Financial Burden in Blood or Marrow Transplantation Survivors During the COVID-19 Pandemic: A BMTSS Report

PURPOSE

The financial burden experienced by blood or marrow transplant (BMT) survivors during the COVID-19 pandemic remains unstudied. We evaluated the risk for high out-of-pocket medical costs and associated financial burden experienced by BMT survivors and a sibling comparison group during the COVID-19 pandemic.

METHODS

This study included 2,370 BMT survivors and 750 siblings who completed the BMT Survivor Study survey during the pandemic. Participants reported employment status, out-of-pocket medical costs, and financial burden. Medical expenses ≥ 10% of the annual household income constituted high out-of-pocket medical costs. Logistic regression identified factors associated with high out-of-pocket medical costs and financial burden.

RESULTS

BMT survivors were more likely to incur high out-of-pocket medical costs (11.3% v 3.1%; adjusted odds ratio [aOR], 2.88; 95% CI, 1.84 to 4.50) than the siblings. Survivor characteristics associated with high out-of-pocket medical costs included younger age at study (aOR_{per_year_younger_age}, 1.02; 95% CI, 1.00 to 1.03), lower prepandemic annual household income and/or education (< $50,000 US dollars and/or < college graduate: aOR, 1.96; 95% CI, 1.42 to 2.69; reference: ≥ $50,000 in US dollars and ≥ college graduate), > 1 chronic health condition (aOR, 2.82; 95% CI, 2.00 to 3.98), ≥ 1 hospitalization during the pandemic (aOR, 2.11; 95% CI, 1.53 to 2.89), and being unemployed during the pandemic (aOR, 1.52; 95% CI, 1.06 to 2.17). Among BMT survivors, high out-of-pocket medical costs were significantly associated with problems in paying medical bills (aOR, 10.57; 95% CI, 7.39 to 15.11), deferring medical care (aOR, 4.93; 95% CI, 3.71 to 6.55), taking a smaller dose of medication than prescribed (aOR, 4.99; 95% CI, 3.23 to 7.70), and considering filing for bankruptcy (aOR, 3.80; 95% CI, 2.14 to 6.73).

CONCLUSION

BMT survivors report high out-of-pocket medical costs, which jeopardizes their health care and may affect health outcomes. Policies aimed at reducing financial burden in BMT survivors, such as expanding access to patient assistance programs, may mitigate the negative health consequences.

INTRODUCTION

Most health insurance plans in the United States do not cover all health care–related expenses, resulting in out-of-pocket costs incurred by an individual that the health insurance plans do not reimburse, including deductibles, coinsurance, and copayments for covered expenses, plus costs for uncovered services. Incurring out-of-pocket medical expenses that exceed 10% of the annual household income constitute underinsurance and can have a significant impact on the health and well-being of the individual.^1-6 Underinsured individuals are particularly vulnerable when faced by economic instability, especially those with chronic health conditions. This vulnerability was heightened during the COVID-19 pandemic, when the number of unemployed Americans increased from 6.2 million in February 2020 to 20.5 million in May 2020.⁷

CONTEXT

• Key Objective

• To determine the impact of employment transition and high out-of-pocket medical costs on the financial burden experienced by blood or marrow transplant (BMT) survivors during the COVID-19 pandemic.

• Knowledge Generated

• This cohort of 2,370 BMT survivors was followed for a median of 14.7 years after BMT reported a high rate of unfavorable employment transition and high out-of-pocket medical costs, which jeopardized their health care and may affect health outcomes.

• Relevance (I. Cheng)

• The financial burden experienced by blood or marrow transplant survivors during the COVID-19 pandemic has notable consequences in health care, pointing to the importance of implementing solutions across multiple levels of the health care system.*

  *Relevance section written by JCO Associate Editor Iona Cheng, PhD, MPH.

Patients with cancer carry a high financial burden^1,2,8,9 that affects their quality of life and survival.^10-12 Patients with cancer treated with blood or marrow transplantation (BMT) receive higher-intensity therapeutic exposures and experience a substantially higher burden of morbidity than experienced by their conventionally treated counterparts.¹³ How the BMT survivors have handled the economic impact of COVID-19 disease in the face of the high burden of morbidity remains unknown. In the present study, we sought to evaluate the prevalence of high out-of-pocket medical costs experienced by the BMT survivors and a sibling comparison group during the COVID-19 pandemic. We also sought to identify the relation between high out-of-pocket costs and the adverse consequences of financial burden (eg, jeopardizing medical care).

METHODS

BMTSS

BMTSS is a retrospective cohort study with prospective follow-up. BMTSS examines long-term outcomes in individuals who have survived two or more years after undergoing BMT. The cohort includes patients who received allogeneic or autologous BMT at City of Hope (COH), University of Minnesota (UMN), or University of Alabama at Birmingham (UAB) between January 1, 1974, and December 31, 2014, and survived ≥ 2 years after BMT. The cohort is linked periodically to the National Death Index (NDI) Plus to determine the date and cause of death. Siblings of BMT recipients who participated in BMTSS serve as a non-BMT comparison group.

Participation in BMTSS involves periodic completion of the BMTSS survey by BMT survivors and the sibling comparison group. Disease and treatment characteristics are obtained from medical records and include pre-BMT exposure to radiation (cranium, chest, abdomen, and pelvis) and chemotherapy (alkylating agents, anthracyclines, and antimetabolites). Details of the conditioning regimen (total body irradiation and chemotherapeutic agents), conditioning intensity (myeloablative and nonmyeloablative/reduced intensity), stem-cell source (bone marrow, peripheral blood stem cells, and cord blood), and donor type (autologous and allogeneic) are captured from the institutional transplant databases and/or medical records. The Institutional Review Board at UAB serves as the single Institutional Review Board of record for the participating sites (UMN and COH); participants provide informed consent according to the Declaration of Helsinki.

Original BMTSS Survey

The original BMTSS survey covered the following content: specific chronic health conditions as diagnosed by a health care provider (along with age at diagnosis), relapse of primary cancer, development of subsequent neoplasms, and history of chronic graft versus host disease (GvHD). The survey also asked for sociodemographic characteristics (sex, race/ethnicity, education, employment, annual household income, and health insurance). The reliability and validity of the BMTSS survey show that BMT survivors are able to report their outcomes with a high degree of accuracy.¹⁴

BMTSS_2020 Cohort

For the present study, we invited BMT survivors and siblings who had completed the original BMTSS survey before March 1, 2020, at age ≥ 18 years and were alive at the time of the current study. Survivors and siblings completed the BMTSS_2020 survey between October 2020 and November 2021, after a median of 4.9 years (survivors) and 4.6 years (siblings) from completion of the BMTSS original survey. The sample included 2,370 BMT survivors (78.3% response rate) and 750 siblings (77.5% response rate; Fig 1).

FIG 1.

Study diagram.

The BMTSS_2020 survey asked the survivors to self-report employment status, health care utilization, and out-of-pocket medical costs since March 1, 2020. To assess out-of-pocket medical costs, we asked participants, “since March 1, 2020, about how much did you/your family spend out-of-pocket for your medical care? Include out-of-pocket expenses for prescription drugs, copayments and deductibles, but do not include health insurance premiums or any costs paid by your health insurance.” We defined high out-of-pocket medical costs to be ≥ 10% of household income (also referred to as underinsured).^1-6 We adapted national surveys (National Health Interview Survey [NHIS], Medical Expenditure Panel Survey [MEPS], and Commonwealth Fund Health Insurance Survey)^15-19 to ask the participants to respond to a series of questions about financial challenges since March 1, 2020, and changes in behavior because of the financial challenges since March 1, 2020. The financial challenges and the changes in behavior related to the financial challenges are detailed in the Data Supplement (online only).

In addition, we used this survey to obtain information regarding key morbidities (kidney problems, heart disease, blood clot, stroke and problems with learning/memory, and subsequent neoplasms/recurrence of primary cancer).

Statistical Analysis

High out-of-pocket medical costs.

Survivor versus sibling comparison.

We conducted multivariable logistic regression analysis to examine the odds of high out-of-pocket medical costs in BMT survivors when compared with siblings, adjusting for demographic characteristics (age at study participation, sex, race/ethnicity, marital status, annual household income, education, employment status during the pandemic, and health insurance status), chronic health conditions, occurrence of COVID-19 disease, and health care utilization (hospitalization or emergency department visit during the pandemic).

Analysis restricted to BMT survivors.

We conducted multivariable logistic regression analysis to identify factors (demographic characteristics [age at study participation, sex, race/ethnicity, marital status, annual household income, education, employment status during the pandemic, and health insurance status], clinical factors [primary cancer diagnosis, stem-cell source, BMT type, conditioning intensity, and cGvHD], chronic health conditions, COVID-19 disease, and health care utilization during the pandemic) associated with high out-of-pocket medical costs. Backward selection was used to identify variables retained in the final multivariable model.

Association between high out-of-pocket medical costs and financial burden.

To examine associations between high out-of-pocket costs and financial challenges, we used logistic regression models, adjusting for potential confounders (demographic characteristics [age at study participation, sex, race/ethnicity, marital status, annual household income, education, employment status during the pandemic, and health insurance status], clinical factors [primary cancer diagnosis, stem-cell source, BMT type, conditioning intensity, and cGvHD], chronic health conditions, COVID-19 disease, and health care utilization during the pandemic). We fit models with each indicator of financial challenge as the outcome and used out-of-pocket medical costs > 10% of household income as the key risk factor. Backward selection was used to identify variables retained in the final multivariable model.

For our statistical analysis, we used SAS v9.4 (SAS Institute Inc, Cary, NC). All reported P values are two-sided and considered significant at an α-level of .05.

RESULTS

Overall, 2,370 survivors and 750 siblings completed the BMTSS_2020 survey. Compared with the siblings, survivors were less likely to be non-Hispanic White (76.5% v 88.3%), less likely to have an annual household income > $100,000 in US dollars (USD; 31.2% v 40.8%), less likely to have completed college (48.4% v 56.4%), and less likely to have private insurance (68.8% v 80.9%). On the other hand, survivors were more likely to have chronic health conditions (kidney disease: 15.2% v 5.6%), heart disease (19.7% v 8.1%), and subsequent neoplasms (34.5% v 17.7%) and more likely to report health care utilization during the pandemic (≥ 1 hospitalizations: 14.3% v 8.8%; ≥ 1 emergency department visits: 18.3% v 11.5%) compared with siblings (Table 1). The reasons for hospitalization are summarized in the Data Supplement. Among survivors, the three most common reasons for hospitalization were infection (14.7%), surgical interventions (11.9%), and heart disease or stroke (11.2%).

TABLE 1.

Participant Characteristics

As shown in Table 1, the 2,370 BMT survivors completed the BMTSS_2020 survey at a median age of 63.7 years (19.9-91.3) after a median follow-up of 14.7 years (6-45.1) from BMT. The most prevalent indications for BMT included non-Hodgkin lymphoma (25.2%), acute myeloid leukemia/myelodysplasia (24.9%), and plasma cell dyscrasias (18.5%). Allogeneic BMT recipients constituted 50.5% of the cohort; peripheral blood stem cells were used in 69.4%, and myeloablative conditioning in 73.5% of the transplants; 44.4% of the survivors had received total body irradiation.

High Out-of-Pocket Medical Costs

Survivor versus sibling comparison.

Compared with the siblings, BMT survivors were over-represented among those experiencing high out-of-pocket medical costs (11.3% v 3.1%, P < .001). Multivariable analysis adjusted for demographic and clinical characteristics; chronic health conditions; COVID-19 disease; time between March 1, 2020, and study participation; and health care utilization and employment status during the pandemic revealed that survivors had significantly greater odds of experiencing high out-of-pocket medical costs compared with siblings (adjusted odds ratio [aOR], 2.88; 95% CI, 1.84 to 4.50, Table 2).

TABLE 2.

Risk of High Out-of-Pocket Medical Costs—Survivor-Sibling Comparison

Analyses restricted to BMT survivors.

As shown in Table 3, survivor characteristics associated with high out-of-pocket medical costs included younger age at study (aOR_{per_year_younger_age}, 1.02; 95% CI, 1.00 to 1.03), lower prepandemic annual household income and education (< $50,000 and/or < college graduate: OR, 1.96; 95% CI, 1.42 to 2.69, reference: ≥ $50,000 and ≥ college graduate), diagnosis of acute myeloid leukemia/myelodysplasia (aOR, 1.72; 95% CI, 1.17 to 2.53; reference: non-Hodgkin lymphoma), having > 1 chronic health condition (aOR, 2.82; 95% CI, 2.00 to 3.98), being hospitalized at least once during the pandemic (aOR, 2.11; 95% CI, 1.53 to 2.89), and being unemployed (aOR, 1.52; 95% CI, 1.06 to 2.17).

TABLE 3.

Risk of High Out-of-Pocket Medical Costs in BMT Survivors

Financial Challenges During the COVID-19 Pandemic

Figure 1 summarizes the financial challenges reported by survivors and siblings. Of note, given that the prevalence of siblings with high out-of-pocket medical costs was only 3.1% (n = 23), we compared all siblings with BMT survivors with and without high out-of-pocket medical costs. The financial challenges faced by BMT survivors with low out-of-pocket medical costs were comparable with those faced by the siblings (Fig 2). However, when compared with siblings, BMT survivors with high out-of-pocket medical costs were more likely to report problems in paying medical bills (33.6% v 2.7%); more likely to defer medical care (67.5% v 27.6%) and skip a test, treatment, or follow-up (28.4% v 6.9%); and more likely to not fill a prescription (22.8% v 2.9%) or take a smaller dose of medication than prescribed (16.0% v 3.5%). They were more likely to have borrowed money (25.0% v 6.5%) or taken on credit card debt (39.2% v 10.8%). Finally, they were more likely to report that they were unable to pay for basics such as food, heat, or rent (26.5% v 8.3%) and more likely to think about filing for bankruptcy (8.2% v 0.7%).

FIG 2.

Financial burden in blood or marrow transplant survivors (by high v low OOP medical costs) and siblings. OOP, out‐of‐pocket.

Table 4 summarizes the multivariable analyses demonstrating the association between high out-of-pocket costs and specific financial challenges. When compared with BMT survivors with low out-of-pocket medical costs, survivors with high out-of-pocket medical costs were more likely to report problems in paying medical bills (aOR, 10.57; 95% CI, 7.39 to 15.11). Survivors with high costs were more likely to defer care (aOR, 4.93; 95% CI, 3.71 to 6.55) and skip a test, treatment, or follow-up (aOR, 5.92; 95% CI, 4.18 to 8.37). Furthermore, survivors with high out-of-pocket medical costs were more likely to not fill a prescription (aOR, 7.91; 95% CI, 5.32 to 11.76) or take a smaller dose of medication than prescribed (aOR, 4.99; 95% CI, 3.23 to 7.70). They were more likely to have borrowed money (aOR, 4.31; 95% CI, 3.03 to 6.13) or taken on credit card debt (aOR, 3.88; 95% CI, 2.90 to 5.19). Finally, they were more likely to report that they were unable to pay for basics such as food, heat, or rent (aOR, 3.37; 95% CI, 2.43 to 4.68) and more likely to think about filing for bankruptcy (aOR, 3.80; 95% CI, 2.14 to 6.73).

TABLE 4.

Associations Between Out-of-Pocket Medical Costs ≥ 10% of Household Income and Indicators of Financial Challenge for Blood or Marrow Transplant Survivors

DISCUSSION

In a large multi-institutional cohort of BMT survivors surveyed during the pandemic, we found that the prevalence of underinsured survivors was high when compared with a non-BMT comparison group. Of particular importance, underinsured BMT survivors were more likely to report that they were unable to pay for basics such as food, heat, or rent, defer medical care, not fill a prescription, take smaller doses of prescribed medications, borrow money, and think about filing for bankruptcy.

The COVID-19 pandemic and the efforts to contain it led to a tripling of unemployment rates in the United States.²⁰ During the pandemic, 26% of the BMT survivors with high out-of-pocket medical costs were unemployed as compared with 7.5% of the sibling comparison group. When compared with those who were employed, the unemployed BMT survivors were 1.5-fold more likely to be underinsured or carry high out-of-pocket medical costs. Thus, unemployment during the pandemic likely exacerbated the financial burden experienced by the BMT survivors.

There is inadequate information regarding out-of-pocket medical costs in BMT survivors.^21-23 Previous studies are limited by the small sample and short post-BMT follow-up (< 3 years). Nonetheless, these studies found that BMT survivors experience financial hardship despite insurance coverage. However, none of these studies examined the prevalence or predictors of being underinsured and their implications in the health and well-being of long-term survivors. In our study, survivors followed for a median of 14.7 years after BMT were 2.9 times more likely to have high out-of-pocket medical costs (ie, were underinsured) as compared with a non-BMT sibling comparison group. The underinsured BMT survivors were younger, had lower prepandemic socioeconomic status, were unemployed during the pandemic, had multiple comorbidities, and were more likely to undergo hospitalization during the pandemic. These underinsured survivors were 10.6 times more likely to have problems in paying their medical bills when compared with those who did not have high out-of-pocket medical costs. They were more likely to report difficulties in paying for basics such as food, heat or rent, were more likely to borrow money, and were 3.8 times more likely to think about filing for bankruptcy. The prepandemic literature indicates that patients with cancer were 2.65 times more likely to file for bankruptcy than the general population²⁴ and were more likely to be female, younger, and non-White.¹²

Our study found that these financial hardships made the survivors more likely to consider choices that could negatively influence their health, such as deferring medical care and not filling prescriptions. The underinsured constitute a vulnerable population at particularly high risk for experiencing financial burden related to high medical costs who may ultimately suffer worse health outcomes by foregoing medical care.^25-28 We have identified patient characteristics that can be used to proactively address financial concerns. These findings provide insights into how high out-of-pocket medical costs and financial burden influence patients' approaches to their medical care and decision making. Our study identifies the unique and most commonly endorsed issues related to financial burden in cancer survivors with high out-of-pocket medical costs and underscores the need to improve financial support systems so that the BMT survivors can maintain access to quality medical care. Indeed, decisions made by BMT survivors to not adhere to prescribed medical care or forgo preventative care because of the financial burden during the pandemic may negatively influence the quality and quantity of life^{10-12,25,29-32}; this vulnerable population will need to be followed closely.

Our study attempts to understand the magnitude of financial burden in BMT survivors who are a median of 14.7 years from transplant, with the added challenges of the COVID-19 pandemic. Our findings have important policy implications. The high risk of morbidity coupled with the financial burden makes the BMT survivors particularly vulnerable to negative health outcomes.^12,26,27,31 Policymakers and health care providers likely do not recognize this burden. There should be an ongoing dialogue between clinicians and patients about the financial consequences of their care across the entire trajectory of disease from diagnosis to survivorship. Multidisciplinary efforts to intervene could possibly involve financial support services, and/or social work, limits on patient out-of-pocket costs, and expanding access to patient assistance programs.

This study needs to be placed in the context of its limitations. Despite the fact that we used national surveys for asking participants to self-report out-of-pocket expenses,^16,19,33 inaccurate recall could have possibly resulted in some misclassification. We did gather detailed information about deductibles, coinsurance or copayments for covered expenses, or insurance premiums. When examining the employment status and its association with out-of-pocket medical costs, we could not consider whether the survivor or their significant other held the insurance policy. Finally, lack of longitudinal data pertaining to health insurance, financial burden, and out-of-pocket medical costs from before to during the pandemic precluded us from ascribing the financial burden to the pandemic.

We determined that during the COVID-19 pandemic, financial burden was prevalent among adult BMT survivors and high out-of-pocket medical costs were associated with high financial burden. In addition, we found that those with high out-of-pocket medical costs were more likely to engage in behaviors that could adversely affect their health outcomes. The protracted nature of financial stress in patients with cancer^25,28 makes it critical to follow this vulnerable population for long-term consequences.

AUTHOR CONTRIBUTIONS

Conception and design: Smita Bhatia

Financial support: Smita Bhatia

Administrative support: Smita Bhatia, Jessica Wu, Elizabeth Schlichting, Stephen J. Forman, Mukta Arora, Saro H. Armenian

Provision of study materials or patients: Smita Bhatia, Erin Funk, Ravi Bhatia, Mukta Arora, Saro H. Armenian

Collection and assembly of data: Smita Bhatia, Lindsey Hageman, Jessica Wu, Elizabeth Schlichting, Arianna Siler, Erin Funk, Jessica Hicks, Shawn Lim, Nora Balas, Alysia Bosworth, Hok Sreng Te, Liton Francisco, Mukta Arora, Saro H. Armenian

Data analysis and interpretation: Chen Dai, Jessica Wu, Ravi Bhatia, Stephen J. Forman, F. Lennie Wong, Mukta Arora, Saro H. Armenian, Daniel J. Weisdorf, Wendy Landier

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Financial Burden in Blood or Marrow Transplantation Survivors during the COVID-19 Pandemic: A BMTSS Report

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).