The upcoming November election will have a significant impact on health care nationwide. Policy proposals championed by candidates at the federal and state levels could radically change health law and policy in ways that will reverberate in 2025 and beyond. In this new blog series, the experts at NHeLP will analyze and discuss how various policies would positively or negatively impact access to care for millions of low-income people, people with disabilities, Black, Indigenous, and people of color, LGBTQI+ folks, pregnant people, and those who live at the intersection of those identities. Follow along with NHeLP through Election Day as we explore opportunities and threats to health care in the United States.
For fifty-five years, the National Health Law Program (NHeLP) has been an instrumental national player in effectively implementing and enforcing the Medicaid Act and civil rights laws, as well as shaping groundbreaking federal health care reforms, from the Affordable Care Act’s (ACA) Medicaid expansion and nondiscrimination protections to the Emergency Medical Treatment and Labor Act (EMTALA). Over the last four years, the Administration and 118th Congress have taken critical steps to improve access to health care for millions of people in the U.S., driving our national uninsured rate to a historical low. While we cannot predict what will happen in the November elections, there is no question that the next Administration and Congress will have numerous critical and potentially fleeting opportunities to build on this momentum toward health care justice — and that NHeLP is prepared to seize these opportunities and fight. In this blog post, I present ten key federal legal and policy opportunities to advance health care justice.
I. Administrative Opportunities
Building upon progress from the last four years, the next Administration should prioritize the following administrative opportunities.
1). Enforcing federal Medicaid and CHIP requirements
This spring, the U.S. Centers for Medicare & Medicaid Services (CMS) managed to finalize three final rules designed to improve the quality, transparency, and oversight of Medicaid managed care and fee-for-service programs, as well as a final rule to simplify the Medicaid, Children’s Health Insurance Program (CHIP), and Basic Health Program (BHP) application and renewal processes. As part of its public education efforts, CMS also developed crucial Know Your Rights resources for the public on EMTALA among other federal protections. The next Administration must build on these wins by implementing, enforcing, and continuing to educate the public on federal protections for Medicaid and CHIP beneficiaries writ large, such as enrollment and eligibility, access to services, and consumer protections.
2). Implementing and enforcing the 2024 Ensuring Access to Medicaid Services (Access) final rule
This Spring CMS finalized the Medicaid Access final rule. Among other critical reforms, the rule could strengthen access to critical home and community-based services (HCBS). Medicaid HCBS enables beneficiaries with disabilities and complex health needs to live in their homes and communities. We are facing a national shortage of direct care workers, such as personal care and home health aide providers. One way the Medicaid Access rule addresses this crisis is by creating a mechanism to address historically inadequate rates and requiring that a fair (80%) share of the rate paid for certain types of HCBS goes right to wages for direct care workers, a workforce that is largely composed of immigrants and people of color.
In addition to its HCBS reforms, the Medicaid Access final rule expands the scope of states’ Medicaid Advisory Committees (MAC) (previously called Medical Care Advisory Committees); requires states to establish Beneficiary Advisory Councils (BAC) comprised of beneficiaries, their families, and/or caregivers; and requires that states draw 25% of MAC members from their BAC. It also requires that states demonstrate access sufficiency when submitting a state plan amendment (SPA) with a fee-for-service rate reduction, or restructuring in circumstances that could result in diminished access, for all services. The next Administration should ensure robust implementation of these long-overdue reforms.
3). Enforcing children’s health rights in Medicaid
Millions of children and youth in the U.S. are eligible for Medicaid’s robust Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit. Due to structural barriers to health care, nutritious and culturally congruent food, comprehensive sexuality education, healthy and stable housing, and other social determinants of health, young people from low-income families are more likely to experience poor health outcomes. EPSDT is designed to provide access to early detection and treatment of health conditions, helping to mitigate the effects of these barriers. However, states have long failed to meet their obligations under Medicaid’s EPSDT requirements. CMS should continue to prioritize enforcement of EPSDT, including through robust oversight of state programs.
4). Enforcing Medicaid’s abortion, gender-affirming care, and family planning coverage requirements
Over the last several years, state and federal attacks on access to abortion, gender-affirming care, and contraception — all safe, effective, and essential services — have escalated. This shift has exacerbated longstanding state violations of federal Medicaid requirements regarding sexual, reproductive, and gender-affirming care. For example, some states violate federal requirements and fail to cover abortions within the Hyde Amendment’s exceptions and gender-affirming care. Some violate the federal right of a Medicaid enrollee to access family planning services and supplies from the provider of their choice. The next Administration should prioritize robust enforcement of and public education regarding these neglected federal Medicaid protections.
5). Robustly implementing and enforcing federal nondiscrimination laws
This Spring, the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) finalized a new rule that clarifies protections under § 1557 of the Affordable Care Act (ACA), which prohibits health care discrimination on the basis of race, color, national origin, sex, disability, age, or any combination thereof. NHeLP helped craft § 1557 as part of our work on the Affordable Care Act (ACA) and has continued to advocate for its robust implementation and enforcement. The new final rule clarified nondiscrimination rights regarding language access and protections for people of color; sex, including sex stereotypes, gender identity, sexual orientation, sex characteristics (including intersex traits), and pregnancy or related conditions; and access and services for disabled people. Soon after, OCR finalized the first new final rule updating regulations on § 504 of the Rehabilitation Act, which prohibits disability discrimination by recipients of HHS funding, since 1977. The updates were robust, vital, and long-overdue. Over the last four years, OCR has prioritized civil rights enforcement and reached key settlement agreements to address disability, sex, and racial discrimination by covered entities.
The next Administration should build on this progress by prioritizing implementation (including guidance and public education and outreach) and enforcement of its 2024 nondiscrimination rules. For example, OCR should issue guidance to insurers and providers on prohibited disability discrimination in medical treatment within a sexual and reproductive health care context, building upon the examples the agency provided in the preamble to the final rule on § 504.
II. Congressional Opportunities
Achieving health care justice in the U.S. will require key federal health law reforms, such as closing long standing coverage gaps, expanding access to essential services, and adequately funding programs. In the years ahead, NHeLP will continue to push for the following critical policy changes, among other needed reforms.
6). Equitably close Medicaid expansion coverage gap
Over the last four years, the Administration and Congress have taken critical incremental steps to narrow gaps in Medicaid coverage. For example, they established and implemented a new SPA option to extend pregnancy Medicaid eligibility to a full twelve months, which 46 states and D.C. implemented as of August 1, 2024. However, policymakers in 10 states still refuse to implement Medicaid expansion — a discriminatory political choice rooted in structural racism. The result is the Medicaid expansion coverage gap: the estimated 1.5 million adults with incomes too high to qualify for traditional Medicaid eligibility but below poverty level, making them ineligible for subsidies in the Marketplaces. If all states implemented expansion, approximately 2.9 million uninsured adults would become newly eligible for Medicaid. This would include both the coverage gap and an additional 1.4 million uninsured adults with low incomes between 100% and 138% FPL.
If these states will not expand Medicaid, Congress must act to secure equitable health insurance coverage for the people in this coverage gap. Any federal coverage gap solution must guarantee access to Medicaid’s robust protections as the ACA intended. Otherwise, it could enshrine in federal law a separate and unequal system of health coverage for millions of Black, Latine, and other people of color in the South, furthering structural racism in U.S. health policy. In our 2021 framework “Closing the Medicaid Coverage Gap: Principles for Preventing a Separate and Unequal Result,” NHeLP offers federal policymakers and advocates key considerations to ensure that any federal coverage program for people in this gap incorporates Medicaid’s vital protections and safeguards the Medicaid entitlement nationwide.
7). Make Medicaid HCBS mandatory
Medicaid is one of the only forms of health coverage that regularly covers HCBS, such as personal care, supported employment, and peer support services. Unfortunately, access varies by geography. HCBS remains an optional benefit. States that do opt to cover HCBS sometimes limit the services that they cover, or “cap” the number of enrollees or the costs associated with these services, resulting in year- or even decade-long waiting lists to access care. Some people die waiting for access. Because of these and other barriers, it’s often easier for disabled people and people with complex health needs to enter institutional care than stay in their communities.
The HCBS Access Act addresses these injustices through critical reforms. The Act would replace our current scheme of waivers and other optional HCBS services with new mandatory services, such as homemaking assistance and caregiver support. By making HCBS mandatory, the Act would end waitlists and save lives.
8). Adequately fund the HHS Office for Civil Rights
HHS OCR regulates and enforces 55 civil rights, privacy, and other federal laws, such as § 1557, § 504, and the Health Insurance Portability and Accountability Act. OCR has a critical responsibility to engage in outreach, education, implementation, and enforcement about these laws and their application in health care settings. These significant responsibilities are made even more urgent amid escalating discriminatory barriers to sexual, reproductive, and gender-affirming care — yet Congress has woefully underfunded OCR for far too long.
NHeLP has long co-chaired the Leadership Conference for Civil Rights’ Health Care Task Force, which leads the national conversation on the need for substantially higher funding levels to ensure adequate and timely completion of these responsibilities. We urge the next Congress to at least double OCR’s current appropriations to ensure that HHS can fulfill its vital charge to safeguard civil rights and privacy rights in health care.
9). Meaningfully address racial and ethnic inequities in our health care system
Today, Black, Indigenous, Latine, Asian American, Pacific Islander, and other People of Color face higher structural barriers to health insurance coverage, culturally and linguistically congruent care, and health-related social needs. The Health Equity and Accountability Act (HEAA) represents a crucial opportunity to comprehensively fight the vast racial health inequities that mark the U.S., as well as their intersections with xenophobia, sexism, ableism, ageism, and classism. HEAA builds upon the ACA’s achievements through groundbreaking reforms such as closing Medicaid’s immigrant and post-pregnancy coverage gaps; establishing Medicaid doula payment models among other payment and service delivery innovations that center racial health equity; and strengthening data collection and access to culturally and linguistically appropriate health care. For example, HEAA includes the text of the Health Equity and Access Under Law for Immigrant Families Act, which addresses the xenophobic exclusion of many immigrants from Medicaid, CHIP, Marketplace, and Medicare coverage.
Since the Congressional Tri-Caucus first introduced HEAA in 2003, over 300 organizations have contributed to its development as part of the Community Working Group. NHeLP is proud to serve on the Community Working Group and chair the Title V committee, which centers on promoting racial health equity in the contexts of sexual and reproductive health and children’s health. We urge Congress to pass HEAA.
10). Create a federal right to Medicaid abortion coverage without restrictions
For forty-five years, the Hyde Amendment has withheld federal funds from states to cover abortion services in nearly all circumstances. It has erected unconscionable barriers to access for low-income and underserved people who receive health coverage or care through Medicaid and other HHS-funded programs. It has pushed abortion access out of reach for millions, disproportionately harming people of color, people with disabilities, LGBTQI+ people, young people, and their families. The Supreme Court’s decision to end the constitutional right to abortion has exacerbated these barriers for Medicaid beneficiaries.
NHeLP believes that the U.S. has an obligation to ensure equitable abortion coverage for all, no matter a person’s health insurance program or plan; location; race or ethnicity; sexual orientation; gender identity; age; language; or disability, immigration, or economic status. To that end, we call on Congress to pass the Equal Access to Abortion Coverage in Health Insurance (EACH) Act. The EACH Act would end the Hyde Amendment and restore or newly mandate abortion coverage in Medicaid, CHIP, and other health programs and plans.
Conclusion
No matter what happens in November, NHeLP’s deep bench of leading health care attorneys, policy architects, and communications strategists are prepared to continue to fight for social justice in our health care system. We will draw on our deep well of advocacy strategies, strengths, and relationships with federal, state, and local partners to foster a future where everyone in the U.S. can access the affordable, high-quality, and nondiscriminatory care they need to thrive.
