The Ground Has Shifted Under PEPFAR: What Does That Mean for Its Future?

Authors: Jennifer Kates, Brian Honermann, and Gregorio Millett
Published: Nov 22, 2024

In this viewpoint article in the Journal of the International AIDS Society written ahead of World AIDS Day (December 1), KFF’s Jennifer Kates and co-authors Brian Honermann and Gregorio Millett of amfAR explore the implications of shifts in the global economic and political environment for the future of PEPFAR, the U.S government’s global HIV program created under President George W. Bush and credited with changing the trajectory of the global HIV/AIDS pandemic.

State Reported Efforts to Address Health Disparities: A 50 State Review

Published: Nov 22, 2024

Summary

In recent years, there has been a growing focus on addressing health disparities and advancing health equity. This growth was spurred by incidents in 2020, including the COVID-19 pandemic, which highlighted the disproportionate impact of the virus on low-income people and people of color in the U.S. in addition to the police killings of George Floyd, Breonna Taylor, and others that increased attention to systemic racism that contributes to inequities such as health disparities. While the federal government can play a key role in addressing inequities, states also play a pivotal role, as they set policies, allocate resources, and administer many services and programs that are important for addressing the conditions that determine health both within and beyond the health care system. Moreover, states have varying demographics, population needs, and political leadership, which may shape efforts to address health disparities and promote health equity. Efforts at the federal level are expected to shift under the Trump Administration, given that, during his first term, he took executive action to prohibit federal agencies and contractors from providing training addressing racism and sexism and has proposed policies that may widen disparities in coverage and access to care. As such, understanding state actions in this area may be of increasing importance.

This analysis focuses on current state efforts, many of which were implemented during or after 2020, to address health disparities and advance health equity based on a review of publicly available materials from all 50 states and DC. In addition, case study interviews were conducted with 14 stakeholders in three states (California, North Dakota, and Michigan) to increase understanding of the factors contributing to success of these state initiatives, lessons learned, and potential implications for other states. The case study initiatives reflect some of the broad themes of state-level activities identified through the analysis of publicly available materials and include states with varied geography, racial and ethnic demographics, and political leadership (See Methods for more details.) Key takeaways from the review include the following:

  • Nearly all states identify health equity and/or addressing health disparities as a strategic priority, and most have established infrastructure to lead this work. States vary in the level of governance they have established, how the positions or offices were created, and their scope and areas of responsibility. A few states do not have governance dedicated to addressing health disparities or health equity, although most of these states still have efforts focused on addressing health disparities. In contrast, a small number of states have passed legislation or instituted policies that prohibit activities related to diversity, equity, and inclusion (DEI) and/or that refer to structural racism. In addition to establishing infrastructure, some states describe shifts in their internal operations to address disparities and/or advance equity, including developing cross-agency collaboratives to embed equity into institutional practices and codifying these operational procedures into policy; mandating equity training for state staff; and stipulating equity-related requirements for budget, funding, and contracting decisions.
  • Nearly all states include community engagement as part of their approach to addressing health disparities and/or equity. However, states vary in how they define community and the extent to which they share decision-making and resources with communities. Approaches range in the degree of engagement, as well as in the extent of power and resource sharing with communities, from soliciting input and feedback from communities; to having community representation on advisory councils, task forces, or similar groups to inform state planning and decision-making; to providing resources to support increased capacity of communities; to facilitating and funding community-defined and led strategies. States often are implementing multiple types of community engagement approaches, which may address different health or population needs and/or facilitate greater reach and impact.
  • Many states describe cross-sector initiatives to address health disparities, recognizing the role social and economic factors play in determining health. States are incorporating a health equity focus across sectors in various ways. For example, several states have adopted place-based initiatives to address social determinants of health (SDOH) in specific geographic areas. Some states indicate that they employ a Health in All Policies (HiAP) approach and/or use Health Impact Assessments (HIAs) to incorporate health equity considerations into decision making across sectors beyond health. Many states also report using Medicaid managed care contracts to promote strategies to address SDOH.
  • States also point to training and diversifying the health care workforce as part of efforts to address disparities and advance equity. These efforts include optional or mandated equity-related training for health care workers; efforts to increase diversity in the pipeline of health care workers; and recruitment, training, and support for community-based providers, including doulas and community health workers. Expanding access to and creating infrastructure to support doulas and community health workers are common areas of focus as part of state efforts to address disparities in maternal and infant health. A growing number of states are providing Medicaid reimbursement for doula services and/or providing funding and infrastructure to support doula training and credentialing and community health workers.
  • States are implementing data collection, analysis, and reporting strategies aimed at addressing health disparities and/or equity. Most states are publicly reporting data to support efforts to address disparities, but there is wide variation in the timeliness, format, and scope of these data. A number of states have also developed or indicated that they are in the process of developing indices or datasets related to measuring equity and/or social vulnerability. Beyond increasing access to data through public reporting, some states also report changing data collection practices to support greater disaggregation of data and increased data sharing, including with communities.

This analysis shows that states with varying geography, demographics, and political leadership are pursuing work to address health disparities. However, states range in the level of commitment and resources focused on this work. While some states are taking more incremental steps, others have identified this work as a major cross-sector strategic priority, established dedicated infrastructure and resources to support this work, taken steps to empower and support impacted communities, and are working toward broader systems and policy changes to mitigate disparities.

As a result of these efforts, states have directed increased staff and resources to this work, established infrastructure and/or policies that facilitate community input to inform state decision-making and program implementation, increased funding to community-based organizations, and enhanced data available to identify and direct efforts to address disparities. In particular, the establishment of new infrastructure and policies to address disparities and advance equity may facilitate sustainability of this work amidst potential turnover in staff and leadership. Case study respondents highlighted factors that contributed to the success of initiatives and potential lessons for other states, including the presence of strong state leaders and champions, developing trusted and authentic relationships between the state and community, state leadership being open to innovative community-led approaches, and using evaluation data to support sustainability of initiatives over time.

This information may help inform state efforts to address health disparities and advance health equity by identifying potential strategies and approaches states may consider and factors that contribute to success. It is subject to limitations. While we sought to be comprehensive in our review, states may have activities underway that are not reflected in public-facing materials. It is also possible that new activities have begun, concluded, or been retracted after our data collection period. Moreover, while this analysis provides greater insight into the range of state-reported activities to address health disparities and/or equity, it does not give insight into the effectiveness or outcomes associated with these actions. Future work examining the impacts of these efforts on state operations and disparities in health care and health outcomes will be important to help guide ongoing efforts to address health disparities and advance greater health equity.(Back to top)

Publicly Reported State Activities

State Infrastructure and Governance

Nearly all states have an office or division focused on health equity or disparities (Table 1). States vary in the level of governance they have established, how positions or offices were created, and in their scope. However, these offices are generally located within the states’ Departments of Health or Health and Human Services. While some are longstanding offices focused on minority health or disparities, others were more recently established or refocused in the wake of the disparate health impacts of the COVID-19 pandemic. As such, in a number of states the levels of staff and resources focused on addressing disparities and advancing equity have increased in recent years. The few states without an office or division dedicated to health disparities or health equity generally still have resources and initiatives aimed at addressing disparities or advancing equity. For example, although Vermont does not have a dedicated health equity office, health equity is a primary strategic goal, and it has an Office of Health Equity under development.

Some states also have equity branches or divisions within agencies or divisions of their Departments of Health or Health and Human Services, such as their Medicaid agencies and/or Behavioral Health agencies. Additionally, a number of states have health equity task forces, councils, or commissions, which vary in composition and roles. Some include membership from community members and experts outside the state to provide feedback and information to guide state efforts. Others bring together state employees across sectors to collaborate on equity efforts across the state and/or to coordinate regional or local activities. Some include a combination of external experts, community representatives, and state employees.

In contrast, a small number of states have passed legislation or instituted policies that prohibit activities related to diversity, equity, and inclusion (DEI), and/or refer to structural racism. In these states, health equity and disparities related activities and content do not exist in their public materials, are being scaled back, or have been eliminated. For example Texas‘ previous Center for Minority Health Statistics and Engagement was defunded in 2017, and a legislative proposal to establish a new Office of Health Equity failed due to Republican opposition. In 2022, Florida’s state health goals removed equity as a state priority. The new state health improvement plan did not reference equity and made no mention of race or ethnicity. In July 2024, the Utah legislature passed a bill prohibiting DEI training, hiring, and inclusion programs in higher education and government employment. In Arizona, SB1005 prohibits public institutions from spending funds on DEI programming and removes requirements for employees to engage in DEI programming or training.

Less than a third of states have an overarching equity office or position (not specific to health) that was identifiable through public-facing materials. Many of these were established in 2019 or later. In California, Governor Newsom established a Chief Equity Officer through an Executive Order, who is housed within the Government Operations Agency. Similarly, in Illinois, an Office of Equity within the Office of the Governor was established via Executive Order, and New Jersey has an Office of Diversity, Equity, Inclusion, and Belonging (Office of Equity) that was created by Executive Order. Vermont’s Office of Racial Equity was formed in 2019 through legislation and has since grown in scope. Washington State’s Office of Equity was established by legislation in 2020 in response to the growing diversity of the population, disparities in opportunities across groups, and the economic and social costs of inequities.

The scope of these offices varies across states. For example, in DC, the Office of Racial Equity, which was established in 2021, focuses on developing an infrastructure to ensure policy decisions and programs are evaluated through a racial equity lens and to implement the Racial Equity Achieves Results (REACH) Act. In New Jersey, the Office of Equity is charged with increasing the presence and participation of historically underrepresented groups in state government; developing equity frameworks to guide state policy decisions; directing diversity, equity, inclusion, and belonging efforts in the Governor’s Office; guiding and coordinating state agency initiatives to strengthen diversity, equity, inclusion, and belonging within the state workforce; and monitoring implementation of these measures. Other offices, such as the Office of Diversity, Opportunity, and Inclusion in Virginia and Division of Equity, Diversity, and Inclusion in Rhode Island, are primarily focused on promoting diversity and inclusion among the state workforces.

Table 1: State Infrastructure to Address Equity
 Office of Health Disparities and/or Health Equity and/or Minority HealthOffice of Equity and/or Equity Officer Position
Total  
AlabamaOffice of Health Equity and Minority Health 
AlaskaHealthy and Equitable Communities 
ArizonaOffice of Heath Equity 
ArkansasOffice of Minority Health and Health Disparities 
CaliforniaOffice of Health EquityChief Equity Officer
ColoradoOffice of Health EquityStatewide Equity Office
ConnecticutOffice of Health Equity 
DelawareBureau of Health Equity 
DCOffice of Health EquityOffice of Racial Equity
FloridaOffice of Minority Health 
Georgia
HawaiiOffice of Health Equity (Under Development) 
Idaho
IllinoisCenter for Minority Health ServicesOffice of Equity
IndianaOffice of Minority HealthOffice of the Chief Equity, Inclusion, and Opportunity Officer
Iowa
Kansas
KentuckyOffice of Health Equity 
LouisianaCommunity Partnerships and Health Equity 
MaineOffice of Population Health Equity 
MarylandOffice of Minority Health and Health Disparities 
MassachusettsOffice of Health Equity 
MichiganOffice of Equity and Minority HealthDiversity, Equity, and Inclusion
MinnesotaCenter for Health EquityOffice of Equity, Opportunity, and Accessibility
MississippiHealth Equity Office 
MissouriOffice of Minority Health 
Montana
NebraskaOffice of Health Disparities 
NevadaOffice of Minority Health and Equity 
New HampshireOffice of Health Equity 
New JerseyMinority and Multicultural HealthOffice of Equity
New MexicoOffice of Health Equity 
New YorkOffice of Health Equity and Human Rights 
North CarolinaOffice of Health Equity 
North DakotaCommunity Engagement Unit 
OhioOffice of Health OpportunityOffice of Opportunity and Accessibility
OklahomaOffice of Minority Health and Health Equity 
OregonEquity and Inclusion Division 
PennsylvaniaOffice of Health EquityDiversity, Equity, and Inclusion
Rhode IslandDivision of Community Health and EquityDivision of Equity, Diversity, and Inclusion
South Carolina
South Dakota
TennesseeDivision of Health Disparities Elimination and Office of Minority Health and Disparities Elimination 
Texas
UtahOffice of Health Equity 
VermontOffice of Racial Equity
VirginiaOffice of Health EquityOffice of Diversity, Opportunity, and Inclusion
WashingtonOffice of Public Affairs and EquityOffice of Equity
West VirginiaDivision of Health Promotion and Chronic Disease
WisconsinOffice of Health Equity 
WyomingOffice of Training, Performance, and Equity 
Source: KFF analysis of state public websites between September 13, 2023 and March 5, 2024.

A number of states, particularly those that are home to larger populations of American Indian or Alaska Native (AIAN) people, have established positions, offices, or other organizational infrastructure focused on communicating and consulting with Tribes and/or addressing AIAN health. Some of these states have Tribal liaisons who serve as a link to exchange information between the state and Tribal nations and facilitate Tribal consultation processes. For example, in Arizona, the Department of Health Services Tribal Liaison serves as an “advocate, resource, and communication link between the Department and Arizona’s Native American health care community.” North Dakota has four Tribal health liaisons who facilitate community engagement with five Tribes throughout the state (Box 1.) The liaisons also serve as an internal resource to the state’s Indian Affairs Commission. Other states have established leadership positions or offices focused on AIAN health. For example, Montana has an American Indian Health Director who directs the Office of American Indian Health, which serves as a communication link between the state and American Indian communities. A few states have councils or commissions that serve similar roles. In Oklahoma, the Tribal Behavioral Health Coalition specifically focuses on providing guidance on mental health and substance abuse issues for Tribal nations co-located in the state. Beyond this infrastructure, some states have clearly outlined policies and processes for Tribal consultation. For example, in 2020, Michigan established a formal Tribal Consultation policy that was developed with feedback from Tribal representatives.

Box 1: State Engagement with Tribes in North Dakota

In North Dakota, the Community Engagement Unit has four Tribal liaisons that work with the five Tribes placed in the state, who help build relationships and support bidirectional information sharing. The liaisons, along with leadership from the Community Engagement Unit and the state health officer, participate in quarterly meetings with the Tribal Health Directors, which have been consolidated with North Dakota Medicaid Tribal consultation meetings.

Case study respondents noted that this meeting process was established to improve working relationships between the state and Tribes, which previously had been challenged by a lack of trusted relationships and low meeting attendance. Respondents also noted that Tribal nations have had a government-to-government relationship with the federal government rather than the state, but over time the federal government has ceded more responsibilities to the states. This has necessitated relationship building between the state and Tribes, which is being facilitated by the Tribal Health Directors meetings.

Respondents highlighted several successes of this meeting and consultation approach. They noted that the individuals convening the meetings are primarily members of Tribal Nations placed in North Dakota, and that it has been valuable having the meeting invitation come from trusted enrolled members. They also highlighted the value of state leaders and staff coming to the community for meetings over the previous expectation of Tribal representation traveling to the state capital. They indicated that having state leaders and staff see the community and meet people in the community is important for informing culturally appropriate and responsive decision making and building trust.

Respondents said the meeting format has contributed to an improved working relationship, suggesting that it has allowed for more problem solving and supports honest and sometimes difficult dialogue that is necessary to work through. For example, they noted that it has facilitated the development of data sharing agreements between the state and Tribes and addressing Medicaid eligibility and reimbursement concerns.

Many states have also established ancillary governance structures such as commissions, task forces, councils, and workgroups to support state efforts to address health disparities and/or equity. While some of these structures include state staff persons, they often facilitate engagement of non-governmental leaders, such as subject matter experts, advocates, health care practitioners, and community-based organizations, in the development and implementation of the state’s strategy. These structures can help inform an agency’s decision-making process and/or be responsive to specific information or advisory needs. In April 2020, for example, the Tennessee Department of Health’s Division of Health Disparities Elimination launched the Tennessee Health Disparities Advisory Group to address the disproportionate number of individuals in communities of color affected by COVID-19 by examining data, monitoring trends, and generating responsive solutions during the pandemic. In Minnesota, the Department of Health formed the Health Equity Advisory and Leadership Council to serve as a voice for communities impacted by health inequities throughout the state and provide guidance on policies, programs, performance metrics geared toward the promotion of \health equity. Similarly, the Oregon Health Policy Board established a Health Equity Committee to coordinate, develop, and recommend policy designed to eliminate health inequities.(Back to top)

Strategic Priorities

Nearly all states have identified addressing health disparities and/or advancing health equity as a strategic priority, with most framing their goals around improving health for all residents. These include aims of advancing health equity, promoting optimal health for all residents, enabling all residents to achieve their full health potential, providing equitable opportunities for people to be healthy and have access to health services, and reducing or eliminating health disparities. While these goals typically encompass all residents, some states identify specific types of disparities or population groups that are of particular focus, including those that face inequities by demographic factors such as race and ethnicity, age, socioeconomic status, sexual orientation, gender, ability, immigration status, religion, and/or geographic location. State strategic goals commonly reference the role of SDOH and importance of engaging with the community as part of their efforts. A smaller number of states explicitly identify addressing racism and recognizing historical discrimination, disparities in behavioral and mental health, or environmental justice as components of this work. Some states also identify addressing internal capacity and workforce diversity as key components of these efforts.

Most states have a definition of health equity in their publicly posted materials, and about half have a publicly posted definition of health disparities. How states define health equity and health disparities may shape the directions and focus of their work in this area, as they vary in recognition of factors that drive disparities and potential mechanisms to advance equity. State definitions of health equity most commonly refer to or draw on definitions from the CDC, including the Healthy People 2030 definition, which recognize that achieving health equity requires addressing social and economic factors that contribute to disparities and historical and contemporary injustices. Some also reference or draw on definitions from the World Health Organization or the Robert Wood Johnson Foundation. Oregon’s definition of health equity is unique in that it identifies “equitable distribution or redistribution of resources and power” as a component for achieving health equity. State definitions of health disparities generally refer to or draw on definitions from Healthy People, the CDC, and the National Institutes of Health. These definitions all recognize that disparities impact groups of people who are socially disadvantaged or experience more obstacles to health. The Healthy People definition identifies health disparities as linked to social, economic, and environmental disparities, although states vary in the extent to which their definitions identify root causes of disparities and the role of social and economic factors. Minnesota’s definition specifies that disparities are not explained by genetic or biological factors and highlights that they are life-threatening and urgent to address. By contrast, Missouri identifies genetics as a contributing factor to disparities. Oklahoma’s definition highlights root causes of disparities as “poverty, racism, class and gender discrimination, and other factors.” California’s definition is unique in its inclusion of mental health disparities.

Areas of focus related to addressing health disparities spanned a wide array of health needs and conditions, with some areas of common focus, including maternal and infant health and chronic disease. For example, Michigan has prioritized addressing disparities in maternal and infant health through its 2024 strategic plan (Box 2). Ohio created the Eliminating Racial Disparities in Infant Mortality Task Force to work with local, state, and national leaders. Arizona’s AZ Health Start Program supports home visits for at-risk pregnant or postpartum women and its Tribal Maternal Task Force was established to develop a culturally relevant Tribal maternal health plan. The North Dakota Diabetes Prevention and Control Program (NDDPCP) established a collaborative between health systems, health centers, and pharmacies to increase point-of-care testing in community pharmacies. Some states also identified a focus on addressing disparities in behavioral health. The California Reducing Disparities Project is a statewide initiative designed to address disparities in behavioral and mental health among certain populations. Colorado established the Behavioral Health Administration, which focuses on addressing the social and structural determinants of behavioral health. Environmental health justice and addressing disparities in health-related environmental impacts is also an emerging focus area. For example, California developed Climate Change and Health Vulnerability indicators to identify people and places more susceptible to adverse health impacts associated with climate change. Wisconsin is developing an Environmental Equity Tool, which will help identify communities impacted by pollution, climate change, socioeconomic factors, and other environmental and health hazards.

Box 2: Michigan’s Maternal and Infant Health Strategic Plan

Michigan’s Department of Health and Human Services (MDHHS) through its Division of Maternal and Infant Health released its 2024 -2028 Advancing Healthy Births – An Equity Plan for Michigan Families and Communities in October 2023. The plan was developed with input through 12 town hall discussions hosted by Regional Perinatal Quality Collaboratives and includes four focus areas: 1) health across the reproductive span, 2) full-term, healthy weight babies, 3) infants sleeping safely, and 4) mental, behavioral health & well-being. The plan includes an expansion of funding for community-based organizations focused on addressing disparities in birth outcomes that is distributed through the regional collaboratives.

Case study respondents noted that the state had a focus on birth equity prior to the COVID pandemic but that the COVID experience accelerated these efforts and drove momentum for an action-oriented plan that was reflective of community input. Success of the state’s COVID racial disparities task force in closing gaps demonstrated the possibility of achieving improvements with focused action.

Some respondents further noted that the strategic plan has helped unify regional and local activities and provided increased structure and funding to support the work. They indicated that providing funding through the collaboratives to local organizations recognizes that the value of community solutions and helps remove barriers for organizations accessing funds, since they do not have to go through state contracting processes.

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Community Engagement

Nearly all states are engaging with or have reported plans to engage with communities to address health disparities and/or equity, although they vary in how they identify community as well as in their approaches and the extent to which they share decision-making with communities. States varied in their references to community, with some defining community as local public health agencies or other local government partners, whereas others included community-based organizations. Some further sought to engage directly with individuals impacted by disparities. How states defined community informed their engagement approaches. State community engagement approaches range in level of engagement and sharing of power and resources, from more incremental efforts that solicit feedback to more comprehensive and deeper efforts that support the increased capacity of communities and community-defined and -led strategies to address disparities. States often implement multiple community engagement approaches, which may address different health or community needs. States engaged in efforts to share power and decision-making with communities tend to have more comprehensive and multi-pronged approaches (See Box 3).

Box 3: Minnesota’s Multi-Pronged Community Engagement Approach

In 2018, Minnesota established a Health Equity Advisory and Leadership Council, which represents the voices of communities impacted by disparities, including people of color, rural residents, people with disabilities, American Indian people, LGBTQ communities, and refugees and immigrants. The council assists the Department of Health in carrying out the efforts outlined in the department’s strategic plan and its Advancing Health Equity report, including advising on specific MDH policies and programs. It also assists in developing performance measures related to advancing health equity.

In 2023, the state passed legislation that created the Capacity Strengthening Initiative, a grant program that provides state funding to community organizations to amplify their ability to support the health and well-being of state residents, with a focus on helping community and faith-based organizations that serve people of color, American Indian people, LGBTQIA+ communities, and people with disabilities. The state also provides grants to community-based organizations through its Community Solutions for Health Child Development Grants and funding to organizations and Tribes through its Eliminating Health Disparities Initiative.

The state also reports using a shared leadership and decision-making model to develop and implement policy and systems solutions to reduce infant mortality among African Americans in Hennepin County. This included establishing a Community Voices and Solutions leadership team representing community groups, grassroots organizations, and local and state health departments to guide the project, which was completed in 2020.

Other community engagement initiatives include The Healthy Minnesota Partnership, which brings together public health professionals, community leaders, and healthcare providers to implement the state’s health improvement plan. The Department of Health Center for Public Health Practice offers training and technical assistance to support authentic engagement practices. Its Health Equity Data Analysis Guide emphasizes the importance of community engagement in the data collection, analysis, and application of results. In addition, the state’s regional Health Equity Networks provide support for local public health, Tribal public health, and community organizations. These networks help to connect, strengthen, and amplify health equity efforts using a regional and relational approach.

States described gaining input from communities by hosting listening sessions or town halls, administering surveys and/or focus groups, or by requesting public comments. For example, when Michigan sought to improve how it collected race and ethnicity data for its health surveys, it posted its proposed changes on its website and requested feedback and held meetings with community groups across the state to raise awareness and garner feedback. Similarly, to inform the development of its Health in All Policies (HiAP) agenda, the New Jersey’s Department of Health worked with Rutgers University to conduct listening sessions with experts and community leaders across the state. To center the voices of Wisconsinites, the state conducted a series of community conversations to understand needs and resources in developing its state health improvement plan.

Beyond soliciting feedback, some states have included community-based organizations, Tribal members, local health departments, faith-based institutions, and other local organizations in strategic planning processes and on task forces, work groups, committees, advisory councils, and boards to inform decision-making. For example, in developing its strategic plan, Hawaii included contributions from universities, physicians, community-based organizations, and other local stakeholders. Oregon’s Healthier Together strategy was led by a community-based steering committee called the PartnerSHIP, which made final decisions about the plan’s priorities and strategies. Nevada’s Health Equity plan outlines efforts to form a data advisory committee to assess data needs and gaps and identify communities for inclusion  in efforts to identify, analyze and report data.

Many states also are providing resources and assets to support community-level efforts and increase the capacity of organizations serving the community. These efforts include strengthening community networks; utilizing community health workers; increasing local health services capacity; and providing training, technical assistance, and culturally tailored communications and resources to community-based organizations. South Carolina’s Cancer Alliance, for example, brings together a network of leaders, communities and organizations to coordinate, collaborate, and provide education and research on cancer disparities and solutions to communities in partnership with the state’s Department of Health and Environment Control. With its COVID Community Partnership (CCP), Utah deployed community health workers to connect under-resourced communities to provide credible health information and COVID-19 vaccines. Moreover, through its Embrace Project Study, it sought to build trust with the Native Hawaiian and Pacific Islander communities by having community health workers provide biometric screenings and health coaching sessions for diabetes and maternal mortality and morbidity prevention. Illinois has focused on increasing the capacity of local health services for behavioral health through its Recovery Oriented Systems of Care (ROSC). This statewide network program geographically distributes councils that assist communities with building local recovery systems of care, including local primary care, law enforcement, hospitals, prevention and recovery services, and a variety of community stakeholders.

Some states have demonstrated a deeper commitment to community engagement by sharing decision-making with the community and supporting community-led initiatives. In some cases, this is via government-to-government partnerships between states and Tribal nations and/or by having a dedicated state infrastructure to partner in Tribal affairs. For example, Alaska’s state health improvement plan (SHIP) is led by a state and Tribal partnership between the Alaska Native Tribal Health Consortium and the state’s Department of Public Health. In other cases, such as Minnesota’s Community Voices and Solutions infant mortality reduction initiative in Hennepin County and the Health Equity Zones in Pennsylvania, Rhode Island, and Washington, the states facilitate and fund initiatives. These initiatives are determined and led by the local communities themselves. In California, the California Reducing Disparities Project was developed specifically to support the design, implementation, and evaluation of community-led approaches to address behavioral and mental health disparities among certain populations (Box 4).

Box 4: The California Reducing Disparities Project

The California Reducing Disparities Project (CRDP) funds and evaluates community-designed and led initiatives to reduce behavioral and mental health disparities among five focus populations: African American people; Asian and Pacific Islander people; Latino people; Lesbian, Gay, Bisexual, Transgender, Queer, and Questioning people; and Native American people.

In case study interviews, respondents emphasized the importance of a focus on behavioral and mental health outcomes as part of health equity efforts and the value of supporting interventions that are developed by the affected communities. They indicated that the state’s openness to supporting these approaches, which include non-Westernized approaches, has allowed for implementation of innovative interventions that are effective for the populations being served. They noted that going forward, the evaluation component of the project has been helpful to illustrate the benefits of and justify these approaches, which may facilitate their sustainability going forward.

Some states have demonstrated a long-term commitment to community engagement through the establishment of staff, infrastructure, and/or strategic plans dedicated to leading and implementing community engagement initiatives. Louisiana’s community engagement strategy is guided by its Community Engagement Framework, which aims to build the health agency’s capacity to engage people and communities equitably. Colorado’s Community Action and Engagement Unit works to identify and support community organizations, healthcare entities, and public health agencies to promote health equity and address SDOH related to COVID-19. Similarly, North Dakota’s Community Engagement Unit is dedicated to community-engaged strategies and serves as a resource for addressing health disparities and advancing health equity.(Back to top)

Cross-Sector Approaches

As part of efforts to address health disparities, many states are implementing initiatives that focus on broader social, economic, and environmental factors that influence health. For example, Connecticut’s Healthy Connecticut 2025 plan addresses SDOH through strategies focused on economic stability, healthy food and housing, and community resilience, while incorporating areas of structural racism, transportation, and education. In Washington State, the Governor’s Interagency Council on Health Disparities, which was created by legislative action, emphasizes equity and community engagement in addressing SDOH, including improving access to healthy food and educational opportunities and reducing environmental hazards. In North Dakota, the state is implementing a new Multi-Partner Health Collaborative, which includes state leaders across sectors and focuses on areas outlined in the State Health Improvement Plan (SHIP) (Box 5).

Box 5: North Dakota Multi-Partner Health Collaborative (MPHC)

The North Dakota MPHC aims to work with community members, non-profit organizations, non-government organizations, healthcare systems, businesses and governmental agencies to equitably enhance the health of all North Dakotans. The MPHC’s steering committee will guide and support four goal groups focused on areas outlined in the SHIP to ensure their effectiveness and alignment with the mission, vision, purpose and values of the MPHC, which includes a cross-cutting focus on equity. The steering committee’s composition strives for broad representation across demographic factors and sectors including but not limited to aging populations, community members, Tribal nations, youth, child advocacy, disability, environment, health care, local public health, and education.

Case study respondents indicated that the intention of the MPHC is to help break down silos between community-based organizations, local public health, and state agencies. This will be the first time the SHIP implementation is driven by external stakeholders and includes a focus on upstream drivers, which one respondent indicated reflects recognition of the importance of addressing systemic issues to drive improvements in health.

Several states have adopted place-based initiatives to address SDOH in specific geographic areas. Get Healthy Idaho’s place-based initiatives engage residents in local areas to identify priorities, challenges, and opportunities to ensure community voices guide the strategy development and implementation process. In Pennsylvania, North Philadelphia’s Health Enterprise Zones and Regional Accountable Health Councils collaborate using health and SDOH assessments to inform population health planning and develop long-term public health strategies, particularly for areas with high disease burden and health disparities. Rhode Island’s Health Equity Zones (HEZs) focus on addressing health inequities in geographic zones through community-led assessments and action plans, with a focus on integrated healthcare, community resilience, the physical environment, socioeconomics, and community trauma.

Some states indicate that they employ a HiAP approach and use Health Impact Assessments to incorporate health equity considerations into decision making across sectors. Nevada’s Health Equity Action Plan recommends adoption of an HiAP approach and utilization of tools like Health Impact Assessments, Racial Equity Impact Assessments, and the Office of Minority Health Equity’s Health Equity Lens to measure the effects of proposed policies, programs, and plans on health equity and community health. Additionally, Nevada promotes the use of health impact notes, similar to fiscal notes, to evaluate the potential health outcomes of proposed legislation across different sectors. In Washington, DC, the Office of Health Equity implements the Calling All Sectors Initiative, which is a multisector approach to operationalize health equity by using a HiAP approach and engaging stakeholders across sectors to promote health, wellness, and equity, recognizing the impacts of housing affordability, insecurity, and homelessness on maternal and infant health.

A growing number of states also are addressing health-related social needs (HRSNs) through their Medicaid programs. Most states that contract with managed care plans to deliver care to Medicaid enrollees report leveraging managed care organization (MCO) contracts to promote at least one strategy to address SDOH in FY 2024. These included requiring MCOs to screen enrollees for behavioral health needs, screen enrollees for social needs, provide referrals to social services, and partner with community-based organizations. States also report requiring MCOs to encourage or require providers to capture SDOH data, incorporate uniform SDOH questions within screening tools, employ community health workers, and track outcomes of referrals to social services. In addition to these MCO activities, as of October 2024, CMS approved ten states (Arizona, Arkansas, California, Illinois, Massachusetts, New Jersey, New Mexico, New York, Oregon, and Washington) under the new Health-Related Social Needs (HRSN) Section 1115 framework. These waivers authorize evidence-based housing and nutrition services for specific populations with unmet social needs. For example, Arizona’s AHCCCS Whole Person Care Initiative provides housing and other supports to individuals at risk of homelessness with health needs. States can also obtain “infrastructure” funding to support the implementation of HRSN waivers or build state or regional capacity to manage population health. For example, New York’s Health Equity Regional Organization is designed to develop regionally focused approaches to reduce health disparities, advance quality and health equity, and make recommendations to incorporate HRSN into value-based payments.(Back to top)

Training and Diversifying the Health Workforce

A number of states identified health equity-related training initiatives for health care providers, although they varied in scope and implementation, with some optional and others required. For example, Alabama has an optional on demand web-based training for nurses, social workers, clinicians, health educators, and other healthcare professionals and administrators to better understand health equity and why it is important to their daily work. Other states have mandated equity-related training through executive action or legislation. For example, a 2019 law in California seeks to reduce Black maternal mortality by requiring all perinatal health care providers to undergo implicit bias training. Colorado passed legislation in 2022 requiring the Office of Health Equity and The Department of Public Health and Environment to create a culturally relevant and affirming health care training grant program aimed at increasing provider capacity to provide culturally responsive care. Maryland passed legislation requiring applicants for the renewal of a health occupations board license or certificate to attest to the completion of an approved implicit bias training program. Maryland also is in the process of creating a maternal health equity advisory group that will produce recommendations to educate non-obstetric providers of care to pregnant and postpartum patients on the topics of maternal morbidity, racial bias, and the importance of respecting the patient’s voice.

Some states reported efforts to increase the diversity of the health care workforce. For example, California’s Medicine Scholars Program, which was established, in part, through state funding, seeks to reduce barriers students of color face as they move through the pipeline to jobs in the medical workforce. Similarly, New York provides funding for student support programs designed to increase the diversity of providers in the state, including its longstanding diversity in medicine program.

Another area of focus for states is increasing access to and availability of community-based providers, including community health workers and doulas. Some states are seeking to increase access to these providers by providing patient education about these services, supporting training to increase the supply of these providers, and providing reimbursement for their services. For example, the intends to increase the number of Black birthing people who are informed about the benefits of doula care and offered the opportunity to work with doulas; improve the prenatal, labor, and delivery, and postpartum care of Black birthing people; and support the development of a culture of understanding and mutual respect between doulas and clinical staff. Other analysis shows, as of early February 2024, 12 states reimburse services provided by doulas under Medicaid , with two states, Louisiana and Rhode Island, also implementing private coverage of doula services. Additionally, states are funding grants or scholarships to support doula training and credentialing. Michigan launched a Doula Initiative that includes Medicaid reimbursement for doulas and efforts to increase and support doula providers, which is informed by a Doula Advisory Committee (Box 6). Other states identified efforts to enhance access to community health workers. For example, the Indiana Department of Health is using a place-based approach in which districts experiencing disparities are allocated community engagement funds to be used by community health workers to address the needs of underserved populations in the area. Montana is investing in the ongoing training for community health workers on issues related to health equity, cultural competencies, and SDOH.

Box 6: Michigan Doula Initiative

In January 2023, the Michigan Medicaid program began reimbursing doula services. Coinciding with this reimbursement, the state established the Doula Initiative, which maintains a registry of doulas and aims to increase and support doula services by providing technical assistance and engaging with doulas, families, and partners to increase access to services. These efforts are informed by a Doula Advisory Council that represents doulas across the state and advises on training curricula, continuing education, billing issues, and challenges.

Case study respondents indicated that the Doula Advisory Council and other community organizations have provided important feedback to help guide implementation of the Medicaid reimbursement policy. They noted that there are challenges associated with applying a clinical model to non-clinical providers who do not have prior experience or, in some cases, capacity to participate in a reimbursement model. As such, providing doulas tools to understand and navigate the system is an important component of implementation of the new policy.

(Back to top)

Data Equity Initiatives

Most states are publicly reporting data to support efforts to address disparities, but there is wide variation in the timeliness, format, and scope of these data. Many states have static reports with measures of health and, in some cases, health-related social and economic factors broken out by race and ethnicity and other demographic factors, which may be updated on a regular basis. For example, in California, the Office of Health Equity produces a biannual demographic report on health and behavioral and mental health inequities for the state legislature and residents. The scope of measures included in these reports, as well as the timeliness of the data included, varies across states. In some states, the latest publicly available reports have outdated data, while others are updated on a regular and timely basis. Beyond these static reports, a growing number of states are developing interactive data dashboards, data portals, or maps that allow users to explore a wide variety of measures, sometimes including social, economic, and/or environmental measures, by various demographic factors. For example, Washington’s Tracking Network was developed to make public health data more accessible by featuring a variety of data tools, including an Environmental Health Disparities map, which depicts where environmental health disparities are occurring to prioritize public investments. Similarly, in a partnership between the Division of Public Health, Delaware Racial Justice Collaborative, and United Way, Delaware’s Equity Counts Data Center provides multiple data points (i.e., indicators in health, education, criminal justice, and economics) that can be used to examine disparities by race, ethnicity, gender, and age across the state and at the zip code level.

Several states also have developed or indicated that they are in the process of developing indices or datasets related to measuring equity and/or social vulnerability. For example, the Get Healthy Idaho Index and Community Data tool measures and ranks neighborhoods’ health and well-being based on factors like access to healthy food, parks, clean air, and healthcare services, to provide a holistic view of community health. The index aims to guide policymakers and community leaders to improve the overall health of Idaho. Arizona indicates that it is adapting the CDC’s Social Vulnerability Index into an Arizona-specific index. Utah’s Health Improvement Index includes nine determinants of health including demographics, socioeconomic deprivation, economic inequality, resource availability, and opportunity structure. Michigan reports it is developing a health equity data set that will include indicators for social and economic conditions; environmental conditions; health status, behaviors, and healthcare; and priority health outcomes to monitor racial health disparities. In addition to SDOH, some states also are reporting measures related to environmental quality and conditions in their data dashboards or indices. For example, Rhode Island provides a map of extreme heat impacts in their Health Equity Zones.

Beyond efforts to increase accessibility of data through public reporting, some states also report changing data collection practices to support greater disaggregation of data. For example, through its REALD (race, ethnicity, language, and disability) and SOGI (sexual orientation and gender identity) efforts, Oregon is working to increase and standardize the collection of these data across health agencies. Utah’s Department of Health and Human Services has developed guidelines to promote a uniform set of data collection standards for race and ethnicity. Several other states have indicated plans to enhance their data collection and reporting practices. For example, North Dakota is examining how to improve data for multiracial people and incorporate race and ethnicity questions into its data collection practices. California also has pending legislation to use more detailed racial and ethnic categories. Michigan is prioritizing expanding the collection of race, ethnicity, and preferred language data. It is also working to implement reliable survey tools to collect data from smaller racial and ethnic groups and communities not represented in standard data collection systems.

Additionally, some states are working to increase data accessibility through data sharing. For example, some are putting data sharing agreements in place and/or improving the interoperability of datasets within and across state agencies, healthcare organizations, and with Tribes. Some states have also established data committees or advisory groups that oversee data coordination between agencies and sectors. For example, Connecticut is working to establish a cross-sector data committee that would act as a technical body to provide support to agencies across the department and advise the State Health Improvement Plan Advisory council.

Some states include a focus on equity as part of their Maternal Mortality Review Committees (MMRCs). Nearly all states have MMRCs, many of which are funded through the CDC, that review pregnancy-associated deaths and offer recommendations to prevent future deaths. However, state MMRCs vary in the extent to which they examine racial disparities, with some identifying and addressing disparities as a key focus. For example, in California, each death is examined through a health equity lens and considerations include how SDOH, discrimination, and racism may have contributed to the death. Similarly, Vermont amended the charge of its committee in 2020 to include considerations of disparities and SDOH, including race and ethnicity in perinatal death reviews. Rhode Island recently replaced its MMRC with the Pregnancy and Post-Partum Death Review Committee and noted that the name acknowledges the breadth of gender identity of individuals who may become pregnant. States also vary in the membership of their committees, with some having requirements related to Tribes and/or doulas or midwives. For example, Colorado’s MMRC includes experts with lived experience in the drivers of maternal mortality, including doulas, midwives, and patient advocates.(Back to top)

Internal Operations

Some states have created cross-agency learning collaboratives to embed equity into their institutional practices among their state workforces. Through its Capitol Collaborative on Race and Equity, California established a 15-month learning cohort of 25 of the state’s departments, agencies, offices, commissions, and conservancies to embed racial equity into their respective institutional culture, policies, and practices with the aim that race will no longer be a factor in determining life outcomes or well-being for communities of color. The Minnesota Department of Health Equity Learning Community helped teams from local public health departments integrate health equity practices into their work. It identified several areas of suggested changes to existing practice, including data collection, analysis, and use; community engagement; organizational operations, like policies, budgets, and hiring; and policy work. Rhode Island’s Capacity Building for Policy Change Workshop Series is designed to support their Health Equity Zones in enhancing their capacity to engage in policy and systems change efforts that include making equity improvements to ordinances, state and local regulations, and agreements with municipal agencies and/or institutions like hospital systems.

States are also shifting internal operations by providing and, in some cases requiring, equity-related training for their staff. In Louisiana, Initiative 16 was developed to train and build the capacity of staff to have an understanding of systemic health equity, translate this to their daily work, and incorporate equity practice expectations into annual performance reviews. Maine’s Department of Health and Human Services developed a plan to increase DEI capacity within the department through a range of strategies, including publicly reporting staff demographics and providing staff training on best practices for hiring a diverse workforce and education about Equal Employment Opportunity and implicit bias in hiring. Some states are mandating training among the state workforce. For example, through executive order in Colorado, the Department of Personnel and Administration was tasked with developing and delivering required training for all state employees, with additional requirements and expectations for agency executives on DEI issues, including education on implicit bias, historical injustices and trauma, community engagement practices, and new assessment tools. Similarly, in Washington, the Secretary of Health’s directive mandates that leadership, management, and supervisors adhere to the recruitment policy and implement “hiring best practices” which include the requirement to complete implicit bias training and encourage ongoing training in the areas of diversity, inclusion, cultural humility, oppression, and equity.

In contrast, other states are moving to ban or restrict DEI-related activities. For example, under SB 266, public institutions in Florida are prohibited from funding or maintaining DEI programs. Similar legislation was passed in Texas under HB 5127, which bans DEI offices and diversity training for students and employees at public institutions as of January 1, 2024. Utah passed HB 261, which bans DEI offices and training requirements and prohibits race being considered in hiring practices for state board and government employees. In December of 2023, the Oklahoma governor signed an executive order banning DEI programs at state agencies; effective immediately, the order eliminated funding for all DEI positions. Some state medical boards have also been moving to limit DEI actions. A lawsuit against the Tennessee medical board challenges the legality of policies to ensure representation from minority groups through racial quotas. A similar lawsuit has been filed in Louisiana against the medical board for the use of racial quotas.

States are also stipulating requirements in operational procedures such as budgetary decisions, funding criteria, and contracting to support equity. For example, states like Minnesota, New York, Illinois, and Michigan dedicate specific budget lines to allocate funding for programs to reduce racial health disparities in areas including maternal health, HIV prevention, and mental health services. California established a Racial Equity Commission to develop tools for assessing how budget allocations impact communities of color, and Rhode Island is exploring incorporating community participatory budgeting practices. Some states are leveraging budgetary and funding requirements to expand state capacity to address disparities in social and environmental determinants of health. For example, Washington’s HEAL Act instructs covered agencies to incorporate environmental justice into funding and budgeting processes with the goal of directing 40% of funding for programs that create environmental benefits to go to “overburdened communities and vulnerable populations.” Other states stipulate requirements for contractors and procurement procedures that support equitable practices. Arizona’s Community Reinvestment policy, for example, requires contractors to designate and spend a minimum share of profits for community reinvestment activities (e.g., housing, non-medical transportation services, activities to combat social isolation or enhance social support, activities that reduce recidivism, employment or educational supportive activities, social programs that promote health and wellness and/or research activities that support a specific community activity that improves health outcomes).

Within Medicaid, many states leverage managed care contracts to promote reducing health disparities. As noted above, this includes adopting contract requirements related to addressing SDOH. Additionally, some state managed care organization (MCO) contracts incorporate requirements to advance health equity and/or tie MCO financial quality incentives to reducing health disparities. In a KFF survey, about one-third of responding MCO states reported at least one MCO financial incentive tied to reducing racial and ethnic disparities in place in FY 2024, including linking capitation withholds or pay-for- performance incentives to improving health disparities. Additionally, nearly all responding MCO states also reported at least one specified MCO requirement related to reducing disparities in FY2024, including requiring MCOs to have a health equity plan in place and train staff on health equity and/or implicit bias. Over half of states reported requiring MCOs to meet health equity reporting requirements and seek enrollee input or feedback to inform health equity initiatives. Fewer states reported requiring MCOs to achieve national accreditation standards or to have a health equity officer.(Back to top)

Lessons Learned

In addition to the review of public materials, we conducted 14 case study interviews with stakeholders in three states to increase understanding of lessons learned from state efforts to address disparities. The case study initiatives reflect some of the broad themes of state activities identified through the analysis of publicly available materials and represent states with varied geography, racial and ethnic demographics, and political leadership. They include California’s Reducing Disparities Project (CRDP), which implements  community defined practices to reduce mental health disparities; North Dakota’s Community Engagement Unit, which prioritizes a community engagement approach to reducing disparities and includes a focus on Tribal relations; and Michigan’s efforts to narrow disparities in maternal and infant health through its Advancing Healthy Births equity plan and its Doula Initiative. (See Methods for more details.) Lessons learned from the case study interviews include the following.

Having strong leaders and champions within the state is important for success. Respondents noted that supportive leadership at the state executive level and within key state agencies has been key for facilitating the vision and funding necessary to support these initiatives. For example, in Michigan, respondents highlighted the importance of the Governor’s prioritization of maternal and infant health equity, which was backed by investment in the work. Respondents also referenced the importance of having champions within state legislature and at the local level, particularly in cases in which initiatives have required ongoing legislative funding. For example, respondents in California noted that having champions within the state legislature and county behavioral health offices was important for establishing the CRDP and maintaining it over multiple legislative funding cycles. Respondents further emphasized the importance of such leaders being supportive of addressing upstream drivers of disparities, including social and economic factors, and openness to systems change. At the same time, one respondent noted the importance of institutionalizing changes through policy or operations so that efforts are not contingent on specific leadership being in place and are more likely to continue amidst staff turnover or changes in leadership.

Authentic long-term trusted relationships between the state and community are an integral piece of this work. Respondents noted the importance of establishing authentic community engagement by meeting communities where they are, demonstrating responsiveness to their interests and needs, and maintaining ongoing, long-term conversations. For example, in North Dakota, the community engagement team travels to meet with communities, including Tribes, on an ongoing basis. This allows them to respond to issues raised by the community and deepen relationships over time. In Michigan, the state participates in regular meetings hosted by regional collaboratives in locations chosen by the community that are usually held in the evenings when families can attend. Families drive the conversation, and the state takes advisement and then reports back on issues raised in subsequent meetings. Respondents noted that authentic community engagement often involves a shift in dynamics from one in which communities used to have to come to the state to now the state traveling out to meet communities and from the state just taking data previously versus now sharing it back with the community.

Openness to innovation and community-led approaches facilitates development of new models and strategies.  Community defined and led approaches are core features across the initiatives being implemented in the case study states. Respondents highlighted the importance of state leadership being open to innovative models that do not fit within current systems and structures and supporting their implementation by allowing communities to design and lead efforts and providing funding to support these efforts. It was recognized that this sometimes requires being creative and finding ways to work within existing limits of system structures to implement new approaches. In California, the CRDP model recognizes that community-defined practices can be viable and valuable and that prevention and services do not need to adhere to a one-size-fits-all approach. This model recognizes that a particular approach may not work for everyone but can be effective at addressing the specific needs of the community being served. In North Dakota, respondents noted that the state is engaging with the community and key stakeholders to work toward the goals outlined in its SHIP. Respondents also pointed to the value of investing directly in the community. For example, in Michigan, the state increased funding directed to community-based organizations as part of its Advancing Healthy Births initiative. One respondent noted that the experts are the families and that solutions to challenges often can be found from the people you are serving.

Terminology used to describe this work can be important for garnering broad-based support amid opposition to DEI efforts and race-based interventions. Several respondents noted that describing initiatives as equity-focused can jeopardize broad support for this work amid the rising anti-DEI movement. They felt that implementing the work is more important than what it is called and noted that using terminology that is truthful to the work being done but intentional in avoiding potential opposition can be key for maintaining broad-based support. Some emphasized, for example, that health equity is not just about race, it is about working with a wide variety of populations, including rural and low-income populations, and about focusing on access to health care and addressing SDOH. Moreover, work to mitigate health disparities can elevate the entire system and benefit all residents of the state, not just populations of focus.

Having strong evaluation data can help maintain support for initiatives and facilitate their sustainability over time. Respondents highlighted the importance of having data to document the impacts and successes of initiatives, which can help counter potential opposition to equity-focused efforts and makes the case for sustaining the work. In California, each of the CRDP initiatives is being evaluated individually and as a whole, which helps demonstrate the impacts of the work and the value of community-designed approaches. Respondents also noted that having data can help guide programs to adapt and change over time by providing insight into what is working and what is not.

Establishing long-term funding strategies will be key to sustaining these initiatives over time. Much of the work under these initiatives in the case study states has been supported through limited funding streams, including time-limited appropriations and grants. Respondents recognized that to support long-term sustainability and increased scalability over time, it will be important to embed the efforts into systems and support them through reimbursement mechanisms. They identified challenges to integrating community practices into public health systems and suggested it will be important to consider how existing systems could adapt to integrate a broader array of models through a combination of cultural and systems change. For example, in Michigan, the Medicaid program has expanded to provide reimbursement for doulas and to create the doula registry. Respondents in California noted how identifying Medicaid and other reimbursement models could evolve to include community-designed approaches demonstrated through the CRDP will be important for long-term sustainability of these efforts.(Back to top)

Looking Ahead

This analysis shows that states with varying geographies, demographics, and political leadership are pursuing work to address health disparities. However, states differ in the level of commitment and resources focused on this work. While some states are taking more incremental steps, others have identified this work as a major cross-sector strategic priority, establishing dedicated infrastructure and resources to support this work, taken steps to empower and support impacted communities, and are working toward broader systems and policy change to mitigate disparities. In these cases, case study respondents shared that certain facilitating factors have been vital to establishing and working toward sustaining health equity initiatives including having supportive leadership, building trust with communities, prioritizing community-driven innovations, considering the political context for messaging, demonstrating impact with data, and planning for sustainability.

As a result of these efforts, states have directed increased staff and resources to this work, established infrastructure or policies that facilitate community input to inform state decision-making and program implementation, directed increased financing to community-based organizations, and enhanced the data available to identify and direct efforts to address disparities. In particular, the establishment of new infrastructure and policies to address disparities and advance equity may facilitate the sustainability of this work amidst potential turnover in staff and leadership.

While this analysis provides greater insight into the range of state-reported activities to address health disparities and/or equity, it does not give insight into the effectiveness or outcomes associated with these actions. Future work examining the impacts of these efforts on both state operations and disparities in health care and health outcomes will be important to help guide continued efforts to address health disparities and advance greater health equity.(Back to top)

Methods

The approach for this analysis consisted of two phases: a systematic review of publicly available materials and case studies in three states on efforts to address health disparities and advance health equity. The review was conducted for about a six-month period between September 13, 2023 and March 5, 2024. It began by compiling, reading, and synthesizing relevant literature including reports, blog posts, and journal articles to get grounded in the potential landscape of state-level issues on the topic. This informed an iterative process that started with piloting a draft protocol and inclusion criteria for reviewing public-facing webpages and content linked to webpages (e.g., PDFs of reports) for two states. The research team then created a data collection framework based on thematic categories (e.g., health equity infrastructure, strategic initiatives, data equity, etc.) that was piloted with two more states. Following, the protocol, inclusion criteria, and framework were refined over time through routine team discussions to reconcile divergent issues and by making adjustments for emergent themes for the remaining states.

The team conducted the review using criteria that were intentionally inclusive, rather than exclusive, to allow for capture of a range of possible state activity that states identify as related to addressing health disparities and/or equity. Specifically, the team included a broad range of work identified by states related to health equity, health disparities/inequities, social determinants of health, health in all policies, and efforts to address the health needs of diverse populations. An expansive search approach was utilized by looking for information across a diverse set of state agencies, beyond those dedicated to health (e.g., justice, natural resources, education, etc.) and by including content where the state agency was a collaborating partner but not necessarily the lead. Relevant information that did not fit the established data collection framework was also included to facilitate the identification of atypical and innovative activities occurring in a small number of states.

The states selected for the case studies were California, North Dakota, and Michigan. In selecting the case study states, the goal was to identify state efforts that reflect the broad themes of state activities identified through the analysis of publicly available materials, as well as to represent varied geography, racial and ethnic demographics, and political leadership. We also sought to avoid including state efforts that have already been highlighted in other national-level analyses. The team conducted five interviews for each state case study with the aim of understanding the impetus for the initiative, the accomplishments and lessons learned, and perspective on future directions for the work. Key stakeholders who were interviewed represented state employees that staffed the initiatives and their community partners allowing our team to gain insights of both the intentions of the initiative and the challenges that may come with program development and implementation. Each interview was tailored to the key stakeholder’s role, and the analysis to develop the case was conducted iteratively as each interview was conducted.

This project is limited to being descriptive in nature during a specified period of time. It is possible that states may have had activity underway that was not reflected in their public-facing materials. In some cases, it was difficult to determine the current phase of strategy. For example, the presence of a strategic plan does not mean it has been funded and implemented as intended.

This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities. KFF worked with Naima Wong of Croal Services Group and Jalisa Whitley of Unbound Impact to conduct this project.

Medicare Part D in 2025: A First Look at Prescription Drug Plan Availability, Premiums, and Cost Sharing

Authors: Juliette Cubanski and Anthony Damico
Published: Nov 22, 2024

During the Medicare open enrollment period from October 15 to December 7 each year, people with Medicare can enroll in a plan that provides Part D prescription drug coverage, either a stand-alone prescription drug plan (PDP) for people in traditional Medicare, or a Medicare Advantage plan that covers all Medicare benefits, including prescription drugs (MA-PD). In 2024, 53 million of the 67 million Medicare beneficiaries are enrolled in Medicare Part D plans, including employer-only group plans; of the total, 57% are enrolled in MA-PDs and 43% are enrolled in stand-alone PDPs. This analysis provides an overview of Part D plan availability, premiums, and cost sharing in 2025 and key trends over time. (Separate analyses of 2025 Medicare Advantage plans, premiums and benefits are also available.) (See Methods box for details on this analysis.)

Overall, KFF analysis shows that the market for Part D coverage remains robust based on the overall number of plan options, but the number of sponsors, plans, and enrollees in the stand-alone PDP market has trended downward over time, while the MA-PD market remains stable and continues to experience steady enrollment growth. In part, this reflects the predominance of low- or zero-premium MA-PDs and the availability of extra benefits, which are enabled by rebates in the Medicare Advantage payment system and amplified by aggressive marketing. Monthly premiums for stand-alone PDPs are substantially higher than for MA-PDs.

Changes to the Part D benefit in the Inflation Reduction Act, including a new $2,000 out-of-pocket drug spending cap, will mean lower out-of-pocket costs for some Part D enrollees but higher costs for Part D plans overall. Some stand-alone PDPs are increasing monthly premiums for 2025 by up to $35, the maximum increase allowed for plans participating in a new premium stabilization demonstration, while a larger share of MA-PD plans are imposing deductibles for drug coverage and coinsurance for certain types of drugs in 2025 compared to 2024. Part D plans often make other changes from one year to the next that could affect drug coverage and costs, including changes to formularies and preferred pharmacies, re-enforcing the value for Part D enrollees in comparing plans during the annual open enrollment period.

Medicare Part D Highlights for 2025

  • The average Medicare beneficiary has a choice of 48 Medicare plans with Part D drug coverage in 2025, including 14 Medicare stand-alone prescription drug plans (7 fewer than in 2024) and 34 Medicare Advantage drug plans (2 fewer than in 2024). Over the past 10 years, the number of PDPs available to the average beneficiary has decreased by 52% while the number of MA-PDs has increased by 143%.
  • The number of firms offering stand-alone PDPs has dropped from 11 in 2024 to 7 in 2025, along with a reduction in the overall number of PDPs (down from 709 to 464).
  • In 2025, a smaller number of PDPs will be “benchmark” plans – that is, PDPs available for no monthly premium to Medicare Part D enrollees receiving the Low-Income Subsidy (LIS) – than in any year since Part D started. Medicare beneficiaries will have access to 1 less benchmark PDP in 2025 than in 2024, on average – two out of the average 14 PDPs available overall. An estimated 1.1 million LIS enrollees (26% of all LIS PDP enrollees) need to switch plans during the 2024 open enrollment period if they want to be enrolled in a benchmark plan in 2025.
  • The estimated average enrollment-weighted monthly premium for Medicare Part D stand-alone PDPs is projected to be $45 in 2025, a modest increase from $42 in 2024 (based on June 2024 enrollment). After accounting for enrollment choices by new enrollees and plan changes by current enrollees, the actual average weighted PDP premium for 2025 is likely to be lower than the estimated average of $45.
  • Monthly premiums for drug coverage are estimated to be six times higher for PDPs compared to MA-PDs in 2025 – $45 versus $7. The average monthly premium is projected to increase for PDPs but decrease for MA-PDs. MA-PD sponsors can use rebate dollars from Medicare payments to lower or eliminate their Part D premiums, as well as provide extra benefits, but there is no equivalent rebate system for PDPs.
  • Average monthly premiums for the 12 national PDPs are projected to range from around $3 to $128 in 2025. Premium variation across plans is in part related to whether plans offer basic or enhanced benefits and the value of benefits offered, as well as variation in the underlying costs that plans incur for their enrollees.
  • More than half of non-LIS Part D PDP enrollees (7.0 million out of 13.1 million) will see a reduction or no change in their monthly premium in 2025 if they make no changes during open enrollment, but 1 in 5 non-LIS PDP enrollees (2.6 million) will see their monthly premium increase by $35 if they stay in their same plan for 2025. This is the maximum increase allowed for PDPs participating in the new Part D premium demonstration, which includes measures intended to stabilize the PDP market as major changes to the Part D benefit take effect in 2025, including a new $2,000 out-of-pocket drug spending cap.
  • The share of MA-PD enrollees who will be in plans that charge a deductible for Part D coverage will nearly triple from 21% in 2024 to 60% in 2025 if they do not switch plans. Most stand-alone PDP enrollees (84%) will also be enrolled in plans that charge a deductible for drug overage in 2025, similar to the share in 2024 (87%). (Some of the enrollees in these plans receive low-income subsidies that cover their deductible.) The average deductible in 2025 will be more than twice as large for PDP enrollees as for MA-PD enrollees ($486 versus $225) (the standard deductible in 2025 is $590).
  • Many Part D enrollees will face coinsurance rather than copayments for both preferred brands and non-preferred drugs, which can mean less predictable out-of-pocket costs. This includes a larger share of MA-PD enrollees compared to 2024: 28% will be in plans that charge coinsurance for preferred brands versus 2% in 2024, and 57% will be in plans that charge coinsurance for non-preferred drugs versus 11% in 2024. Among PDP enrollees, 83% will be in plans that charge coinsurance for preferred brands and 100% in plans charging coinsurance for non-preferred drugs in 2025. For specialty tier drugs (those that cost more than $950 per month), median coinsurance will be 25% for PDP enrollees and 30% for MA-PD enrollees.

Part D Plan Availability

For 2025, the Average Medicare Beneficiary Has Fewer Stand-Alone Prescription Drug Plan Options Than in Prior Years but a Similar Number of Medicare Advantage Drug Plan Options

The Part D market for 2025 offers the average Medicare beneficiary fewer choices for drug coverage from stand-alone prescription drug plans than in prior years, but a similar number of choices for coverage from Medicare Advantage drug plans. The average Medicare beneficiary has a choice of 48 options for Part D coverage in 2025, including 14 PDPs (7 fewer than in 2024) and 34 MA-PDs (2 fewer) (Figure 1). Over the past 10 years, the number of PDPs available to the average beneficiary has decreased by 52% while the number of MA-PDs has increased by 143%.

The Average Medicare Beneficiary Has a Choice of 48 Medicare Plans Offering Drug Coverage in 2025, Including 14 Stand-Alone Prescription Drug Plans and 34 Medicare Advantage Drug Plans

Of the 14 PDPs available to the average beneficiary in 2025, 12 are national PDPs (available in all 34 PDP regions nationwide) (Appendix Table 1). This reduction of two national PDPs from 2024 is the result of one plan sponsor (CVS Health/Aetna) consolidating its 3 PDP offerings in 2024 (SilverScript Choice, Plus, and SmartSaver) to 1 PDP in 2025 (SilverScript Choice). The 2.0 million enrollees in the SilverScript Plus and SmartSaver PDPs (as of June 2024) will be automatically enrolled in SilverScript Choice for 2025 unless they choose a different plan during open enrollment.

A Total of 7 Firms Will Offer 464 Stand-Alone Prescription Drug Plans in 2025, the Lowest Number of PDP Sponsors and Plans Since Part D Started

The number of firms sponsoring stand-alone PDPs is decreasing from 11 firms in 2024 to 7 firms in 2025, the smallest number since the Part D benefit was launched (Figure 2). Due to the market withdrawal of Mutual of Omaha from the PDP market and the termination of Clear Spring Health PDPs by the Centers for Medicare & Medicaid Services (CMS) due to low quality ratings over three years, the 537,000 enrollees in these firms’ PDPs (as of June 2024) will need to select a new Part D plan from a different plan sponsor during the 2024 open enrollment period if they want their Part D coverage to continue in 2025.

A total of 464 PDPs will be offered by these 7 firms in the 34 PDP regions (plus another 10 PDPs in the territories), a decrease of 245 PDPs (-35%) from 2024, and the lowest number of PDPs available in any year since Part D started in 2006.

Seven Firms Will Offer a Total of 464 Medicare Part D Stand-Alone Prescription Drug Plans in 2025, Fewer PDP Sponsors and Plans Than in Any Other Year

Despite the reduction in PDP availability overall, beneficiaries in each state will have a choice of multiple plans, ranging from 12 PDPs in 12 states and the District of Columbia to 16 PDPs in California, plus multiple MA-PDs offered at the local level (Figure 3, Appendix Table 2).

The Number of Medicare Part D Stand-Alone Prescription Drug Plans in 2025 Ranges Across States from 12 to 16

Premiums

Stand-Alone Prescription Drug Plan Enrollees Will Pay Higher Monthly Premiums Than Medicare Advantage Drug Plan Enrollees in 2025 – $45 versus $7, on Average

The estimated national average monthly PDP premium is projected to be $45 in 2025, which is six times higher than the average $7 monthly premium for drug coverage in MA-PDs (Figure 4). Between 2024 and 2025, the average monthly premium is increasing by $3 for PDPs but decreasing by $2 for MA-PDs. MA-PD sponsors can use rebate dollars from Medicare payments to lower or eliminate their Part D premiums and offer extra benefits, but there is no equivalent rebate system for PDPs. According to MedPAC, Medicare Advantage monthly rebates per enrollee have more than doubled since 2018, from $95 to $194 in 2024, and of the $194 total monthly rebate amount in 2024, $24 was used to reduce MA-PD Part D premiums.

The Average Monthly Premium for Drug Coverage Is Substantially Higher for Medicare Part D Stand-Alone Prescription Drug Plans Compared to Medicare Advantage Drug Plans

It is likely that, after accounting for enrollment choices by new enrollees and plan changes by current enrollees, the actual average weighted PDP premium for 2025 will be lower than the estimated weighted average of $45 but still well above the average MA-PD premium.

There are two mechanisms in place that are helping to constrain Part D premium increases for PDPs between 2024 and 2025:

  • One is a premium stabilization provision in the Inflation Reduction Act that capped annual growth in the Part D base beneficiary premium at 6% beginning in 2024. (The base beneficiary premium is not the same as the amount that Part D enrollees pay for coverage, and the law did not cap the growth in individual plan premiums to 6%.)
  • The other is a new voluntary Part D premium stabilization demonstration for PDPs, which capped premium increases at $35 per month, along with other measures intended to stabilize the PDP market as changes to the Part D benefit take effect in 2025, including a new $2,000 out-of-pocket drug spending cap. MA-PDs are not eligible for this demonstration.

Without these mechanisms in place, it is likely that the average PDP premium increase, and monthly PDP premium amounts in 2025, would have been larger.

Average Monthly Premiums for the 12 National PDPs Are Projected to Range from $3 to $128 in 2025

Actual Part D premiums for 2025 vary widely across plans, as in previous years, and may be increasing by more or less than the national average (or even decreasing). Among the 12 national PDPs, there is a difference of more than $1,500 in average annual premiums between the highest-premium PDP and the lowest-premium PDP. At the high end, the monthly premium for Humana Premier Rx Plan (the 8th largest plan by overall enrollment) will be $128, totaling more than $1,500 annually. At the low end, the monthly premium for Wellcare Value Script (the largest plan) will average just over $3, or $38 annually (Figure 5).

In addition to Humana Premier Rx Plan, two other national PDPs will charge monthly premiums of more than $100 in 2025, on average: Cigna Healthcare Extra Rx, the 12th largest plan ($102), and Wellcare Medicare Rx Value Plus, the 10th largest plan ($107). An estimated 1.3 million people will be enrolled in the 3 national PDPs that charge more than $100 per month in premiums in 2025 if they make no changes to their coverage during open enrollment. Another 2.0 million enrollees will pay an average $95 monthly premium for the AARP Medicare Rx Preferred PDP in 2025, unless they switch plans.

Average Monthly Premiums for the 12 National Stand-Alone Prescription Drug Plans in 2025 Are Projected to Range from a High of $128 to a Low of $3

Monthly premiums for several national PDPs vary widely around each plan’s national average (Figure 5). For 6 of the 12 national PDPs, there is a difference of $90 or more across the 34 PDP regions between the plan’s lowest and highest premiums. For example, the monthly premium for the AARP Medicare Rx Saver PDP averages $67 but ranges from $0 to $128 across regions; and for Humana Basic Rx, the average premium is $43 but ranges across regions from $0 to $121. For most of these 12 national plans, monthly premiums are consistently higher in New York and California relative to other regions.

More Than Half of Stand-Alone PDP Enrollees Will See a Reduction or No Change in Their Monthly Premium in 2025 if They Stay in Their Current Plan

Of the 13.1 million Part D PDP enrollees who are responsible for paying the entire premium, which excludes Low-Income Subsidy (LIS) recipients, more than half (54%), or 7.0 million enrollees, will see either a reduction in their monthly premium (41%) or no change (13%) if they stay in their current plan for 2025 (Figure 6). Just under half of Part D stand-alone plan enrollees (46%, or 6.0 million) will see their monthly premium increase in 2025 if they make no change to their coverage during open enrollment for 2025. This is lower than the two-thirds of non-LIS PDP enrollees (66%, or 8.6 million) who were projected to pay higher monthly premiums if they remained in their plan for 2024.

Of the 6 million non-LIS PDP enrollees who will see an increase in their Part D premium if they stay in their current plan, 3.4 million (26% of non-LIS PDP enrollees overall) will see an increase of less than $35 and 2.6 million (20% overall) will see an increase of exactly $35. This is the maximum monthly premium increase allowed for PDPs participating in the new Part D premium stabilization demonstration. According to CMS, virtually all PDP enrollees are in plans sponsored by insurers that opted to participate in the voluntary demonstration.

More Than Half of Part D Stand-Alone Drug Plan Enrollees Without Low-income Subsidies Will See a Reduction or No Change in Their Monthly Premium in 2025 If They Stay in Their Current Plan - A Larger Share Than in 2024

Medicare Part D enrollees in national PDPs in 2024 will face a range of premium increases and decreases if they make no change to their coverage for 2025 during open enrollment (Figure 7). Notably, enrollees in two of the three PDPs sponsored by CVS Health-Aetna could see substantial premium changes, with the consolidation of SilverScript Plus and SilverScript SmartSaver PDPs into one PDP for 2025 (SilverScript Choice). If they make no changes during open enrollment, the 0.3 million enrollees in SilverScript Plus in 2024 will see their monthly premiums reduced by more than half when they are crosswalked to SilverScript Choice, from $103 to $45. On the other hand, the 1.7 million enrollees in SilverScript SmartSaver will face a substantial increase, from $11 to $44, on average.

Part D Enrollees in the National PDPs in 2024 Will Face a Range of Premium Increases and Decreases for 2025 If They Make No Changes During Open Enrollment

Deductibles and Cost Sharing

6 in 10 Medicare Advantage Drug Plan Enrollees Will Be in Plans That Charge a Deductible for Drug Coverage in 2025, up from 1 in 5 in 2024, and the Average Deductible is Increasing Four-Fold for MA-PD Enrollees

Among MA-PD enrollees, 60% (10.9 million) will be in a plan that charges a deductible for drug coverage if they stay in their same plan, though only 11% will be in a plan that charges the standard $590 deductible (Figure 8). The share of MA-PD enrollees who will be in plans charging a deductible for drug coverage in 2025 is increasing substantially over 2024 levels, when only 21% of MA-PD enrollees were in a plan charging a drug deductible, including 3% in plans charging the standard deductible amount.

A majority of PDP enrollees (84% or 14.5 million) will be in plan that charges a drug deductible in 2025, including three-fourths (76%) who will be in a plan that charges the standard deductible of $590, assuming no change in enrollment (Figure 8). (These estimates include Part D enrollees receiving Low-Income Subsidies, who do not pay a deductible regardless of whether their plan charges one.)

Most Part D Enrollees Will Be in Plans That Charge a Deductible for Drug Coverage in 2025, Including 84% of Stand-alone Drug Plan Enrollees and 60% of Medicare Advantage Drug Plan Enrollees

The average drug deductible charged by MA-PD plans is increasing four-fold from $59 in 2024 to $225 in 2025 (Figure 9). Of the 34 MA-PD plan choices available to the average beneficiary in 2025, 7 will charge the standard $590 deductible, while 13 will charge no deductible. In contrast, only 3 of the 36 MA-PD plan options available to the average beneficiary in 2024 charged the standard deductible and 21 MA-PDs charged no deductible.

For PDP enrollees, the average deductible is increasing from $423 in 2024 to $486 in 2025 – a higher average deductible amount but a smaller increase than for MA-PD enrollees, reflecting the fact that most PDP enrollees were already (and will continue to be) enrolled in plans that charge the standard deductible. Of the 12 national PDPs in 2025, 8 will charge the standard $590 deductible, 2 will charge a lower deductible, and 2 will charge no deductible.

Average Deductibles for Part D Coverage Will Be Higher in 2025 Than in 2024 - Four Times Higher for Medicare Advantage Drug Plan Enrollees

A Larger Share of MA-PD Enrollees Will Face Coinsurance Rather Than Copayments for Preferred Brands and Non-Preferred Drugs in 2025 Compared to 2024

In 2025, as in prior years, Part D enrollees will face much higher cost-sharing amounts for brands and non-preferred drugs (which can include both brands and generics) than for drugs on a generic tier, and a mix of copayments and coinsurance for different formulary tiers. Coinsurance can mean less predictable out-of-pocket costs than copayments. The typical five-tier formulary design in Part D includes tiers for preferred generics, generics, preferred brands, non-preferred drugs, and specialty drugs.

In a notable change for 2025, a larger share of MA-PD enrollees is in plans charging coinsurance rather than flat copayments for preferred brands and non-preferred drugs compared to 2024 levels. The share of MA-PD enrollees facing coinsurance for preferred brands is increasing from 2% in 2024 to 28% in 2025, and the share facing coinsurance for non-preferred drugs is increasing from 11% in 2024 to 57% in 2025.

Among all Part D plans, median standard cost sharing in 2025 for different types of drugs is (Figure 10):

  • Generics: $0 for preferred generics and $5 for other generics in both PDPs and MA-PDs.
  • Preferred brands: a copayment of $47 in both PDPs and MA-PDs, or coinsurance of 20% in PDPs and 24% in MA-PDs); 83% of PDP enrollees and 28% of MA-PD enrollees face coinsurance rather than copayments for preferred brands.
  • Non-preferred drugs: For non-preferred drugs, which can include both brands and generics, all PDP enrollees face a median coinsurance of 40%; 57% of MA-PD enrollees face a median coinsurance rate of 42%, and 43% of MA-PD enrollees face a median copayment of $100.
  • Specialty drugs: Median coinsurance for specialty drugs is 25% for PDP enrollees and 30% for MA-PD enrollees.
A Larger Share of Stand-Alone PDP Enrollees Face Coinsurance for Preferred Brands and Non-Preferred Drugs but the Share of MA-PD Enrollees Facing Coinsurance Has Increased

Among the 12 national PDPs, 8 PDPs will charge $0 for preferred generics in 2024, but copays of $45 to $47 or coinsurance of 15% to 25% for preferred brands, and coinsurance ranging from 31% to 50% for non-preferred drugs; 4 out of the 12 national PDPs are charging the maximum 50% coinsurance for non-preferred drugs. Coinsurance for specialty tier drugs ranges from 25% to 33% in these plans, with 8 of the 12 national PDPs charging 25% and 2 charging 33%. (Plans that charge the standard deductible amount of $590 cannot charge more than 25% for specialty tier drugs.)

Low-Income Subsidy Plan Availability

In 2025, a Smaller Number of Stand-Alone PDPs Will Be Premium-Free to Enrollees Receiving the Low-Income Subsidy Than in Any Year Since Part D Started

Through the Part D LIS program, enrollees with low incomes and modest assets are eligible for assistance with Part D plan premiums and cost sharing. Nearly 14 million Part D enrollees are receiving LIS, including 9 million (66%) in MA-PDs and 4.7 million (34%) in PDPs.

In 2025, a smaller number of PDPs will be premium-free benchmark plans – that is, PDPs available for no monthly premium to Medicare Part D enrollees receiving the Low-Income Subsidy (LIS) – than in any year since Part D started, with 90 premium-free benchmark plans, or 19% of all PDPs in 2025 (Figure 11). The number of benchmark plans available in 2025 will vary by region, from one to five (Appendix Table 2).

In 2025, 90 Part D Stand-Alone Drug Plans Will Be Available Without a Premium to Enrollees Receiving the Low-Income Subsidy (“Benchmark” Plans); the Average Beneficiary Will Have 2 Benchmark PDP Options in 2025, 1 Less Than in 2024

PDPs offering basic benefits qualify to be benchmark plans if they have premiums below the benchmark amount in a region. The benchmark is calculated as a weighted average of the beneficiary premiums for basic drug coverage offered by both PDPs and MA-PDs in a region (calculated before taking MA rebates into account). (MA-PD premiums are included in this calculation even though MA-PDs do not qualify as benchmark plans.)

On average, LIS beneficiaries will have 2 benchmark plans available to them out of the average 14 PDPs available overall for 2025 – one fewer than the average number of benchmark plan options in 2024. All LIS enrollees can select any plan offered in their area, but if they enroll in a non-benchmark plan, they must pay some portion of their chosen plan’s monthly premium.

One quarter (26%) of all LIS PDP enrollees who are eligible for premium-free Part D coverage (1.1 million LIS enrollees) will pay Part D premiums averaging $30 per month in 2025 unless they switch or are reassigned by CMS to premium-free plans during the open enrollment period.

Juliette Cubanski is with KFF. Anthony Damico is an independent contractor.

Methods

This analysis focuses on the Medicare Part D drug plan marketplace in 2025 and trends over time, including both stand-alone prescription drug plans (PDPs) and Medicare Advantage drug plans (MA-PDs). The analysis focuses on the 17.6 million enrollees in PDPs and 18.1 million enrollees in individual MA-PDs (as of June 2024). The analysis excludes enrollees in non-individual MA-PDs (including Special Needs Plans) and enrollees in employer-group only PDPs and MA-PDs plans for whom plan premium and benefits data are unavailable.

Data on Part D plan availability, enrollment, and premiums were collected from a set of data files released by the Centers for Medicare & Medicaid Services (CMS):

  • Medicare plan landscape file, released each fall prior to the annual open enrollment period
  • Part D plan crosswalk files, released each fall
  • Part D contract/plan/state/county level enrollment files, released monthly
  • Part D Low-Income Subsidy enrollment files, released each spring
  • Medicare plan benefit package files, released periodically each year

In this analysis, premium and deductible estimates are weighted by June 2024 enrollment unless otherwise noted. Percentage and dollar differences are calculated based on non-rounded estimates and in some cases differ from percentages and dollar differences calculated based on rounded estimates presented in the text. 

Appendix

Medicare Part D National Stand-alone Prescription Drug Plans in 2025

Contraceptive Experiences, Coverage, and Preferences: Findings from the 2024 KFF Women’s Health Survey

Published: Nov 22, 2024

Issue Brief

Contraceptive care is an important component of overall health care for many people, and most women use contraception at some point in their lifetime. As abortion access has become more limited post-Dobbs there has been an increased attention on the need for and future of contraceptive access.

This brief provides a close examination of women’s experiences with contraception, insurance coverage, contraceptive preferences, and interactions with the health care system. We also explore the influence and reach of contraceptive information on social media. The KFF Women’s Health Survey, a nationally representative survey of women in the United States was fielded in May and June 2024 and includes a sample of 3,901 women of reproductive age (18-49). Women include individuals who identify as such, as well as those with other gender identities that preferred to complete the female set of sexual and reproductive health questions in the survey. See the methodology section for detailed definitions, sampling design, and margins of sampling error.

Key Takeaways

Use of Contraceptives

  • Eight in ten (82%) women of reproductive age say they used some form of contraception in the past 12 months.
  • Almost half (48%) of contraceptive users used more than one contraceptive method in the past 12 months, with male condoms and oral contraceptives representing the most commonly used methods.
  • The majority of women use contraception to prevent pregnancy (85%), but one in seven (14%) use it solely for another reason, such as managing a medical condition or preventing a sexually transmitted infection.
  • Nearly seven in ten (69%) women of reproductive age say it is very important for them to avoid becoming pregnant in the next month.

Contraception in Social Media

  • Nearly four in ten (39%) of reproductive age women have heard something on social media about birth control in the past 12 months, including half (49%) of women ages 18 to 25.
  • Almost four in ten (38%) women of reproductive age who have heard something on social media about birth control (19% of all reproductive age women), have talked to someone in their life about what they saw or heard.
  • One in seven women ages 18 to 25 (14%) say they made a change or thought about making a change to their birth control method because of something they saw or heard on social media.

Contraceptive Coverage

  • While insurance paid the full cost of contraception for the majority (69%) of contraceptive users with private insurance, a quarter (24%) report that they paid some or all of the costs out-of-pocket because their plan did not cover the full cost or did not cover birth control at all.
  • Despite emergency contraceptive pills being covered by insurance at no cost (with a prescription), few (17%) of those who have used emergency contraception in the past 12 months say they got it with a prescription.
  • The costs of contraceptives are still a barrier for some women; one in five (20%) uninsured women had to stop using a birth control method because they couldn’t afford it.

Access and Quality of Care

  • Three quarters (78%) of women received their most recent contraceptive care at a doctor’s office, but clinics play an important role for women with low incomes (21%) and women without insurance (28%).
  • One in five (20%) reproductive age women say they would not know where to get emergency contraception if they wanted or needed it despite its availability as an over-the-counter method.
  • Four in ten (42%) contraceptive users rated their contraceptive counseling as excellent across all measures of care.
  • Nearly a quarter (23%) of contraceptive users say if they could use any type of birth control method available, they would use a different method than the one they are currently using. Of this group, nearly one in four (23%) say they prefer their partner get a vasectomy.

Use of Contraceptives

The majority of reproductive age women use contraception. Eight in ten (82%) women ages 18 to 49 say they used some form of contraception in the past 12 months (Figure 1). Methods used include a sterilization procedure that they or their partner have had, pills, injectables, patch, ring, intrauterine device, contraceptive implant, male condoms, emergency contraception, fertility awareness-based methods, and withdrawal. Nearly one in ten (9%) reproductive age women say they are either pregnant or trying to conceive, 4% say they are unable to conceive, and 6% did not use contraception in the past 12 months.

Eight in Ten Reproductive Age Women Used Contraception in the Past Year

Nearly half (48%) of contraceptive users report using more than one kind of contraceptive method in the past 12 months, and the methods used shift as they age (Table 1). Among all reproductive age women, three in ten (31%) rely on a permanent method, such as female sterilization (21%) or a partner’s vasectomy (10%). The share of women who report relying on permanent methods increases to over half (52%) of women ages 36 to 49. Almost a quarter (24%) of women used a long-acting reversible method in the past year, such as an intrauterine device (IUD) or contraceptive implant, with highest shares of women ages 26 to 35 using IUDs and larger shares of women ages 18 to 25 using contraceptive implants. Four in ten women used a shorter acting hormonal prescribed method in the past 12 months, with oral contraceptive pills accounting for the largest share among all age groups.

Sizable shares of women use contraceptive methods that they can easily start and stop on their own without a prescription, with condoms and withdrawal representing two of the most widely used methods among women of all age groups. Almost one in four (22%) younger women ages 18 to 25 report using fertility awareness-based methods, which could reflect a growing interest in non-hormonal methods, discussed extensively on social media outlets targeting young people. One in four (24%) younger women also report using emergency contraception in the past 12 months compared to just 4% of women ages 36 to 49.

The Types of Contraception That Women Use Shift Over the Course of Their Reproductive Years

Women also use contraception for reasons other than preventing pregnancy. Two-thirds (65%) of women say they use contraception only to prevent pregnancy (Figure 2), one in seven (14%) use contraception solely for a reason outside of preventing pregnancy, such as to manage a medical condition or prevent a sexually transmitted infection in the case of condoms, and one in five (20%) use it to prevent pregnancy and another reason. Among women who identify as a disabled person or a person with a disability, one in four (26%) use contraception solely for a reason outside of preventing pregnancy, such as managing a medical condition, making access to contraception particularly important for this population (data not shown in figure).

Individuals Use Different Contraceptive Methods Depending on Their Reasons for Using Contraception

The type of method selected may depend on their reason for use. For those who only used an IUD in the past 12 months, eight in ten (81%) report using contraception for the sole reason of preventing pregnancy. A much larger share of contraceptive pill users, compared to users of other forms of contraception, report using contraception for only reasons outside of pregnancy prevention, as many hormonal methods are used to manage menstrual irregularities, treat acne, alleviate menstrual migraines, and manage symptoms of conditions like polycystic ovary syndrome (PCOS). Nearly one in five condom only users use contraception to prevent both prevent pregnancy and some other reason, likely to prevent STIs.

Nearly seven in ten (69%) women of reproductive age say that avoiding pregnancy in the next month is very important to them (Figure 3). Pregnancy prevention is very important to nearly three in four (74%) women ages 18 to 25. While smaller shares of contraceptive non-users say it is very important for them to avoid pregnancy compared to contraceptive users (31% vs. 73%), four in ten (44%) still say it is important for them to avoid becoming pregnant in the next month. There are not significant differences between women of certain demographics including race/ethnicity, income, disability, and abortion status in state of residence.

Four in Ten Contraceptive Non-Users Say It is Important for Them to Avoid Pregnancy

There are many reasons why someone may choose not to use contraception. Among sexually active women capable of becoming pregnant who do not use contraception, four in ten (40%) say they did not want to use birth control, another nearly four in ten (38%) say they didn’t really mind if they got pregnant, and almost one in four (22%) say they did not think they could get pregnant (even though they or their partner were not sterilized etc.) (Table 2). One in five (19%) do not use birth control because they were worried about or disliked the side effects of birth control. Another 7% say they did not expect to have sex, 6% couldn’t find a method they were satisfied with, and 4% do not use contraception for religious reasons.

There Are Many Reasons Why Women Choose Not to Use Birth Control

Contraception in Social Media

Contraceptive information is pervasive on social media. Nearly four in ten (39%) women of reproductive age say they have seen or heard something on social media about birth control in the past 12 months (Figure 4). This includes half of women ages 18 to 25 (49%) and four in 10 women ages 26 to 35 (41%) who report seeing or hearing information about birth control via social media. Exposure to social media that talks about birth control was higher among women who use contraception than those who do not.

Four in Ten Reproductive Age Women Say They Heard or Saw Something on Social Media About Birth Control

Almost four in ten (38%) reproductive age women who have seen or heard something on social media about contraception report they have talked to at least one person in their lives about the content (Figure 5). Among those who have seen or heard anything on social media about birth control (39% of women ages 18 to 49), a quarter (25%) say they talked to their family or friends about the birth control content. One in five (19%) say they talked to their partner or spouse, and one in ten (10%) say they talked to their doctor or healthcare provider. Most women who have seen or heard anything on social media about birth control did not talk to anyone about the content (62%).

Four in Ten Reproductive Age Women Who Have Seen or Heard Birth Control Information on Social Media Have Talked to Someone About The Content

While social media can be a tool to spread reliable and trustworthy health-related information, it can be and has been used to spread mis- and dis-information. A growing number of social media influencers have tapped into their social networks to share their negative experiences with certain birth control methods such as oral contraceptive pills or intrauterine devices (IUDs), often making false claims about the safety and efficacy of hormonal contraception. While previous KFF research found that only a small share of women use social media as their main source of information about birth control side effects, there have been anecdotal reports about women stopping contraception use after consuming misleading or factually incorrect social media.

Few women say they made a change or thought about making a change to their method of birth control because of something they saw on social media, but younger women seem to be more receptive to change based on social media messaging (Figure 6). Compared to older reproductive age women (ages 36 to 49; 3%), larger shares of women ages 18 to 25 (14%) and 26 to 35 (8%) made a change or thought about making a change to their birth control method based on something they saw or heard on social media. Across all age groups, most reproductive age women say they did not change their birth control method because of something they saw or heard on social media.

Higher Shares of Younger Women Made, or Considered Making, a Change to Their Birth Control Method Because of Something They Saw or Heard on Social Media

Contraceptive Coverage

The ACA requires that plans cover out-of-pocket contraception costs for most individuals with private insurance, yet a sizable share of women are still paying some of the cost. A quarter (24%) of contraceptive users with private insurance say they paid out-of-pocket some or all of the costs of their contraception because their plan did not cover the full cost or did not cover birth control at all (Figure 7).

Nearly One in Four Privately Insured Contraceptive Users Paid Some or All of the Costs of Their Contraception

The share of individuals paying out-of-pocket for contraception dropped dramatically shortly after the ACA’s contraceptive coverage requirements were adopted, however, there have been several reports about people continuing to pay out-of-pocket. Reasons could be enrollment in a grandfathered health plan that does not have to adhere to the contraceptive coverage requirements, working for an employer that has religious or moral objections to covering contraception, or going to an out-of-network provider. Some face out-of-pocket costs for using a brand name method that has a generic alternative. A higher share of privately insured women who received their contraceptive care at a location other than a doctor’s office say they paid out-of-pocket for their care (40% vs. 20%) (Figure 8).

Higher Shares of Privately Insured Women Who Received Their Contraceptive Care at a Location Other Than a Doctor's Office Paid Out-of Pocket

This could include individuals using telecontraception apps, which do not always accept insurance or charge a membership or subscriber fee. It could also include individuals purchasing emergency contraception without a prescription, which health plans have not been required to cover. New proposed regulations issued by the Biden administration, if finalized would require health plans to cover all OTC methods, including Opill, spermicide, and male condoms when obtained through an in-network pharmacy. While a type of emergency contraceptive pills (Plan B and its generic alternatives) is available over the counter, most insurers require a prescription before they will cover the costs. Among those who used EC pills in the past 12 months (12% of reproductive age women), less than one in five (17%) got it with a prescription. The majority (83%) of reproductive age women who used EC pills in the past years obtained over-the-counter emergency contraception without a prescription and most likely pay the full cost, which can be up to $50.

Overall, 5% of reproductive age women and 20% of those who are uninsured, say they have had to stop using a contraceptive method because they could not afford it (Figure 9). Discontinuation of a method due to costs was reported by nearly one in ten (9%) women with low incomes and one in five (20%) women who are uninsured. Title X clinics and federally qualified health centers are designed to provide free or low-cost contraception to people with low incomes and those without insurance. However, people may not be aware of these free or low-cost services, or they may reside in a community that does not have a clinic site nearby.

One in Five Uninsured Women Have Had to Stop Using A Birth Control Method Because They Couldn’t Afford It

Access to and Quality of Contraceptive Care

There has been an increased attention to the importance of contraceptive access, especially post-Dobbs where access to abortion is now banned or severely restricted in many states. Nationally, nearly one in five women of reproductive age say it is “difficult” to access contraceptive care in their state and this rises to nearly one in four (23%) among those who are uninsured women (Figure 10). Larger shares of younger women and women with lower incomes also describe contraceptive care as difficult to access compared to those who are older or with higher incomes.

Nearly One in Five Women of Reproductive Age Say It Is Difficult to Access Contraceptive Care in Their State

The avenues through which people can access contraception has been expanding, but most (77%) women still obtain their contraceptive care through a doctor’s office (Figure 11). Clinics also play an important role for many, with higher shares of Black (16%) and Hispanic (19%) women compared to White women (10%) receiving their contraceptive care at a clinic-based setting, such as a community health center, Planned Parenthood or other family planning clinic, or a school-based or walk-in clinic. Among contraceptive users, one in five (21%) women with low incomes and those who have Medicaid coverage (20%) obtain their contraceptive care at a clinic and this rises to 28% of women who are uninsured. Nearly one in ten (9%) women using contraception access their birth control care outside of a clinic setting, such as online through a website or app or through a pharmacy, drug store, or some other place.

Among Women Who Used Contraception in the Past 12 Months, Most Got Their Birth Control Care at a Doctor’s Office, But Clinics Play a Larger Role for Women with Low Incomes and Those Without Insurance

Over-the-counter (OTC) options from pharmacies, drug stores, and online websites can be appealing avenue for contraceptive access especially for people without a clinician’s prescription for hormonal methods. Until recently, over-the-counter options for contraceptives intended for regular use were limited to non-hormonal methods such as condoms and spermicides. After FDA-approval in 2023, the first ever daily oral contraceptive pill became available in stores and online in early 2024, making Opill the most effective form of contraception available over the counter. However, awareness of the new Opill is generally low, with a quarter (26%) of women 18 to 49 saying they have heard of the new daily oral contraceptive pill. Among those who have heard of it, just 4% have purchased it and an even smaller share (3%) have used or taken Opill since it became available in stores and online earlier in 2024.

Emergency contraceptive pills have been available OTC since 2006, as well as through many doctors’ offices and clinics, however, one in five (19%) reproductive age women would not know where to get emergency contraception pills if they wanted or needed them in the near future (Figure 12). Higher shares of women with lower incomes compared to higher incomes (25% vs. 16%) and women living in rural areas compared to those living in urban or suburban areas (30% vs. 17%) say they would not know where to get emergency contraception pills if they wanted or needed them in near future. A higher share of women living in states where abortion is banned say they would not know where they could go to get emergency contraception compared to women living in states where abortion is generally available (23% vs. 17%).

One in Five Reproductive Age Women Do Not Know Where to Get Emergency Contraception Pills if They Wanted or Needed It

An important part of a contraceptive care visit is contraceptive counseling that is focused on a patient’s own needs, values, and preferences with regard to their contraceptive decision-making., referred to as person-centered contraceptive counseling. The quality of this counseling can be measured using a four-item survey that uses a 5-point scale and asks patients to rate the extent to which their provider respected them as a person, let them say what mattered to them about their birth control method, took their preferences about their birth control seriously, and gave them enough information to make the best decision about their birth control method. Using this measure, four in ten (42%) contraceptive users report receiving excellent person-centered contraceptive counseling across all dimensions (Figure 13). Smaller shares of women with low incomes compared to women with higher incomes rate their contraceptive counseling as excellent across all four items (39% vs. 49%). Only a third (33%) of women without insurance rate their contraceptive counseling as excellent compared to 45% of women with private insurance. Smaller shares of women receiving their contraceptive care at a clinic rate their contraceptive counseling as excellent compared to those getting care in a doctor’s office (38% vs. 49%) which disproportionately reflects the experiences of women who are low income or uninsured. Just over 10% of contraceptive users rated their provider as fair or poor on at least one of the four items of patient-centered contraceptive counseling. Higher shares of women with low incomes (16%) and uninsured women (21%), as well as one in five women with disabilities say they received fair or poor contraceptive counseling on at least one item.

Less Than Half of Women Say They Received Excellent Contraceptive Care Across a 4-Item Measure of Person-Centered Contraceptive Counseling

Part of person-centered contraceptive counseling is letting patients say what matters to them about their birth control method and taking their preferences about their birth control seriously. However, nearly a quarter (23%) of contraceptive users say if they could use any type of birth control method available, they would use a different method than the method they are currently using (Figure 14). This is similar across age groups and race/ethnicity. Larger shares of women with low incomes say that if they could use any type of birth control method available, they would use a different method than they are currently using compared to women with higher incomes (29% vs. 19%). Over three in ten (31%) women with Medicaid coverage say they would use a different method than the one they are currently using if they could use any method compared to one in five (20%) women with private insurance.

Nearly a Quarter of Women Aren’t Using Their Preferred Contraceptive

Among women who aren’t using their preferred method, nearly one in four (23%) say they would use a partner’s vasectomy if they could use any type of birth control, regardless of cost or other possible barriers (Figure 15). Contraceptive use is commonly the responsibility of women due to the extremely limited contraceptive methods available to men. For women or those who can get pregnant, avoiding pregnancy involves undergoing a procedure, or remembering to take a pill every day, or tracking one’s cycle and for many, living with side effects. Having the ability to rely on a partner’s vasectomy can take some of the burden off those who are capable of becoming pregnant. Nearly one in five (18%) women who aren’t using their preferred method (23% of contraceptive users) say they would choose to be sterilized, while 21% would use a long-acting reversible method, such as an IUD (14%) or implant (7%). These long-acting methods can be appealing because they can be used for three to ten years and don’t rely on regularly remembering to take a daily pill or get a periodic injection in the case of short acting hormonal methods. Among those who are not using their preferred method one in five (19%) women would use a short acting hormonal method, such as pills (8%), injectables (5%), patch (2%), ring (2%), and emergency contraception (2%). While one in ten (12%) would choose a non-hormonal method, including male condoms (6%), withdrawal (3%), and fertility awareness-based methods (3%).

Four in Ten Contraceptive Users Who Are Not Using Their Preferred Contraception Would Use a Permanent Method if Cost and Other Barriers Were Not an Issue

Concern about side effects or previously experienced side effects are leading reasons women are not using their preferred method of birth control, with a quarter (25%) of women who are not using their preferred method citing this as the reason (Figure 16). Over four in ten (44%) Black women who are not using their preferred method say concern about side effects is the primary reason compared to 18% of White women. Some of the other top reasons women are not using their preferred method include inability to afford their preferred method (15%), their provider recommending a different method (10%), or their partner not wanting them to use their preferred method (8%).

One in Four Contraceptive Users Are Not Using Their Preferred Method Because of Concern About Side Effects

The primary reasons for not using their preferred method of birth control depends on the method they prefer to be using. For those who prefer to be using a permanent method, such as female sterilization or a partner’s vasectomy, the top reasons they are not using these methods is affordability (26%) and their partner does not want them to use this method (16%) (Figure 17). Among those who prefer to be using a long-acting contraceptive or hormonal method, four in ten (40%) cite concern about side effects, 17% say their provider recommended a different method, 11% say medical conditions make them ineligible, and 10% can’t afford their preferred method.

Reasons for Not Using Preferred Method by Method Preference

Methodology

The 2024 KFF Women’s Health Survey was designed and analyzed by women’s health researchers at KFF. The survey was conducted from May 13 – June 18, 2024, online and by telephone among a nationally representative sample of 6,246 adults ages 18 to 64, including 3,901 women ages 18 to 49. Women include anyone who selected woman as their gender (n = 3,867) or who said they were non-binary (n = 26), transgender (n = 4), or another gender (n = 3) and chose to answer the female set of questions with regard to sexual and reproductive health. Sampling, data collection, weighting, tabulation, and IRB approval by the University of Southern Maine’s Collaborative Institutional Review Board were managed by SSRS of Glenn Mills, Pennsylvania in collaboration with women’s health researchers at KFF.

Throughout the reports of findings, we refer to “women”. This includes respondents who said their gender is “woman,” plus those who said their gender is “transgender,” or “non-binary,” or another gender and that they prefer to answer the survey’s set of questions for females. We followed this approach to try to include as many people as possible but recognize that some people who need and seek abortion and other reproductive health care services may not be represented in the findings or identify as women.

The sample was drawn from two nationally representative probability-based panels: the SSRS Opinion Panel and the Ipsos KnowledgePanel. The SSRS Opinion Panel is a nationally representative probability-based panel where panel members are recruited randomly in one of two ways: (a) Through invitations mailed to respondents randomly sampled from an Address-Based Sample (ABS) provided by Marketing Systems Groups (MSG) through the U.S. Postal Service’s Computerized Delivery Sequence (CDS); (b) from a dual-frame random digit dial (RDD) sample provided by MSG. For the online panel component, invitations were sent to panel members by email followed by up to five reminder emails. 5,276 panel members completed the survey online and panel members who do not use the internet were reached by phone (175). Another 970 respondents were reached online through the Ipsos Knowledge Panel to help reach adequate sample sizes among subgroups of interest, specifically women ages 18 to 49. This panel is recruited using ABS, based on a stratified sample from the CDS. The questionnaire was translated into Spanish, so respondents were able to complete the survey in English or Spanish.

In this survey, adults with disabilities are those who self-identify as such. This population includes those who selected “yes,” when asked, “Do you identify as a disabled person or a person with a disability?” A follow-up question was then asked to determine the nature of the disability. The SSRS Opinion Panel and Ipsos KnowledgePanel are representative of U.S. adults with disabilities who live outside of institutional settings and are able to participate in the panel.

The sample was weighted by splitting the sample into three groups: [1] Women 18-49, [2] Women 50-64, and [3] Men 18-64 and each group was separately weighted to match known population parameters (see table below for weighting variables and sources). Weights within the three groups were then trimmed at the 4th and 96th percentiles, to ensure that individual respondents do not have too much influence on survey-derived estimates. After the weights were trimmed, the samples were combined, and the weights adjusted, so that the groups were represented in their proper proportions for a final combined, gender by age-adjusted weight.

DimensionsSource
AgeCPS 2023 ASEC
Education
Age by Education
Age by Gender
Census Region
Race/Ethnicity by Nativity
Home Tenure
Civic EngagementCPS 2021 Volunteering & Civic Engagement Supplement
Internet FrequencySSRS Opinion Panel Database 2024
Population DensityACS 206-2020 5-year data
NEP RegionsCensus Planning Database 2022
Voter RegistrationCPS 2022 Voting & Registration Supplement

The margin of sampling error for the sample of reproductive age women, is plus or minus 2 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher.  Sampling error is only one of many potential sources of error and there may be other unmeasured error in this survey.

 GroupN (unweighted)M.O.S.E.
National Women Ages 18-493901± 2 percentage points
White, non-Hispanic1856± 3 percentage points
Black, non-Hispanic603± 5 percentage points
Hispanic963± 4 percentage points
Asian286± 7 percentage points
<200% FPL1667± 3 percentage points
200%+ FPL1974± 3 percentage points
Pro-life1074± 4 percentage points
Pro-choice2815± 2 percentage points
Republican/Republican-leaning1076± 4 percentage points
Democrat/Democrat-leaning1803± 3 percentage points
Urban/Suburban3379± 2 percentage points
Rural473± 6 percentage points
Lives in a state where abortion is banned857± 4 percentage points
Lives in a state where abortion has gestational limits 6-12 weeks819± 5 percentage points
Lives in a state where abortion has gestational limits 15-22 weeks594± 6 percentage points
Lives in a state where gestational limited are 24+ weeks or none1631± 3 percentage points

Medicaid Work Requirements: Current Waiver and Legislative Activity

Published: Nov 21, 2024

With Donald Trump returning to the presidency and Republican control of the Senate and House, work requirements are likely to be back on the agenda—through federal legislation or Medicaid waivers. Although past legislative attempts to incorporate work requirements into Medicaid statute failed, plans from Republican and conservative groups continue to support federal legislation to allow or require work requirements in Medicaid. A Congressional Budget Office analysis of a recent work requirement proposal shows that the policy would reduce federal spending due to reductions in enrollment and increase the number of people without health insurance but would not increase employment. Several states have also continued to pursue work requirement Section 1115 waivers, often tied to Medicaid expansion efforts. South Dakota just passed a ballot measure allowing the state to pursue a work requirement for its (newly implemented) Medicaid expansion population. The makeup of state legislatures and governor control are important, as Medicaid policy changes may require state legislative action or may be authorized at the direction of the governor. While a focus on work requirements remains, data show most Medicaid adults are working or face barriers to work. Among adults with Medicaid who are under age 65 and do not have Medicare or SSI, 91% are working, or are not working due to an illness, caregiving responsibilities, or school attendance.

This issue brief briefly highlights the history of Medicaid work requirements, describes recent state activity to advance work requirement policies, and recaps the landscape of work requirement approvals and pending requests at the end of President Trump’s first term.

Work Requirement Waiver History

For the first time in the history of the Medicaid program, the Trump administration encouraged and approved Section 1115 waivers that conditioned Medicaid coverage on meeting work and reporting requirements, approving 13 state work requirement waivers. Only Arkansas implemented such requirements with consequences for noncompliance, which resulted in over 18,000 people losing coverage before a federal court deemed the work requirement unlawful. While the vast majority of enrollees were working or qualified for exemptions, barriers with meeting reporting requirements led to people getting dropped from the program. Other states that began implementation did not disenroll those who did not comply and instead paused implementation due to litigation and/or the COVID-19 pandemic.

The Biden administration withdrew Medicaid work requirement waivers in all states that had approvals, concluding that these provisions do not promote the objectives of the Medicaid program, such as promoting coverage for low-income people. Although CMS withdrew work and premium requirements in Georgia’s waiver, these provisions remain in place after a federal judge overturned the CMS withdrawal. While work requirements waivers were the subject of litigation during the Trump and Biden administrations, the Supreme Court never ruled on the issue leaving it open for future administrations; however, any future waivers with work requirements would likely face legal challenges.

Work Requirement Waiver Activity

Work Requirements Currently Implemented

Georgia’s “Pathways” waiver expands eligibility to 100% of the federal poverty level (FPL) ($25,820 for a family of three, $15,060 for an individual in 2024) for parents and childless adults, with initial and continued enrollment conditioned on meeting work requirements. This is not a full Medicaid expansion under the ACA and does not qualify for enhanced federal matching funds. The waiver was implemented in July 2023. Over a year into the demonstration, enrollment remains low—as of October 2024, the state had only enrolled about 5,100 adults, a fraction of the estimated 175,000 adults in the Medicaid “coverage gap” in Georgia (individuals who did not qualify previously for Medicaid with incomes below poverty, making them ineligible for premium subsidies in the ACA Marketplace). As of the end of CY 2023, over 90% of the $26.6 million spent on the Pathways program was spent on administrative and consulting costs (largely through contracts with Deloitte consulting), as opposed to spending on health care costs. The demonstration is set to expire on September 30, 2025.

Recent State Legislative Consideration of Work Requirements Tied to Medicaid Expansion

A few states have introduced or passed legislation tying the implementation or adoption of the ACA Medicaid expansion to work requirements (also see Appendix table for additional state-by-state details).

  • South Dakota adopted the Medicaid expansion through a ballot initiative in 2022; coverage began on July 1, 2023. In early 2024, the state legislature passed a resolution adding a 2024 ballot measure that asked voters for approval to allow the state to impose work requirements on certain adults eligible for Medicaid expansion coverage. The measure passed (with 56% of voters in favor). The state must still seek CMS approval to implement work requirements.
  • The March 2023 legislation that adopted the ACA Medicaid expansion in North Carolina includes a provision to seek approval for work requirements if there is any indication that CMS would approve such a waiver. Medicaid expansion coverage in North Carolina began on December 1, 2023. In less than a year, nearly 580,000 expansion adults have enrolled.
  • After a failed effort in 2024, the Mississippi legislature may revisit whether to adopt and implement the ACA Medicaid expansion with a work requirement during the 2025 legislative session (which starts in January).
  • In January 2024, bills to introduce the Kansas governor’s proposal to expand Medicaid, which for the first time included a work requirement, were referred to the legislature. While the legislature held a hearing on the governor’s proposed legislation, both the House and Senate bills died in committee.
  • In January 2024, legislators in Idaho introduced a bill that would have repealed the state’s Medicaid expansion if work requirements and other conditions were not met, but it failed to advance after a House committee voted to hold the bill.

Work Requirement Requests Submitted During Biden Administration

In June 2023, Arkansas requested federal approval to condition Medicaid expansion QHP coverage (expansion adults in Arkansas are enrolled in ACA Marketplace plans) on meeting a work requirement. Individuals that do not comply with workforce activity requirements, including following individualized plans created by assigned “care coordinators,” would be transitioned from Marketplace coverage to fee-for service coverage (where individuals may face different provider networks). This waiver remains pending at CMS.

Recap: Work Requirement Approvals & Pending Requests at End of President Trump’s First Term

CMS under the Trump administration approved waivers with work requirements in 13 states. Across states, work requirement waivers were generally similar in conditioning Medicaid coverage for certain adults on reported employment or other qualifying activities, with some variation in technical details. For example, waivers varied by population (with most applying to expansion adults), exemptions (e.g., for older age or medical frailty), qualifying activities, number of required hours, reporting methods/requirements, and consequences for noncompliance. Nine additional state work requirement requests were pending (i.e., had not been approved) at the end of President Trump’s first term. For state-level detail on the approved waivers as well as additional requests that were not approved by the end of the Trump administration, see KFF’s 1115 waiver tracker.

Note that work requirement waivers submitted to the Trump administration date back several years. Changes in the makeup of state legislatures and governors will impact state interest in pursuing these policies. Some states require state legislative action before state plan amendments or Section 1115 waiver requests can be submitted by the state Medicaid agency to CMS for federal approval and others do not.

Medicaid Work Requirement Waiver Requests &amp;amp; State Activity

Appendix

State Medicaid Work Requirement Waiver and Legislative Activity

Expected Immigration Policies Under a Second Trump Administration and Their Health and Economic Implications

Published: Nov 21, 2024

Note: This content was updated on July 1, 2025 to reflect new regulations eliminating ACA Marketplace eligibility for DACA recipients.

Introduction

Immigration was a central campaign issue during the 2024 Presidential election with President-elect Trump vowing to take strict action to restrict both lawful and unlawful immigration into the U.S. Such actions would have stark impacts on the health and well-being of immigrant families as well as major economic consequences for the nation. As of 2023, there were 47.1 million immigrants residing in the U.S., and one in four children had an immigrant parent.1  Increased immigration boosts federal revenues and lowers the national deficit through immigrants’ participation in the country’s economy, workforce, and through billions of dollars in tax contributions.

This issue brief discusses key changes to immigration policies that may take place under the second Trump administration based on his previous record and campaign statements, and their implications. President-elect Trump has indicated plans to restrict and eliminate legal immigration pathways, including humanitarian protections, and deport millions of immigrants, which would likely lead to separation of families, negative mental and physical impacts for immigrant families, and negative consequences on the nation’s workforce and economy.

Expected Policy Changes

Elimination of Deferred Action for Childhood Arrivals (DACA) Program

The future of the DACA program remains uncertain due to pending litigation, and President-elect Trump tried to eliminate DACA during his first term; over half a million DACA recipients would lose protected status if it is eliminated. DACA was originally established via executive action in June 2012 to protect certain undocumented immigrants who were brought to the U.S. as children from removal proceedings and receive authorization to work for renewable two-year periods. During his prior term, President-elect Trump sought to end DACA but was blocked by the Supreme Court in 2020. The Biden administration issued regulations in 2022 to preserve DACA protections. In September 2023, a district court in Texas ruled the DACA program unlawful, preventing the Biden administration from implementing the new regulations while the case awaits a decision in the Fifth Circuit Court of Appeals. Under pending court rulings, while the Department of Homeland Security (DHS) is accepting first-time DACA requests, it is unable to process them. DHS is continuing to process DACA renewal requests and related requests for employment authorization. After the attempt to end DACA failed in 2020, the Trump administration said that it would try again to eliminate DACA protections, and, if the pending court ruling finds the program unlawful, the administration is unlikely to appeal the decision. However, in a recent interview, President-elect Trump indicated that he would work on addressing the status of “Dreamers” and indicated a willingness to work with Democrats on the issue, although the details of this proposed plan remain unclear. There are over half a million active DACA recipients, a majority of whom are working and many of whom have U.S.-born children, who could be at risk of deportation if the program is eliminated.

A recent health coverage expansion to DACA recipients has also been eliminated by the Trump administration. In May 2024, the Biden administration published regulations to extend eligibility for Affordable Care Act (ACA) Marketplace coverage with premium and cost-sharing subsidies to DACA recipients, who were previously ineligible for federally funded health coverage options. The regulation became effective November 1, 2024, allowing for enrollment during the 2025 Open Enrollment Period. In August 2024, a group of 19 states filed a lawsuit against the federal government alleging that the ACA Marketplace coverage expansion to DACA recipients violates the Administrative Procedure Act. On December 9, 2024, a federal court in North Dakota granted the plaintiffs’ motion by blocking the ACA coverage expansion from being implemented in the 19 states that filed the lawsuit (AL, AR, FL, IA, ID, IN, KS, KY, MS, MT, ND, NE, NH, OH, SC, SD, TN, TX, VA). On December 16, 2024, the U.S. Court of Appeals for the Eighth Circuit issued a temporary stay of the federal court’s injunction, temporarily allowing DACA recipients in all states to sign up for ACA Marketplace coverage. However, on December 23, 2024, the U.S. Court of Appeals for the Eighth Circuit vacated the administrative stay, thereby making DACA recipients in the aforementioned 19 states ineligible for ACA Marketplace coverage again. On June 25, 2025, the Centers for Medicare and Medicaid Services (CMS) finalized a rule that will exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, making them ineligible to purchase coverage through the ACA Marketplaces beginning 60 days after the final rule’s publication.  Elimination of the coverage expansion could leave thousands of DACA recipients without an affordable coverage option.

Changes to Public Charge Policy

President-elect Trump could reinstate changes to public charge policy that he made during his first term, which led to increased fears and misinformation among immigrant families about accessing programs and services, including health coverage. Under longstanding immigration policy, federal officials can deny entry to the U.S. or adjustment to lawful permanent resident (LPR) status (i.e., a “green card”) to someone they determine to be a public charge. During his prior term, President-elect Trump issued regulations in 2019 that broadened the scope of programs that the federal government would consider in public charge determinations to newly include the use of non-cash assistance programs like Medicaid and the Children’s Health Insurance Program (CHIP). Research suggests that these changes increased fears among immigrant families about participating in programs and seeking services, including health coverage and care. Prior KFF analysis estimated that the 2019 changes to public charge policy could have led to decreased coverage for between 2 to 4.7 million Medicaid or CHIP enrollees who were noncitizens or citizens living in a mixed immigration status family. The Biden administration rescinded these changes. However, as of 2023, a majority of immigrant adults said in a KFF survey that they were “not sure” about public charge rules, and roughly one in ten (8%), rising to about one in four (27%) of likely undocumented immigrant adults, said they have avoided applying for assistance with food, housing, or health care in the past year due to immigration-related fears (Figure 1). As of November 2024, President-elect Trump has not indicated whether his administration plans to reinstate his first term changes to public charge policy.

About One in Four Undocumented Immigrant Adults Says They Have Avoided Applying for Assistance with Food, Housing, or Health Care Due to Immigration-Related Fears

Expanded Interior Enforcement Actions

President-elect Trump has indicated that his administration plans to carry out mass detentions and deportations of millions of immigrants, including long-term residents, which could lead to family separations and negative mental and physical health consequences. President-elect Trump has stated that he will declare a national emergency and use the U.S. military to carry out mass deportations of tens of millions of undocumented immigrants residing in the U.S., many of whom have been living and working in the country for decades. Such a policy could lead to family separations as well as mass detentions, which can have negative implications for the mental health and well-being of immigrant families and also put their physical health at risk. Tom Homan, who was the director of U.S. Immigration and Customs Enforcement (ICE) during the first Trump administration and has been selected as the incoming administration’s “border czar”, has said that it is possible to carry out mass deportations without separating families by deporting an entire family unit together, even if the child may be a U.S. citizen. As was the case during his first term, he may also carry out workplace raids as part of mass deportation efforts. Research shows that such raids can lead to family separations, poor physical and mental health outcomes for immigrant families, negative birth and educational outcomes for the children of immigrants, and financial hardship due to employment losses. Prior KFF research shows that restrictive immigration policies implemented during the first Trump administration, including detention and deportation led to increased fears and stress among immigrant families and negatively impacted the health and well-being of children of immigrants, most of whom are U.S. citizens.

Mass deportations could also negatively impact the U.S. workforce and economy, where immigrants make significant contributions. Immigrants have similar rates of employment as their U.S.-born counterparts and play outsized roles in certain occupations such as agriculture, construction, and health care. Research has found that immigrants do not displace U.S.-born workers and help foster job growth through entrepreneurship and the consumption of goods and services. Further, federal data show that unemployment rates for U.S.-born workers have not decreased between 2022 and 2023 and have remained similar to those for immigrant workers. In addition, immigrants, including undocumented immigrants, pay billions of dollars in federal, state, and local taxes each year. Mass deportation of immigrants could lead to workforce shortages in key sectors which could have negative economic consequences including an increase in the cost of essential goods such as groceries. Vice President-elect Vance has stated that immigrants are responsible for the U.S. housing crisis. While some studies show a link between immigration and rising housing costs, in general, economists are skeptical of immigration being a primary driver. Mass deportation of immigrants could also worsen housing shortages since immigrants make up a significant share of construction workers. Workplace raids can exacerbate existing labor shortages and have a negative impact on the local economies of the communities where they take place. Further, research shows that without the contributions undocumented immigrants make to the Medicare Trust Fund, it would reach insolvency earlier, and that undocumented immigrants result in a net positive effect on the financial status of Social Security. There also is likely to be a significant cost to taxpayers for the government to carry out large-scale detention and deportations.

Ending Birthright Citizenship

President-elect Trump has stated that he will sign an executive order to end birthright citizenship for the children of some immigrants despite it being a guaranteed right under the U.S. Constitution, which would negatively impact the health care workforce and economy. This proposed action would limit access to health coverage and care for the children of immigrants since they may not have lawful status. It could also have broader ramifications for the nation’s workforce and economy, potentially exacerbating existing worker shortages, including in health care. KFF analysis of federal data shows that adult children of immigrants have slightly better educational and economic outcomes than adult children of U.S.-born parents and make up twice the share of physicians, surgeons, and other health care practitioners as compared to their share of the population (13% vs. 6%) (Figure 2). Other research also has found that children of immigrants contribute more in taxes on average than their parents or the rest of the U.S.-born population, and that their fiscal contributions exceed their costs associated with health care, education, and other social services.

Adult Children of Immigrants Play an Outsized Role in the U.S. Health Care Workforce

Reinstatement of “Remain in Mexico” Policy

President-elect Trump has stated that he will reinstate the “Remain in Mexico” border policy and that he may use military spending to carry out stricter border enforcement, which would leave an increased number of asylum seekers facing unsafe conditions at the border. The first Trump administration implemented Migrant Protection Protocols, often referred to as the “Remain in Mexico” policy, in 2019. Under this policy, asylum seekers were required to remain in Mexico, often in unsafe conditions, while they awaited their immigration court hearings. The Biden administration ended this policy in 2022, following some legal challenges, although it implemented a series of increasingly restrictive limits on asylum eligibility in 2023 and 2024 in response to a high number of border encounters. President-elect Trump said he plans to reinstate the Migrant Protection Protocols. He also has indicated that he will deploy the National Guard, as well as active duty military personnel, if needed, to the U.S.-Mexico border, although details of the plan remain unclear. Heightened military presence at the border can lead to increased fears among immigrant families living in border areas and using part of the military budget for border security could face legal challenges.

Restrictions on Humanitarian Protections

President-elect Trump said he plans to significantly limit the entry of humanitarian migrants into the U.S. during his second term by restricting refugee limits, shutting down the CBP One application for asylum seekers, and eliminating Temporary Protected Status (TPS) designations for immigrants from some countries.  During his first term, President Trump set the annual refugee admissions ceiling at its lowest levels, ranging from 50,000 in 2017 to a historic low of 18,000 in 2020. The Biden administration increased the limit to 65,000 in 2021, a level close to the annual ceilings prior to the first Trump term, and further increased the limits in 2022 and 2024 in response to humanitarian concerns. It is likely that President-elect Trump will reduce the admissions ceiling for refugees in his second term. The President-elect has also said that he will close the CBP One application created by the Biden administration which allows asylum seekers to seek lawful entry to the U.S. by making an interview appointment with the DHS. While there have been implementation challenges with the CBP One application, shutting down the application could lead to “mass cancellation of appointments” and possibly an increase in attempts to cross the border outside of ports of entry. President-elect Trump also has indicated that he will roll back TPS designations for some immigrants, including those from Haiti. TPS designations protect immigrants from countries deemed unsafe by the DHS from deportation and provide them with employment authorization but do not provide a pathway to long-term residency or citizenship. As of March 2024, over 860,000 immigrants from 16 countries were protected by TPS. Loss of TPS would put people at risk for deportation, which could contribute to family separation which in turn can have negative impacts on the mental and physical health of immigrant families, and broader negative consequences for the workforce and economy.

  1. KFF analysis of 2023 American Community Survey 1-year Public Use Microdata Sample. ↩︎

How HHS, FDA, and CDC Can Influence U.S. Vaccine Policy

Published: Nov 20, 2024

With President-elect Donald Trump announcing his intention to nominate Robert F. Kennedy, Jr. as Secretary of Health and Human Services (HHS), and several other nominations expected soon, including for the heads of the Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC), questions have been raised about what influence these appointed health officials have over U.S. vaccine policy. Kennedy, for example, has expressed doubts about the safety and effectiveness of many vaccines, falsely claimed that vaccines are linked to autism, and voiced opposition to vaccine requirements for children, among other policy positions. Does this mean he or other federal officials could change recommendations or remove vaccines from use? Could these officials impose a different set of vaccine requirements for school-age children? To help answer these questions, this policy brief highlights several areas in which HHS, FDA, and CDC have authority to shape U.S. vaccine policy with a specific focus on vaccine approvals and recommendations for the public. Ultimately, while there are limits, federal officials have significant authority to influence and alter vaccine policy, which could affect vaccine availability, views about vaccines, and vaccine use in the U.S. However, this does not include imposing mandates on or changing local vaccination requirements, as those authorities rest with state and local governments.

What Federal Agencies Approve and Recommend Vaccines?

The Department of Health and Human Services (HHS) is the core federal department responsible for improving the health and well-being of Americans. It is headed by a Secretary (a cabinet-level, Senate-confirmed position), and has 13 operating divisions including key federal agencies related to vaccines and vaccination policy in the U.S.:

  • The Food and Drug Administration (FDA) oversees review of the safety and efficacy of candidate vaccines, and is authorized to determine whether or not to approve vaccines for use; only vaccines that have been FDA-approved can be legally administered in the U.S. (although FDA can also provide emergency use authorization for select vaccines under certain circumstances, as was done during the COVID-19 pandemic). FDA may also engage in post-market surveillance of approved vaccines to track their safety, effectiveness and/or possible side effects, and revisit approval decisions if new evidence is warranted. FDA is led by a Commissioner, a Senate-confirmed position, who reports to the Secretary of HHS; the office that oversees vaccine approvals at FDA is the Center for Biologics Evaluation and Research (CBER).
  • The Centers for Disease Control and Prevention (CDC) is responsible for providing recommendations to the public about when and how to use approved (or authorized) vaccines. This includes issuing the U.S. adult and childhood immunization schedules, which gives guidance on the age(s) when vaccines should be given, the number of doses recommended, timing of doses, and other information. CDC also oversees the Vaccines for Children (VCP) program, which provides free vaccines to Medicaid eligible, uninsured and underinsured children. CDC is headed by a Director who, due to legislation passed by Congress in 2023, is a Senate-confirmed position as of January 2025). Recommendations related to vaccines are determined by the CDC Director, who reports to the Secretary of HHS.
  • In addition to FDA and CDC, there are several other federal agencies and programs that play a role in vaccine development and use in the U.S., including: the National Institutes of Health which support basic vaccine research and clinical studies; the Health Resources and Services Administration, which oversees the National Vaccine Injury Compensation Program (VICP) and the Countermeasures Injury Compensation Program (CICP), each of which can compensate individuals determined to have been harmed by vaccinations; and the Center for the Biomedical Advanced Research and Development Authority (BARDA), which promotes development medical countermeasures, including vaccines, for use in public health emergencies.

Importantly, the HHS Secretary oversees these programs, placing them in a crucial position to influence many aspects of federal vaccine policy. For one, under the Public Health Service Act, the HHS Secretary is authorized to establish a National Vaccine Program, which develops a strategic vaccination plan for the nation and coordinates across multiple agencies. The Secretary also has some ability to shift funding, re-organize offices, and make staffing decisions, but only up to a point because major HHS offices and programs are mandated by law and funded through Congressional appropriations. Further, the HHS Secretary generally has the authority to overrule decisions and recommendations of the FDA Commissioner and CDC Director, though this has happened only rarely in the past.

What is the Relationship Between State and Federal Authority on Vaccination Policy?

Despite the important role played by the federal government in vaccine policy, neither HHS nor any other part of the federal government may impose or revoke vaccine requirements for children in school, or enforce other broad vaccine mandates at the national level, with the potential exception of during a declared health emergency (federal courts have been mixed in their decisions regarding the extent of federal authority in these circumstances). Under the U.S. Constitution’s 10th Amendment’s “police powers” clause, states are granted primary responsibility for enacting and enforcing laws to promote the health, safety, and general welfare of people in their jurisdictions, which includes public health activities generally and (as upheld in multiple Supreme Court and circuit court decisions) vaccine mandates specifically. Therefore, federal guidance on vaccines and recommended vaccine schedules are guidance, not mandates. State and local decision-makers take this information and determine if a vaccine should be required and for what purpose, and whether individuals may opt out of requirements.

How Can HHS Influence Vaccine Approvals and Recommendations?

While the HHS Secretary, FDA Commissioner, and CDC Director cannot impose a national vaccine mandate (outside of a declared public health emergency, and only then under limited circumstances) or revoke existing state and local level vaccine requirements, here are some ways in which they can influence vaccine policy decisions by states, localities, pediatricians, parents, and individuals:

Influencing or Bypassing Federal Advisory Committee Recommendations

The FDA and CDC each have external expert advisory committees that provide important input into vaccine policy decisions. FDA commonly seeks input from the Vaccines and Related Biological Products Advisory Committee (VRBPAC) during vaccine reviews, and the FDA Commissioner uses VRBPAC recommendations when weighing approvals and other regulatory decisions about vaccines. CDC receives input from the Advisory Committee on Immunization Practices (ACIP), which reviews available evidence and makes recommendations to the CDC Director on individual vaccines and immunization schedules for children and adults. In addition, vaccines recommended by ACIP and adopted by CDC for children ages 18 and younger are automatically covered by the Vaccines for Children (VCP) program, and, per a provision of the Affordable Care Act, ACIP recommendations that have been adopted by the CDC must be covered at no cost by most health plans.

Given their roles in informing federal vaccine decisions, it is possible to exert policy influence through changes in the work of these committees. According to the committee charters and existing legal authorities, HHS leaders have the discretion to:

  • Determine advisory committee memberships: Members of the VRBPAC are selected by the FDA Commissioner while members of ACIP are selected by the HHS Secretary. Sitting advisory committee members can be replaced at the discretion of the FDA Commissioner and HHS Secretary.
  • Terminate or re-work committee charters. Both VRBPAC and ACIP charters require that these committees be terminated after two years, unless they are renewed, and agencies have discretion over whether to do so. Agencies can also re-write the charters that adjust the rules under which the committees function.
  • Bypass advisory committee recommendations. The FDA does not have to request input from VRBPAC for vaccine approval decisions; in addition, where recommendations and input are provided, the final decision ultimately rests with the FDA. Similarly, the CDC director makes the decision on whether a vaccine should be recommended to the public and the content of those recommendations and does not have to follow recommendations issued by ACIP. There is precedent for the FDA and CDC breaking with advisory committee recommendations and issuing their own. Moreover, in all cases, the Secretary of HHS has ultimate authority over vaccine approvals and recommendations and can choose to overrule recommendations from the committees and even FDA and/or CDC leadership.

Adjusting Criteria for Vaccine Approvals and Reviews

The FDA Commissioner and CDC Director (and HHS Secretary), as part of their authorities related to vaccines, have discretion over aspects of the review process and can adjust criteria and timelines to aid or hinder vaccine licensing applications and criteria used for approvals and recommendations. For example:

  • FDA evaluates the safety and effectiveness of vaccine candidates, as well as their benefits and risks, and whether the manufacturing and facility information assure product quality and consistency before deciding to recommend a vaccine for approval. As such, the agency has discretion over how it evaluates and weighs these criteria, including whether to put in place different or more or less stringent requirements. FDA could potentially speed up or slow down the pace of review, placing candidate vaccines that are high priorities for the Commissioner (and/or HHS Secretary) on a faster track and lower priority vaccines on a slower track. The FDA also help oversee safety surveillance for vaccines currently approved or authorized for use and can require manufacturers to submit post-market safety and effectiveness studies for vaccines. FDA could seek to remove a vaccine from the market if significant safety concerns were to be identified (or other issues such as concerns about manufacturing practices). However, there is a process for doing so and without new information and sufficient evidence of harms or other concerns there would likely be legal challenges to any attempt to remove an existing approved vaccine.
  • In addition to reviewing FDA safety, efficacy, and effectiveness data, CDC and ACIP consider several other factors when assessing whether to recommend a vaccine to the public, including disease epidemiology and burden of disease, the quality of evidence reviewed, economic analyses, and implementation issues. The ACIP uses an evidence-based approach, called the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) and develops guidance for evaluating the evidence. This affords some discretion to ACIP committee members, and CDC, in weighing different factors for determining whether to recommend a vaccine, and the public health guidance provided on how best to use a vaccine.
  • FDA and CDC also have some discretion over what data are made available about vaccine safety and efficacy. Currently, vaccine safety and efficacy data are made available at different stages of the vaccine review, approval, and recommendation process, as well as after vaccines are in use. Typically, FDA and vaccine manufacturers publicly make available briefing documents used to summarize what is known about vaccine safety and efficacy and to inform decisions for approval or authorization, as was done for COVID-19 vaccines, though some data is not released publicly. This kind of safety and efficacy data are also released by CDC as part of its process for making recommendations to the public, as has been done for influenza and many other vaccines. Further, the U.S. government maintains a database of clinical trial information and results, which relies on investigators and sponsors choosing to submit such information; some, but not all submissions, include study results. Finally, there are a number of government supported vaccine safety systems used to monitor vaccines after approval (or authorization): MedWatch, the Vaccine Adverse Event Reporting System (VAERS), V-safe, the Vaccine Safety Datalink (VSD) and the Clinical Immunization Safety Assessment (CISA) Project, each of which serves different purposes. VAERS, for example, is a “passive” surveillance system, dependent on people submitting their experiences after vaccination and submitted events cannot on their own determine if the event was related to a vaccine. VAERS Data are accessible to the public on the CDC website.

Communicating to the Public

Beyond its role in determining vaccine approvals and recommendations, the federal government plays a critical role in communicating to the public about vaccines, and these communications may influence public behavior. In recent years, particularly in the wake of the COVID-19 pandemic, there has been increased vaccine hesitancy among the public and reduced trust in federal health authorities including the CDC and FDA, and these views have often diverged along partisan lines. As a result, routine vaccination rates have fallen, including among kindergarten age children. Moreover, the number of states allowing for non-medical vaccine exemptions has risen. In some cases, reductions in vaccination coverage have been associated with outbreaks in parts of the country. Should federal officials choose to communicate doubt about vaccine safety and effectiveness, that is not supported by the data, or to not communicate about vaccines, it could provide momentum to state and local authorities seeking to loosen or eliminate school vaccine requirements, and could lead to a growing share of the public choosing not to get vaccinated or not to have their children vaccinated, which could have significant implications for individual and population health.

Section 1115 Waiver Watch: Medicaid Services for Traditional American Indian and Alaska Native Health Care Practices

Published: Nov 19, 2024

In October 2024, the Centers for Medicare and Medicaid Services (CMS) approved the first ever Section 1115 waiver demonstration amendments that would allow Medicaid and the Children’s Health Insurance Program (CHIP) coverage of traditional health care practices provided by the Indian Health Service (IHS), Tribal facilities, and urban Indian organizations for American Indian or Alaska Native (AIAN) people. This follows guidance from the Biden administration for federal agencies to include Indigenous knowledge in federal policy and a strategic plan from CMS to support work that would inform states on how to use section 1115 demonstrations to improve access to health care services for AIAN people. AIAN people face persistent disparities in health and health care, and the IHS has historically not met their health care needs. Traditional healing practices are an important component of AIAN culture, and research shows that increasing access to traditional health care practices may improve mental health and substance use disorder (SUD) outcomes among AIAN people utilizing these services.

As of November 2024, CMS has approved Section 1115 waiver amendments from four states: Arizona, California, New Mexico, and Oregon. This Waiver Watch reviews disparities in health and health care for AIAN people and summarizes the key features of the approved 1115 waivers. Section 1115 waivers generally reflect priorities identified by the states and CMS, as well as changing priorities from one presidential administration to another. It is uncertain whether new approvals or renewals of these waivers would be a priority during the next Trump administration.

What disparities in health and health care do AIAN people face?

AIAN people face persistent disparities and barriers to obtaining health care and fare worse than their White counterparts across a range of health measures. AIAN people fare worse on many social and economic measures that impact health, such as having higher poverty rates, lower educational attainment, and lower rates of English proficiency compared to White people. Nonelderly AIAN people are more likely to be uninsured and to report postponing or skipping health care due to cost than their White counterparts. AIAN people also have the shortest life expectancy across racial and ethnic groups, are more likely than White people to report fair or poor health, and have higher incidence and prevalence of obesity, diabetes, cancer, and infectious diseases. Additionally, AIAN people experience higher rates of pregnancy-related deaths, infant mortality, and other adverse birth outcomes compared to White people. AIAN people also face challenges with mental health, including high rates of suicide and drug overdose deaths. Despite these significant health challenges, AIAN groups are often excluded from data and analysis due to their smaller population sizes, limiting the understanding of their unique barriers to accessing health services and development of interventions to address them.

What is the role of the IHS for AIAN people?

The IHS is responsible for providing health care and prevention services for AIAN people but historically has been underfunded to meet their needs. Under treaties and laws, the U.S. has a unique responsibility to provide certain rights, protections, and services to AIAN people, including health care. The federal government provides health services through facilities that are managed directly by IHS, by Tribes or Tribal organizations under contract or compact with the IHS, and urban Indian health programs. AIAN people receiving services through IHS providers are not charged or billed for the cost of their services. Direct services provided through IHS and Tribally operated facilities generally are limited to members or descendants of members of federally recognized Tribes who live on or near federal reservations. Urban Indian health programs serve a wider group of AIAN people, including those who are not able to access IHS or Tribally operated facilities because they do not meet eligibility criteria or because they reside outside their service areas. While IHS is the primary vehicle the U.S. government uses to provide health care to AIAN people, it is not health insurance and inadequate funding levels, estimated to address less than half of AIAN health care needs, and uncertainty caused by the funding process continue to limit access and lead to gaps in care.

Why is health coverage important for AIAN people?

Given the limitations of the IHS, health coverage under Medicaid remains important for facilitating access to health care for AIAN people and protecting them from high medical costs. AIAN individuals may qualify for Medicaid in their state regardless of Tribal membership, whether they live on or off a reservation, and whether they receive services (or are eligible to receive services) at an IHS or Tribally-operated facility. Due to their lower incomes, Medicaid and CHIP are important sources of health coverage for AIAN people, covering about 23% of all nonelderly AIAN adults and about 44% of AIAN children. The ACA Medicaid expansion led to coverage gains among AIAN people, and nonelderly AIAN people have a higher uninsured rate in states that have not implemented the expansion (20%) compared to the rate in those that have (14%) (Appendix Figure 1).

Medicaid also provides an important source of financing for IHS and Tribal providers. Medicaid is the largest source of third-party payment for services billed by IHS and Tribal facilities, accounting for nearly two-thirds (67%) of total third-party revenues as of 2021. In contrast to IHS funds, Medicaid funds are not subject to annual appropriation limits and, since Medicaid claims are processed throughout the year, facilities receive Medicaid funding on an ongoing basis for covered services. Unlike other Medicaid costs which are shared by the federal government and states, the federal government covers 100% of costs for services provided to AIAN Medicaid enrollees through an IHS or Tribally operated facility, whether operated by the IHS or on its behalf by a Tribe. Urban Indian health programs do not currently receive this 100% federal Medicaid match. The American Rescue Plan authorized a 100% match for urban Indian health programs for a temporary period that expired in 2023, and there have been calls for and proposed legislation to permanently extend 100% funding to urban Indian health programs. CMS cannot change statutorily set federal Medicaid match rates for urban Indian programs through section 1115 waivers.

What are traditional health practices?

Traditional healing practices are an important part of AIAN culture, and research shows that access to traditional health care practices can improve mental health and SUD outcomes. Traditional health care practices in AIAN communities include talking circles, sweat lodges, smudging, music therapy, and ceremonies by traditional healers that are deeply rooted in cultural beliefs and may vary between different AIAN communities. These practices may address mental, emotional, and spiritual well-being. While research studying interventions among AIAN populations is limited, studies have demonstrated that traditional health care practices may improve mental health outcomes, including for depression and anxiety, SUD, and quality of life. Traditional health care has not been covered by Medicaid or other public or private insurance and historically has been funded and delivered by IHS and Tribal facilities, various pilot programs, and grant funding.

How are states using 1115 waivers to provide Medicaid coverage for traditional health practices?

In October 2024, CMS approved section 1115 demonstration amendments that allow for Medicaid and CHIP coverage of traditional health care practices for the first time in four states: Arizona, California, New Mexico, and Oregon. Nearly three in ten (27%) AIAN people resided in the approved states in 2022 (Figure 1). CMS traditionally applies public notice and comment period requirements at the state and federal levels before approving Section 1115 waiver amendments. Along with the public comment process, CMS consulted the CMS Tribal Technical Advisory Group and held an All Tribes Consultation Webinar for advice and input on these waivers. As these are amendments to existing waivers, expiration dates vary with the earliest expiring at the end of 2026 in California (Appendix Table 1). Given that Medicaid is a significant payer for IHS, Tribal, and urban Indian organization facility services, Medicaid coverage of traditional health care practices may improve access to culturally appropriate practices and otherwise support these facilities’ ability to serve their patients.

Distribution of AIAN People by State, 2022

Traditional health care practices will be provided by IHS, Tribal, and urban Indian organization facilities, and coverage will be available to Medicaid enrollees eligible to receive services at these facilities. California will initially only cover services for AIAN enrollees with SUD in the Drug Medi-Cal Organized Delivery System but has the option to expand to all AIAN people in the future. Providers may be able to begin requesting reimbursement for traditional health services as early as January 2025 in California. Other key details include:

  • Practice Definition. CMS encourages states to consult with Tribal organizations to determine how to define traditional health care practitioners and traditional health practices. Traditional health care practices must be provided by practitioners or providers who are employed by or contracted with one of these facilities with the necessary experience and training to provide traditional health services.
  • Federal Match. Consistent with current law, practices will be reimbursed at 100% service match for services provided to AIAN individuals at IHS or Tribal facilities. Services delivered to Medicaid beneficiaries by urban Indian organization facilities will be federally matched at the otherwise applicable state service match.
  • Implementation Expenditures. States may also receive federal match for expenditures related to provider development and implementation of traditional health care practices (e.g., for accounting and billing systems, electronic health records and modifications to internal systems to accept referrals from other providers, workforce development, and outreach and community engagement). New Mexico and Oregon have taken up the option to receive federal match for infrastructure spending related to implementing traditional health care practices.
  • Attestation of Secular Alternatives. As some of the traditional health care practices covered under the demonstrations may contain elements of religious or spiritual practices, states cannot begin claiming traditional health care expenditures until they attest to providing adequate access to secular alternatives (e.g., preventative services, primary care, SUD services) and that beneficiaries have access to and the choice to use other Medicaid and CHIP services.

Appendix

Health Coverage of Nonelderly AIAN People, 2018-2022
Approved Section 1115 Traditional AIAN Health Care Practices Waivers

Medicare Advantage Has Become More Popular Among the Shrinking Share of Employers That Offer Retiree Health Benefits

Published: Nov 18, 2024

Employer and union-sponsored retiree health plans play an important role in providing supplemental benefits to about a quarter (24%) of all people with Medicare or 14.5 million Medicare beneficiaries. However, the share of employers offering retiree health benefits has been shrinking. Among large employers that offer health benefits to active workers, the share offering retiree health benefits has dropped from 66% in 1988 to 24% in 2024, according to the latest KFF Employer Health Benefits Survey. And among large firms offering health benefits to active workers and retirees, 64 percent offer retiree health benefits to Medicare-age retirees in 2024. Among the declining share of large firms that offer retiree health benefits to Medicare-age retirees, Medicare Advantage has become more popular.

This analysis examines the extent to which large private and non-federal public employers that offer retiree health benefits are turning to Medicare Advantage, using data from the 2024 KFF Employer Health Benefits Survey (see methods).

Highlights:

  • Slightly more than half (56%) of large employers offering retiree health benefits to Medicare-age retirees in 2024 offer coverage to at least some retirees through a Medicare Advantage plan, more than double the share in 2017 (26%).
  • About half of large employers (53%) that offer Medicare Advantage coverage to their retirees in 2024 do not give retirees a choice in coverage options.
  • Slightly more than half (56%) of large employers offering retiree benefits through a Medicare Advantage plan believe the shift to Medicare Advantage lowered the cost per retiree.
  • Among large firms that offer retiree health benefits but do not offer benefits through a Medicare Advantage plan in 2024, 6% are very likely or somewhat likely to do so in the next two years.

Employer or union-sponsored retiree health benefits cover some or all of Medicare’s cost-sharing requirements and may provide supplemental benefits that are not covered by traditional Medicare. Until fairly recently, employer and union-sponsored retiree health benefits were typically designed to coordinate or wrap around traditional Medicare.

Concerns about retiree health benefit costs have led employers and unions to implement a variety of changes to limit their financial obligations, such as imposing caps on their retiree health liability, shifting toward defined contribution approaches, increasing retirees’ premium contribution, and more recently, by offering their Medicare-eligible retirees coverage through Medicare Advantage plans. Medicare Advantage plans, mainly HMOs and PPOs, provide all Medicare-covered benefits, typically include Part D drug coverage, and often include supplemental benefits such as lower cost sharing and vision, dental, and hearing benefits. Medicare Advantage enrollees continue to pay the Medicare Part B premium, but often pay no additional premium for covered benefits.

Unlike other Medicare Advantage plans, employer plans are not required to provide detailed information about their benefit design, including supplemental benefits. Therefore, it is not possible to assess how benefits and cost sharing compare for those enrolled in a group plan versus those enrolled in a plan that is generally available for individual purchase or a special needs plan. While group enrollment as a share of total Medicare Advantage enrollment has fluctuated between 17% to 20% since 2010, the actual number of group enrollees has increased from 1.8 million in 2010 to 5.7 million in 2024 as Medicare Advantage enrollment overall has grown.

Under this approach, employers and unions contract with a Medicare Advantage private insurer to provide all Medicare-covered benefits as well as any supplemental benefits for their Medicare-eligible retirees (and spouses). The employer (or union) and/or private insurer (acting on behalf of an employer) receives a payment from the federal government (Medicare) and agrees to cover all Medicare-covered benefits, along with a package of supplemental benefits for retirees in their group. Payments are based on the bids of other Medicare Advantage plans available to individual (non-group) enrollees, and set as a percentage of the area benchmark, adjusted for geography and risk. Employer plans are eligible to receive rebates and bonus payments from Medicare, both of which help cover the costs associated with supplemental benefits for their retirees and contribute to the growth in Medicare spending. Bonus payments for group Medicare Advantage plans accounted for $2.6 billion in spending in 2024.

Slightly more than half (56%) of all large firms (firms with 200 or more workers) that offer retiree health benefits to Medicare-age retirees do so through a Medicare Advantage plan in 2024, more than double the share in 2017 (26%) (Figure 1).

Among Large Firms Offering Retiree Health Benefits to Medicare-Age Retirees in 2024, Slightly More Than Half (56%) Provide These Benefits Through a Contract With a Medicare Advantage Plan, More Than Double the Share in 2017 (26%)

For retirees, the shift to Medicare Advantage can mean similar or better benefits and lower costs but can also mean more limited access to doctors and hospitals in the plan’s network and greater exposure to cost management tools, such as prior authorization, that may limit access to Medicare-covered services. These limitations are, in part, why public sector retirees in New York City sued to stop being moved to a Medicare Advantage plan in 2022 and may explain why a Manhattan Supreme Court Judge prohibited the implementation of this plan.

Among large firms (200 or more workers) offering retiree benefits through a contract with a Medicare Advantage plan, about half (53%) provide at least some retirees no choice but to receive their retiree health benefits through a Medicare Advantage plan in 2024 (Figure 2).

Among Large Firms Offering Retiree Benefits Through a Contract with a Medicare Advantage plan in 2024, About Half (53%) of These Firms Offer Retirees No Choice But to Receive Their Retiree Health Benefits Through a Medicare Advantage Plan

Retirees in firms that offer health benefits exclusively through Medicare Advantage plans have the option to enroll in traditional Medicare, but if they do, they may be required to give up retiree benefits in perpetuity. They may or may not be able to purchase a Medigap policy to supplement traditional Medicare, depending on their health condition, since most states do not have guaranteed issue protections for Medigap.

Among large firms (200 or more workers) offering retiree benefits through a contract with a Medicare Advantage plans, 56% believe that the shift to offering Medicare Advantage plans lowered their per retiree costs.

Among Large Firms Offering Retiree Benefits Through a Contract With a Medicare Advantage Plan, Slightly More Than Half (56%) of Firms Believe the Shift to Medicare Advantage Lowered the Cost Per Retiree

Further, 11% of large firms said the shift to Medicare Advantage plans did not lower their per retiree costs, while 33% did not know the answer.

More than half of all large employers offering Medicare Advantage to their retirees say the shift to Medicare Advantage plans lowered their per retiree costs, which may be a strategy to maintain benefits for their retirees, rather than terminate or scale back coverage. For example, in 2022, the state of Connecticut estimated the state would save $400 million over the following three years by switching retirees to a different Medicare Advantage administrator. Similarly, in 2023, New York City estimated that it would save $600 million annually by switching its city retirees to Medicare Advantage.

However, the rising number of Medicare-eligible retirees into Medicare Advantage plans has implications for Medicare spending because Medicare pays more for enrollees in Medicare Advantage plans (including for group plans) than it pays for similar people in traditional Medicare, which contributes to higher Medicare spending that ultimately affects the solvency of the Medicare Trust Fund and higher Medicare premiums paid by all beneficiaries, raising questions as to whether employers are limiting their liability for retiree health benefits at the expense of the Medicare program.

Among large firms (200 or more workers) offering retiree health benefits but do not offer benefits through a Medicare Advantage plan in 2024, 6% are very likely or somewhat likely to do so in the next two years.

Among Large Firms Offering Retiree Health Benefits That Do Not Offer Benefits Through a Medicare Advantage Plan in 2024, Only a Small Share of Firms (6%) Are Very Likely or Somewhat Likely to Do So in the Next Two Years

In contrast, 73% of firms say they were somewhat unlikely or very unlikely to offer retiree benefits through a Medicare Advantage plan in the next two years, while 21% of firms said they do not know whether they are likely to do so.

This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.

Methods

This analysis uses data from the KFF 2024 Employer Health Benefits Survey, published in October 2024 and fielded from January to July 2024. This survey asks retiree health benefits questions only of large firms offering health benefits to active worker (200 or more workers). The survey does not include information about union-administered benefits. For additional information, see Survey Designs and Methods.

The U.S. Government and Global Tuberculosis Efforts

Published: Nov 18, 2024

This fact sheet does not reflect recent changes that have been implemented by the Trump administration, including a foreign aid review and restructuring. For more information, see KFF’s Overview of President Trump’s Executive Actions on Global Health.

Key Facts

  • Tuberculosis, an infectious disease caused by bacteria, is the leading cause of death from a single infectious agent worldwide, despite being preventable and often curable. Since the World Health Organization declared tuberculosis (TB) to be a global health emergency in 1993, global efforts to address TB have become more prominent, and worldwide TB incidence and mortality rates have fallen. Still, in 2023, there were an estimated 10.8 million new cases of TB globally, including 662,000 new cases in people living with HIV, and an estimated 1.25 million people died from TB, including an estimated 161,000 people who were HIV-positive.
  • In response to the persistent challenges related to TB, including drug-resistant TB, the U.N. General Assembly has held two high-level meetings on TB – in 2018 and 2023 – to discuss these challenges and examine progress toward global goals, including ending the epidemic by 2030.
  • U.S. government (U.S.) involvement in global TB efforts was relatively limited until the late 1990s. Since that time, its efforts to address TB have grown, and now the U.S. is one of the largest donors to global TB control.
  • U.S. TB activities reach approximately 50 countries (including at least 20 of the 30 high burden countries where most new cases are occurring), and focus on preventing, detecting, and treating TB, including drug-resistant TB, as well as research and development.
  • U.S. funding for global TB efforts was $406 million in FY 2024, up from $242 million in FY 2015. Additionally, the U.S. is the largest donor to the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), which has approved over $11 billion in funding for TB programs worldwide.

Global Situation1 

Tuberculosis, an infectious disease caused by bacteria, is the leading cause of death from a single infectious agent worldwide, despite being preventable and often curable. Approximately a quarter of the world’s population has “latent” TB, meaning they have been infected by TB bacteria but are not yet ill with the disease and cannot transmit it (see box below); about 5-10% of people infected with TB will, at some point during their lifetime, develop symptoms of “active” TB, which can be spread to others. When a person with active TB coughs, sneezes, or spits, the bacteria spreads into the air where it may be inhaled by and infect others. TB is found all over the world, though the vast majority of TB cases are concentrated in a handful of countries in Southeast Asia, Africa, and the Western Pacific region. People in resource-poor settings, especially those living in poverty or in crowded living conditions with poor ventilation (e.g., prisons or mines), are disproportionately affected.

Tuberculosis (TB): A bacterial infection caused by Mycobacterium tuberculosis. Not all people who become infected with TB will develop symptoms. Those who do not become ill are referred to as having “latent TB” and cannot spread the infection to others, while those who become ill with “active TB disease” have symptoms like coughing (sometime with sputum or blood), chest pains, weakness, weight loss, fever, and night sweats. The disease usually affects the lungs, but in serious cases, it can affect other parts of the body and, if not treated properly, can be fatal.

In the 1990s and early 2000s, concern about rising incidence in some areas, new outbreaks, TB/HIV co-infection, and the emergence of TB drug resistance prompted key global health actors and governments, including the U.S. government, to make preserving and advancing the progress of global efforts against TB a priority.2  In 1993, WHO declared TB to be a global health emergency. Since then, global efforts to address TB have become more prominent, and global TB incidence and mortality rates have fallen overall. Still, significant challenges remain, as TB returned to being the world’s leading cause of death from a single infectious agent in 2023 (following a 3-year hiatus during which COVID-19 displaced it). It is also the leading cause of death in people living with HIV and a major cause of death related to antimicrobial resistance (i.e., drug resistance). The second U.N. high-level meeting on TB, held in 2023, reviewed progress toward ending TB and set new targets for achievement by 2027 after targets set during the first U.N. high-level meeting, held in 2018, were not achieved.3 

Morbidity and Mortality4 

  • In 2023, there were 10.8 million new cases (i.e., incident cases) of people who developed active TB disease. Although active TB is treatable and curable in most cases,5  an estimated 1.25 million people died from TB in 2023, including an estimated 161,000 people who were HIV-positive. Globally, between 2015 and 2023, TB incidence fell by 8.3% and TB-related deaths fell by 23%.6  While progress has been made, these reductions fall short of global targets (see Global Goals), and detecting TB cases — and then linking diagnosed cases to treatment — remains a significant challenge, one that had been made even more complicated in the context of COVID-19. The pandemic disrupted TB case detection and treatment services and resulted in an increase in the number of people with undiagnosed and untreated TB, as well as increased transmission and mortality.
  • People who suffer from other conditions that impair the immune system (e.g., HIV) are at a higher risk of developing active TB, as are people who use tobacco. TB and HIV are frequently referred to as co-epidemics (or dual epidemics) due to their high rate of co-infection. TB is the leading cause of death among people living with HIV, especially in developing countries. In 2023, among the 10.8 million new active TB cases, about 6% were people who were also HIV-positive, and of the 1.25 million people who died from TB, about 13% were HIV-positive.
  • Drug-resistant TB has emerged as a major challenge to global TB control efforts. Cases that fail to respond to standard first-line drugs are known as multidrug-resistant TB (MDR-TB), while those that fail to respond to both first- and second-line drugs are known as extensively drug-resistant TB (XDR-TB).7  In 2023, an estimated 400,000 people developed MDR-TB or resistance to rifampicin (RR-TB), the most effective first-line drug.8  MDR/RR-TB has been reported in most countries, with 30 countries identified as having a high burden of MDR/RR-TB specifically and five countries — India, Russia, Indonesia, China, and the Philippines — accounting for over half of the global number of people who developed MDR/RR-TB in 2023.

Interventions

The End TB Strategy, the internationally-recognized strategy for ending the TB epidemic, outlines interventions aimed at decreasing TB-related morbidity, death, and transmission. They include:

  • early diagnosis of TB via sputum-smear microscopy,
  • treatment (usually a six-month course of antibiotics for drug-sensitive TB) and patient support for all people with TB,
  • scaled-up diagnosis and management of MDR- and XDR-TB,
  • systematic screening for and management of TB among people living with HIV and others in high-risk groups,
  • preventive treatment, including TB preventive treatment (TPT) and vaccination9  for high-risk groups, and
  • research and development (R&D) of new tools (e.g., new TB diagnostics, drugs, and vaccines) and improved approaches.

Other interventions include the development of policies and systems that support TB activities, such as improved standardized data collection, quality assurance and rational use of drugs, and monitoring and evaluation of outcomes; sustained political and financial commitment to TB efforts; health systems strengthening; and increased health workforce capacity to respond to TB.

Global Goals

Since the 1993 declaration of TB as a global health emergency by WHO, major global TB goals have most recently been set through the following:

  • Adopted in 2015, the Sustainable Development Goals (SDGs) aim to end the TB epidemic by 2030 under SDG Goal 3, which is to “ensure healthy lives and promote well-being for all at all ages.”
  • Endorsed by governments at the 2014 World Health Assembly, the End TB Strategy set an overarching goal of ending the global TB epidemic as well as targets for achieving, by 2035, a 95% reduction in TB deaths and a 90% reduction in TB incidence (compared with 2015 levels).10  It builds on the earlier 2006 international Stop TB Strategy, in which WHO outlined the goal of eliminating TB as a public health problem by 2050.11  The Global Plan to End TB outlines the steps and resources needed to achieve the End TB Strategy’s goals and is periodically updated by the Stop TB Partnership (an international network of public and private entities working to eliminate TB).
  • In 2018, the U.N. General Assembly held its first-ever high-level meeting (HLM) on TB, where world leaders adopted a new Political Declaration that reaffirmed global TB commitments. The Political Declaration also articulated commitments on TB research and innovation, and a framework to help countries implement these commitments – the Global Strategy for Tuberculosis Research and Innovation – was adopted by governments at the 2020 World Health Assembly. The second U.N. HLM on TB took place in September 2023, reviewing progress since the first HLM and setting new targets for achievement by 2027.12 

U.S. Government Efforts

U.S. involvement in global TB efforts was relatively limited until the late 1990s. Since that time, its efforts to address TB have grown, and now the U.S. is one of the largest donors to global TB control.13 

History and Goals14 

In 1998, the U.S. Agency for International Development (USAID) began a global TB control program, and over the following decade, the U.S. assigned a heightened priority to and provided greater funding for bilateral and multilateral TB efforts.

The passage of the legislation that launched the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003 placed a heightened priority on U.S. global TB efforts that continues to this day. The U.S. Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003 (the legislation that created PEPFAR) included TB under its umbrella, authorizing five years of funding for bilateral TB efforts and the Global Fund to Fight AIDS, Tuberculosis and Malaria (an independent, international financing institution created in 2001 that provides grants to countries to address TB, HIV, and malaria). The Lantos-Hyde U.S. Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008, which reauthorized PEPFAR, set targets for U.S. bilateral TB efforts and authorized another five years of funding. Subsequent reauthorizations of PEPFAR – under the 2013 PEPFAR Stewardship Act, 2018 PEPFAR Extension Act, and 2024 short-term reauthorization of PEPFAR (“Extension of Certain Requirements of PEPFAR“) – did not specify authorization for funding for TB (however, Congress effectively authorizes funding when it appropriates funding for a purpose) (See the KFF fact sheet on PEPFAR, the KFF fact sheet on the Global Fund, and the KFF brief on PEPFAR reauthorization.)

In 2022, USAID released its eight-year Global Tuberculosis (TB) Strategy 2023-2030, which outlines current U.S. global TB goals.15  These goals include, by 2030, to contribute to:

  • a 35% reduction in TB incidence relative to a 2019 baseline,
  • a 52% reduction in TB mortality relative to a 2019 baseline,
  • diagnosing and initiating treatment on 90% of incident (new cases of) TB and drug-resistant TB,
  • maintaining treatment success rates of 90% for individuals with drug-sensitive TB and drug-resistant TB, and
  • providing TB preventive treatment (TPT) to 30 million people.

These goals overlap with and reaffirm the U.S. commitment to the WHO End TB Strategy 2030 targets and SDG goal for TB.

The U.S. has also placed a heightened emphasis on addressing antimicrobial resistance.16  At the first U.N. TB HLM in 2018, the National Institutes of Health (NIH) released the Strategic Plan for Tuberculosis Research, which aims to accelerate its TB research including MDR-TB research; it was recently updated in 2024. In addition in 2020, the U.S. released its updated National Action Plan for Combating Antibiotic-Resistant Tuberculosis, which identifies interventions and articulates a strategy to respond to the domestic and global challenges of MDR-TB from 2020 through 2025.17 

Organization

The U.S. Agency for International Development (USAID) serves as the lead implementing agency for U.S. global TB efforts, with other agencies also carrying out TB activities. Collectively, these efforts reach approximately 50 countries, including at least 20 of the 30 high burden countries (HBCs, which are designated by WHO as having high numbers of TB cases and collectively account for approximately 87% of new TB cases globally).18  All U.S. global TB efforts are coordinated under the international working group of the Federal Tuberculosis Task Force (a coalition of federal agencies involved in U.S. global and domestic TB efforts).

USAID TB Program

USAID’s bilateral TB program aims to support specific country needs19  in its 24 priority countries (which are mainly in sub-Saharan Africa, South Asia, and Southeast Asia) and to focus on key interventions, including:

  • accelerated detection and treatment of TB for all patients,
  • scaled up prevention and treatment of MDR-TB,
  • expanded coverage of interventions for TB-HIV co-infection (in coordination with U.S. HIV efforts under PEPFAR; see below20 ),
  • improvements in the TB service delivery platforms and overall health system, and
  • support for accelerated research and innovation.

The agency reported that in USAID TB priority countries, TB-related mortality decreased by 9% in 2023 compared to 2019, representing the second year in a row that mortality decreased below pre-pandemic levels.21 

Other U.S. TB Efforts

The U.S. also supports TB activities through several other agencies, including:

  • the Centers for Disease Control and Prevention (CDC), which provides technical support on epidemiology and surveillance, laboratory strengthening, and clinical and program operations, and also supports clinical and operational research;
  • NIH, which, as the leading funder of TB research and development (R&D), supports basic, applied, and clinical R&D of new drugs, vaccines, and diagnostics;
  • the State Department’s Bureau of Global Health Security and Diplomacy, which leads U.S. efforts to address TB-HIV co-infection through PEPFAR; and
  • the Department of Defense (DoD), whose overseas laboratories help to monitor the quality of TB diagnostic services and conduct operational research.

Multilateral Efforts

The U.S. partners with international institutions and supports global TB funding mechanisms. Key partners include WHO and the Stop TB Partnership. Additionally, the U.S. government is the largest donor to the Global Fund, which has approved over $11 billion in funding for TB programs worldwide, and one of the largest donors to the Global Drug Facility (a mechanism of the Stop TB Partnership that provides grants to countries for TB drugs).22 

Funding23 

U.S. funding for global TB has grown over the past decade, with much of the increase occurring in more recent years; U.S. funding for TB rose from $242 million in FY 2015 to $406 million in FY 2024 (see figure for the latest information).24  Additional U.S. support for TB activities is provided through its contribution to the Global Fund. (See the KFF fact sheet on the U.S. Global Health Budget: Tuberculosis and the KFF budget tracker for more details on historical appropriations for global TB.)

Most U.S. bilateral funding for TB is provided through the Global Health Programs account at USAID with additional funding provided through the Economic Support Fund account, as well as funding through CDC.25  It includes U.S. contributions to the Global Drug Facility.26 

U.S. Funding for Global Tuberculosis (TB), FY 2016 - FY 2025
  1. WHO, “Tuberculosis,” fact sheet, Oct. 2024; WHO, Global TB Report 2024, 2024; USAID, Renewing Global Efforts to End TB: Tuberculosis Report to Congress, FY 2023, Jan. 2024. ↩︎
  2. WHO, “Global Tuberculosis Programme,” World Health Assembly Resolution 44.8, 1991; WHO, WHO Report on the Global TB Epidemic 1998, 1998; WHO, “Tuberculosis,” fact sheet, August 2002; TB Alert, “TB Timeline,” webpage, http://www.tbalert.org/about-tb/tb-in-time/tb-timeline/. ↩︎
  3. Global targets set at the first U.N. high-level meeting (HLM) on TB, for achievement between 2018-2022, include treatment and preventative treatment targets, as well as annual funding targets for TB research and universal access to TB services. The world fell short on all but one (preventative treatment for people living with HIV) of these targets. The new targets set at the second HLM include coverage targets for treatment, preventative treatment, rapid diagnostic testing, and health and social benefits; the rollout of safe and effective TB vaccines; and annual funding targets for TB research and universal access to TB services, all to be achieved between 2023-2027. ↩︎
  4. WHO, Global Tuberculosis Report 2024, 2024; WHO, “Tuberculosis,” fact sheet, Oct. 2024. ↩︎
  5. Treatment in most cases is usually a six-month course of antibiotics. ↩︎
  6. Globally, between 2010 and 2020, TB incidence fell by approximately 2% per year but then increased by 4.6% between 2020 and 2023 due to impacts of the COVID-19 pandemic. Increases in incidence may be due to increases in the number of people having undiagnosed and untreated TB (due to COVID-related service disruptions) and the subsequent development of disease among those newly infected. ↩︎
  7. Treatment options for these forms of TB are very limited. ↩︎
  8. That is, people with MDR-TB have a combined resistance to rifampicin and isoniazid (another key first-line TB drug). ↩︎
  9. No effective vaccine currently exists to prevent transmission of TB. The BCG (Bacillus Calmette-Guérin) vaccine is partially effective in preventing some serious TB complications in children and is recommended by WHO as a component of routine childhood immunization in countries with a high TB burden. ↩︎
  10. This means the incidence rate will be an average of less than 10 TB cases per 100,000 population. WHO: “Post-2015 Global TB Strategy and targets,” fact sheet, Dec. 2014; “Implementing the End TB Strategy: The Essentials, 2022” Dec. 2022, https://www.who.int/publications/i/item/9789240065093 ↩︎
  11. This means that “the global incidence of TB disease will be less than 1 case per million population per year.” ↩︎
  12. Global targets set at the first U.N. high-level meeting (HLM) on TB, for achievement between 2018-2022, include treatment and preventative treatment targets, as well as annual funding targets for TB research and universal access to TB services. The world fell short on all but one (preventative treatment for people living with HIV) of these targets. The new targets set at the second HLM include coverage targets for treatment, preventative treatment, rapid diagnostic testing, and health and social benefits; the rollout of safe and effective TB vaccines; and annual funding targets for TB research and universal access to TB services, all to be achieved between 2023-2027. ↩︎
  13. KFF analysis of OECD DAC CRS database, October 2024. ↩︎
  14. USAID: USAID, Expanded Response to TB, Sept. 2004 and updated Jan. 2009; USAID, Fast Facts: Tuberculosis, Oct. 2010. ↩︎
  15. This succeeds the prior five-year USG Global TB Strategy 2015-2022 and five-year Lantos-Hyde USG TB Strategy (March 2010). ↩︎
  16. In 2014, the White House announced the National Strategy for Combating Antibiotic-Resistant Bacteria (CARB) and issued an executive order directing the U.S. government to “work domestically and internationally to reduce the emergence and spread of antibiotic-resistant bacteria.” USAID, “Antimicrobial Resistance and the Threat of Multidrug-Resistant TB,” webpage, https://2012-2017.usaid.gov/what-we-do/global-health/tuberculosis/antimicrobial-resistance-and-threat-multidrug-resistant-tb; White House, Executive Order – Combating Antibiotic-Resistant Bacteria, 2014. See also: USG, National Strategy for Combating Antibiotic-Resistant Bacteria, 2014, https://www.cdc.gov/drugresistance/pdf/carb_national_strategy.pdf; White House, “Fact sheet: Obama Administration Releases National Action Plan to Combat Antibiotic-Resistant Bacteria, 2015, https://obamawhitehouse.archives.gov/the-press-office/2015/03/27/fact-sheet-obama-administration-releases-national-action-plan-combat-ant. ↩︎
  17. The National Action Plan for Combating Multidrug-Resistant Tuberculosis was first released in 2015 and then updated in 2020 to reflect its 2020-2025 strategy. ↩︎
  18. USAID and CDC’s TB efforts together reach approximately 50 countries, including those reached through regional efforts as well as PEPFAR-supported TB/HIV efforts. USAID, USAID’s Global Tuberculosis (TB) Strategy 2023–2030, 2022; USAID, Tuberculosis Report to Congress FY 2023, January 2024; USAID, “Tuberculosis: Countries,” webpage, accessed October 2024, https://www.usaid.gov/global-health/health-areas/tuberculosis/countries; CDC, “Global HIV & TB: Where We Work,” webpage, updated June 10, 2024, https://www.cdc.gov/global-hiv-tb/php/where-we-work/index.html; WHO, Global Tuberculosis Report 2024, 2024; WHO, “Tuberculosis,” fact sheet, Oct. 2024. ↩︎
  19. As outlined in a partner country’s national TB strategic plan, per the current and prior USG global TB strategies. ↩︎
  20. In 2023, as part of the U.S. commitment toward achieving the U.N. High Level Meeting 2027 target to detect and treat TB among 90% of those who develop TB, PEPFAR launched an effort to detect 2 million active TB cases over the next five years and prevent at least 500,000 TB-related deaths among people living with HIV. PEPFAR, Press release: PEPFAR Launches New Effort to Fight TB: Goal to Detect Two Million Cases and Prevent 500,000 Deaths, September 2023. ↩︎
  21. At the same time, TB incidence increased by 8 percent in 2023 compared to 2019 (though the rate of this increase has been slowing); USAID reports this increase is indicative of the residual impact of continuing to identify people with TB who were missed during the pandemic. ↩︎
  22. Global Fund: “Data Explorer,” accessed October 2024,https://data.theglobalfund.org/ ↩︎
  23. KFF analysis of data from the Office of Management and Budget, Agency Congressional Budget Justifications, Congressional Appropriations Bills, and U.S. Foreign Assistance Dashboard website, ForeignAssistance.gov. ↩︎
  24. FY24 is based on funding provided in the “Further Consolidated Appropriations Act, 2024” (P.L. 118-47) and is a preliminary estimate. ↩︎
  25. Represents specified funding for international TB programs in the President’s budget request, ForeignAssistance.gov, and Congressional appropriations bills. Additional support for international TB programs is provided through bilateral HIV programs at the State Department to address TB/HIV co-infection, for technical support and research activities through the CDC, and for research activities at the NIH. Prior to FY20, global TB funding at CDC was provided through the “HIV/AIDS, Viral Hepatitis, STI and TB Prevention” funding line; in the FY20 Request, the administration proposed to create a new “Global Tuberculosis” funding line under global health programs at CDC and to transfer $7.2 million from the “HIV/AIDS, Viral Hepatitis, STI and TB Prevention” funding line to “Global Tuberculosis” for both FY18 and FY19. The FY20 appropriations bill formalized this transfer. Funding amounts provided through this transfer are not currently available for the years prior to FY18. ↩︎
  26. Funding for the Global Drug Facility is provided through the Global Health Programs (GHP) account at USAID. ↩︎