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The Impact of the Affordable Care Act on Cancer Survivorship

Leopold, Christine PhD, MS*; Park, Elyse R.†‡; Nekhlyudov, Larissa

doi: 10.1097/PPO.0000000000000263
Review Articles
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In 2010, the Patient Protection and Affordable Care Act (ACA) was implemented with the aim of expanding access to quality, affordable care. In this review, we describe the ACA provisions that are most relevant for cancer survivors, provide available published evidence, and offer insights for future research. We found that provisions focusing on access to preventive care, access to quality and coordinated care, and coverage expansion and increased affordability suggest beneficial effects. However, we identified research gaps specifically addressing the intended and unintended consequences of the ACA on cancer survivorship care. Whether or not the ACA continues in its current form, research should address the effects of enhanced preventive services, innovative models of care, and payment structures that promote quality of care, as well as access to affordable, equitable care for a growing population of cancer survivors.

From the *Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute; †Massachusetts General Hospital Cancer Center; ‡MGH Mongan Institute for Health Policy Center, Massachusetts General Hospital/Harvard Medical School; and §Department of Medicine, Brigham & Women’s Hospital, Boston, MA.

The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

Reprints: Christine Leopold, PhD, MS, Department of Population Medicine, Division of Health Policy and Insurance Research, Harvard Medical School and Harvard Pilgrim Health Care Institute, Landmark Center, 401 Park Dr Suite 401, Boston, MA 02215. E-mail: christine_leopold1@hphc.org.

As of 2016, there are approximately 15.5 million children and adults living with a history of cancer; this number is expected to increase to 20.3 million by 2026.1 More than half of cancer survivors are older than 70 years, and many have comorbid health conditions that require long-term management.2–4 Significant growth in the number of cancer survivors has emphasized the need for coordinated, comprehensive follow-up care, as well as management of late- and long-term physical and psychosocial effects due to cancer and its treatment.5 The 2006 landmark report by the Institute of Medicine, From Cancer Patient to Cancer Survivor: Lost in Transition, made 10 recommendations aiming to enhance the care of cancer survivors, including one specifically focusing on the need for “federal and state policy makers to ensure that all cancer survivors have access to adequate and affordable health insurance.”6 The Patient Protection and Affordable Care Act (ACA)7 of 2010 has been recognized by the cancer community, both professional and advocacy organizations, as an important step forward in insurance and payment reform to expand the number of insured patients, control costs, and incentivize health care delivery system changes.8–12 In this article, we review the provisions of the ACA, provide available evidence, and offer insights into future opportunities for research. Furthermore, this review may aid in promoting an evidence-based dialogue about potential revisions of the ACA.

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METHODS

We reviewed the provisions of the ACA13 and categorized them into the following themes: (1) access to preventive care; (2) access to quality, coordinated care; and (3) coverage expansion and increased affordability (Table 1). In order to provide evidence for this narrative review, we conducted a literature search in the PubMed database, as well as in gray literature (such as reports by various professional cancer organizations, the Department of Health and Human Services and the National Academies of Sciences, Engineering and Medicine). In the first round, we searched for the terms “Affordable Care Act and cancer survivors,” which resulted in 17 articles. In a second round, we expanded the search to “Affordable Care Act and cancer” and found 213 articles, of which 75 were relevant for this review. The main inclusion criterion was whether the article offered sufficient information on the effects of the ACA on cancer patients. The search was conducted in November 2016 with a final update in January 2017. We used Zotero reference software to search and manage references.14 Articles were reviewed by 1 author (C.L.); additional references that were missing from the review were provided by the other 2 authors (E.R.P. and L.N.). There were no date restrictions in our search the articles were mostly published after 2010, following the release of the ACA. Our literature search informed our discussion in each of the themes, providing evidence where available (Table 2).

TABLE 1

TABLE 1

TABLE 2

TABLE 2

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Access to Preventive Care

General Relevance for Cancer Survivors

The investment into prevention and public health programs is especially relevant for cancer survivors. First, as has been described in population-based studies, chronic conditions such as hypertension, cardiac failures, diabetes, and dyslipidemias are prevalent among cancer survivors at diagnosis and following treatment and are often the leading causes of mortality.15–17 Second, because of their older age, comorbid medical conditions, and, for those continuing treatment, ongoing immunosuppression with chemotherapy, prevention of infectious diseases (such as influenza, pneumonia, and shingles) through vaccination is critical.18 Third, cancer survivors may be at risk of other cancers; therefore, disease prevention must include risk- and age-based appropriate screening.19–21 Fourth, smoking cessation is of immense importance for all survivors, particularly for those whose cancers may have been associated with tobacco.22,23 Lastly, obesity is a leading factor in cancer-related mortality,24 thus emphasizing the need for weight management programs and regular physical activity among cancer survivors.25

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ACA Provisions With Respect to Preventive Care

As outlined in Table 1, pertinent provisions in this theme include (1) preventing disease and illness, (2) providing coverage for preventive care in general and specific for seniors, and (3) improving preventive health coverage. Specifically, the ACA included a $15 billion investment into proven prevention and public health programs, such as smoking cessation and obesity treatment13,26; all new plans are required to cover certain preventive services such as mammograms and colonoscopies without charging a deductible, copay, or coinsurance; certain preventive services, such as annual wellness visits and personalized prevention plans for seniors on Medicare, are to be provided free of charge; and new funding was allocated for state Medicaid programs for preventive services. Evidence-based covered services include those rated as “A” (strongly recommended) or “B” (recommended) by the US Preventive Services Task Force, vaccinations recommended by the Advisory Committee on Immunization Practices, and those services for infants, women, and children recognized by the Health Resources and Services Administration.

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Evidence From Literature

Studies have shown that out-of-pocket payments can be a barrier to the use of recommended preventive services, and reductions in cost sharing were found to be associated with increased use of preventive services.27–30 Literature focusing on the effects of the ACA on preventive services utilization has been restricted to the general population. For example, Han et al31 found significant increases in blood pressure and cholesterol screening as well as influenza vaccination rates before and after the implementation of the ACA. While Han et al31 showed only few changes for breast, cervical, and colorectal cancer screening services, other studies have shown positive effects of the ACA on uptake of mammography and colorectal cancer screening in the general population.27,32–36

Literature regarding the effect of the ACA on smoking cessation and obesity (in the general population and among cancer survivors) has been limited. Prior to the ACA implementation, there was a 2-fold greater prevalence of current smoking among cancer survivors with no health insurance compared with those survivors with health insurance37; however, we did not find any studies assessing the effects on smoking cessation after the implementation of the ACA.

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Suggestions for Future Research

The results to date show positive effects of the ACA provisions on expanding access to preventive care in the general population, and while evidence among cancer survivors is lacking, these findings should be generalizable to those with prior cancers. It is important that future studies compare the effects of the ACA preventive care expansion on cancer survivors compared with those with no cancer and, specifically, whether there may be potential differences associated with survivors’ characteristics (i.e., race, socioeconomic status, age).

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Access to Quality, Coordinated Care

General Relevance to Cancer Survivors

The majority of survivors experience late- and long-term effects and long-term comorbidities, including those that are physical, cognitive, and psychosocial.38–40 Dowling et al41 and Yabroff et al42 showed that 37% of cancer survivors have a history of heart disease, and 17% have a history of diabetes, highlighting the importance of assessing and managing comorbidities as part of survivorship care.41,42 Furthermore, Rosales et al43 showed that during survivorship visits 31% of breast cancer survivors report 2 separate medical concerns to their physician, whereas 38% of survivors report 3 or more concerns. Cancer survivors were more likely to have hospitalizations, emergency room visits, ambulatory surgeries, and provider visits as compared with those without a cancer history.44

Hence, cancer survivors have an increased need for posttreatment care coordination including proper monitoring, assessment, and guidance on a healthy lifestyle and treatment.11,45,46 As recommended by the American Society of Clinical Oncology and the American Cancer Society, after the completion of the initial treatment, regular follow-up visits by their primary care providers and continued surveillance (e.g., annual mammograms for breast cancer survivors) are advised.20,47–52 In addition, the National Comprehensive Cancer Network survivorship guidelines recommend consideration of 8 distinct areas during posttreatment care including anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders.53

Quality, coordinated care for cancer survivors must include attention to cancer screening and surveillance, management of late- and long-term effects, psychosocial care, comorbid condition management, and health promotion.54–58 In order to enhance the care for survivors, there has been significant research placed on models of care (such as provision of follow-up care in oncology vs primary care settings, physician led vs nurse practitioner led), among others.59,60 Unfortunately, evaluation of survivorship care quality is limited, partly because of lack of quality metrics, which are being developed.60,61

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ACA Provisions With Respect to Quality, Coordinated Care

With the implementation of the ACA, a focus on strengthening community health centers as well as on rebuilding the primary care workforce was given. Furthermore, a strong emphasis was placed on enhancing care coordination and communication including the implementation of innovative care models, including those aiming to bring costs down and promote bundle payments and value-based payments, as well as new care delivery models. All of these efforts are aiming to move toward quality-based care, linking payment to outcomes. For example, accountable care organizations promote the integration of care and the use of alternative payment models with the goal of improving care. The Center for Medicare and Medicaid Innovation promotes “the development and testing of new reimbursement and care delivery models that demonstrate savings while maintaining quality, a shift from volume- to value-based payment models (such as bundled payments and value-based purchasing) was introduced.”62 Specific provisions in this theme are listed in Table 1. In July 2016, the Centers for Medicare & Medicaid Services (CMS) developed the Oncology Care Model, an innovative, multipayer model focused on providing higher-quality and more coordinated oncology care. After a selection period, 190 physicians groups and 16 payers have entered into payment arrangements that include financial and performance accountability for episodes of care defined by treatment with anticancer therapy.63 The Centers for Medicare & Medicaid Services also initiated the development of oncology patient-centered medical home (PCMH) models of care delivery for patients with newly diagnosed disease and relapsed patients. The goal is to improve health outcomes, enhance patient experiences, and reduce costs by reducing emergency department care and hospitalization.64

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Evidence From Literature

Several specific oncology-based PCMHs have been implemented and suggest reduction of unnecessary resource use such as a 68% decrease in emergency visits and a 51% decrease in hospital admission per patient treated with chemotherapy.65 In addition, referral coordination and care management were the most demonstrated functions in oncology practices, and cancer survivorship planning was mentioned to be among the desired features to be implemented in oncology practices in the future.66 However, many of CMS’s innovative oncology care models have been only recently implemented and have not yet been fully evaluated.

Preliminary results of a case study of oncology-specific PCMH practices in New Mexico as part of the Center for Medicare and Medicaid Innovation COME HOME initiative demonstrated a reduction in patient admissions/readmission, increased treatment guideline concordance, and improved generic prescribing.67 Furthermore, early results of a bundled payment pilot in oncology implemented by United Health Care in 2014 suggest significant decreases in costs as compared with fee-for-service payments.68

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Suggestions for Future Research

There has been great interest in assessing models of care that may be offered to cancer survivors, but evaluation of such models has been mostly lacking.56,69–71 While the ACA introduced comprehensive changes to strengthen patient-centered care, quality, and continuity of care, it did not explicitly address survivorship care planning needs. However, the newly implemented CMS Oncology Care Model does require the development (as recommended by the IOM Report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,”6 of a care management that includes treatment goals, expected total and on-of-pocket costs, attention to psychosocial needs, and a survivorship plan. Evaluation of these models will help to inform cancer survivorship care.

Furthermore, it is critical that quality metrics for cancer survivorship are developed and are used to incentivize providers and health care systems.56 The use of electronic health records plays an essential role in developing and implementing cancer survivorship plans as it should facilitate communication among different providers. However, interoperability between different electronic health record systems still places a huge barrier to real-world usability.

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Coverage Expansion and Increased Affordability

General Relevance to Cancer Survivors

It has been well documented that a cancer diagnosis leads to significant financial burden due to the cost of treatment.72,73 Zafar et al74 refer to “financial toxicity of cancer care,” which includes not only the very high drug costs but also the overall out-of-pocket spending for cancer care for patients.75,76 Cancer survivors’ financial burden, including out-of-pocket costs of medications, leads to difficulty paying for basic living necessities.77–80 Furthermore, cost has been shown to be a barrier in adherence with long-term adjuvant therapy, such as aromatase inhibitors for women with breast cancer.81 In addition, a cancer diagnosis may lead to untoward implications on employment, reduced work productivity, and unemployment due to long-term disability.82–86 The annual productivity loss for adult survivors of childhood cancer is estimated at $8169 per person compared with $3083 per person without a history of cancer due to greater need for assistance with personal care and work limitations (e.g., unable to work or miss more days of work due to health issues).87 Declining rates of employer-sponsored coverage nationally exacerbated the financial struggles of cancer survivors. As a consequence of preexisting conditions, high costs of treatment, and changes in employment, survivors may struggle obtaining and keeping health insurance. Studies have shown that maintaining insurance to cover their posttreatment care was strongly influenced by employment activities, job productivity, and personal finances especially in those younger than 65 years.88–90 Parsons et al91 found that more than 25% of adolescent and young adult cancer survivors experienced episodic lack of insurance, lasting for up to 35 months after diagnosis. The study also found that insurance rates were high in the initial year after diagnosis but decreased substantially at follow-up. In addition, King et al92 and others93 found that there were significant racial disparities in obtaining care for cancer survivors often due to costs and organizational and transportation barriers.

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ACA Provisions With Respect to Coverage Expansion and Increased Affordability of Care

One of the pillars of the ACA is the emphasis on expanding coverage and making care more affordable. In Table 1, we summarize the relevant features linked to expanding coverage of health care services. Specifically, (1) the expansion of services for disabled individuals, early retirees, young adults, and for the elderly; (2) prohibiting denying coverage for patients due to preexisting conditions or based on gender; (3) eliminating annual limits on insurance coverage as well as lifetime limits; (4) offering prescription drug discounts and closing the prescription drug “donut hole” for seniors; and (5) ensuring coverage for individuals in clinical trials. As of 2014, all insurance policies sold to individuals and small groups have to cover an essential benefit package defined by the federal government, giving more protection to cancer patients and survivors in the private health insurance market.94–98

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Evidence From Literature

Even though a number of provisions of the ACA expand coverage and increase affordability of care, several studies focusing on survivors of childhood cancer have shown that knowledge about the benefits of the ACA is low. Prior to the ACA, Park et al99 found that while most insured survivors of childhood cancers were satisfied with the quality of their coverage they reported having high annual out-of-pocket costs. Uninsured survivors, however, minimized and avoided needed care, and almost all respondents lacked knowledge on the specifications of the ACA’s coverage expansion. Hence, the study team concluded that assistance in navigating new health care provisions is needed for childhood cancer survivors.99 Similarly low level of familiarity with the ACA and its possible benefits was found by Warner et al100 in a population of 53 childhood cancer survivors recruited from the Utah Cancer SEER Registry. A 2015 study by Park et al101 showed that survivors of childhood cancer and their siblings considered key features of the ACA as being very important, leading to increased availability of primary care, no waiting period before coverage initiation, and affordable premiums. Nevertheless, survivors did not believe that through the ACA they would receive quality coverage, but rather expected that costs would increase and access would decrease.101 Utilizing National Health Interview Survey data from 2010 to 2014, Kuhlthau et al102 compared childhood survivors to matched controls without a cancer history and found disparities in insurance coverage, care affordability, and delays and forgoing care due to financial concerns. Parsons et al103 compared insurance rates of cancer survivors before and after the implementation of the ACA and showed that among young cancer survivors (18–25 years) overall insurance rates increased after the ACA implementation, but not for those aged 26 to 29 years.

With the option of enrolling in health savings accounts and its requirement to enroll in high-deductible health plans (HDHPs), which have lower annual premiums but higher deductibles of least $1300 for an individual or $2600 for a family, there has been an increase in the adoption of HDHPs.104 Several studies examining the impact of HDHPs in the general population showed that those enrolled in HDHPs were more likely to reduce utilization of services because of increased out-of-pocket spending.36,105,106 The mandated changes to HDHPs may pose untoward effects on cancer survivors and need further study. We were unable to find evidence regarding the effect of the ACA provisions on making cancer treatments more affordable, for example, by lowering financial toxicity for patients, especially among disabled or early cancer survivor retirees. Furthermore, we did not find studies that specifically addressed whether the elimination of denying coverage due to preexisting condition or annual limits has increased access to care for cancer survivors. Lastly, while several cancer advocacy groups contribute to increasing patients’ and caregivers’ awareness of caner clinical trials, no studies were found that showed ACA’s effect on increased access to clinical trials.106

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Suggestions for Future Research

While there are no data to date, the ACA features on denying coverage for patients with preexisting conditions, eliminating annual limits on insurance coverage, and covering clinical trials are likely to have significant beneficial effects on cancer survivors. Empiric evidence addressing these gaps in literature may support these hypotheses. Furthermore, enrollment of survivors in clinical trials is needed, for example, to help identify methods to reduce potential late- and long-term effects of cancer treatment. Studies must address the implications of HDHPs, as well as the potential reversal of provisions focusing on coverage expansion and affordability.

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SUMMARY

The ACA was recognized among the professional and advocacy cancer organizations as an important stepping stone in the provision of affordable, accessible quality care.6,10,107–109

Early results suggest that as the general population cancer survivors may have greater access to preventive services and screening programs. The implementation of new care models including the involvement of primary care physicians shows promising patient-oriented outcomes. Coverage expansion and increased affordability of care have suggested positive implications for cancer survivors. A lack of evidence on how the ACA may affect cancer survivors, as well as a low level of familiarity of ACA’s benefits, might prevent even greater impacts of the ACA on cancer survivorship care. Gaps in evidence remain and should be addressed (Table 2), through acknowledging the challenges of measuring the overall impacts of the ACA due to the piecemeal implementation of the provisions, as well as the dynamic national and state health initiatives.

Leading US professional and advocacy cancer organizations strongly recommend that patients have meaningful access to affordable health care coverage, as well as care that is high quality and value based.12,107 Whether the ACA remains or is reformed, it is critically important that decisions take into account the potential intended and unintended consequences of the ACA provisions on health outcomes and quality of life of individuals with preexisting conditions such as cancer survivors.

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Keywords:

Affordable Care Act; cancer survivorship; health care access; health care coverage

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