The lasting impact of the ACA: how Medicaid expansion reduces outcome disparities in AYAs with leukemia and lymphoma

Visual Abstract

Abstract

The Affordable Care Act (ACA), fully implemented in 2014, introduced reforms to Medicaid and the Children's Health Insurance Program (CHIP), aiming to enhance health care access for vulnerable populations. Key provisions that can influence health outcomes in adolescents and young adults (AYAs) with blood cancers include Medicaid expansion, which covers adults with income less than or equal to 138% of the federal poverty level based on modified adjusted gross income (MAGI), streamlined eligibility and enrollment processes, CHIP and Medicaid integration, and dependent coverage reform. Non-MAGI eligibility pathways based on age, disability, or waiver programs provide alternative routes for Medicaid coverage. By improving insurance coverage, providing affordable care and financial protection, and addressing health-related social needs such as transportation to care, Medicaid expansion has the potential to mitigate outcome disparities along the continuum of AYA blood cancer care. However, challenges persist due to coverage gaps in nonexpansion states, complexities in administrative processes to maintain continuous coverage, and barriers to accessing specialists for complex, AYA-focused multidisciplinary cancer care. The ending of the COVID-19 public health emergency's Medicaid Continuous Enrollment Provision has disrupted coverage for many AYAs. Given limited research evaluating the impact of the ACA on AYA blood cancer outcomes, more evidence is needed to guide future policies tailored to this vulnerable population. Despite encouraging progress following the ACA, continued collaborative efforts between policymakers, health care providers, patient advocates, and researchers are essential for identifying targeted strategies to ensure continuous and affordable coverage, access to specialized and coordinated care, and fewer disparities in AYA blood cancer outcomes.

Learning Objectives

• Characterize the public health insurance programs in the post-ACA era that may impact AYAs with blood cancers

• Evaluate the implications of public health insurance programs in mitigating outcome disparities among AYAs with blood cancers

• Identify potential challenges that affect care access through the cancer control continuum among AYAs with blood cancers in the post-ACA era

Introduction

Significant advances have occurred in diagnostics and therapeutics for blood cancers in the United States. However, adolescents and young adults (AYAs) with cancer have not consistently benefited from these improvements, partly due to their transitional phase within societal structures. Financial toxicity resulting from inadequate health care insurance is increasingly recognized as a critical factor affecting cancer care and long-term survivorship. A comprehensive understanding of Medicaid and Children's Health Insurance Program (CHIP) policies impacting AYAs, along with a thorough assessment of the limitations and opportunities within these programs, is essential for ensuring timely and effective treatments for AYA blood cancers.

Medicaid and CHIP

Medicaid, a joint federal and state program, provides health coverage to over 90 million low-income Americans.¹ An estimated 39% (range, 17%-57% across states) of US children ages 0 to 18 were covered by Medicaid and/or CHIP in 2022 (Figure 1).² Historically, Medicaid eligibility has primarily been based on income or disability status.³ Before the Affordable Care Act (ACA) was signed into law in 2010, Medicaid income eligibility determination methods and thresholds varied across states.⁴ For example, the Medicaid income threshold for a family of 3 and parents without jobs in Alabama was 11% of the federal poverty level (FPL) in 2009; the median threshold was 41% of the FPL across 50 states and Washington, DC.⁵ Nondisabled adults without dependents were largely ineligible for Medicaid.⁵

Figure 1.

Percent of children aged 0-18 years who were covered by Medicaid and CHIP in 2022. Estimates were based on the American Community Survey, which includes children with Medicaid, Medical Assistance, or any kind of government assistance plan for those with low incomes or a disability (see data online publicly available at: https://www2.census.gov/programs-surveys/acs/tech_docs/subject_definitions/2022_ACSSubjectDefinitions.pdf). Data sourced from the Kaiser Family Foundation based on the 2008-2022. American Community Survey, 1-Year Estimates: https://www.kff.org/other/state-indicator/children-0-18.

CHIP, established in 1997 under its own federal rules with eligibility varying by state and age group, aims to provide affordable health coverage to children under 19 years of age whose family incomes are too high to qualify for traditional Medicaid. Many states set CHIP eligibility between 200% and 300% of the FPL before the ACA,⁵ and some have further increased since then.⁶ In 2024 roughly 37.5 million US children were enrolled in Medicaid and/or CHIP; of these, 19% were enrolled in CHIP, and 81% were on Medicaid.⁷

CLINICAL CASE 1

A 24-year-old man with acute myeloid leukemia in Georgia has lived independently since the age of 18 years and lacks stable employment. Previously covered by Medicaid as a minor, he lost eligibility when he turned 19 as a nonparent adult with income slightly above the FPL. Facing a likelihood of needing a bone marrow transplant, he enrolled in his parents' private health plan, which covers dependents until the age of 26 years. However, his prospects for maintaining lifelong insurance coverage for survivorship care are grim. Upon turning 26, he will lose insurance coverage, as nondisabled adults without children generally do not qualify for Medicaid in Georgia, an ACA nonexpansion state. If he had a dependent child, he would still remain ineligible because Georgia's Medicaid income eligibility threshold for parents is 31% of the FPL.

CLINICAL CASE 2

A 16-year-old girl with stage IV Hodgkin's lymphoma presented to a children's hospital in 2022. She lived with her single mother and 3 siblings. Her mother earns $30 000 annually as a grocery clerk. The adolescent lacked insurance at initial diagnosis but was enrolled into Medicaid through the “Katie Beckett” eligibility pathway by a social worker, which covered her initial chemotherapy. In October 2023 she returned for additional therapies but had lost Medicaid coverage in the interim because she no longer met the “institutional level of care” criteria required by the Katie Beckett pathway. Additionally, her Medicaid eligibility was not renewed post March 2023 following the end of the Continuous Medicaid Enrollment Provision implemented under the COVID-19 public health emergency, as her mother was unaware and lacked the time to apply for renewal based on their household income eligibility.

Medicaid/CHIP reform under the ACA and impacts on AYAs with blood cancers

Medicaid expansion under the ACA

The ACA, fully implemented in 2014, allowed state Medicaid programs to cover all nonelderly adults with income less than or equal to 138% of the FPL, including those without children. To achieve this goal, a standardized modified adjusted gross income (MAGI) methodology was established for states to determine Medicaid eligibility starting in 2014. This expansion has improved insurance coverage and access to care for YAs who were previously ineligible for Medicaid due to a lack of dependents or incomes exceeding traditional Medicaid eligibility thresholds.⁹

As a compromise made to pass the ACA, states were given the flexibility to opt out of Medicaid expansion and adopt other coverage pathways. These pathways and their adoption vary by state (Table 1). As of April 2024, 40 states and Washington, DC, have expanded Medicaid.¹⁰ In the 10 states that have not adopted Medicaid expansion (“nonexpansion” states hereafter), income eligibility thresholds for Medicaid are considerably lower than 138% of the FPL. As reflected in Case 1, the threshold in Georgia is 31% of the FPL (around $8000 annual income for a family of 3 in 2023; Figure 2).¹¹ Nonexpansion states, predominantly located in the south and southeast United States, have large populations of YAs and racial and ethnic minorities. The implications of nonexpansion on health disparities, particularly relevant to AYA blood cancers, are discussed below.

Table 1.

Major Medicaid and CHIP eligibility pathways and state implementation status in the post-ACA era that impact AYAs with blood cancers

Population	Program	Pathway	Number of states adopted	Specific eligibility criteria
YAs (aged 19-39 years)	Medicaid	MAGI in Medicaid expansion states	41a (as of Apr 2024)	Based on FPL: Medicaid expansion states cover nonelderly adults with income up to 138% FPL.b
		MAGI in nonexpansion states	10a (as of Apr 2024)	Eligibility is based on FPL and varies by state.b For example: • Georgia: up to 31% FPL for parents and 0% FPL for other adults • Texas: up to 16% FPL for parents and 0% FPL for other adults
		Non-MAGI: working people with disabilitiesc	48d (as of Jul 2022)	Cover working people with disabilities whose income and/or assets exceed the limits for other eligibility pathways, which is an optional pathway with eligibility limits varying by state. For example: • Connecticut: up to 552% FPL (or $6250 monthly income) and assets up to $10 000 for an individual
		Non-MAGI: seniors and people with disabilities up to 100% FPLc	28e (as of Jun 2024)	Cover seniors and people with disabilities, whose income exceeds the SSI limit but generally is up to 100% FPL, and states can choose to apply an asset limit. This pathway is optional to states, with eligibility limits varying by state. For example: • Georgia: up to 74% FPL and assets up to $2000 for an individual • South Carolina: up to 100% FPL and assets up to $8400 for an individual
AYAs (aged 15-39 years)	Medicaid	Non-MAGI: SSI enrolleesc	All states (mandatory pathway)	Cover people who receive federal SSI benefits. This is the only non-MAGI pathway that states must include in their Medicaid programs. Eligibility is based on income and asset limit and on an impaired ability to work at a substantial gainful level as a result of old age or disability. The maximum SSI federal benefit rate is 74% FPL, but the effective SSI income limit may be higher than 74% FPL in some states. The maximum asset limit is $2000 for an individual and $3000 for a couple.
		Non-MAGI: Section 1915 (I) HCBS for individuals at risk of institutional carec,f	5d,g (as of Jul 2022)	Cover people who are not eligible through another pathway and who meet the Section 1915 (I) financial and functional eligibility criteria and are at risk of institutional care. This pathway is optional to states, with eligibility limits varying by state. For example: • Indiana: adults with behavioral health needs and with income up to 150% FPL • Maryland: children with mental illness and with income up to 150% FPL
		Non-MAGI: “Medically needy” populationsc,h	34e (as of Jun 2024)	Cover pregnant women, children, parents, seniors, or individuals with disabilities who have limited income and vary by state. This includes persons who spend down by incurring medical expenses so that, after medical expenses, their income falls below a state-established medically needy income limit.
Adolescents (15-18 years)	Medicaid	Non-MAGI: “Katie Beckett” children, a Medicaid waiver program that covers children who have long-term disabilities or complex medical needs to receive Medicaid coverage at home, regardless of household incomec	43e (as of Jun 2024)	Cover children up to age 19 with significant disabilities living at home, regardless of household income. These children must meet the SSI medical disability criteria or otherwise qualify for an institutional level of care according to functional eligibility criteria set by the state. Katie Beckett income limits are generally 300% of SSI ($2523 per month in 2022), with a $2000 asset limit, considering only the child's own income and assets.
		Non-MAGI: Family Opportunity Act children with disabilitiesc	8d (as of Jul 2022)	Cover children (ages 0-18) with disabilities living at home. These children must meet SSI medical disability criteria, with family income up to 300% FPL. Assets are not considered for eligibility determination. Distinction from Katie Becket pathway: the FOA option considers household income (not just the child's own income) and only requires SSI medical disability criteria (not requiring an institutional level of care).
		Non-MAGI: foster care children or former foster care youthi	All states (mandatory pathway)	Foster care children: typically qualify for Medicaid regardless of income while they are in the foster system. Former foster care youth: individuals who age out of foster care are eligible for Medicaid until age 26, regardless of their income.
		MAGI: state- and age-specific income eligibility limits for Medicaid based on income	All states (mandatory pathway)	Income thresholds are based on FPL and vary by state.h For example: • Hawaii: Medicaid up to 191% FPL (ages 0-1), 139% FPL (ages 1-5), 133% FPL (ages 6-18) • Washington: Medicaid up to 215% FPL (ages 0-18) • Georgia: Medicaid up to 210% FPL (ages 0-1), 154% FPL (ages 1-5), 138% FPL (age 6-18)
	CHIP	MAGI: CHIP as an expansion of Medicaid	11j (as of Jun 2024)	Income thresholds are based on FPL and vary by state.h For example: • Hawaii: CHIP 191%-313% FPL (ages 0-1), 139%-313% FPL (ages 1-5), 133%-313% FPL (ages 6-18)
		MAGI: CHIP as a separate program from Medicaid	2j (as of Jun 2024)	Income thresholds are based on FPL and vary by state.h For example: • Washington: CHIP up to 317% FPL (ages 0-18)
		MAGI: a combination of both approaches	38j (as of Jun 2024)	Income thresholds are based on FPL and vary by state.h For example: • Georgia: CHIP up to 252% FPL (ages 0-18)

^a Data publicly available online from https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map/

^b Data publicly available online from KFF, https://www.kff.org/affordable-care-act/state-indicator/medicaid-income-eligibility-limits-for-adults-as-a-percent-of-the-federal-poverty-level.

^c Data publicly available online from KFF, https://www.kff.org/report-section/medicaid-financial-eligibility-in-pathways-based-on-old-age-or-disability-in-2022-findings-from-a-50-state-survey-appendix/.

^d Data publicly available online from KFF, https://www.kff.org/medicaid/issue-brief/medicaid-financial-eligibility-in-pathways-based-on-old-age-or-disability-in-2022-findings-from-a-50-state-survey/.

^e Data publicly available online from KFF, https://www.kff.org/other/state-indicator/state-adoption-of-major-optional-pathways-to-full-medicaid-eligibility-based-on-old-age-or-disability.

^f Section 1915(i) of the Social Security Act is a Medicaid provision that allows states to offer HCBS to individuals as an alternative to institutional care. Eligibility criteria for these services are usually based on functional need rather than requiring individuals to qualify for an institutional level of care, which broadens access to services for those with disabilities or chronic conditions. States have flexibility in setting eligibility criteria and determining the services offered, such as day care, personal care, and habilitation to support independent living in communities.

^g This number reflects states electing Section 1915 (i) as an independent eligibility pathway. Other states may use Section 1915 (i) to provide HCBS to people who are eligible for Medicaid through another pathway.

^h The “medically needy” or “spend-down” pathways allow individuals with income above the typical Medicaid limits to become eligible by incurring medical expenses that effectively reduce their income. Individuals must spend down their income by incurring medical costs equal to the difference between their income and the state's Medicaid income limit. Once they meet this spend-down amount, they qualify for full Medicaid benefits for the remainder of that period. Expenses that qualify for “spend-down” include medical bills for doctor visits, hospital costs, and prescription drugs. While not all states offer this program, it provides a crucial safety net for populations like AYAs with blood cancers facing high cancer treatment costs relative to their income.

ⁱ From https://crsreports.congress.gov/product/pdf/R/R43357.

^j From https://www.medicaid.gov/chip/state-program-information/index.html.

HCBS, home and community-based services; YA, young adults.

Figure 2.

State Medicaid expansion status and income eligibility thresholds for parents and other adults as of April 2024. In Medicaid expansion states (in red), the income eligibility thresholds for both parents and other adults are the same, mostly set at 138% of the FPL except for Washington, DC (at 215% of FPL). In the 9 nonexpansion states (in gray) except for Wisconsin, the income eligibility thresholds denoted in this map only apply to parents, and these states do not cover other adults (AL: 18% of FPL; FL: 28% of FPL; GA: 31% of FPL; KS: 38% of FPL; MS: 28% of FPL; SC: 67% of FPL; TN: 82% of FPL; TX: 16% of FPL; WY: 47% of FPL). In Wisconsin (in gray), another nonexpansion state, parents and other adults share the same income eligibility threshold, set at 100% of FPL.

Medicaid expansion has also increased insurance coverage among children and adolescents through “welcome mat” effects.⁸ This phenomenon results from public awareness through federal/state outreach campaigns, as expanded parental Medicaid coverage encourages simultaneous enrollment of children in Medicaid. It may also result from the streamlined Medicaid eligibility determination, enrollment, and recertification procedures that are particularly prevalent in Medicaid expansion states.

Special populations leveraging Medicaid non-MAGI eligibility pathways

While the MAGI method was broadly implemented across states to determine eligibility, states can also cover specific populations through non-MAGI pathways based on age and disability (Table 1). One mandatory non-MAGI pathway is to cover AYAs receiving Supplemental Security Income (SSI) benefits (Figure 3). States can also opt for other non-MAGI pathways to extend Medicaid eligibility to AYAs with disabilities or functional needs, including those associated with a blood cancer diagnosis (Figure 4).¹² Many non-MAGI pathways are implemented through Section 1115 Medicaid Demonstration Waivers or state Medicaid plan amendments, allowing states the flexibility to implement various features to help address AYAs' health-related social needs; these include covering transportation services and/or housing assistance.¹³

Figure 3.

Major Medicaid eligibility pathways in the post-ACA era. HCBS, Home- and Community-Based Services.

Figure 4.

Number of major non-MAGI pathways adopted by states in 2022. The non-MAGI pathways of interest for this figure refer to 2 mandatory pathways (ie, SSI enrollees and foster care children or former foster care youth) and 6 optional pathways (ie, working people with disabilities, seniors and people with disabilities up to 100% FPL, Section 1915 [I] HCBS, medically needy, Family Opportunity Act buy-in for children with significant disabilities, and Katie Beckett children with significant disabilities living at home). Data publicly available online from KFF, https://www.kff.org/medicaid/issue-brief/medicaid-financial-eligibility-in-pathways-based-on-old-age-or-disability-in-2022-findings-from-a-50-state-survey/.

One non-MAGI pathway particularly relevant for AYAs with blood cancers is the Katie Beckett option for children under the age of 19 with significant disabilities (Table 1). The Katie Beckett initiative, named after the daughter of Julie Beckett, who was a disability-rights advocate, led to formal criteria for a Medicaid waiver established by the Reagan administration.¹⁴ As of 2024, 43 states have adopted the Katie Beckett waiver.¹² While this waiver does not consider parental income toward eligibility, it requires the adolescent to continually meet the institutional level of care criteria to maintain coverage, as reflected in Case 2. Consequently, adolescents diagnosed with blood cancers may lose coverage after completing the first-line treatment, resulting in delayed or forgone follow-up care for disease monitoring, second-line treatments, and/or survivorship care.

Other Medicaid reform under the ACA

Several other ACA provisions also have the potential to enhance access to care for AYA blood cancers. First, the ACA mandates the Early and Periodic Screening, Diagnostic, and Treatment services for children aged 21 years and under,¹⁵ which facilitates early symptom evaluation, timely detection of blood cancers, and access to diagnostic services, treatment, and posttreatment follow-up care. Second, the ACA allowed states to strengthen transportation services under Medicaid expansion,¹⁵ helping eligible AYAs reach medical appointments and pharmacies. Third, the ACA streamlined eligibility, enrollment, and renewal processes for Medicaid.¹⁶ These include standardizing the MAGI method for eligibility determination, enabling applications online or by phone, and promoting automated renewals. These changes have reduced administrative barriers to acquiring and retaining Medicaid coverage. Finally, Medicaid expansion increased enrollment in managed care plans that emphasize care coordination services,¹⁷ which are particularly relevant to AYA survivors with complex medical needs.

CHIP reform under the ACA

CHIP was indirectly affected by the ACA Medicaid expansion. First, the standardized MAGI methodology implemented by the ACA has similarly been applied to CHIP income eligibility determination. In 2023, the CHIP income eligibility threshold ranged from 190% of the FPL in Idaho to 405% of the FPL in New York.⁶ Second, the ACA mandated that states transition children aged 6 to 18 years with family incomes between 100% and 133% of the FPL from a previously separate CHIP program into Medicaid.¹⁸ Consequently, many states streamlined enrollment by consolidating adolescents into a single Medicaid-CHIP combined program (Figure 5),¹⁶ potentially reducing administrative complexities and closing coverage gaps.¹⁹ Unlike CHIP, Medicaid typically requires low or no premiums/cost sharing. This transition can alleviate families' financial burden,²⁰ particularly for those managing medical expenses for treating blood cancers.

Figure 5.

CHIP operation types differ by state. Traditionally, states had the flexibility to administer CHIP, which has been operated as 1) a Medicaid-expansion CHIP, 2) a program entirely separate from Medicaid, and 3) a combination program in which states use the Medicaid-expansion CHIP to cover younger or lower-income children and the separate CHIP for other children. To date, 10 states and Washington, DC, have implemented CHIP as a Medicaid-expansion CHIP, 2 states operate a separate CHIP, and 38 states use a combination approach, which is reflected in this figure. Data publicly available online from https://www.medicaid.gov/chip/state-program-information/index.html.

Dependent coverage reform under the ACA

The ACA requires private insurance plans to extend coverage to children on their parents' plans until age 26. As reflected in Case 1, this provision enables many YAs with blood cancers, particularly those ineligible for Medicaid who would otherwise be unable to afford private insurance, to maintain coverage and access to needed care.

Implications of ACA reforms on outcome disparities in AYAs with blood cancers

Disparities in outcomes of AYA blood cancers are well documented. AYAs often present with more advanced disease and experience lower gains in blood cancer survival rates than younger children.²¹ Non-Hispanic Black or Hispanic patients, those from deprived neighborhoods, and rural residents experience higher mortality rates than their counterparts.^22,23 Notably, these groups disproportionately depend on Medicaid/CHIP for health care coverage due to limited income and resources.¹¹

Narrowing disparities through providing affordable care

Comprehensive coverage is essential for access to care, adherence to therapy, and continuity of care across the cancer control continuum, from diagnosis to active treatment and survivorship.²⁴ Medicaid/CHIP reforms under the ACA offer avenues to narrow disparities from inadequate access to blood cancer care. Furthermore, Medicaid expansion alleviates challenges when adolescents age out of Medicaid/CHIP by bridging income eligibility gaps between children and adult Medicaid programs. As demonstrated in Case 1, the 24-year-old with acute myeloid leukemia would be ineligible for Medicaid in Georgia but would qualify in an expansion state like California after turning 18.⁶

Indeed, evidence has highlighted Medicaid expansion's instrumental role in mitigating disparities in insurance coverage, cancer care access, and outcomes.²⁵ Among nonelderly adults with cancer, coverage gains associated with the expansion were notably higher in racial and ethnic minority groups, including Hispanic, non-Hispanic Black, and Asian/Pacific Islander patients.²⁶ Survival improvements resulting from the expansion were particularly prominent among non-Hispanic Black adults and rural residents.²⁷ For AYA oncology patients, Medicaid expansion significantly increased insurance coverage in both YAs and adolescents through the “welcome mat” effect, especially in high-poverty areas.²⁸ Furthermore, Medicaid expansion is associated with earlier stages at diagnosis,²⁹ guideline-based cancer treatment,³⁰ and improved survival rates among YAs with cancer.⁸ These improvements were more pronounced among YAs from rural areas or with racial and ethnic minority backgrounds, indicating its potential to reduce sociodemographic disparities in AYA blood cancer care.

Narrowing disparities through addressing health-related social needs

By providing affordable access to the full spectrum of blood cancer care, Medicaid expansion can reduce the financial burden on AYA patients and families. Research shows that cancer survivors experienced significant reductions in financial barriers to care following the expansion.³¹ Financial protection from medical costs may alleviate material hardship related to housing and nutrition support during cancer treatment, particularly for socioeconomically disadvantaged families.^32,33 Medicaid transportation services are also beneficial for rural AYA residents needing access to comprehensive cancer centers, which are predominantly located in urban areas. Care management services and additional benefits offered by Medicaid managed care plans can assist patients in navigating the health care system and coordinating multidisciplinary care.³³ These services are vital for AYAs surviving blood cancers, who often face complex needs, frequent clinic visits, long hospitalizations, and risks of chronic health conditions resulting from treatment toxicity.

Challenges remain post ACA for AYAs with blood cancers

Despite the improvements and documented benefits of the ACA Medicaid expansion, this high-risk, high-need young population continues to face challenges.

Coverage gaps/discontinuation

To date, 10 states have not adopted Medicaid expansion, resulting in eligibility gaps between children's and adult Medicaid programs. As adolescents transition to adult care, these gaps can cause YAs to lose coverage entirely. Additionally, the eligibility differences between expansion and nonexpansion states could pose challenges to YAs transitioning to other states and care as they move for education and work opportunities.

Complex enrollment and eligibility recertification processes, especially burdensome in nonexpansion states, can disrupt coverage and care continuity for AYAs. To maintain coverage, AYAs and/or their families have to navigate complicated renewal procedures through income- or disability-based eligibility pathways. As reflected in Case 2, losing Medicaid coverage after first-line cancer treatment poses significant challenges for AYAs with blood cancers who require lifelong uninterrupted coverage for coordinated care, including novel cellular therapies, fertility preservation, supportive and palliative care, psychological support, and survivorship care.

The recent unwinding of the Medicaid Continuous Enrollment Provision threatens coverage continuity for many AYAs with blood cancers.³⁴ Under the Families First Coronavirus Response Act enacted in March 2020, this provision provided states enhanced federal funding to maintain beneficiaries' Medicaid enrollment. As this provision ended in April 2023, states resumed Medicaid eligibility redeterminations; consequently, over 23 million Medicaid enrollees, including numerous AYAs, have been disenrolled, and 69% were terminated for procedural reasons by June 2024.³⁵ Disenrollment rates varied across states, ranging from 13% in North Carolina to 56% in Utah.³⁵ Importantly, this change has created administrative burdens for AYAs and/or their families, like the survivor in Case 2, increasing the likelihood of coverage loss due to challenges in providing timely documentation for eligibility recertifications. Such “insurance churn” leads to inferior cancer outcomes via disruptions in patient-provider relationships, access to general medical care and cancer treatments, and/or guideline-concordant surveillance of treatment-related late effects during survivorship.³⁶ Indeed, our prior study has demonstrated a strong link between insurance churn and poorer survival among AYAs with leukemia or lymphoma (Figure 6).³⁷

Figure 6.

Patterns of insurance coverage continuity and survival rate among AYAs newly diagnosed with leukemia and lymphoma— key findings from the study team's prior work. Continuous health insurance a year before diagnosis improves the chances of survival. The year before diagnosis is a critical time during which early detection, prompt diagnosis, and timely treatment can help ensure optimal outcomes for patients with blood cancers. Gaining Medicaid coverage only at the point of a blood cancer diagnosis, or otherwise having noncontinuous Medicaid coverage, can compromise patients' overall survival. However, among Medicaid-insured children and AYAs diagnosed with leukemia and lymphoma, only 2 in 5 had continuous coverage in the year before diagnosis. Please see more details at Ji et al.³⁷

Barriers to accessing Medicaid services

AYAs with blood cancers require highly specialized treatments, including radiation, cellular therapies, targeted therapies, immunotherapy, stem cell transplantation, and psychosocial support. However, access to specialized treatment and psychosocial care is frequently limited within the Medicaid system. As Medicaid is increasingly administered through managed care organizations, which often restrict provider networks, this trend can increase wait times for appointments, dependence on emergency care, and travel distances to care, particularly for rural patients.³⁸ Additionally, Medicaid, including managed care plans operated by private insurance companies, often reimburses health care providers at lower rates compared to Medicare and private insurance. This may result in health care systems limiting the acceptance of Medicaid patients or opting out of the Medicaid network entirely. These system-level barriers can restrict access to specialty care for AYAs, potentially leading to suboptimal treatment options and lower care quality. Even with Medicaid coverage, AYAs may still face logistical, language, and health literacy barriers that hinder their ability to come to clinical visits, pick up medications, and adhere to treatment regimens.

Recommendations for future research, interventions, and policy reform

To date, research on Medicaid expansion's influences on care and outcomes for AYAs with blood cancers remains limited. Empirical research is needed on how other Medicaid/CHIP reforms under ACA and state Medicaid waivers, such as the Kattie Becket waiver, influence outcomes and disparities among AYA survivors of blood cancers. This research is essential to inform interventions and policy recommendations that address the unique health and psychosocial needs of this population.

For example, future interventions may include community-level outreach and assistance programs designed to help AYAs and/or their families navigate the Medicaid system to obtain and retain coverage more easily. To expand the capacity of such assistance programs, increasing the social worker workforce in AYA-serving institutions is particularly important. Additionally, investments in educational resources to promote providers' and patients' understanding of the Medicaid/CHIP programs are critical to ensure timely care delivery and adherence to effective treatments and survivorship care.³⁹ Institutions can consider adding a resource guide of available public health insurance programs in an AYA's residential and neighboring states and offering financial counseling services from the point of diagnosis. This approach can better prepare families to plan their current and future insurance needs. The recent introduction of patient navigation codes warrants further research and follow-up, as this may provide oncology care teams with dedicated resources and financial incentives to help patients navigate and enroll in affordable insurance plans.⁴⁰

Policy reforms addressing coverage continuity for AYAs are needed at the state and community levels. These include simplifying Medicaid/CHIP eligibility redetermination processes and reducing the administrative burden of gaining coverage through non-MAGI pathways. States may consider improving reimbursement structures to incentivize and sustain health care providers' participation in their Medicaid program. An appropriately designed reimbursement system would also improve the Medicaid provider network, ensuring timely and adequate access to specialist services for blood cancers.

Conclusion

Medicaid/CHIP provides crucial benefits but is burdened by complexity. Health care systems need to expand the appropriate workforce and engage existing advocacy and community resources to assist AYAs in navigating these complexities to ensure adherence to curative therapies and improve disease-free and overall survival. A decade after the ACA's successful implementation, reforms are still needed to streamline eligibility and enrollment processes and to ensure benefit alignment and affordable, seamless insurance across the AYA blood cancer continuum.

Conflict-of-interest disclosure

Xin Hu: no competing financial interests to declare.

Sharon M. Castellino: serves on the advisory board of SeaGen Inc. and Bristol Myers Squibb.

Xu Ji: no competing financial interests to declare.

Off-label drug use

Xin Hu: There is nothing to disclose.

Sharon M. Castellino: There is nothing to disclose.

Xu Ji: There is nothing to disclose.