Introduction

How we ask for, analyze, and report information on race and ethnicity affects our ability to understand the racial and ethnic composition of our nation’s population and our ability to identify and address racial disparities in health and health care. The accuracy and precision of such data have important implications for identifying needs and directing resources and efforts to address those needs. Race, ethnicity, and national origin are distinct concepts that are social constructs, and how they have been defined, identified, and/or categorized have evolved over time. This brief provides an overview of how the concepts of race, ethnicity, and nationality have been defined and measured by the federal government through the U.S. Census Bureau and the Office of Management and Budget (OMB) over time and the implications for health disparities. We acknowledge that this brief does not cover all the nuances and complexities of the topic of racial and ethnic identity and that there is variation in how people think, talk, and relate to race, ethnicity, and national identity.

What do Race, Ethnicity, and National Origin Represent?

The concepts of race, ethnicity, and national origin and their fluidity are reflective of these identities being social constructs. While different, the two concepts of race and ethnicity are connected. Race is defined as a social political category primarily based on physical characteristics such as skin color, and ethnicity is a social category primarily defined by culture, language, and history. National origin is defined by the country or region that an individual or their ancestors originate from. In a 2024 update, federal standards for collecting and reporting racial and ethnic data combined previously separate questions about race and Hispanic ethnicity into a single question, and a new category was added for Middle Eastern or North African (MENA) people. The updated federal standards utilize seven racial and ethnic categories that are identified with the following terms (see Appendix for more details):

• American Indian or Alaska Native (AIAN)
• Asian
• Black or African American
• Hispanic or Latino
• Middle Eastern or North African (MENA)
• Native Hawaiian or Pacific Islander (NHPI)
• White

There are distinctions in the meanings of and community preferences for different terms, such as Black and African American and Hispanic, Latino, or Latinx. Polling data over time show that half of those who trace their roots to Spanish-speaking Latin America and Spain have consistently said they have no preference for Hispanic or Latino, but that when asked to choose one term over another, Hispanic has been preferred to Latino. Surveys further show a preference for country-of-origin labels (such as Mexican, Cuban, or Ecuadorian) versus broader pan-ethnic terms. A 2023 survey of U.S. Hispanic adults found that 47% of U.S. adults who self-identify as Hispanic have heard of the term Latinx, and just 4% say they use it to describe themselves. A 2021 Gallup Poll similarly found that most people favor the use of the term Hispanic and few (4%) prefer Latinx. Polling data also show that most Black Americans do not have a preference between Black and African American when asked which term they would rather people use to describe their racial group.

A large and growing share of people identify with more than one of the previous federal racial and ethnic categories (which do not reflect the 2024 changes to the standards). KFF analysis of 2023 American Community Survey (ACS) data finds that about eight in ten (81%) AIAN and two thirds (66%) of NHPI people identify with more than one racial and/or ethnic group. About one in five Asian (20%), Black (18%), and White (21%) people also identify with more than one racial and/or ethnic group (Figure 1). Under previous standards which had separate questions for Hispanic ethnicity and race, people of Hispanic ethnicity may be of any race.

Racial identity is important to how people think about themselves, particularly for Black and Hispanic people. In a recent KFF survey, a majority of Black (83%) and Hispanic (70%) people said that their racial identity is very or extremely important to how they think about themselves. About half of Asian (51%) people say the same. Data were unavailable for other racial and ethnic groups (Figure 2).

How Have Measures of Race, Ethnicity, and National Origin Evolved Over Time?

Since its inception in 1790, the U.S. census has collected information on race and ethnicity that has informed policy, the allocation of resources, and scientific research on different groups within the country. The race and ethnicity data collected by the census is also used to evaluate the effectiveness of government programs and policies as well as to measure and ensure fairness, equity, and compliance with anti-discrimination laws and policies. In 1977, OMB established federal standards for race and ethnicity data through Statistical Policy Directive No. 15 to standardize how data are collected and reported at the federal level. The OMB standards guide not only the census but also other federal surveys, ensuring consistency across government data collection efforts. The census aligns its racial and ethnic categories with these standards, though it occasionally adjusts them to reflect evolving understandings of identity. The census recognizes that race is a social construct, stating that “The racial categories included in the census questionnaire generally reflect a social definition of race recognized in this country and not an attempt to define race biologically, anthropologically, or genetically. In addition, it is recognized that the categories of the race item include racial and national origin or sociocultural groups.”

How the census has collected and categorized information on race and ethnicity has evolved significantly over time, reflecting social and political shifts and the growing diversity of the U.S. population (Figure 3).

• Between 1790 and the mid-20^th century, race and ethnicity information was collected via enumerators who conducted an interview for each household. Enumerators identified individuals’ racial and ethnic identities through their observations based on criteria that included physical characteristics, social norms and principles, national origin, and Tribal affiliation. Between 1790 and 1860, the census collected information on White, Black (enslaved and free), and Other Free Persons.¹ 
• Additional categories were added to the census in the 1800s, which were motivated by slavery and race science and maintaining rights and privileges for White people. The 1840 census introduced a new category, free colored people (including Black and mixed-race Black people). In the mid to late 1800s, mixed-race categories were added — “mulatto, quadroon, and octoroon”. The definitions of these categories evolved over time, but they were based on perceived shares of Black ancestry and are no longer used. American Indian people who renounced Tribal rule, exercised the rights of U.S. citizens, and paid taxes were counted in the census for the first time in 1860. Prior to that, the Constitution excluded American Indian people who lived on reservations, lived on unsettled land, or were not taxed from being enumerated. By the late 1800s, the census began collecting national origin information, coinciding with the entry of Chinese migrant workers.
• Amid the rise of Jim Crow laws, the 1930 census dropped mixed-race categories and focused on the collection of single race data. Up until 1970, census enumerators classified people of mixed-race heritage based on specific rules: those with White ancestry and another racial group were classified as “non-White,” and people with two “non-White” ancestries were classified by the father’s race. If a person was Black or AIAN, their racial identity was instead based on blood quantum rules. Blood quantum measures the percentage of American Indian or Alaska Native ancestry or blood that an individual has and is used to determine Tribal affiliation. People who were both Black and White were categorized as Black under the one-drop rule, which meant that a person with any percentage of Black ancestry or blood would be counted as Black.
• Also during this period, more disaggregated Asian national origin data were collected, and Mexican national origin data were collected for the first time. Before 1930, Mexican Americans were classified as White. There was an organized movement to remove the Mexican category and reclassify Mexican people as White. Mexican people were reclassified as White in the 1940 census until 1970 when the census added the Hispanic/Latin origin category to a version of the questionnaire that was sent to a small share of the U.S. population.
• In the mid-20^th century, the census shifted to allow respondents to self-identify their own race and/or ethnicity. Respondents were instructed to select the race that they most closely identified with from the single-race categories available or to use the father’s race if they were uncertain. Further, the addition of two new states in 1959, Alaska and Hawaii, prompted the addition of new categories to the census in 1960; Eskimo, Aleut, Hawaiian, and part-Hawaiian.
• In 1980, the census added a separate question on Hispanic ethnicity, following lobbying efforts from Hispanic advocacy groups in the 1970s in response to undercounting of the Hispanic population in the census. The Asian Pacific Islander (API) category was also added at this time in response to lobbying by Asian American legislators and advocacy groups, who similarly found that Asian American and Pacific Islander people were being undercounted. The API indicator included nine detailed Asian and Pacific Islander origin categories.
• In 1997, the OMB revised its race and ethnicity standards to allow individuals to select more than one racial category, reflecting a growing recognition of multiracial identities. This revision aimed to improve data accuracy and better capture the diversity of the U.S. population. Other open-ended questions on ancestry or ethnic origin were added that led to broader ethnic identification among American Indian people with a large share of the population claiming some Indian ancestry even if they didn’t identify racially as American Indian. This may have reflected increased American Indian pride movements that prompted people with multiracial American Indian heritage to identify with their American Indian ancestry.
• The second major change that impacted people with mixed-race heritage occurred in 2000, when the census allowed people to select more than one racial category. This change was driven by the multiracial movement of the 1980s and 1990s. In 2000, the census combined the American Indian and Alaska Native categories to form the AIAN category to capture original peoples with origins in North, Central, and/or South America. It also asked respondents to provide the names of their enrolled or principal Tribes. Additionally, it began collecting information separately on NHPI people, which it defined as people having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.
• The 2020 census allowed people to include detailed information about their race and/or ethnicity in addition to marking multiple race categories. The census now allows respondents to provide write-in responses describing their race and ethnicity, with clearer instructions and examples based on the largest population groups for each category. The multiracial population grew significantly between 2010 and 2020, with the U.S. Census Bureau indicating that changes in the design, data processing, and coding of the race and ethnicity questions over this time period (including the write-in responses) contributed to this growth, highlighting the impact of these decisions. This change also led to more people of MENA heritage providing detailed information about their ancestry, whereas before they were aggregated into the White category.
• In 2024, OMB released revised Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity to better reflect the growing diversity of the U.S. population. The revisions include using a single combined question for race and ethnicity, adding MENA as a minimum category, clarifying instructions for individuals to select multiple racial and ethnic categories that represent their identity, and requiring collection of more detail beyond the minimum categories. In addition, the standards require that data tabulation procedures result in the production of as much information on race and/or ethnicity as possible, including data for people reporting multiple racial and/or ethnic categories. These changes will impact how race and ethnicity data are collected in the census, as the U.S. Census Bureau has to adhere to the OMB standards on race and ethnicity.

While the census and OMB standards have been the standard for measuring race and ethnicity in the U.S. government at the federal level, states, localities, and other organizations often differ in their measurement of racial and ethnic data. For example, states vary in the number of categories they use to collect race and ethnicity data, as well as how these variables are named and combined. In Oregon, as part of an effort to eliminate health inequities, Oregon’s Health Authority has taken steps to accurately and expansively report demographic data. This includes collecting detailed and more granular race, ethnicity, language, and disability data. Oregon collects data for 42 race and ethnicity groups, answers are self-reported, and respondents are given the opportunity to select more than one race and/or ethnicity. Some states have narrower race and ethnicity categories, combining groups such as Asian and Native Hawaiian or Pacific Islanders into one group, API.

How Do Measures of Race, Ethnicity, and National Origin Impact Policies and Health Disparities?

How race, ethnicity, and nationality have been defined and measured has important implications for health disparities. Historically, these measures affected who can access health care, social services, education, and employment opportunities and have reinforced racial misinformation that limit access to resources for marginalized groups. Narrow and inconsistent race and ethnicity categories have obscured inequities and made it more difficult to meet the diverse needs of different populations. Conversely, data on race and ethnicity have also been used to address disparities by informing policies and interventions and to ensure compliance with antidiscrimination laws.

There are historic examples of racial and ethnic data being used in ways that have worsened and perpetuated racism and disparities. For example, in 1840, an “insane or idiot” category was added to the census to identify the number of people with mental disabilities in the country. However, the census enumerators disproportionately overcounted free colored people as “insane” to support the inaccurate idea that “freedom drove Black people mad.” Advocates of slavery used the 1840 census data to justify that slavery was beneficial for the health and well-being of Black people. In 1850, scientists petitioned the addition of a new racial category, “Mulatto” (people with mixed Black ancestry),  to study the health of multiracial enslaved people. Census data from this period contributed greatly to scientific racism. Scientists used this data to suggest people of color were inferior to White people, test theories of polygenism, and codify racial hierarchies. As the multiracial population grew, so did ideologies surrounding the rules of hypodescent, under which multiracial individuals are assigned the race of the parent from the marginalized racial group. This included the one-drop rule, which required that anyone with a discernible trace of African ancestry be considered Black. This concept ensured that the children of enslaved Black people and their White enslavers would remain slaves. Blood quantum categorization eventually led to the codification of the one-drop rule in some states during the Jim Crow era as a means of supporting segregation. Similarly, the census began collecting information on American Indian blood quantum in 1930. Blood quantum was not only used to determine Tribal membership but was also used to study any perceived biological and intellectual differences between American Indian and White people.

In addition, race has historically and continues to play a role in medical teaching and clinical decision making within health care. Historically, the medical and scientific community used race to explain differences in disease prevalence and outcomes, contributing to misperceptions about biological differences by race that were used to justify mistreatment. Within U.S. medical curricula, the concept of race led to since disproven theories of biological inferiority of people of color and White supremacy, which fueled an array of atrocities in medicine including the forced sterilization efforts targeting Black and Native American women, the use of Henrietta Lacks’ cells for scientific research without consent, and the infamous U.S. Public Health Service Untreated Syphilis Study at Tuskegee, among others. Today, research suggests that provider and institutional bias and discrimination are drivers of disparities and health. Race also continues to be used as a factor in some clinical algorithms, although there is growing movement to eliminate the use of race and to ensure that disparities are not perpetuated amid the growing use of artificial intelligence and algorithms to guide clinical decision making.

Conversely, racial and ethnic measures have also been used to mitigate inequities in policies, employment, health care, and other sectors. For example, the Civil Rights Movement in the mid-20^th century prompted the standardization of racial and ethnic classification as well as documentation of trends in racial and ethnic discrimination. This resulted in the establishment of the OMB Statistical Policy Directive No. 15 in 1977 that has since standardized the collection of race and ethnicity data at the federal level. The collection of standardized data facilitates the ability for policymakers and institutions to identify and address areas of inequality. For instance, racial and ethnic data can inform resource allocation, ensuring communities facing systemic disadvantages receive essential services, such as health care, education, and social programs. Additionally, it can help track and mitigate racial bias and discriminatory practices in health care, employment, housing, and other social and economic domains. These data also allow for the evaluation of the effectiveness of interventions designed to reduce disparities. For example, public health programs can measure the impact of vaccinations, screenings, or outreach efforts in marginalized communities, using racial and ethnic data to refine strategies and ensure more equitable access to care.

Availability of racial and ethnic data also has impacts on efforts to address health disparities. Missing or inconsistent data on race, ethnicity, and nationality can hinder effective resource allocation and policy decision-making, particularly in efforts to address health disparities. AIAN people were excluded in early versions of the census, beginning a trend of exclusion from national data inquiry that continues to the present day. This exclusion from data and analysis has contributed to limiting the visibility and understanding of challenges faced by AIAN people and other smaller racial and ethnic groups, including NHPI people. The negative impacts of missing or incomplete data were evidenced during the COVID-19 pandemic, when inconsistencies and limitations in how states reported their data limited the ability to understand racial and ethnic disparities in COVID-19 health impacts as well as take-up of COVID-19 vaccinations. Arab Americans and people with ancestry in the Middle East or North Africa have been invisible in key datasets, resulting in a limited understanding of their health outcomes, experiences accessing health care, and engagement with the health care system. Increasing the availability of disaggregated racial and ethnic data facilitates a greater understanding of disparities in health and health care and can help focus efforts to address them. For example, while aggregate data on Asian people suggest that they fare the same or better as compared to White people across most measures of health and health care, they mask underlying disparities among smaller subgroups within the Asian community. Having more disaggregated data allows for a more nuanced understanding of people’s experiences and can facilitate focused efforts to address disparities as well as to measure impacts of interventions to address them.

What are Future Issues to Consider Related to Measuring Race, Identity, and National Origin and Health Disparities?

As the U.S. becomes more diverse, it will be increasingly important to consider how to identify people’s identities, particularly among multiracial people. The census projects that people of color will account for over half of the population by 2050 with the largest growth occurring among people who identify as Asian or Hispanic. This shift underscores the importance of refining racial and ethnic categories to capture the complexity of modern identities. Continued adaptation of data collection and reporting methods will be important for reflecting experiences among multiracial people.

Continued efforts to further disaggregate racial and ethnic data may be important for guiding efforts to address health and health disparities. Significant data gaps persist for smaller groups, including AIAN and NHPI people, with very limited information available for subgroups of these populations. Moreover, Asian and Hispanic people are often treated as monolithic in policy discussions, but the diversity in experiences among these groups is vast, encompassing differences in national origin, language, immigration status, and socioeconomic factors that all influence health. Disaggregating data by subgroup can allow for more nuanced understanding of the challenges faced by specific groups and facilitate tailored efforts to address them. For example, the health care experiences of Asian immigrants vary in meaningful ways due to the intersections of race and ethnicity, national origin, income, and other factors that may impact access to health care services. Moreover, data are often key for justifying allocation of resources toward specific communities or groups.

Increased recognition of the intersectional nature of people’s identities and other factors that may affect their health and health care experiences may also have important implications for efforts to address disparities. For example, the combination of race, ethnicity, and gender, highlights disproportionate discrimination for certain groups. Large federal surveys collect demographic and social data, including race and/or ethnicity, gender, educational attainment, and income that can allow researchers to examine how intersectional social and economic factors shape people’s health and experiences. However, in some cases, data are limited to examine experiences by multiple factors. Beyond an individual’s racial or ethnic identity, other factors that are less routinely collected in surveys, such as self-perceived skin color, can also influence their experiences. Socially-assigned race—that is the race that others perceive someone to be—may also be a factor. For example, studies have found that Hispanic or Latino individuals who are socially perceived as White report better health outcomes than those who are perceived as Hispanic or Latino. As efforts to address health disparities continue and evolve, it will be important to consider how these other factors influence people’s experiences and outcomes.

Appendix: Examples of Race and/or Ethnicity Questions Consistent with Revised OMB Standards

Source: Office of Management and Budget, Revisions to OMB’s Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity

Source: Office of Management and Budget, Revisions to OMB’s Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity

1. Between 1790 and 1840 only the heads of free households appeared in early census records, enslaved people were not recorded by name, age, sex, or origin. They only included additional demographic data on White people. ↩︎

Medicaid is the primary payer for long-term services and supports (LTSS) in the United States, and pays for more than two-thirds of the LTSS delivered in home- and community-based settings (HCBS). Most HCBS are optional for states to provide and are offered through “waivers,” which allow states to offer a wide range of benefits and to choose—and limit—the number of people who receive services. The only HCBS that states are required to cover is home health, but states may choose to cover personal care and other services, such as private duty nursing through the Medicaid state plan. States use HCBS waivers to offer expanded personal care benefits or to provide additional services such as adult day care, supported employment, and non-medical transportation. States also use waivers to provide specialized benefits that are specific to the population covered, such as providing supported employment only to people under age 65. KFF estimates that 4.5 million Medicaid enrollees use HCBS, and that the numbers of people using HCBS through the state plan are similar to the numbers using HCBS through waivers. A state’s ability to cap the number of people enrolled in HCBS waivers can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available.

This data note provides new information about waiting lists from KFF’s most recent survey of state Medicaid HCBS programs, including a discussion of why waiting lists are an incomplete measure of unmet need and why they are not necessarily comparable across states or over time, despite KFF’s efforts to obtain as consistent data as possible (see Box 1). Key takeaways include:

• The number of states that maintain waiting lists or interest lists for people who would like to receive HCBS has fluctuated little between 2016 and 2024.
• In most years since 2016, there have been roughly 0.7 million people on waiting lists or interest lists, with a total of over 710,000 in 2024.
• Most people on waiting lists or interest lists have intellectual or developmental disabilities and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.
• Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan HCBS benefits.
• KFF also recently updated the waiting list indicators on State Health Facts, which show data by state and target population.

Waiting lists provide an indication of people who may need services they are not receiving, but they are an incomplete measure of unmet need because they don’t include people with unmet needs in states that do not cover the applicable services (and therefore, have no waiting list). Waiting lists reflect the populations a state chooses to serve, the services it decides to provide, the resources it commits, and the availability of workers to provide services. In addition, states’ approaches to managing waiting lists differ in how they prioritize and screen for eligibility, making comparisons across states difficult. States are only able to use waiting lists for optional services so the number of people on waiting lists can increase when states offer a new waiver or make new services available within existing waivers; in these cases, the number of people receiving services increases, but so does the number of people on a waiting list. Finally, although people may wait a long time to receive waiver services—40 months on average in 2024—most people are eligible for other types of HCBS while they wait.

Even though HCBS waiting lists are an imperfect measure of unmet need, there are no other alternative measures available. Many HCBS programs were enacted or expanded in response to the Olmstead decision, a court ruling that found the unjustified institutionalization of people with disabilities is illegal discrimination. As 2024 marked the 25^th anniversary of Olmstead, waiting lists are sometimes described as contributing to the risk of unnecessary institutionalization for people with disabilities, and Democrats and Republicans alike proposed legislation in 2024 to address them. Starting in 2027, states will be required to report the number of people on waiting lists as required under a final rule on access to Medicaid services.

How did the number of states with waiting lists change between 2016 and 2024?

Between 2016 and 2024 the number of states with waiting lists has fluctuated between 37 and 41 and is currently at 40 states (Figure 1). While some Affordable Care Act (ACA) opponents have cited waiver waiting lists to argue that expanding Medicaid diverts funds from seniors and people with disabilities, research shows that ACA Medicaid expansion has led to gains in coverage for people with disabilities and chronic illnesses. Waiting lists for HCBS predate the ACA Medicaid expansion, which became effective in most states in 2014, and both expansion and non-expansion states have waiting lists. Waiver enrollment caps have existed since HCBS waiver authority was added to federal Medicaid law in the early 1980s.

There were more changes in waiting lists for specific types of waivers, however. Georgia, Kentucky, and West Virginia reported new lists for seniors/adults with physical disabilities (with a combined 2,683 people) and Alaska, Connecticut, South Dakota, and Washington reported new lists for people with intellectual or developmental disabilities (I/DD, with a combined 13,251 people on the lists). New Jersey newly reported a waiting list of nearly 2,700 people for its Community Care program, which serves people with I/DD and is part of the state’s larger 1115 waiver.

How did the number of people on waiting lists change between 2016 and 2024?

In most years between 2016 and 2024, roughly 0.7 million people have been on waiting lists or interest lists for HCBS (Figure 2). Between 2023 and 2024, total enrollment in waiting lists and interest lists increased by 2.6%. Overall, there was an increase in the number of people on waiting or interest lists in 19 states and a decrease in 14 states.

One factor that contributes to changes over time—especially the notable decline between 2018 and 2020—is that not all states screen for Medicaid eligibility prior to adding people to waiting lists and changes in this policy may result in changes in waiting list volumes. For example, between 2018 and 2020, the total number of people on waiting lists decreased by 155,000 or 19%. However, nearly half of that change came from Ohio’s implementation of a waiting list assessment of waiver eligibility, which reduced the size of the state’s waiting list by nearly 70,000 people. In 2024, most states (32) with waiting lists screen individuals for waiver eligibility among at least one waiver, but even among those states, 4 do not screen for all waivers. The 8 states that do not screen for eligibility among any waivers (Alaska, Illinois, Iowa, Oklahoma, Oregon, South Carolina, Texas, and Washington) account for over half of all people on waiting lists.

In all years since 2016, over half of people on HCBS waiting lists or interest lists lived in states that did not screen people on waiting lists for eligibility. One reason waiting lists provide an incomplete picture of need is that not all people on waiting lists will be eligible for services. Interviews about HCBS waiting lists found that when waiver services are provided on a first-come, first-served basis, people enrolled in waiting lists are in anticipation of future need. That study found that in some states, families would add their children to waiting lists for people with intellectual or developmental disabilities (I/DD) at a young age, assuming that by the time they reached the top of the waiting list, their children would have developed the immediate need for services. Many of those waivers offer comprehensive HCBS packages that include supported employment, supportive housing, or round-the-clock services. Among the eight states that do not screen people for eligibility on any lists, six have only waiting lists, one (Texas) has only interest lists, and one (Washington) uses both. (Illinois does not establish eligibility until selection but does a preliminary evaluation of eligibility prior to placing someone on the list.)

Between 2023 and 2024, several states made changes to their waiting list policies that resulted in notable changes in the number of people on a specific waiting list:

• Illinois implemented a new law requiring school staff to discuss services for children with developmental disabilities in certain situations. The number of people on those two waiting lists increased from 14,444 to 15,905.
• Iowa implemented a new process for assessing people’s need for services to move people with emergent needs higher on the waiting lists for waivers serving seniors/adults with physical disabilities and people with mental health needs. The number of people on the mental health waiting list increased from 802 to 1,128 and on the seniors/adults with physical disabilities waiting list increased from 9,684 to 10,508.
• For its I/DD waiver serving children with Autism, Maryland added a screening call for applicants to ensure that children have an Individualized Family Service Plan or Individualized Education Program, and at least 15 hours each week of special education or related services prior to adding people to the waiting list. The change reduced the number of people on the waiting list from 6,431 to 5,280.

Who is on waiting lists for HCBS?

Most people on waiting lists have intellectual or developmental disabilities (I/DD), particularly in states that do not screen for waiver eligibility before placing someone on a waiting list. People on waiting lists for waivers serving people with I/DD (which include waivers specific to people who have Autism) comprise 89% of waiting lists in states that do not screen for waiver eligibility, compared with 49% in states that do determine waiver eligibility before placing someone on a waiting list (Figure 3). People with I/DD comprise almost three-quarters (73%) of the total waiver waiting list population. Seniors and adults with physical disabilities account for one-quarter (24%), while the remaining share (3%) includes children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, people with mental illness, and people with HIV/AIDS. People who are on HCBS waiting lists are generally not representative of the Medicaid population or the population that uses HCBS. Most people on waiting lists have I/DD, but KFF analysis shows that people with I/DD comprise fewer than half of the people served through 1915(c) waivers (the largest source of Medicaid HCBS spending).

How long do people on HCBS waiting lists wait to access services and do they have access to HCBS while waiting?

In 2024, people on the waiting or interest lists accessed services after an average of 40 months (32 of 40 states responding), down from 45 months in 2021, but up from 36 months in 2023. People with I/DD waited the longest for services, 50 months on average. The average waiting period for other waiver populations ranged from 6 months for waivers targeting individuals with mental illness to 44 months for waivers that serve children. People with I/DD residing in states that do not screen for eligibility wait longer for services than people with I/DD residing in states that do screen for waiver eligibility (70 months versus 43 months, on average).

Most people on waiting or interest lists are eligible to receive other types of HCBS while they wait. Among the 710,000 people on lists for waiver services in 2024, living arrangements are unknown for more than 560,000. Among the people whose living arrangements are known, 98% (147,000) live in the community and 2% (3,300) live in institutional settings. While waiting for waiver services, people living in the community are likely to be eligible for other HCBS through Medicaid state plans. Of the over 4 million people who use HCBS, KFF estimates that roughly half use services provided through the Medicaid state plan, such as personal care to help with bathing or preparing meals, therapies to help people regain or acquire independent living skills, and assistive technology. States may not use waiting lists to restrict the number of people eligible to use such services and over 80% of people on HCBS waiting lists are eligible for personal care or other state plan services. They would not, however, have access to more specialized services such as supported employment or adult day care. People on waiting lists who receive state plan services may also have fewer hours of personal care than they would in a waiver program, or they may not have assistance with some of the activities they need help with such as bathing, dressing, preparing meals, or managing medication.

How are workforce shortages and changes in federal policy affecting HCBS waiting lists?

Although waiting lists may reflect states’ budget constraints, states also use waiting lists to manage shortages of HCBS workers, and with ongoing workforce shortages, it may be difficult to meaningfully reduce waiting lists. Rhode Island and West Virginia newly reported waiting lists because of workforce shortages. In Rhode Island, the waiting list captures people who are eligible for and enrolled in their 1115 waiver but are not receiving home care because of provider shortages. The state noted that provider shortages differ across communities, and that some people waiting for the authorized services might be living in institutions and waiting to transition to community living. West Virginia’s new waiting list for their mental health waiver reflects a lack of workers accepting new patients. Workforce shortages are not unique to Rhode Island and West Virginia, they were reported by all responding states in KFF’s 2023 survey of HCBS programs. It is unlikely that there will be major changes in states’ waiting lists for HCBS without corresponding changes in the availability of HCBS workers.

As states exhaust expanded federal funding for HCBS from the American Rescue Plan Act (ARPA), addressing waiting lists may become more difficult. Section 9817 of the ARPA provided states with an additional 10 percentage points of federal funding for their Medicaid HCBS expenditures between April 1, 2021, and March 31, 2022. States were required to reinvest this additional federal funding into Medicaid HCBS, resulting in an estimated $37 billion in new HCBS funding. As of December 31, 2023, the number one use of the ARPA funds—accounting for more than $26 billion of the planned $37 billion in new funding—was for workforce recruitment and retention. The second largest allocation (an additional $4 billion) was for workforce training. The end of extra workforce-oriented funding could exacerbate workforce challenges, potentially increasing waiting lists, and states planned to spend almost $2 billion directly on reducing or eliminating waiting lists.

The additional ARPA funding will end in most states by March 2025, although 4 states (Missouri, South Dakota, Virginia, and Washington) had already exhausted their funds by August 2024 and 13 states (Alaska, Georgia, Kansas, Maine, Michigan, Montana, North Dakota, New Jersey, New Mexico, Ohio, Pennsylvania, Vermont, and Wisconsin) have received extensions. Three states (California, New Mexico, and Texas), which together accounted for over half of the people on waiting lists in 2024, reported using ARPA funding to reduce or eliminate waiting lists and that continuing those reductions are a top priority. However, it is uncertain how many ARPA initiatives will be sustainable in the long run as the additional federal funds are exhausted.

A new rule on access to Medicaid services will require states to report more information about people waiting for HCBS waiver services starting in July 2027. The new rule requires states to report the number of people who are waiting to enroll in a waiver program, information on whether the people on the list have been screened for eligibility, and the average amount of time people newly enrolled in the waiver over the past 12 months had spent waiting to enroll. Although the regulation does not mention interest lists, referral lists, or registries, the preamble to the rule indicates CMS’ intent for states to report all types of lists.

Recognizing that waiting lists are an imperfect measure of unmet need, the rule also requires states to report two new measures related to access to care for people newly receiving waiver services. For people who began receiving waiver services in the past 12 months, states must also report: (1) the average length of time between approval for homemaker, home health aide, personal care, and habilitation services and the start of services and (2) the percent of authorized hours that were provided. (States may report the latter two measures for a “statistically valid” random sample of recipients.)

Despite the enhanced data states will be required to report, waiting list and waiver information will remain imperfect measures of unmet need. None of the new data will reflect how long it takes for people to receive HCBS provided through the Medicaid state plan, or how comprehensive those services are. The new data also do not capture the number of people whose authorized services are below needed levels because of hourly or dollar caps on the amount of HCBS they can receive. With most people on waiting lists still eligible for state plan services, understanding what services they receive while waiting is also a dimension in understanding how acute the needs are among people on waiting lists. More broadly, the waiting list numbers, and associated requirements, apply to waiver services only, which are optional for states to provide. New data will offer insight into unmet needs among people receiving and waiting for optional services, but there will still be little information about people who need HCBS but are not receiving care.

More than 6 million people use paid long-term services and supports (LTSS) delivered in home and community-based settings and more than 2 million people use LTSS delivered in institutional settings, according to CBO estimates. LTSS encompass the broad range of paid and unpaid medical and personal care services that assist with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medication, and housekeeping). The 8 million people using LTSS only includes people requiring ongoing or maintenance therapy. Many others use similar services on a shorter-term or intermittent basis, such as care provided through the Medicare home health and skilled nursing facility benefits. Direct care workers play a pivotal role in providing these services. They perform demanding, high-stress work for low wages and often no benefits.

This analysis uses the 2022 American Community Survey to provide an overview of demographic characteristics, wages, and health insurance coverage of direct care workers, which include home health aides, personal care aides, nursing assistants, licensed practical nurses (LPNs), and registered nurses (RNs). It focuses in particular on direct care workers in nursing facilities, residential care facilities, and home health as well as those that provide services or work in settings that provide nonresidential services for older adults and younger adults with disabilities (see Methods). In doing so, we examine the direct care workforce broadly and differences across job classifications and settings of work. Key takeaways include:

• There are nearly 3 million direct care workers who are predominantly female (87%) and low-wage (65%); over one-quarter are Black (28%) and over four in ten are 50 years old or more (41%) (Figure 1).
• Direct care workers work across a variety of settings and include personal care aides, nursing assistants, home health aides, LPNs, and RNs (Figure 2).
• Home health aides, personal care aides, and nursing assistants (collectively, “aides”) and LPNs are more likely to be under 35, Black or Hispanic, low-wage workers, uninsured, or covered by Medicaid when compared with RNs (Figure 3).
• Nursing facilities and residential care facilities have higher shares of nurses (LPNs and RNs) when compared to home health settings and services for older adults and younger adults with disabilities (collectively, “home and community-based settings”) (Figure 4).
• Direct care workers in home and community-based settings are more likely to be noncitizens and work part-time when compared to those in nursing facilities and other residential care settings (Figure 5).

There have been longstanding challenges finding enough workers to provide LTSS for people who need such services, and the COVID-19 pandemic exacerbated those issues considerably. In a 50-state survey of officials administering Medicaid HCBS programs, nearly all responding states reported they were experiencing shortages of direct support professionals, personal care attendants, and/or home health aides. The adequacy of staffing in nursing facilities has also been a longstanding issue.

In response to workforce issues, the federal and state governments have taken action to support direct care workers. Section 9817 of the American Rescue Plan Act (ARPA) provided states with an additional 10 percentage points of federal funding for their Medicaid HCBS expenditures that occurred between April 1, 2021, and March 31, 2022. States were required to reinvest the additional federal funding in Medicaid HCBS, resulting in an estimated $37 billion of new HCBS funding. As of December 31, 2023, the number one use of the ARPA funds—accounting for more than $26 billion of the planned $37 billion in new funding—was for workforce recruitment and retention. The second largest use (an additional $4 billion) was for workforce training. Other uses of funding include quality improvement activities and reducing or eliminating HCBS waiting lists.

The Biden-Harris Administration finalized two rules aimed at addressing shortages of direct care workers: (1) the first-ever requirements for nurse staffing levels in nursing facilities, and (2) a rule governing access to Medicaid services with several provisions to strengthen the HCBS workforce, including requiring states to spend least 80% of total Medicaid payments for certain HCBS on compensation for direct care workers, a provision that will not take effect until 2029. Many states have adopted payment rate increases for HCBS providers and nursing facilities with the goal of boosting staffing levels, as reported to KFF in a 2023 survey. Vice President Harris also recently put forth a proposal that would establish a new Medicare home care benefit, among other changes. Although the proposal does not yet have specifics, it proposes improvements for care workers via access to better wages.

In 2022, there were nearly 3 million direct care workers who provided LTSS to people ages 65 and older and people under 65 with disabilities. These workers were predominantly female (87%) and low-wage (65%); over one-quarter were Black (28%) and over four in ten were age 50+ (41%) (Figure 1). Nearly one in three were part-time workers, and about one in ten were noncitizens, uninsured, and/or lived in rural areas. These demographic characteristics are all somewhat more common among direct care workers than among other working adults (Appendix Table 1).

Direct care workers provide care across various settings: 58% worked in home health settings or provided nonresidential services for seniors and people with disabilities (collectively, “home and community-based services” or “HCBS”), 29% worked in nursing facilities, and the remaining 13% worked in residential care facilities (Figure 2). Nursing facilities are the most medically-oriented institutional settings, providing both short-term skilled nursing and long-term maintenance care services. Residential care facilities include a variety of settings – some institutional and some community-based – and are, as a group, less institutionalized than nursing facilities. HCBS are provided in people’s homes and other community-based settings (Box 1).

Over three-quarters (77%) of direct care workers were personal care aides, nursing assistants, or home health aides (collectively “aides”) and the remaining quarter (23%) were registered nurses (RNs) or licensed practical nurses (LPNs) (Figure 2). Direct care worker responsibilities vary, with some workers primarily providing personal care services, some providing primarily medical care, and some providing a mix of both. Aides tend to provide mostly personal care services whereas RNs provide mostly medical care, and LPNs provide both types of services (Box 1). The educational requirements for LPNs and, especially, RNs, are greater than the requirements for aides on account of the more medical nature of their duties.

Compared with registered nurses, higher percentages of aides and LPNs are younger, Black or Hispanic, low wage, and covered by Medicaid or uninsured (Figure 3). Nearly one in three aides (31%) and over one in four LPNs (27%) are under 35 years old, compared with just one in five RNs (20%). Over half of all aides (52%) and nearly four in ten LPNs (39%) are Black or Hispanic, compared to just 25% of RNs. RNs are the highest paid direct care workers and aides are the lowest-paid direct care workers, with over three-quarters (76%) of aides reporting wages under $35,000. In comparison, just one-fifth (21%) of RNs report wages of less than $35,000. LPNs’ wages are higher than those of aides but lower than those of RNs. The differences in wages are likely attributable, at least in part, to the fact that the educational requirements are most rigorous for RNs and least rigorous for aides. Aides are also more likely than nurses to work part-time, likely another contributing factor to the wage discrepancies (Appendix Table 1). Aides are twice as likely to be uninsured compared with RNs (12% vs 6%) and four times as likely to be covered by Medicaid (35% vs 9%). LPNs are nearly twice as likely as RNs to be uninsured (11% vs 6%) or be covered by Medicaid (16% vs 9%).

Nursing facilities and residential care facilities have higher shares of nurses compared to home and community-based settings (Figure 4). The percentage of direct care workers who are RNs or LPNs is 43% in nursing facilities, 21% in residential care facilities, and 14% in home and community-based settings. The Biden-Harris Administration released a rule that creates new requirements for nurse staffing levels in nursing facilities, including minimum levels for nurse aides and registered nurses. This rule was highly anticipated as it would create the first-ever federal minimum staffing levels, though even prior to the staffing rule, many states had their own minimum staffing levels. In contrast, a new rule on access to Medicaid services includes several requirements regarding the adequacy of states’ payments for direct care workers in home and community-based settings, but does not establish any minimum staffing levels for such settings.

Direct care workers that work in home and community-based settings are significantly more likely to be noncitizens, work part-time, and have lower wages when compared to those in nursing facilities and other residential care settings (Figure 5 and Appendix Table 1). Among direct care workers in home and community-based settings, 12% are noncitizens compared with 8% in residential care facilities and 6% in nursing facilities. Noncitizens include those who are lawfully present as well as those who are undocumented, though the majority of noncitizen immigrants are lawfully present. Part-time work is also more common among workers in home and community-based settings, with 40% of workers working part-time compared with 22% of nursing facility workers and 24% of residential care facility workers. Direct care workers overall are more likely to be part-time workers than all adult workers (32% vs 16%), which may be part of the reason they are more likely to have wages under $35,000 (64% vs. 38%) (Appendix Table 1). Low wages among direct care workers broadly are a key driver in the high turnover in the workforce, which has spurred action among federal and state policymakers. The Biden-Harris administration finalized a rule aimed at ensuring access to Medicaid services, which included a provision that requires states to spend least 80% of total payments for certain HCBS on compensation for direct care workers. Most states have also increased payments to direct care workers to increase the supply of HCBS workers, though some of those states have indicated that some of those increases are temporary.

Both 2024 presidential candidates have addressed direct care workforce shortages in their party platforms, but questions remain about how the shortages would be addressed. The Republican platform proposals address disincentives that contribute to workforce shortages, but it is unclear what policies a Republican Administration would put forth to achieve those goals. On October 8, 2024, Vice President Harris put forth a proposal that would establish a new Medicare home care benefit, among other changes. Although the proposal is not fully specified, it proposes to lift up care workers by providing access to better wages. If enacted, the Harris proposal would be the first major expansion of Medicare since the Medicare Modernization Act of 2003 that added a prescription drug benefit to the program. Many policy details would have to be worked out as the proposal wound its way through Congress, including questions about eligibility, benefit design, financing, and workforce shortages.

On the heels of three straight years of record high enrollment, the 12^th annual Affordable Care Act (ACA) Marketplace open enrollment season will be another opportunity for more people to gain coverage. It is also an opportunity for people already enrolled to make changes to their health plan. Here are ten things to know about the 2025 open enrollment period.

1. Unsubsidized premiums are increasing modestly, but most enrollees won’t pay that. Premiums for benchmark silver plans, which are the basis for subsidy calculations, are increasing by 4% on average, while lowest-cost bronze premiums are up by 5%. Premium increases are steepest in Vermont, Alaska, and North Dakota, where unsubsidized monthly costs are growing by 10% or more. Meanwhile, low-cost plan premiums are falling in 9 states, including by double digits in Louisiana. (State-level data are here.) A Peterson-KFF Health System Tracker analysis found that rising hospital costs and increased use of GLP-1 drugs are among factors contributing to higher premiums. On average nationally, a 40-year-old’s benchmark silver premium would be $497 per month without a subsidy. However, the vast majority (92%) of Marketplace shoppers receive a subsidy, and with enhanced subsidies most of them can find a plan with a premium of less than $10 per month. Because these subsidies cap monthly payments at a share of an enrollee’s income, the vast majority of Marketplace enrollees will not have to pay a premium increase.
2. This could be the last year of enhanced subsidies. Enhanced subsidies under the Inflation Reduction Act (IRA) are set to expire at the end of 2025. Initially introduced in the American Rescue Plan Act, these subsidies increased premium support for existing enrollees and expanded eligibility to those earning above 400% of the poverty level. These subsidies, which have driven the record-high enrollment in Marketplaces, will remain in place for the duration of 2025, but would require an act of Congress to extend them in 2026 or beyond. If these enhanced subsidies expire, the original ACA subsidies will remain in place but premium payments (net of subsidies) are expected to double or more in a number of states in 2026.
3. Marketplace shoppers will have more choice of insurers. On average, across states, 9.6 insurers are participating on the ACA Marketplaces, which is higher than in any prior year (state data are here). In 2025, 97% of Healthcare.gov enrollees will have 3 or more ACA insurers, up from 78% of enrollees in 2021. Several insurers are entering into new states in 2025. For example, UnitedHealth Group is expanding into 4 new states and 119 additional counties in 13 of the 26 states where they already participate. Centene (Ambetter) also announced it is expanding into 60 new counties across 10 states. With ACA Marketplace signups reaching record highs and strong financial performance for participating insurers, the ACA Marketplaces have become a more appealing market than they had been in 2018, when insurer participation was at a low point.
4. Open enrollment is from November 1, 2024 to January 15, 2025 in most states. In accordance with new federal rules encouraging states to standardize their open enrollment periods, the 2025 open enrollment period will now begin on November 1, 2024 in all states except Idaho, where open enrollment began October 15. Open enrollment will end on January 15, 2025 in most states, except Idaho (December 16, 2024), Massachusetts (January 23), California, New Jersey, New York, Rhode Island, and DC (all January 31).
5. New states are transitioning to a State Based Marketplace. Georgia will be transitioning to a State Based Marketplace for the 2025 plan year. This will bring the total number of state-based marketplaces to 20. Illinois is scheduled to transition into a state-based marketplace for the 2026 plan year and will stop using the federal platform in November 2025. For now, Illinois residents should continue to use Healthcare.gov.
6. The federal government is taking new actions to combat fraud. The federal government has received numerous complaints from consumers who have been the victims of fraud, where insurance brokers have signed them or switched their plans without their consent. The federal government has taken enforcement actions to combat this fraud (including suspending certain brokers) and has applied Healthcare.gov standards on web brokers and direct enrollment entities to State-Based Marketplaces.
7. Changes to short-term plans are taking effect. The Biden Administration is reversing the Trump Administration’s expansion of short-term health insurance plans that are not ACA-compliant and can discriminate against people with pre-existing conditions. The new rules require that short-term plans be limited to 4 months total, and must now come with a consumer notice in all online and written marketing, enrollment application and other materials stating that the coverage “is NOT comprehensive health coverage.” Short-term plans are not sold on the ACA Marketplaces, but some consumers have reported feeling misled into believing they were buying comprehensive plans. A similar disclaimer notice must be included in materials for fixed indemnity policies sold to consumers off Marketplace. These are plans that pay a specific amount if someone is sick or hospitalized. Like short-term plans, fixed indemnity plans do not have to meet most of the ACA’s consumer protections. Written and online information must now say that this fixed indemnity coverage “is NOT health insurance.” While a recent lawsuit challenges the new notice for fixed indemnity plans, as of now it is still required.
8. Special enrollment opportunities are changing. HealthCare.gov enrollees with incomes up to 150% of poverty will continue to have a year-round special enrollment opportunity, though this is optional for state-based marketplaces. However, the “Medicaid Unwinding” special enrollment period is ending November 30, 2024. In addition, starting in 2025, all consumers who choose an ACA Marketplace plan during a special enrollment period (whether a federal or state-based marketplace) will have their coverage begin on the first day of the month following their plan selection. (In the past, in some state-based Marketplaces, if a consumer chose a health plan during a special enrollment period after the 15th of the month, coverage began on the first day of the second month.)
9. Deferred Action for Childhood Arrivals (DACA) recipients will be allowed to sign up for subsidized coverage through the Marketplace in 2025. A new Biden-Harris administration rule finalized earlier this year expands eligibility for DACA recipients by redefining “lawfully present.” Starting November 1, 2024, DACA recipients will be allowed to sign up for coverage through the Marketplace or through the Basic Health Program. They will have access to premium tax credits and cost sharing reductions, even if their income is below 100% FPL. There will be a 60-day special enrollment period starting on November 1, 2024 that allows newly eligible DACA recipients to sign up for coverage. Consumers who enroll during November 2024 can have their new Marketplace coverage begin as early as December 1, 2024. While there is pending litigation, DACA recipients can still enroll.
10. Network adequacy rules must be met. Starting in 2025, federal Marketplace plans will be required to meet maximum appointment wait-time standards (e.g., no more than a 10-business day wait for a behavioral health appointment, a 15-business day wait for routine primary care appointments, and 30 business days for non-urgent specialty care appointments). These plans are expected to have a “secret shopper” survey conducted starting in 2025 to test whether in-network providers are meeting these appointment wait times for new patients seeking primary and behavioral health care.

The pandemic-era continuous enrollment provision sustained Medicaid for millions of enrollees, making it easier for children to get on and stay on coverage. Between February 2020 and April 2023 with continuous enrollment in place, child enrollment in Medicaid and CHIP increased by 20%. While national child enrollment has since nearly returned to pre-pandemic levels, state child eligibility expansions may help to bolster coverage in the aftermath of the unwinding of the continuous enrollment provision.

During the pandemic, states took advantage of a range of flexibilities to facilitate access to Medicaid and CHIP coverage, such as eliminating or waiving premiums for Medicaid and CHIP. Following the end of continuous enrollment, recent federal policies have sought to extend coverage protections for children. The Consolidated Appropriations Act, 2023, required all states to implement 12-month continuous eligibility for children beginning on January 1, 2024. Expanding on that continuous eligibility policy to provide more stable coverage over a longer period of time for vulnerable populations, the Centers for Medicare and Medicaid Services (CMS) has encouraged states to seek approval to provide multi-year continuous eligibility for children through Section 1115 demonstration authority. CMS also published an Eligibility and Enrollment final rule earlier this year that eliminates lock-out periods for failure to pay premiums in CHIP and requires smoother transitions between Medicaid and separate CHIP programs, among other changes.

This policy watch identifies states that have expanded access to Medicaid and CHIP coverage for children or have adopted policies to make it easier for children to maintain coverage since the start of the pandemic. Data are from annual surveys of state Medicaid and CHIP program officials conducted by KFF and the Georgetown University Center for Children and Families.

Facilitating Medicaid/CHIP Coverage for Children

Building on the experience with continuous enrollment and other pandemic-era protections, since 2020 half of states (25) have taken steps or are planning actions to expand coverage or reduce enrollment barriers for children (Figure 1). Four states expanded coverage by increasing child income eligibility for Medicaid and CHIP and/or adopting the federal option to cover lawfully-residing immigrant children without the 5-year wait. Eighteen states have taken steps or are planning actions to reduce enrollment barriers for children, such as by pursuing multi-year continuous eligibility waivers for young children, eliminating or continuing to suspend premiums, or transitioning from a separate CHIP program to a CHIP-funded Medicaid expansion program. Three states have taken steps to both expand coverage and reduce enrollment barriers.

Expanding Coverage

Four states recently expanded coverage by increasing income eligibility levels for children in Medicaid and CHIP (Figure 2). In 2022 the Kansas legislature increased CHIP eligibility to 255% of the federal poverty level (FPL). In the past year, Arizona increased eligibility from 205% FPL to 230% FPL in its separate CHIP program, Maine raised Medicaid child eligibility from 213% FPL to 305% FPL, and North Dakota expanded Medicaid child eligibility to 205% FPL, up from 175% FPL. With these changes, Idaho is the only state with a child eligibility level below 200% FPL. Across all states, the median children’s upper eligibility level is 255% of the Federal Poverty Level (FPL) ($65,841 for a family of three in 2024). Twenty states now cover children at or above 300% FPL.

Since 2020, three states have newly taken up the federal option to cover lawfully residing immigrant children without the 5-year wait. Most lawfully residing immigrants must wait five years after they obtain qualified status before they can enroll in Medicaid or CHIP. However, states have the option to waive the five-year waiting period for lawfully residing children, otherwise known as the Immigrant Children’s Health Improvement Act (ICHIA) option. Georgia, Michigan, and New Hampshire recently adopted this option, joining 34 other states and the District of Columbia that adopted prior to 2020 (Figure 3). Indiana plans to eliminate the waiting period for children and pregnant individuals in 2025.

Six states (Connecticut, Maine, New Jersey, Rhode Island, Utah, and Vermont) newly provide fully-state funded coverage to all income-eligible children regardless of immigration status since 2020. These programs extend coverage to immigrant children who are ineligible for federally funded coverage because they do not have qualified status or because they are undocumented. Connecticut only covers children under age 13 and Utah caps the number of children who can be enrolled. Six states (California, Illinois, Massachusetts, New York, Oregon, Washington) and the District of Columbia began providing comprehensive state-funded coverage for children regardless of immigration status prior to the COVID-19 public health emergency. By 2025, Colorado and Minnesota plan to offer state-funded Medicaid-like coverage to income-eligible children regardless of immigration status.

Reducing Enrollment Barriers

Thirteen states have federal approval or are in the process of developing waivers to expand upon the 12-month continuous eligibility requirement and implement multi-year continuous eligibility for young children. Continuous eligibility has been shown to reduce Medicaid disenrollment and “churn” rates (rates of individuals temporarily losing Medicaid coverage and then re-enrolling within a short period of time). When individuals churn on and off coverage, the gaps in coverage may limit access to care or lead to delays in getting needed care, which can be especially problematic for young children who receive frequent screenings and check-ups. In September 2022, CMS approved Oregon’s waiver to implement continuous eligibility for children from birth to age six as well as 24 months of continuous eligibility for nearly all enrollees ages six and older. Since then, CMS has approved multi-year continuous eligibility requests for children in Washington and New Mexico. Six states have submitted section 1115 waivers and four states are in the process of developing waivers to implement multi-year continuous eligibility for young children (Table 1).

Twelve states have eliminated Medicaid or CHIP premiums since 2020 or continue to suspend premiums, reducing financial barriers to coverage for children. While new rules related to 12-month continuous eligibility prohibit states from disenrolling children because of failure to pay premiums during the continuous eligibility period, premiums can still act as a barrier to enrollment because states can require families to pay the initial premium before they can enroll their child. During the COVID-19 public health emergency, most states that charged premiums suspended or waived them for some or all enrollees. Nine states — California, Colorado, Illinois, Maine, Maryland, Michigan, New Jersey, North Carolina, and Utah — have eliminated Medicaid and/or CHIP premiums since 2020. Utah eliminated CHIP premiums in July but increased other cost-sharing requirements at the same time (Figure 4). In three states that charged premiums prior to the pandemic (Arizona, Delaware, and Vermont), premiums remain suspended. Delaware is awaiting CMS approval to discontinue premiums entirely and Vermont has suspended premiums indefinitely. A total of 18 other states still charge premiums. Twenty states and the District of Columbia did not charge premiums or enrollment fees prior to 2020.

Since 2020, a total of five states (Illinois, Maine, North Carolina, Kentucky, and Wyoming) have transitioned all child enrollees from the state’s separate CHIP program to a CHIP-funded Medicaid expansion program. Rules governing administration of and eligibility processing in separate CHIP programs differ from Medicaid. Sixteen additional states choose to cover all uninsured children eligible for CHIP in Medicaid (known as M-CHIP), but states can also choose to cover uninsured children eligible for CHIP through a separate CHIP program only (2 states) or through a combination of a separate CHIP and M-CHIP (28 states) (Figure 5). Covering CHIP children in Medicaid streamlines administration and provides all children with child-focused EPSDT Medicaid benefits and other Medicaid protections, including limitations on cost-sharing, while operating a separate CHIP allows states to alter benefit packages and delivery systems and provides more flexibility to impose premiums and cost sharing. Covering CHIP children in Medicaid can also prevent children from losing coverage during necessary transitions between Medicaid and separate CHIP programs.

In a recent column, KFF President and CEO Drew Altman wrote that the program most likely to be in the crosshairs if Republicans take control this November is Medicaid because Social Security and Medicare are largely off the table, leaving Medicaid as the likely source for savings needed to pay for proposed tax cuts. Of these three programs, Medicaid and the Children’s Health Insurance Program (CHIP) is the smallest in terms of federal outlays because Medicaid is jointly financed by the federal government and the states, though it covers more people than Medicare or Social Security and still represents a substantial amount of federal spending. In an effort to reduce federal Medicaid spending, Former President Trump has previously supported policies to repeal or weaken the Affordable Care Act (ACA), as well as cap and reduce Medicaid financing. These proposals stand in sharp contrast to proposals that Vice President Harris supports to protect and strengthen Medicaid and the ACA.

Because Medicaid is administered by states within broad federal rules, Medicaid programs and spending vary across states. Total Medicaid spending depends on multiple factors, including the number and mix of enrollees, their use of health care and long-term services and supports, the prices of Medicaid services, and state policy choices about benefits, provider payment rates, and other program factors. Medicaid financing is complex. States are guaranteed federal matching dollars without a cap for qualified services provided to eligible enrollees. The match rate (the share that the federal government pays, known as the federal medical assistance percentage or “FMAP”) varies across states, some services and populations, and sometimes is adjusted during economic downturns:

• FMAP variation across states: The match rate for most Medicaid enrollees is determined by a formula in the law that provides a match of at least 50% and provides a higher federal match rate for states with lower per capita income (up to a cap of 83%). For FY 2025, this ranged from 50% in a number of states to 76.9% in Mississippi. The territories and the District of Columbia have match rates that are set in statute.
• FMAP variation across some services and populations: Most notably, the ACA expansion group is financed with a 90% federal match rate, so states pay 10%. The American Rescue Plan Act included an additional temporary fiscal incentive to states that newly adopt the Medicaid expansion. Family planning services are also reimbursed at a 90% match rate; Indian Health Services (IHS) provided in an IHS facility are reimbursed at 100% match rate.
• FMAP variation during economic downturns: During economic downturns, enrollment in Medicaid grows, increasing state Medicaid costs while state tax revenues typically decline. Due to the federal match, as spending increases during economic downturns, so does federal funding. During the pandemic-induced recession and the two economic downturns prior to the pandemic, Congress enacted legislation that temporarily increased the federal match rate to provide increased support for states to help fund Medicaid and other services. During the pandemic, the enhanced match was tied to a requirement that states provide continuous enrollment for Medicaid enrollees. As a result of the enhanced match rate, state spending during the pandemic declined despite historic increases in Medicaid enrollment. This also illustrates how decreases to the federal match rate have the opposite impact and increase costs for states.

As a result of all of these factors combined, the federal government paid 71% ($573 billion) of the costs of Medicaid ($804 billion) in 2022. This share is slightly higher than historic shares due to the enhanced pandemic match rate, but there is variation across states (Figure 2). The combination of low per capita income and adopting the ACA expansion are both factors in determining the overall share of federal spending on Medicaid. While the federal share of Medicaid spending varies across states, so does the total amount of federal Medicaid dollars coming into the state. States with the largest populations (California, New York, Texas, Pennsylvania, Ohio) receive the most federal Medicaid funding.

Prominent conservative proposals to reduce federal Medicaid spending typically feature one (or a combination) of approaches:

• Converting Medicaid to a block grant, which would provide a fixed amount of federal funding to each state and greater flexibility over eligibility and benefits;
• Capping federal spending on a per enrollee basis;
• Altering the FMAP, such as by eliminating the enhanced match for the ACA expansion group, lowering the FMAP floor, or decreasing the FMAP to 50 percent for all eligibility groups, states, and services; or
• Restricting or eliminating the use of provider taxes, which states use to fund their share of Medicaid spending, and thus reducing federal matching funds.

These approaches for restricting federal Medicaid spending would not result in lower overall costs, but instead would shift costs to states. States would have to make tough choices about whether to reduce coverage, services and provider rates in Medicaid, or whether to raise revenues or cut other state spending. Notably, over half of Medicaid spending is for enrollees who qualify on the basis of age or disability. These enrollees typically use long-term services and supports that are not covered by Medicare or private insurance and extremely expensive to obtain paying out of pocket.

The effect of various Medicaid financing changes would be uneven across states. Certain states (like those that have higher shares of federal spending, adopted expansion, have higher health care costs, populations with worse health status or higher health needs, or states that rely more heavily on intergovernmental transfers or provider taxes) could face more difficulty maintaining their programs.

Significant cuts to Medicaid could also run up against public opinion. Two-thirds of adults in the U.S. say they have had some connection to the Medicaid program and three-fourths of the public have favorable views of the program (with majorities across political parties). In addition, the majority of Medicaid enrollees and the public prefer to keep Medicaid as it is today with the federal government guaranteeing coverage for low-income people, setting standards for who states cover and what benefits people get, and matching state Medicaid spending as the number of people on the program goes up or down. How the public would ultimately view changes to Medicaid would depend on how the debate is framed and what other issues, such as tax cuts, are in play. While Medicaid has not been a prominent part of the public debate during the campaign, it is likely to remain a divisive issue, and the election could have significant consequences for financing and coverage of the program.

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

On May 3, 2024, the Biden-Harris administration published new regulations extending eligibility for Affordable Care Act (ACA) Marketplace coverage to Deferred Action for Childhood Arrivals (DACA) recipients. Under these regulations, the definition of lawfully present would newly include DACA recipients for the purposes of eligibility to purchase coverage through the ACA Marketplaces and to receive premium tax credits and/or cost sharing reductions or to enroll in Basic Health Program (BHP) coverage in states with those programs. The regulation became effective November 1, 2024, allowing for enrollment during the 2025 Open Enrollment Period, which runs from November 1, 2024, to January 15, 2025. The administration estimated that 100,000 uninsured DACA recipients will receive coverage under the new rule. However, due to recent court decisions, DACA recipients in 19 states remain ineligible to enroll in ACA Marketplace coverage. On June 25, 2025, the Centers for Medicare and Medicaid Services (CMS) finalized a rule that will once again 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. This brief provides an overview of the DACA program, discusses its status and potential impacts of the health coverage expansion, and highlights key issues to consider.

Overview of DACA

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. To be eligible, individuals must have arrived in the U.S. prior to turning 16 and before June 15, 2007; be under the age of 31 as of June 15, 2012 (i.e., under age 43 as of 2024); be currently enrolled in school, have completed high school or its equivalent or be a veteran; and have no lawful status as of June 15, 2012. As of June 2024, there were over 530,000 active DACA recipients residing in the U.S. (Box 1).

Prior to the 2024 health coverage expansion, DACA recipients were ineligible for any federally funded health coverage. Previously, individuals with DACA status were not considered lawfully present for purposes of health coverage eligibility and remained ineligible for Medicaid, the Children’s Health Insurance Program (CHIP), and ACA Marketplace coverage despite having a deferred action status, which otherwise qualified for Marketplace coverage. These eligibility restrictions left DACA recipients with the same limited health coverage options as undocumented immigrants, who are ineligible for federally funded health coverage programs. Some states have fully state funded health coverage programs for low-income immigrants regardless of immigration status, including DACA recipients, but they vary in eligibility and scope of benefits.

While most DACA recipients are working and in good health, many face challenges accessing health coverage and care, including high uninsured rates. Based on KFF analysis of federal survey data, a majority of immigrants who are likely eligible for DACA are working and have self-reported excellent or very good health. However, data show that DACA recipients continue have high uninsured rates, reflecting their limited eligibility for coverage, as is the case for likely undocumented immigrants. Overall, half of likely undocumented immigrant adults in the U.S. lack health insurance coverage, significantly higher than their immigrant counterparts who are lawfully present (18%) or naturalized citizens (6%) (Figure 1).

ACA Marketplace Expansion to DACA Recipients

On May 3, 2024, the Biden-Harris administration published new regulations making DACA recipients newly eligible to purchase ACA Marketplace coverage with premium tax credits and cost sharing reductions beginning November 1, 2024. Under these regulations, active DACA recipients would be considered lawfully present for the purposes of health coverage eligibility and will therefore be able to enroll in health insurance plans through the ACA Marketplaces for the first time during the 2025 ACA Open Enrollment Period between November 1, 2024, and January 15, 2025. Income-eligible DACA recipients would also qualify for premium tax credits and/or cost sharing reductions and be able to enroll in BHP coverage in states that have implemented it (currently MN and OR). DACA recipients would be able to start using their new ACA coverage as early as December 1, 2024, under the Special Enrollment Period.

The administration estimated that 100,000 uninsured DACA recipients will receive health coverage under the new rule which will likely result in improved access to care and financial security for DACA recipients and their families and ultimately improve health outcomes. Data from the 2023 KFF/LA Times Survey of Immigrants show that immigrants who lack health insurance coverage face a range of barriers accessing and using health care in the U.S. Uninsured immigrant adults are about three times as likely as their counterparts with insurance coverage to report not having a usual source of care other than an emergency room (42% vs. 13%) and not having had a doctor’s visit in the past 12 months (52% vs. 18%); they also are about twice as likely to report skipping or postponing care in the past 12 months (36% vs. 19%) (Figure 2). Uninsured immigrant adults also are more likely than those with insurance coverage to report unfair treatment by a health care provider and to report challenges obtaining respectful and culturally competent health care.

The Trump administration finalized new regulations that would make DACA recipients ineligible for ACA Marketplace coverage. On June 25, 2025, the Centers for Medicare and Medicaid Services (CMS) finalized a rule that will once again 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. Thousands of DACA recipients living and working across the U.S. could lose access to affordable health coverage options due to these new regulations.

Issues to Consider

The future of the DACA program remains uncertain due to ongoing litigation and recent court rulings. Subject to ongoing litigation and court rulings challenging the legality of the DACA program, while the Department of Homeland Security (DHS) is accepting first-time DACA requests, it is unable to process them. However, DHS is continuing to process DACA renewal requests and related requests for employment authorization while it awaits a decision by the court. President Trump tried to end DACA during his first term but was blocked by the Supreme Court in 2020. His campaign has said that he will try again to eliminate DACA protections if elected. However, in an interview, President 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. However, in June 2025, the Centers for Medicare and Medicaid Services finalized new regulations that exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, which would make DACA recipients across the U.S. ineligible for purchasing coverage through the ACA Marketplaces.

The number of people who are eligible for DACA has been dwindling over time and there is no pathway to citizenship for DACA recipients. Given its eligibility requirements as well as legal challenges to the program, the number of people who can receive DACA has decreased over time from a high of 700,000 in 2017 to roughly 530,000 as of 2024. The American Dream and Promise Act of 2023 would provide a pathway to lawful permanent resident status and eventually citizenship for undocumented immigrants who were brought to the U.S. as children and who meet certain requirements. However, different versions of the Act have been proposed to Congress since 2001 but have never been passed suggesting that there is no clear pathway to passage of such legislation.

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

• Neglected tropical diseases (NTDs) are a set of infectious diseases grouped together due to their often chronic, disfiguring, and stigmatizing impact; their close association with poverty; and their geographic overlap.
• While there are numerous NTDs in the world, the World Health Organization (WHO) has highlighted over 20 that particularly impact poor, politically marginalized populations; cause significant morbidity and/or mortality; are neglected by research; and can be controlled using effective methods.
• In recent years, the U.S. government (U.S.) has affirmed its support for global NTD goals, including eradicating, eliminating, and controlling several NTDs.
• The U.S. has become more involved in global NTDs since launching its first NTD program in 2006 at the U.S. Agency for International Development (USAID) with a focus on five NTDs that are among the most prevalent NTDs globally but can be controlled and even eliminated with low-cost and effective interventions.
• Total U.S. funding for NTDs increased from $15 million in FY 2006, which was the first year Congress appropriated funds for NTDs, to approximately $115 million in FY 2024.

Global Situation

NTDs have garnered greater attention from the U.S. government and other global donors over the past nearly 20 years, spurred on by growing recognition of their potential threat to the achievement of the Millennium Development Goals (MDGs) and their successor, the Sustainable Development Goals (SDGs). In addition, the development and expansion of an integrated NTD treatment approach capitalized on the availability of safe and effective treatments for the most prevalent NTDs.

NTDs are among the top 12 major communicable disease causes of ill health globally, behind lower respiratory infections, diarrheal diseases, tuberculosis, malaria, and HIV, among others.¹  NTDs are grouped together due to their often chronic, disfiguring, and stigmatizing impact; their close association with poverty; and their geographic overlap.

Impact

NTDs have low mortality but high morbidity rates. Approximately one-fifth of the world’s population (1.6 billion people) require NTD interventions (both preventive and curative). Each year, approximately 200,000 people die as a result. Infection with a NTD may result in severe disability, disfigurement, blindness, and malnutrition, and individuals are often infected with multiple NTDs simultaneously. The health impact of NTDs negatively affects economic development, hampers educational achievement and cognitive development, and reduces agricultural productivity and food security.

NTDs span the globe; in 2021, 179 countries reported at least one case of NTDs. However, the majority of the NTD burden is concentrated in low- and middle-income countries in Africa, Asia, and Latin America. People living in areas lacking access to clean water, health services, and adequate housing and sanitation, in both rural and urban settings, are among the most impacted by NTDs. Women and children in particular are most at risk of infection, since they are more exposed to NTDs and more often face barriers to accessing treatment, particularly those living in remote areas.

Major NTDs

While there are numerous NTDs in the world, the World Health Organization (WHO) has highlighted 21 that particularly impact poor, politically marginalized populations; cause significant morbidity and/or mortality; are neglected by research; and can be controlled using effective methods.² 

Five “tool-ready” NTDs, those that can be controlled and even eliminated due to the availability of low-cost and effective interventions, are among the most prevalent NTDs (see Table 1). This subset of NTDs is increasingly the focus of donor efforts, including USAID’s NTD Program.

Interventions

A number of strategies have been successful in controlling and, in some areas, even eliminating certain NTDs. Although many interventions are relatively inexpensive, challenges persist in delivering tools and services to the most at-risk populations.

The recommended strategy for NTD elimination is an integrated control approach, often targeting multiple NTDs simultaneously, through mass drug administration (MDA) and other community-level transmission control measures. MDA is the regular distribution of medicines to entire at-risk populations, regardless of infection status. The use of MDA allows programs to reach more people and improve the likelihood of suppressing transmission. Implementation of MDA is often made possible through donations from pharmaceutical companies. In addition to MDA, other measures such as promoting clean water, sanitation, and hygiene (WASH), good veterinary public health, and vector control also play critical roles in addressing the underlying causes of NTDs.

Global Goals

As NTDs began to receive greater attention and global efforts have expanded over the past nearly twenty years, major global NTD goals have been set recently through:

SDG 3: End the Epidemic of NTDs

Adopted in 2015 by all member-states of the United Nations, the Sustainable Development Goals (SDGs) included a target of ending the epidemic of NTDs by 2030 as part of SDG 3 (“ensure healthy lives and promote well-being for all at all ages”). The SDGs are the successor to the Millennium Development Goals (MDGs), which did not include a specific NTD indicator.

WHO Roadmap for NTDs 2021-2030

The Roadmap outlines targets and strategies for global NTD control, elimination, and eradication efforts from 2021 through 2030. Among its goals are the eradication (permanent reduction of a disease’s worldwide incidence to zero with no risk of reintroduction) of dracunculiasis (Guinea worm disease) and yaws and the elimination (interruption of transmission in a defined geographical area(s), marked by a reduction of incidence to zero with a minimal risk of reintroduction) of human African trypanosomiasis (gambiense), leprosy, and onchocerciasis by 2030. In addition to the Roadmap’s eradication and elimination targets, it also lays out overall targets including 90% reduction in the number of people requiring interventions for NTDs, a 75% reduction in DALYs related to NTDs, and at least 100 countries eliminating at least one NTD.

Kigali Declaration on Neglected Tropical Diseases

In 2022, the Kigali Declaration, endorsed by key public and private stakeholders, laid out global NTD goals (affirming those in the SDGs and Roadmap) and commitments. It aims to improve partner efforts to coordinate and collaborate across their respective efforts in order to help eliminate NTDs. Among its goals are the elimination of at least one NTD in 100 countries and reduction of people requiring NTD interventions by 90% by 2030. These goals are in alignment with some of the WHO Roadmap goals. The Kigali Declaration is the successor to the London Declaration on NTDs (2012-2020).

U.S. Government Efforts

Over the past nearly twenty years, U.S. attention to and funding for NTDs have increased markedly. Historically, the U.S. government’s response to NTDs was relatively limited, focusing largely on research and surveillance conducted by the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DoD). In 2006, Congress first appropriated funds to the U.S. Agency for International Development (USAID) for integrated NTD control, after which the agency launched its NTD Program. In 2008, the U.S. announced expanded NTD efforts, building on USAID’s NTD Program. In 2012, the U.S. signed onto the London Declaration, and shortly afterward, the U.S. adopted a longer term global health goal of protecting communities from infectious diseases and highlighted the important role of NTD efforts in achieving this goal.

Organization

USAID serves as the lead implementing agency for U.S. NTD efforts. Several other agencies, including NIH, CDC, DoD, and the U.S. Food and Drug Administration (FDA), are also involved in responding to NTDs worldwide. Collectively, U.S. activities have helped reach more than 30 countries.³ 

USAID

USAID’s NTD Program targets five “tool-ready” NTDs (see Table 1). Having scaled up from five countries in 2006, it now spans 26 countries, mostly in sub-Saharan Africa and Southeast Asia, and has one regional program, which reaches an additional eight countries in the Americas. Using interventions such as MDA, the U.S. supports endemic countries in scaling up and developing their capacity to manage NTD control programs. The program’s goals are to control and eliminate diseases, strengthen the NTD scientific and program evidence, support sustainable country-led programs, and expand partnerships with key stakeholders.

Other U.S. Efforts

Other agencies, including NIH, CDC, and DoD, support NTD control efforts through implementation assistance of NTD interventions, technical assistance to help develop guidelines for NTD control and improve monitoring systems, and research and development (R&D) activities focused on developing new NTD tools and encouraging the adoption of existing NTD tools. These efforts include a focus on the USAID-targeted NTDs, as well as others (such as dengue, and neglected tropical fungal diseases including mycetoma, chromoblastomycosis, and sporotrichosis, among others). In addition to these efforts, the FDA administers the congressionally-authorized Tropical Disease Priority Review Voucher Program, which provides for a voucher to a developer that is awarded at the time of approval for a product meant to prevent or treat an eligible NTD. The voucher, which can subsequently be redeemed for a priority review of an application for another product, is designed as an incentive for the private sector to invest in new NTD drug development. A number of vouchers have already been awarded by the FDA.

Multilateral and Other Efforts

U.S. NTD efforts are coordinated with a number of international partners (like WHO and private sector entities), regional strategies (like the Regional Strategic Framework for sustaining, accelerating, and innovating to end neglected tropical diseases in the South-East Asia Region, 2024-2030), and funding mechanisms (like the END Fund). For example, the pharmaceutical industry donates several NTD drugs to many of the countries that also receive USAID NTD support; USAID has estimated the value of these donations in U.S.-supported countries at approximately $29.9 billion since 2007.

Funding

Congress first appropriated funding for NTDs in FY 2006, and while total U.S. funding for NTDs has risen overall since then (from $15 million in FY 2006 to approximately $115 million in FY 2024), funding was flat at around $100 million for several years (see Figure for most recent funding data). The Biden Administration has requested level funding for NTDs for FY 2025. U.S. funding for NTDs is provided through the Global Health Programs account at USAID.

1. Based on WHO, “Global Health Estimates 2021: Global DALYs by cause, age, and sex, 2000-2021,” Global Health Estimates 2021 Summary Tables, https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/global-health-estimates-leading-causes-of-dalys. ↩︎
2. WHO, “Global report on neglected tropical diseases 2024,” https://www.who.int/publications/i/item/9789240091535. The list of NTDs are: Buruli ulcer; Chagas disease; dengue and chikungunya; dracunculiasis (Guinea worm disease); echinococcosis; foodborne trematode infections; human African trypanosomiasis (sleeping sickness); leishmaniasis; leprosy; lymphatic filariasis; mycetoma, chromoblastomycosis and other deep mycoses; noma, onchocerciasis (river blindness); rabies; scabies and other ectoparasites; schistosomiasis; snakebite envenoming; soil-transmitted helminths; taeniasis and cysticercosis; trachoma; and yaws. ↩︎
3. Other US. efforts may reach additional countries. ↩︎