Accessing Out-of-Network Subspecialty Cancer Care in Marketplace Plans

Health Highlights

Editor’s Note: In a new report prepared in partnership with the Leukemia & Lymphoma Society (LLS), summarized below, Manatt Health reviews policy challenges that may hamper patients’ ability to navigate and obtain proper treatment for their cancer. The review focuses on four states and their policy and regulatory frameworks governing marketplace plans. Findings are based on interviews to ascertain the perspectives of state regulators, insurers and cancer care providers. Information is presented through the lens of a patient navigating the cancer care journey and the coverage-associated rules put in place by plans and states. Click here to download a free copy of the full report.

Blood cancer takes a demanding physical, mental and emotional toll on the 1.3 million patients living with this disease in the U.S. Many blood cancer patients also face the daunting task of managing their own care—obtaining the right treatment, at the right time, from the right provider, at the right cost. That process is not always simple, and patients with blood cancer face numerous obstacles when navigating their care.

For example, some forms of blood cancer are rare and require the most advanced treatments, which may only be available at a limited number of facilities such as large academic medical centers and National Cancer Institute (NCI)-designated cancer centers. These challenges can be exacerbated by provider networks—the list of providers and hospitals that a patient’s insurer has contracted with to provide care. When these networks are limited, patients may face barriers that prevent them from accessing appropriate care due to high out-of-pocket costs associated with out-of-network care. While the Affordable Care Act (ACA) provided protection for patients from catastrophic cost sharing for in-network services, limits on cost sharing do not automatically apply to out-of-network cost sharing.

In many cases, patients may be able to receive medically necessary out-of-network care with in-network levels of cost sharing. However, doing so often requires patients to navigate their plans’ coverage determination and appeals processes, which can be complex and time intensive.

Fortunately, there are specific policies that states and health plans can implement to improve network adequacy and access to medically necessary care for treatment of cancer and other health conditions, including:

  • Adopting robust network adequacy standards and/or refining reactive network adequacy standards to include certain service-level requirements that allow for greater specificity
  • Creating and enforcing proactive network maintenance mechanisms to identify potential problems
  • Increasing transparency and streamlining appeals processes
  • Increasing state resources for regulatory bodies
  • Providing enhanced educational information and supporting services to providers and consumers regarding appeal mechanisms
  • Pursuing policies to protect particularly vulnerable populations
  • Considering the development of cancer care-specific network adequacy standards

Background on the Regulatory Landscape and the Impact on Cancer Care Access

The ACA created rating standards and other consumer protections aimed at ensuring access to comprehensive, affordable health insurance coverage. Under the ACA, qualified health plans (QHPs) offered on or off an ACA marketplace must maintain provider networks that offer sufficient numbers and types of providers to ensure that all services are accessible to enrollees without unreasonable delay; this is a standard known as network adequacy.

Neither the ACA nor federal regulations, however, specify the precise standards for network adequacy. Rather, patients’ access to QHP coverage for their cancer care is a function of (1) network adequacy requirements set by state regulators, (2) insurer development of provider networks that underpin insurance products and (3) providers that contract with plans to provide services at set in-network rates. As a result, provider networks are influenced by sometimes competing motivations and priorities among regulators, insurers and providers.

Patient and Provider Experience Factors

To thoroughly understand how narrow networks impact patients seeking cancer care, it is critical to understand the multiple factors that contribute to the patient and provider experience—including the significant cost of cancer care. A 2018 analysis supported by LLS found that in the first year following diagnosis, the average cost of treating a patient’s blood cancer is nearly $157,000 and that in the following years, treatment costs remain high for many patients. Consumers are protected from catastrophic cost sharing for in-network services under the ACA, but limits on cost sharing do not automatically apply to out-of-network cost sharing.

Provider consolidation is another factor. Over the past few decades, the regional availability of cancer care has consolidated, resulting in a smaller number of providers via the formation of “mega health systems” and affiliated networks that contract with payers together.

Relatedly, there are 71 NCI-designated cancer centers, located across 36 states and the District of Columbia, that are funded by NCI and recognized for their scientific and research leadership. These centers are likely to attract patients who have a rare diagnosis and those who require more complex and costly care. Studies have shown that most are out-of-network for some or all of the QHPs in their state. These centers are increasingly consolidating. Providing next-generation therapies, they may serve as the sole provider for some medically necessary cancer care, raising potential concerns around access for patients.

Narrow Networks

Researchers and advocates have documented the increase in narrow-network insurance plans and their purchase by consumers, particularly within the individual market. Health plans started offering coverage in 2014 under the new ACA rules and subsidies. Among 2015 federal marketplace plans, nearly 15% had no in-network physicians within 50 miles for at least one specialty. Relatedly, a 2017 academic study found that narrower provider networks have a higher likelihood of systematically excluding oncologists affiliated with NCI-designated or NCCN cancer centers. Therefore, patients in narrow-network plans not only may have less access to blood cancer providers but also may never even have the option of seeking them out as they are unable to gain access to the appropriate treatment centers.

Federal rules leave states considerable flexibility to interpret whether a health plan’s network is compliant with the ACA’s network adequacy rules, including the ACA’s standard that sufficient numbers and types of providers are available to deliver benefits without “unreasonable delay.” Federal and state rules also require health insurers to make provider directories available so that the network is transparent as consumers shop for plans. States regulate the adequacy of insurer networks through quantitative (i.e., specific) and subjective (i.e., flexible) standards. Subjective standards allow insurers greater flexibility to identify reasonable delays and provider-enrollee ratios.

Over time, trends indicate the issuers have come to rely on narrow networks as a means of controlling costs. Issuers have competed primarily on the basis of premiums in the individual market, driven in part by the knowledge that consumers mostly choose coverage based on the cost of a plan’s monthly premium. Moreover, the structure of the ACA’s advance premium tax credit rewards insurers with the lowest premiums: premium tax credit amounts are established by the second-lowest-cost “Silver” tier plan, and accordingly, insurers with the lowest-cost or second-lowest-cost premiums are much more likely to attract tax-credit-eligible enrollees.

To control costs, plans in the individual market have moved toward offerings that are narrower. Meanwhile, employers are moving more slowly toward narrow networks. According to a Kaiser Family Foundation (KFF) report, 7% of small companies with less than 200 employees offered a narrow-network plan in 2018, while 5% of larger firms with more than 200 employees offered a narrow-network plan.

Parallel to issues of network design are the general difficulties accessing major cancer centers. Prior research has indicated both benefits and challenges in seeking care at cancer centers. While these institutions may have access to novel investigational agents, technology biobanks and other treatment pathways, access to these facilities is limited to specific regions and areas, complicating both immediate and longer-term survivorship care, which can lead to higher overall costs over time.

These factors can lead consumers to choose narrower-network products that may not have access to these specialized centers. Therefore, once a diagnosis is given, patients will have few options for gaining access to treatment in a facility that is best for their needs.

Second opinions may even have an impact on the diagnosis and care that patients receive. For example, a 2018 study found that a second review by a multidisciplinary tumor board at an NCI-designated cancer center changed the diagnosis for 43% of patients in the study.  However, there is wide variability in state laws and regulations that provide protections for second opinions, and few states do so for cancer services or anything beyond surgical procedures.

An emerging, less-discussed issue for patients navigating narrow networks is the denial and appeal process by which patients may receive an exception and be able to access medically necessary out-of-network care. The federal government, through the departments of Health and Human Services, Labor and Treasury, has outlined requirements for health plans to provide appeal processes, as well as explanations of benefits and other documents to educate consumers about their appeal rights. To abide by these regulations, states and insurers have tools and processes in place for consumers to file complaints and for insurers to grant exceptions in cases where narrow networks lead to lack of available providers for certain diagnoses and treatments.

When faced with these processes, however, consumers may not choose to appeal insurer decisions. An analysis from the KFF utilized data from 122 major medical issuers to show that ACA marketplace plans denied more than 40 million claims, or 17% of all claims. Of these denials, the vast majority (72%) were denied for reasons other than the service being excluded from their coverage (18%), requiring a prior authorization or referral (9%), or based upon an evaluation of medical necessity (1%). A consumer may seek external review of a claim if it was denied based on medical necessity or related clinical reasons.

Consumers also may appeal decisions to the insurer, but they appealed fewer than 64,000, or less than 0.2%, of all denials. Moreover, when consumers appeal claims denials to their insurers, insurers uphold their original decision 60% of the time.

Key Findings From State-Level Analysis

The report’s findings are based on an analysis of four states’ policy and regulatory frameworks governing marketplace plans, as well as interviews representing the perspectives of states, insurers and cancer care providers. Manatt’s analysis focused on five key areas:

  1. Network adequacy standards for cancer care
  2. Scale of the impact of narrow networks on blood cancer treatment
  3. Patient experience
  4. Appeals and exceptions processes
  5. Additional cancer care-related consumer protections

The analysis revealed a complex set of dynamics summarized by five key findings:

  • The journey of patients from diagnosis to treatment can involve many complicated steps, especially when care is needed outside of their insurer’s network.
  • There is significant variation among state regulatory frameworks governing plan network development, network maintenance, appeals and grievance rights and processes, and other cancer care-related consumer protections.
  • States and insurers have guardrails in place to allow patients to seek medically appropriate treatment when the available in-network providers and services are insufficient. This is done primarily through appeals and grievance processes. While state regulators and plans do not report major problems with respect to patients utilizing these tools, the process is often complicated and difficult to navigate for patients.
  • Cancer providers are adept at navigating out-of-network coverage determination processes on behalf of their patients, usually at a cost to the providers’ respective systems.
  • According to payers and state regulators, patients often do not appeal plan decisions, due partly to complex appeals and grievances process or simply a lack of awareness. Some states have implemented incremental consumer protections to augment network adequacy and appeals/grievances processes.


Patients in marketplace plans have mechanisms that facilitate access to medically necessary out-of-network cancer care, but the patient journey to reaching a positive coverage determination can be complex and time intensive. These factors can ultimately be a deterrent for these patients, which may lead to suboptimal clinical outcomes for some patients. While these dynamics are complex, states have sought to minimize access-to-care issues, though with wide variation among frameworks for network development, network maintenance, appeals and grievances, and other consumer protections. Ultimately, states have several tools in their arsenal to support consumers in navigating the increasingly difficult insurance landscape during a challenging time in their patient journey.



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