Examining Medicaid Waivers: An Opportunity to Promote Equity in Cancer Care

Medicaid is the primary health insurance program for low-income Americans, offering comprehensive health care coverage to over 90 million people and ensuring millions of cancer patients receive essential care.¹ Expanded Medicaid eligibility has been associated with increased access to care, earlier stage at diagnosis, increased receipt of cancer-directed treatment, and improved survival.² However, significantly less is known about how Medicaid variation between states influences equity of cancer care delivery. Section 1115 waivers are a key mechanism through which states can customize Medicaid enrollment, coverage, and benefits. Currently, 48 states and Washington D.C. use these waivers to modify Medicaid within the state.³ Gaps remain in our understanding of how these different 1115 waivers influence access to, receipt of, and outcomes from cancer care. Filling these gaps is critical to improve equity of cancer care in the United States.

Section 1115 of the Social Security Act allows the Secretary of Health and Human Services to approve experimental or pilot demonstrations offering states flexibility to modify their Medicaid programs. These programs must be consistent with Medicaid’s objectives and remain federally budget neutral, meaning the total cost of the demonstration program must not exceed the cost without it. Over 70% of states that expanded Medicaid since 2016 had also utilized Section 1115 waivers before expansion.³ In addition, each of the ten states yet to expand Medicaid are using section 1115 waivers to modify their Medicaid program—six with current waivers and four pending federal approval. Thus, these non-expansion states could follow a similar path to full expansion.

1115 waivers are commonly used in expanding Medicaid coverage to populations in need. For example, states like Maine and Louisiana used waivers to extend coverage to childless adults and individuals living in areas not covered by traditional Medicaid, respectively. In total, 34 states currently have active or pending waivers that expand Medicaid coverage beyond what is prescribed by the Affordable Care Act. Expanding coverage to targeted groups increases access to care in general; but greater detail is needed to understand implications for often complex, multidisciplinary cancer care. Which groups are excluded from care based on program cutoffs, and how does this impact low-income cancer patients?

Extensive work has demonstrated how the financial, social, and environmental conditions in which people live, formally known as the social determinants of health (SDOH), impact the incidence of cancer, timely diagnosis, and receipt of cancer care. For example, individuals with limited transportation may have decreased access to medical visits and regular cancer screening leading to delayed diagnosis. Patients with limited financial resources or limited sick leave may be unable to afford costly treatments or needed time away from work to undergo treatment. The Biden administration expanded the focus of section 1115 waivers to address SDOH and Health Related Social Needs (HRSN) like food and housing insecurity, and transportation. Table 1 provides a selection of state programs implemented through 1115 waivers and describes their potential impact on cancer care, including risk reduction, early diagnosis, and access to care.

Table 1.

Examples of 1115 Waivers by State^b

State	1115 Demonstration	Goal(s)	Specific Measures / Populations Served	Potential Impact on Cancer Care
NC	Health Care Opportunities Pilots	Address Social Determinants of Health (SDOH)/Health Related Social Needs (HRSN)	Covers non-medical expenses that address housing instability, transportation and food insecurity, and toxic stress. Serving 25,000 – 50,000 Medicaid enrollees with at least one behavioral or physical risk factor, and one social risk factor.	Risk Reduction: Decreasing exposure to environmental toxins like asbestos, radon, secondhand smoke from poor quality and lack of housing. Increased Prevention: Addressing food insecurity can increase access to preventive care, including cancer screening. Increased Receipt of Care: Transportation provisions may improve utilization of care across the continuum, including frequent travel for chemotherapy or radiation treatments
IA	Iowa Wellness Plan	Expand Coverage Increase Personal Accountability	Expanded Medicaid eligibility to those up to a138% of FPL. Includes premiums and co-payments for some non-emergency care. Waives coverage for non-emergency medical transportation.	Increased Access to Care: Coverage for more than 300,000 residents Decreased Receipt of Care: Cost-sharing and transportation provisions may decrease access to cancer care across the continuum, including frequent travel for chemotherapy, radiation treatments, and survivorship.
CA	California’s “Whole Person Care” (WPC) Pilot program	Care Coordination	Aims to increase integration and data sharing among county agencies, organizations, and health plans. Serving high utilizers, individuals at-risk or experiencing homelessness, with severe mental illness or substance use disorders (SMI/SUD), or involved in criminal justice system.	Increased Access to Care: Improved care coordination may shorten delays in care that leading to poor cancer outcomes in populations with inconsistent engagement with medical system (e.g., people with severe mental illness or people experiencing homelessness).
AZ	Health Care Cost Containment System	Address SDOH/HRSN Care Coordination	Provides housing supports including up to 6 months rent/temporary housing, navigation services, coverage of utility and moving costs, deposits, and accessibility modifications. Additional supports include case management, outreach, education, and application assistance for state and federal benefit programs.	Risk Reduction: Decreasing exposure to environmental toxins like asbestos, radon, secondhand smoke, pollutants from poor quality and lack of housing.
MA	Mass Health	Address SDOH/HRSN Care Coordination	Provides housing supports including transition navigation services, coverage for moving costs, deposits, or accessibility modifications. Offers nutrition supports like counseling, meal delivery, food prescriptions. Other supports include case management, transportation, and linkage to other benefit programs with application assistance.	Risk Reduction: Access to high quality food and nutrition education can help maintain healthy lifestyle and reduce obesity, a known risk factor associated with numerous cancer types. Increased Receipt Care: Transportation provisions may improve utilization of care across the continuum, including frequent travel for chemotherapy or radiation treatments

Though many states are using 1115 waivers to increase access to care, other states are utilizing the program to impede continuous coverage or use of care. Despite federal prohibition of insurance premiums for Medicaid enrollees who earn less than 150% of the federal poverty level (FPL), eight states currently use 1115 waivers that permit cost-sharing.^a Cost sharing requires patients to pay for a portion of their health care services, through measures like co-pays and deductibles. For low-income cancer patients, cost sharing measures present a significant barrier that has been associated with delayed initiation of treatment, less adherence to prescription drugs, higher health care costs, and increased emergency room visits.^4,5 Additionally, at least two states have waivers that limit coverage for non-emergency medical transportation which has implications for whether patients are able to actually receive needed care, especially for iterative chemotherapy or radiation treatments. More research is needed to understand the impact of cost sharing and transportation provisions of 1115 waivers on utilization and receipt of cancer care.

Effective healthcare policy must be supported by data-driven demonstration of impact. Yet, there is limited research on the effects of 1115 waiver programs on cancer care. In one paper, researchers examined states using 1115 waivers to promote healthy behaviors and found increased rates of cancer screening mammography that were equivalent to states with traditional Medicaid expansion.⁶ While screening helps us detect cancer at an earlier stage, modulating oncogenic risk factors like tobacco use and obesity can help reduce the risk of developing cancer. Some states have implemented Healthy Behavior Incentive Programs (HBIPs) through section 1115 waivers providing financial incentives to encourage healthy behavior changes. In a 2018 study, researchers found that the section 1115 HBIPs did not increase rates of healthy behaviors like smoking cessation or weight loss.⁷ These studies provide some information on the specific impact of section 1115 waivers on cancer modulating risk factors and screening. However, given the substantial use of 1115 waivers, significant knowledge gaps persist as to how such programs impact patients along the cancer care continuum.

More focused attention is warranted to understand the impact of section 1115 waivers on the equity of cancer care delivery in the United States. Such research will inform our knowledge of the programs’ effectiveness and, in turn, be used to inform policy development, implementation, and improvement within individual states. Understanding the impact of the current section 1115 waivers may also illuminate potential pathways and opportunities for expansion in Medicaid eligibility in the 10 states that have not done so to date. Medicaid coverage remains a central component of cancer care for millions of Americans. Policy evaluation is needed now more than ever, given persistent uninsurance rates in non-expansion states and the expiration of the continuous enrollment provision that helped ensure insurance coverage during the COVID-19 pandemic. The cancer community has an opportunity to evaluate ongoing state-level interventions and work towards more effective, impactful, and equitable cancer care delivery.