?

Dean: There is something very direct that clinicians can do. There is an advocacy step here. Every year since 2010, a piece of legislation known as the Lymphedema Treatment Act has been presented in Congress. Essentially, this legislation would allow all lymphedema supplies, not just breast cancer-related lymphedema supplies, to be covered as durable medical equipment under Medicare, thus reducing or eliminating out-of-pocket costs for patients. Unfortunately, although it had many co-sponsors last year, it was not brought to a vote. But it is gaining traction. A lymphedema directive was included in the House and Senate Appropriations Committee Report, which will elevate its importance.

Q: Is there anything else that you would like to mention?

Dean: Our study suggests that higher costs are an issue for more than just women who do not have insurance. In this study, 98% of women had insurance. This speaks to the fact that even when someone has health insurance, it is not covering out-of-pocket expenses, which is why we need to expand insurance coverage. – by Jennifer Southall

For more information:

Lorraine T. Dean, ScD, can be reached at Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St., E6650, Baltimore, MD 21205; email: lori.dean@jhu.edu.

Kala Visvanathan, MD, MHS, can be reached at Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St., Baltimore, MD 21205; email: kvisvan1@jhu.edu.

Disclosure: Dean and Visvanathan report no relevant financial disclosures.