“It still affects our economic situation”: long-term economic burden of breast cancer and lymphedema

Nearly half of cancer survivors experience financial distress [1]. Cancer-related financial toxicity, the harmful personal economic burden caused by cancer treatment [2], affects nearly half of cancer survivors [1] and is present even among those with health insurance [2‐6]. Costs of cancer care are even higher for those with adverse treatment effects [7‐12], such as breast cancer-related lymphedema [13, 14], and comorbidities [3, 15].

Breast cancer-related lymphedema affects up to 35% [16, 17] of the 3.5 million breast cancer survivors in the USA (2016) [18]. Breast cancer-related lymphedema is a chronic inflammatory condition that arises when there is disruption of lymphatic flow due to surgery, adjuvant radiation, and some forms of chemotherapy, infection, obesity, or other trauma to the lymphatic system [17, 19], leading to buildup of lymphatic fluid in the upper body, especially the arms, breast, and torso [20, 21]. The arm swelling and altered lymphatic function caused by lymphedema may affect a breast cancer survivor’s ability to complete activities of daily living and maintain employment, leading to psychosocial distress, secondary comorbidities [19, 22‐24], and limited work and career opportunities [25‐27].

Previous work has estimated that incremental costs due to lymphedema for US cancer survivors at $14,877 (excluding cancer-related costs) in the first 2 years after cancer treatment initiation [13]; however, these estimates are nearly 15 years old, focused on only the short-term costs, and predate the 2010 Affordable Care Act that expanded coverage for cancer-related care and banned refusal of coverage for those who might have a pre-existing condition [28]. A patient’s decision about whether or not to expend resources on medical care versus other competing needs is driven by out-of-pocket costs. Yet, previous estimates rely on claims and administrative data, which neglect the impact of out-of-pocket costs. Altogether, data on out-of-pocket costs of lymphedema management is lacking for US-based samples and overlooks the long-term impact of cost and indirect costs, such as lost productivity.

To address gaps in this research topic and expand on previous inquiry, we conducted a prospective longitudinal explanatory mixed methods study. This is the first study in the USA to quantitatively compare long-term out-of-pocket direct and indirect costs among women with breast cancer-related lymphedema to those without a lymphedema diagnosis, integrating qualitative data to offer insight into what makes costs different comparing those with or without lymphedema.

The 129 participants who completed data for the study are described in Table 1. Across the entire sample, the mean age was 63 and the average time since cancer diagnosis was 12 years. Just under half (46.5%) of participants had been diagnosed with lymphedema. There was no statistically significant difference by lymphedema status in mean age, race, education, social status, wealth, credit score, type of insurance, or number of economically burdensome events. A significantly greater percentage of women with lymphedema were in a lower income category (p = 0.02) compared to those without lymphedema. Cancer stage at diagnosis, type of adjuvant treatments, and number of comorbidities did not differ by lymphedema status, but those with lymphedema were on average 3 years farther out from diagnosis (p = 0.002) and had greater interlimb difference (p < 0.001).

Figure 2 compares the average dollar amount difference, with and without productivity losses, for those who did not have lymphedema and those who did, controlling for age, race, socioeconomic position, type of cancer treatments, comorbidities, years since cancer diagnosis, and type of insurance. Excluding productivity losses, participants with lymphedema are estimated to have an average $2306 in out-of-pocket costs per year compared to $1090 for those without lymphedema (p = 0.006), or 112% higher costs (Fig. 2a). Including productivity losses, participants with lymphedema are estimated to have an average $3325 in out-of-pocket costs per year compared to $2792 for those without lymphedema (p = 0.55), or 19% higher costs (Fig. 2b). Among those reporting having lymphedema, Fig. 3 shows that nearly 50% of total costs were attributed to lymphedema.

Table 2 contains illustrative quotes that demonstrate the three major themes that emerged from the qualitative interviews comparing breast cancer survivors across lymphedema status. These interviews provide further insight into the burden of higher costs associated with lymphedema.

Study results suggest that the economic burden of breast cancer continues long after diagnosis. Women with lymphedema experience a higher burden, with or without indirect cost considerations. In the long term, women report losses to economic opportunity due to their cancer and lymphedema diagnoses. Despite the expansion of cancer-related insurance coverage under the Affordable Care Act, breast cancer survivors, with and without lymphedema, still face significant financial need.

Breast cancer survivors with lymphedema faced up to 112% higher total out-of-pocket costs when excluding productivity losses and up to 19% higher total out-of-pocket costs when including productivity losses, compared to those without lymphedema. The average out-of-pocket costs estimated in this study are lower than the roughly $11,000 per year previously estimated for US women [13]; however, previous estimates are based on costs closer to the time of treatment, when overall healthcare needs may be higher, and are based on women of working age, who would not have out-of-pockets subsidized by Medicare. These estimates are based on insurance claims, and not patient out-of-pocket costs, which may also contribute to why previous estimates differ from those found in the present study. Even though our costs are lower than previously estimated, the study provides evidence that costs for women with lymphedema remain significantly elevated long after cancer treatment. On average, there is a $500–$1215 difference. These economic burdens occur even among those who have health insurance.

Although nearly all of the women in the sample had some form of insurance, changes and challenges with insurance consistently complicated issues for both women who had lymphedema and those who did not. Studies conducted before the 2010 Affordable Care Act reported that financial burden created worry and anger when tools for lymphedema management were not covered by insurance [40]. The present study suggests that these challenges persist even after the Affordable Care Act, which has the potential to expand health insurance coverage for cancer-related care [41] and for cancer survivors [42, 43]. For women cancer survivors with lymphedema, who continued to manage a disease long after completing cancer treatment, these challenges persisted due to ongoing needs for lymphedema care. Women who did not have lymphedema reported insurance challenges related to coverage of cancer treatment and co-pays at the time of treatment but did not report challenges with current care.

Insurance coverage of lymphedema care varied over time and changed based on insurer. Previous findings suggest persistently high costs for cancer survivors who are insured by public insurance [44], which are particularly relevant because coverage for lymphedema treatment varies for public insurance [45]. Medicare covers: medically necessary manual lymph drainage performed by physical or occupational therapists, compression bandaging services, patient education on lymphedema self-care and lymphatic decongestion exercises, and pneumatic compression devices, but not for all compression self-management equipment (such as bandages). Medicaid expands on that coverage, with a few states covering compression garments and bandages. Switching from private to public insurance often posed the most problems when public and private insurance covered lymphedema differently such that patients’ needs were no longer met. When patients could not cover their costs, family members or social service organizations were sometimes able to help, but often patients simply went without the care they needed. Other studies have suggested that high out-of-pocket costs will cause patients to use compression garments that no longer apply sufficient pressure to manage lymphedema [46], which participants in our study corroborated. Interview participants reported that lack of coverage for lymphedema-related costs contributed to less lymphedema management and exacerbation of lymphedema.

This study confirmed that higher costs can only be partly attributed to lymphedema, above and beyond the presence of other comorbidities. Interview data suggest that higher costs for women with lymphedema stemmed from cumulatively high economic burden that cascaded over time and prevented women from fully recovering financially. It also highlighted that examining only financial costs due to lymphedema underestimates its full cumulative effect of economic burden on ability to afford other basic needs. Use of savings and retirement to cover lymphedema and healthcare costs can affect women long term and have intergenerational effects. Managing breast cancer-related lymphedema presents ongoing challenges, and adherence can be difficult due to ongoing costs. Having access to additional resources through family, credit, or savings is often leveraged, but may never be recovered, especially for those with ongoing lymphedema management needs.

The findings of this study are especially timely given the recent calls to reduce financial toxicity in US cancer patients through individual-level strategies, as encouraging healthier behaviors [47] and greater financial disclosure [48, 49]. But these strategies put the onus on patients to act in order to reduce cost, rather than pointing to healthcare systems to change to reduce costs. This approach may widen disparities since patients with the greatest resources will be able to afford better health, thus reducing costs is paramount. Some scholars have explored healthcare provider-driven recommendations to reduce economic burden [50]. Other scholars have called for introducing screening for financial toxicity, as well as a multi-level approach to reducing economic burden [51], and redesigning sick leave policies to better accommodate chronic disease needs [46]. For mitigating lymphedema costs in particular, advocates have supported the Lymphedema Treatment Act, which would amend Title XVIII (Medicare) of the Social Security Act to cover certain lymphedema compression treatment items as durable medical equipment under Medicare. Some states, including California, Louisiana, North Carolina, and Virginia, have issued their own laws, but the Act has not found success at the US Congressional level. A 2016 report found that expanding insurance coverage in one state had a less than 0.1% impact on insurance claims, while lowering costs for lymphedema treatment and lymphedema-related hospitalizations [52]. Our findings reinforce the need for actions at policy, provider, and individual patient levels, especially for those with lymphedema.

This analysis consisted of a small sample from one geographic area, the majority of whom had insurance, which may limit the external validity of the findings, especially given that insurance policies differ regionally. Responses may be different from women living in regions with other insurance offerings. Cost diaries pose a time burden on participants to complete, which may have led to missing entries: monthly text-based, e-mail, and phone messaging was used to remind participants to complete their diaries. Participants were also allowed to send in receipts and medical visit bill summaries in lieu of writing them into the cost diaries themselves. Nonetheless, the data that were collected comprehensively covered cost domains in real time, with over a 90% response rate in each month of data collected. Cost data collection was not prospective throughout, and the 3-month retrospective data may have been biased due to recall; to minimize the potential for bias, participants were asked to use supporting documents to aid in recall. The final 3 months were based on projected costs due to regular ongoing medical visits or needs, leading to underestimated costs because unexpected healthcare needs would not be included. Cost diaries may not comprehensively capture the various domains of direct, indirect, psychosocial, and time costs and only measure costs over the period of observation; thus, we used qualitative data to supplement our understanding of how and when various types of costs were incurred during the course of survivorship. These challenges mean that the cost estimates are conservative, and that actual out-of-pocket costs are likely higher than reported here. There may have been other clinical factors to consider that may influence cost, like cancer severity [53] as the initial economic shock that set patients on different financial trajectories. Data on stage at cancer diagnosis were excluded from the regression analysis due to a high percentage of missing data (16%), although available data suggest no difference in stage of diagnosis by lymphedema status. As a voluntary research study, those experiencing the greatest economic or health challenges may not have had time to enroll and participate, meaning that our results may underestimate economic burden. Results may not be generalizable to those with higher cancer stage, older age, or other tumor sites other than the breast, but breast cancer is among the most economically burdensome cancers.

Breast cancer survivors with lymphedema face higher costs than those who do not have lymphedema, even many years after cancer diagnosis. Although women with and without lymphedema experience a similar number of economically burdensome events and comorbidities, high out-of-pocket costs for women with breast cancer-related lymphedema lead to a cascade of other economic challenges that persist long after cancer treatment. Future work should explore patient-driven recommendations to reduce economic burden after cancer.