Introduction

Over the past few years, a plethora of research has linked climate change to adverse health outcomes around the world. People may be exposed to climate-related health risks through a variety of pathways, including through their work. The Centers for Disease Control and Prevention (CDC) and Environmental Protection Agency (EPA) note that disproportionate exposure to adverse climate change-related conditions can exacerbate existing health and safety issues among certain workers and could potentially cause new and unanticipated harms. Risk of climate-related health impacts varies across occupations, with many of the same underlying drivers of disparities in climate vulnerability overall reflected in the occupational sector.

This analysis identifies occupations that are at increased risk of climate-related health impacts, examines the characteristics of workers in these jobs, and discusses the implications of these findings. It is based on KFF analysis of the 2022 Current Population Survey Annual Social and Economic Supplement (CPS ASEC) for nonelderly adult workers ages 19-64. Differences in demographic and socioeconomic characteristics described in the text are statistically significant at p<0.05. In sum, this analysis finds:

• We estimate there are over 65 million nonelderly adult workers in occupations at increased risk for climate-related health risks, accounting for over four in ten of nonelderly workers. These include jobs with increased exposure to heat, decreased air quality, extreme weather, vector-borne and infectious diseases, and environmental contaminants. Some examples of at-risk jobs include agricultural and construction workers and emergency responders.
• Among nonelderly adult workers, many people of color, noncitizen immigrants, and workers with lower educational attainment and income levels are disproportionately likely to be employed in jobs with increased climate-related risks. Nonelderly Hispanic (58%), Black (51%), and Native Hawaiian or Pacific Islander (NHOPI) (52%) workers are more likely than White workers (39%) to work in at-risk occupations. Similarly, around six in ten nonelderly noncitizen immigrant workers who work in at-risk occupations compared to about four in ten U.S.-born citizens. Nonelderly workers with lower educational attainment and incomes are more likely to work in at-risk occupations compared to their counterparts with higher educational attainment and incomes.
• Nonelderly workers in at-risk occupations are about twice as likely as their counterparts in less at-risk occupations to lack health insurance (16% vs. 7%), These higher uninsured rates reflect lower rates of private coverage among these workers (70% vs. 85%), which is likely the result of more limited availability of employer-sponsored insurance in these types of jobs. Medicaid helps fill some of this gap in private coverage for workers in at-risk occupations, covering 14% of workers in at-risk jobs vs. 8% of those in less at-risk jobs, but does not fully offset the gap in private coverage.

These findings show that job-related climate-related health risks compound challenges and disparities faced by many historically marginalized and underserved groups. Adults of color, noncitizens, and adults with lower educational attainment and incomes are disproportionately employed in occupations with increased climate-related health risks. Moreover, workers in occupations with increased climate-related health risks are more likely to be uninsured, contributing to challenges accessing health care. Many of these same groups face other job-based challenges, including higher risk of injury and differential treatment, particularly migrant or immigrant workers, who often lack labor protections. These groups also are at increased risk for other climate related health risks and broader disparities in health and health care due to underlying structural inequities. Without mitigation strategies, health risks are expected to increase due to climate change. These data highlight the importance of addressing underlying social and economic inequities that drive disparate occupational exposures to climate-related health risks and to protect workers from these increasing risks.

Which Occupations Have Increased Climate-Related Health Risks?

Climate can negatively impact worker health through multiple pathways including extreme heat, decreased air quality, extreme weather, vector-borne and infectious diseases, and environmental contaminants. The Centers for Disease Control and Prevention (CDC) notes that the disproportionate exposure to adverse climate change-related conditions can exacerbate existing health and safety issues among certain workers and could potentially cause new and unanticipated harms. These exposures could lead to heat stress and other heat-related illnesses, occupational injuries and deaths, infections and disease, and health conditions caused by exposure to biological hazards as well as negatively impact mental health. They also may limit worker productivity and contribute to added costs associated with worker illness or injury.

Some occupations pose more climate-related health risks for workers than others. For example, outdoor workers and indoor workers who engage in heavy physical labor and are exposed to high temperatures are disproportionately likely to suffer from heat-related illnesses and deaths. Some research studies have found that agriculture, forestry, fishing, hunting, and construction workers experience the highest rates of heat-related mortality. In responding to the growing number of wildfires associated with climate change, firefighters, health care workers, and other emergency responders are disproportionately exposed to air pollutants, which are connected to allergies, respiratory illnesses, heart diseases, and other chronic and acute illnesses. Extreme weather events pose health and safety risks to rescue and recovery workers and may increase exposure to environmental contaminants and water-borne and food-borne diseases. People who work outdoors, in water and sanitation-related occupations, agriculture, with animals, or in the natural environment are particularly susceptible to the infection, transmission of, and spread of vector-borne diseases, such as Lyme disease. Agricultural workers are particularly susceptible to exposure and absorption of toxic chemicals, including pesticides, which have been associated with adverse health outcomes, including death.

To better understand who is at increased risk of climate-related health impacts through their job, we identified workers in occupation groups at increased risk and as less at-risk using data from the 2022 Current Population Survey Annual Social and Economic Supplement (CPS-ASEC). We identified occupations with increased climate-related risks based on a range of resources, including CDC’s Occupational Safety and Health and Climate Resource, EPA’s Climate Change and Health of Occupational Groups report, and George Washington University’s Hazard Zone: The Impact of Climate Change on Occupational Health (Figure 1). The classifications used in this analysis are subject to some limitations due to the breadth of occupation categories in CPS-ASEC. Each of the occupation categories in CPS includes many jobs, which may vary in terms of at-risk or less at-risk classifications and by geographic location. For this analysis, we classified an occupation category as at- or less at-risk if the majority of jobs included in it aligned with the CDC’s and other organizations’ definitions of climate vulnerable occupations.

Who are Workers in Occupations with Increased Climate Related Health Risks?

Based on the classification of occupation groups above, we find a total of 65.7 million nonelderly adult workers in occupations that are at increased risk for climate related health risks, accounting for 44% of nonelderly workers. The remaining 56% or 84.7 million nonelderly adult workers are in occupations identified as less at-risk for climate-related health risks.

Overall, among nonelderly adult workers, many people of color and noncitizen immigrants are more likely than their White and citizen counterparts to be in jobs with increased climate-related health risks (Figure 1). Over half of Hispanic (58%), Black (51%), and Native Hawaiian or Pacific Islander (NHOPI) (52%) nonelderly workers are in occupations at increased risk for climate-related health risks compared with 39% of White workers. Asian nonelderly workers (33%) are less likely than their White counterparts (39%) to be in occupations that are at increased risk. Moreover, around six in ten of noncitizen immigrant workers, including 62% of those who have been in the U.S. for five or more years and 59% of those who have been in the U.S. for less than five years, are employed in at-risk occupations compared with 41% of U.S.-born citizen workers. Naturalized citizen workers are (47%) also more likely than U.S.-born citizen workers to work in at-risk occupations, although the difference is smaller. Noncitizen Black, Hispanic, and NHOPI workers had particularly high rates of employment in at-risk occupations, with nearly eight in ten (77%) Hispanic noncitizen workers, two-thirds of Black noncitizen workers, and 80% of NHOPI noncitizen workers employed in at-risk professions.

Nonelderly workers with lower educational attainment and income levels are more likely than workers with higher levels of education and income to work in at-risk occupations (Figure 2). Nearly eight in ten (79%) nonelderly workers with less than a high school education and six in ten (61%) nonelderly workers with a high school degree work in at-risk occupations compared with less than half (48%) of nonelderly workers with some college education and just one in four (25%) of nonelderly workers with a bachelor’s degree or higher. Similar patterns are seen by income. Over six in ten low-income nonelderly workers (with incomes below 200% of the federal poverty level (FPL)) are employed in at-risk occupations, nearly twice the share of higher income workers (income at 400% FPL or higher) employed in these jobs (34%).

How Does Health Coverage Vary Among Workers by Risk for Climate-Related Health Impacts?

Nonelderly workers in at-risk occupations are about twice as likely as their counterparts in less at-risk occupations to be uninsured (Figure 3). Among nonelderly workers, 16% of those in occupations with increased climate related health risks are uninsured, nearly twice the rate of workers in less at-risk occupations (7%). These higher uninsured rates reflect lower rates of private coverage among these workers (70% vs. 85%). Medicaid helps fill some of this gap in private coverage, covering 14% of workers in at-risk jobs vs. 8% of those in less at-risk jobs, but does not fully offset the gap in private coverage. These differences in health insurance coverage likely reflect that many of the occupations with increased risk offer lower wages and are in industries that are less likely to offer employer-sponsored coverage. Additionally, workers in at-risk occupations are significantly more likely to be noncitizen immigrants, who are subject to eligibility restrictions for federally-funded coverage, including prohibitions on undocumented immigrants enrolling in Medicaid or purchasing coverage through the Affordable Care Act (ACA) Marketplace.

Implications

Job-related climate-related health risks compound challenges and disparities faced by many historically marginalized and underserved groups. This analysis shows that adults of color, noncitizens, and adults with lower educational attainment and incomes are disproportionately employed in occupations with increased climate-related health risks. Moreover, workers in occupations with increased climate-related health risks are more likely to be uninsured, contributing to challenges accessing health care. Many of these same groups may face other job-based challenges, including higher risk of injury and differential treatment. Of particular note are migrant or immigrant workers who are disproportionately exposed to environmental hazards and have a greater risk of developing adverse outcomes due to their potential lack of job training, labor protections, and worker authorization/contracts, as well as their inability to access government-sponsored support. Moreover, these groups also are at increased risk for other climate related health risks and broader disparities in health and health care due to underlying structural inequities, including residential segregation and other social and economic challenges.

Occupational climate-related health risks are expected to increase due to climate change. Without any mitigation strategies, the threats associated with exposure to extreme heat, air pollutants, extreme weather, vector borne diseases, and toxic environmental chemicals and other contaminants are expected to increase due to climate change. As such, climate change will likely contribute to increases in negative health impacts among workers, including heat related illnesses and occupational injuries and illnesses. If unchecked, researchers estimate a nearly fourfold increase in extreme heat-related occupational injuries. Research has shown that, if unaddressed, the impact of climate change on workers’ health will increase loss of productivity hours and may cost the U.S. economy, in the long run. As climate change continues and the number of new vector-borne diseases is expected to increase, researchers expect that many carriers of these diseases could expand their geographical range putting more people, including outdoor workers, at risk of disease infection and transmission. Recent analysis has also found that, if unaddressed, climate change associated damages, including lost labor productivity due to heat stress, increased morbidity and mortality, and agricultural loss could cost the U.S. economy approximately $14.5 trillion over the next fifty years.

In recent years, there has been increased recognition of climate change and its impacts on health equity, including among workers, but continued action will be important for mitigating risks. The federal government has taken some steps to prioritize efforts to address climate change and its health risks for workers. In addition to Executive Orders that emphasize the need for a government-wide approach to addressing climate change and advancing environmental justice, in 2022, the Occupational Safety and Health Administration (OSHA) launched the National Emphasis Program for Outdoor and Indoor Heat-Related Hazards, an enforcement program that seeks to identify and eliminate or reduce worker exposures to occupational heat-related illnesses and injuries. This program is an expansion of the agency’s heat-related illness prevention initiative. The EPA revoked the use of certain dangerous chemicals, including the use of chlorpyrifos as a pesticide for food, reducing risks for farmworkers and their children in 2022. Some states have also taken steps to protect workers from extreme heat. Minnesota, Washington, Oregon, California, and Colorado have implemented heat standards that seek to prevent heat-related illnesses and deaths among workers. Going forward continued actions to mitigate climate-related health risks for workers as well as to address underlying social and economic inequities that drive disparate occupational exposures to climate-related health risks will be of growing importance as these risks are expected to grow due to climate change.

Millions of people in the United States live with mental health diagnoses, with about one third of adults reporting symptoms of depression and/or anxiety. Among these adults, over 20% report an unmet need for counseling or therapy.

This analysis finds that privately insured adults who were treated for depression and/or anxiety in 2021 spent almost twice as much on annual out-of-pocket costs compared to enrollees who were not treated for a mental health diagnosis ($1,501 versus $863). Out-of-pocket spending and service utilization increased with depression severity.

The findings only include services that enrollees claim under their employer coverage. As a result, they likely underestimate utilization of, and spending on, mental health services.

The analysis is available through the Peterson-KFF Health System Tracker, an online information hub that monitors and assesses the performance of the U.S. health system.

A new KFF analysis finds that between 2018 and 2020, one-in-five (21%) adults diagnosed with HIV were out of care. Compared to adults who were receiving regular HIV care, adults who were out of care were more likely to be Black and to report challenges in their interactions with the health system, multiple and complex barriers to accessing health care services, and unmet needs for ancillary care.

Adults who were out of care were not virally suppressed and had not received recommended lab tests. 

Additional findings include: 

• Adults with HIV who were out of care were more likely to be young and to report poorer health status than those in care. They were also more likely to be uninsured and were less likely to have a regular provider or to receive support from the Ryan White HIV/AIDS Program, the nation’s HIV safety-net program that provides outpatient HIV care, treatment, and support services to people with HIV who are underinsured and uninsured. 
• Adults who were out of care were more likely to report barriers to receiving care because of their finances, mental health, and difficulty getting to a doctor’s office, as well as more dissatisfaction with care than those in care. They were also more likely to report unmet needs for social and support services such as food and housing insecurity.

• A fifth of adults who were out of care were not on antiretrovirals (HIV medication) compared to virtually all of adults in care. Among adults on treatment, those who were out-of-care were more likely to report missing doses.

Identifying people with HIV who are out of care, and better understanding the barriers they face, are first steps towards engaging or reengaging them in care, addressing their unmet needs, and improving their health status. Doing so effectively would improve both individual health outcomes as well as public health, aligning with the goals in the national HIV/AIDS Strategy and the federal Ending the HIV initiative.

Read “What Do We Know About People with HIV Who Are Not Engaged in Regular HIV Care?” to learn more about people with HIV who are not engaged in regular HIV care and the barriers they face.

Additionally, learn more about KFF’s Greater Than HIV, a public information initiative focused on reaching those populations most affected by HIV in the United States with the latest on testing, prevention, and treatment. A current Greater than HIV effort provides free HIV testing and counseling as part of the largest National HIV Testing Day event in the nation on June 27th.

Key Findings

An ongoing challenge to ending the HIV epidemic in the U.S. is reaching people with HIV who are not receiving regular HIV care and are not virally suppressed. Being engaged in HIV care, including being on antiretroviral therapy, promotes optimal individual health outcomes and viral suppression, which in turn prevents transmission of HIV to others. To date, however, robust and representative data on people with HIV who are not receiving regular HIV care have been limited, making it difficult to understand who they are and what barriers they face. This analysis aims to help fill this gap, using nationally representative data to assess the characteristics and experiences of people with HIV who are out of regular HIV care, defined as those who had less than two CD4¹ . or viral load tests at least 3 months apart within a 12-month period and were not virally suppressed.

Overall, we find that one-in-five (21%) adults with diagnosed HIV were out-of-care and, compared to their in-care counterparts, they were more likely to report challenges in their interactions with the health system, multiple and complex barriers to access, and unmet needs for ancillary care; they are also more likely to be members of population groups already facing longstanding health disparities. Specifically, we find that:

• People with HIV who were out-of-care were more likely to be Black, young, and to report poorer health status than those in-care. They were also more likely to be uninsured, experience changes in their usual source of care related to insurance changes, and were less likely to have a regular provider or to receive support from the Ryan White Program. There were no statistically significant differences based on state Medicaid expansion status or census region.
• Those out-of-care were more likely to report barriers to care engagement, including in the areas of finances, mental health, and getting to a doctor’s office, as well as more dissatisfaction with care than those in-care. They were also more likely to report unmet needs for ancillary social and support services in three domains: clinical, non-HIV medical/behavioral, and subsistence services, with more than half reporting at least one unmet need.
• Whereas virtually all people with HIV in-care were on antiretroviral therapy, a fifth of those out-of- care were not on ARVs, and among those who were, they were more likely to report missing treatment doses. In addition, smaller shares reported being familiar with the concept of treatment as prevention (TasP) than those in-care, though there were substantial knowledge gaps for both groups.
• Identifying people with HIV who are out-of-care, and better understanding the barriers they face, are first steps towards engaging or reengaging them in-care, addressing their unmet needs, and improving their health status. Doing so could play a role in advancing the goals in the national HIV/AIDS Strategy and the federal Ending the HIV initiative.

Introduction

An ongoing challenge to ending the HIV epidemic in the U.S. is reaching people living with HIV who are out of regular HIV care and not virally suppressed. Being engaged in HIV care, including being on antiretroviral therapy, promotes optimal individual health outcomes and viral suppression, which also prevents transmission of HIV. Indeed, an estimated 43% of HIV transmissions are estimated to result from people who were aware of their HIV status but not engaged in care. To date, however, robust and representative data on people with HIV who are not engaged in regular HIV care and the barriers they face have been limited. One exception is a nationally representative analysis that assessed barriers to care faced by people with HIV who felt they had not received enough care. The current analysis aims to add to this knowledge base, using nationally representative data from the Centers for Disease Control and Prevention’s Medical Monitoring Project (MMP). The MMP is a cross-sectional, nationally representative survey of adults with diagnosed HIV in the United States and includes data drawn from both in-depth interviews and medical record abstraction.

For this analysis, we defined people with HIV as not being in care if they (1) had less than two CD4 or viral load tests at least 3 months apart within a 12-month period and (2) did not have sustained viral suppression (see box). This definition differs from the one used by the Centers for Disease Control and Prevention which only focuses on lab testing frequency regardless of viral suppression status.²   By taking this approach, we aimed to identify the most vulnerable individuals within this group, including those who may have the greatest need for targeted engagement efforts. The analysis is limited to adults and is based on data collected between 2018 and 2020 (see Methodology for details).

Findings

Population

Based on the definition described above, 21% of adults with diagnosed HIV were out-of-care during the 2018 to 2020 period. This group was not virally suppressed and had a suboptimal number of recommended lab tests. The remaining 79%, who serve as our comparison group (i.e. those “in-care”), include all those virally suppressed, regardless of the number of lab tests they have received, and others with regular CD4 or viral load labs.

Demographics

People with HIV who were out-of-care differed demographically from those in-care. They were more likely to be Black, younger, and to report poorer self-rated physical health, among other differences (see Figure 1).

• People with HIV who were out-of-care were more likely to be Black (50% of those out of care v. 39% of those in care) and less likely to be Hispanic/Latino (16% v. 24%) or White (26% v. 30%) than those in-care.
• They were also younger than their in-care counterparts, with greater shares between the ages of 18-29 (12% v. 8%) and 30-39 (20% v. 16%). This finding echoes other data demonstrating lower levels of care engagement among younger people in across certain measures.
• In addition, they were more likely to report “fair or poor” health (35% v. 27%) and less likely to report “excellent or very good” health (28% v. 37%) than those in-care.
• Finally, compared to those in-care, they were somewhat less likely to identify as gay or lesbian (37% v. 42%), have incomes above 400% FPL (9% v. 12%), or be male (72% v. 75%), but there were no other differences in other sexual orientation, poverty, or gender categories.
• There were no statistically significant differences based on state Medicaid expansion status or census region.

Health Coverage and Ryan White Support

People with HIV who were out-of-care were more likely to be uninsured and less likely to have private insurance than those in-care, but also less likely to receive Ryan White support (see Figure 2).

• People with HIV who were out-of-care were more likely to be uninsured (14% v. 10%) or have Medicaid (45% v. 40%) than those in-care, and less likely to have private coverage (29% v. 35%).
• While both groups were similarly likely to report changes to their insurance coverage over the past 12-month period (14% v. 13%), those out-of-care were twice as likely to say this led to a change in their usual source of HIV care (40% v. 19%).
• Finally, compared to their in-care counterparts, those who were out-of-care had significantly lower levels of support from the Ryan White HIV/AIDS Program (39% v. 50%), the nation’s HIV safety-net program that provides outpatient HIV care, treatment, and support services to people with HIV who were underinsured and uninsured.

Accessing care

People with HIV who were out-of-care care were less likely to have a regular provider,  more likely to be dissatisfied with recent care that they had received, and more likely to have missed appointments, than those in-care.

• While similar shares reported they were not offered assistance in finding HIV care within 30 days of diagnosis by a professional (23% v. 18%), those who were out-of-care were about four times as likely to report not having a regular HIV provider (16% v. 4%).
• In addition, about one-third (34%) of those out-of-care reported missing one or more HIV care appointments in the 12 months prior to the interview compared to one-in-five of those in care (22%).
• They were also more likely to report being “very or somewhat” dissatisfied with the HIV care they received over the preceding 12 months (8% v. 3%).

People with HIV who were out-of-care were also more likely to report certain barriers to care engagement, including in the areas of finances, mental health, and getting to a doctor’s office than those in-care.

• Over one-quarter of those reported that problems with money or insurance were barriers to HIV care, compared to just over one-in-ten of those in-care (27% v. 12%). Those out-of-care were also more likely to report facing problems paying medical bills (data not shown).
• In addition, they were twice as likely to report that depression or other mental health problems made it difficult to get HIV care (24% v. 12%), and were more likely to say that personal issues, such as family or work, were barriers to care (28% v 16%).
• About one-in-five (18%) reported that difficulty getting to a doctor’s office was a barrier to HIV care, more than double the share of those in care (8%).
• While those out-of-care generally reported more barriers to access, they were also more likely to say they delayed care because they felt well, compared to their in-care counterparts (20% v. 7%).

People with HIV who were out-of-care were less likely to report being on antiretroviral therapy, despite the recommendation that such treatment be started as soon as possible after diagnosis, and were more likely to report missing ARV treatment doses.

• One-in-five (21%) of those out-of-care reported they were not currently taking ARVs compared to just 2% of those in-care.
• In addition, of those who did report taking ARVs, 19% reported missing three or more doses in the past 30 days, compared to 13% of those in-care.
• While 66% of those who were out-of-care were familiar with the concept of treatment as prevention (i.e. that when someone is virally suppressed due to consistent ARV use, they cannot transmit HIV), one-third were not. In contrast, nearly three-quarters (72%) of those in-care were familiar with the concept.

Reasons for missing ARV doses were generally similar between those in and out of care, although there were some exceptions, particularly with respect to mental health challenges.

• For those who were out-of-care, the most common reported reason for missing an ARV dose was forgetting it (63%), followed by a change in daily routine or being out of town (42%), and being asleep (35%). Additionally, about one-in-five reported they had a problem getting a prescription or a refill (21%). Others reported that use of alcohol or drugs (11%) or being too sick or in the hospital (7%) got in the way of taking ARVs. In each case, these were similar to reports from those in-care.
• However, those who were out-of-care were more likely to report the following reasons for not taking ARVs than those in-care: feeling depressed or overwhelmed (23% v. 16%), not feeling like taking the medications (17% v. 12%), , experiencing side effects (13% v. 10%), and having problems paying for the medication (9% v. 5%).

Unmet needs for HIV ancillary services

More than half (56%) of people with HIV who were out-of- care had at least one unmet ancillary care need, across three domains, compared to 43% of the in-care population. Unmet need was higher overall as well as in each domain:

• Clinical support services, including case management, adherence counseling, medication through ADAP, peer group, patient navigation services (24% v. 14%)
• Non-HIV medical/behavioral services, including dental care, mental health services, drug/alcohol counseling/treatment, and domestic violence services (35% v. 27%)
• Subsistence services, including SNAP, WIC, meal or food services, transportation assistance, or shelter/housing services (34% v. 22%).

• Specifically, people with HIV who were out-of-care had higher levels of unstable housing or homelessness (32% v. 18%) and hunger/food insecurity (27% v. 18%) over the preceding 12 months.³ 

Discussion

Identifying people with HIV who are not in HIV care is a first step towards engaging or reengaging them and addressing their unmet needs. While relevant demographic details may help to better design programs for and reach these individuals, there has been limited data available on this population. This analysis provides nationally representative data on people with HIV who are out-of-care, defined as those who were not virally suppressed and did not receive a minimum number of laboratory tests within the prior year, to better understand their demographics and experiences.  We find that in the 2018 to 2020 period, this population was disproportionally younger, uninsured, lower income, and Black. They were also much less likely to be on antiretroviral therapy and many faced overlapping and intersectional structural barriers that can further challenge HIV care engagement and prioritization, including unmet needs for basic, subsistence services such as food, housing, and financial security. That fact that those who were out-of-care were also less likely to be receiving services from the Ryan White Program is notable because the program is a potential resource for reaching this very population with engagement and retention services and in addressing at least some unmet ancillary care needs, though the program is constrained by financial limitations. Additionally, there were substantial knowledge gaps with respect to treatment as prevention, information that may help encourage care engagement when individuals learn they are able to prevent transmission of HIV to sexual partners.

Unless large shares of people with HIV are engaged in care and treatment, it will not be possible to meet most of the goals in the national HIV/AIDS Strategy and the Ending the HIV initiative (e.g. preventing new infections, reducing disparities, etc.). Progress on these efforts has been somewhat stalled in the U.S., which lags behind peer countries in terms of the national viral suppression level. Reaching and engaging people with HIV who are not engaged in care and not yet virally suppressed, will involve addressing the complex, systemic barriers they face, and which have impeded not only their health and wellbeing but the HIV response in the U.S. more broadly.

Methodology

Data on people with HIV are based on 2018 and 2019 data cycles (which cover data through part of 2020) from the Medical Monitoring Project (MMP), a Centers for Disease Control and Prevention (CDC) surveillance system which produces national and state-level representative estimates of behavioral and clinical characteristics of adults with diagnosed HIV in the United States.

MMP employs a two-stage, complex sampling design. First, jurisdictions are selected from all U.S. states, the District of Columbia, and Puerto Rico using a probability proportional to size sampling strategy based on AIDS prevalence at the end of 2002, such that areas with higher prevalence had a higher probability of selection. Next, adults (aged 18 years and older) with diagnosed HIV were sampled from selected jurisdictions from the National HIV Surveillance System (NHSS), a census of U.S. persons with diagnosed HIV. During the 2018 and 2019 MMP data cycles, data came from: California (including the separately funded jurisdictions of Los Angeles County and San Francisco), Delaware, Florida, Georgia, Illinois (including the separately funded jurisdiction of Chicago), Indiana, Michigan, Mississippi, New Jersey, New York (including the separately funded jurisdiction of New York City), North Carolina, Oregon, Pennsylvania (including the separately funded jurisdiction of Philadelphia), Puerto Rico, Texas (including the separately funded jurisdiction of Houston), Virginia, and Washington.

Data used in this analysis were collected via telephone or face-to-face interviews and medical record abstractions during the following periods:

• 2018 data was collected between June 1, 2018–May 31, 2019
• 2019 data was collected between June 1, 2019–May 31, 2020

The response rate was 100% at the first stage, and was 45% for each of the 2 cycles included in this analysis. Data were weighted based on known probabilities of selection at state or territory and patient levels. In addition, data were weighted to adjust for non-response using predictors of person-level response, and post-stratified to NHSS population totals by age, race/ethnicity, and sex at birth. This analysis includes information on 7,642 adults with HIV.

Of the 7,642 adults sampled, 1,215 were identified as being out-of-care (having fewer than two CD4 or viral load tests at least 3 months apart within a 12-month period) and also being virally unsuppressed (having a viral load of equal to or more than 200 copies of HIV per milliliter of blood).

Because respondents in MMP may indicate more than one type of coverage, we relied on a hierarchy to group people into mutually exclusive coverage categories as follows:

• Private coverage overall (with breakouts for employer coverage and marketplace coverage)
• Medicaid coverage, including those dually eligible for Medicare
• Medicare coverage only
• Other public coverage, including Tricare/CHAMPUS, Veteran’s Administration, or city/county coverage
• Uninsured

Differences between groups were assessed using prevalence ratios with predicted marginal means.

It is important to note that insurance coverage data were self-reported by respondents and not verified, as was receipt of Ryan White support. In addition, by relying on a hierarchy to group individuals into coverage categories, it is possible individuals were grouped into a coverage category that was not their dominant payer over the course of a year.

Acknowledgments

The authors wish to thank Dr. Sharoda Dasgupta, Stacy Crim, Tamara Carree, and Dr. Linda Beer of the Centers for Disease Control and Prevention (CDC), who were instrumental in this work in providing access to data, guidance, and conducting statistical analysis.

1. A CD4 test is a laboratory test that measures the number of CD4 cells (also known as T cells) in a blood sample. CD4 count is a key laboratory indicator of immune function and indicates HIV stage progression as well as response to HIV treatment. ↩︎
2. For example, see: Centers for Disease Control and Prevention. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 dependent areas, 2020. HIV Surveillance Supplemental Report 2022;27(No. 3). https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-27-no-3/index.html ↩︎
3. People were considered to have experienced unstable housing if they reported any of the following during the preceding 12 months: moving in with others due to financial issues, moving 2 or more times, or being evicted. People were considered to have experienced homelessness if they experienced any of the following during the preceding 12 months: living on the street, in a shelter, in a single-room–occupancy hotel, or in a car. People were considered to be food insecure if they reported being hungry and not eating because they did not have enough money for food during the past 12 months  Centers for Disease Control and Prevention. Data Tables: Quality of Life and HIV Stigma— Indicators for the National HIV/AIDS Strategy, 2022–2025, CDC Medical Monitoring Project, 2017–2020 Cycles. HIV Surveillance Special Report 30. Published September 2022. https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-special-report-number-30.pdf. ↩︎

Almost one year after the Supreme Court overturned Roe v. Wade and Planned Parenthood v. Casey, abortion laws and access to abortion are uneven across the country. With both Casey and Roe no longer the legal standard, many states have banned abortion. However, the legality of abortion in a state does not tell the whole story. Many states without bans still have abortion regulations that create significant barriers to access. State abortion regulations such as gestational limits early in pregnancy, mandatory waiting periods and ultrasounds, bans on telehealth for abortion care, parental consent requirement for minors, and restricting the pool of providers to licensed physicians serve to limit access to abortions in states that have not instituted outright bans.

Gestational Limits

Five states have gestational limits early in pregnancy. In Georgia, abortion is banned after 6 weeks from the last menstrual period (LMP), before most people know they are pregnant. A 12-week LMP ban recently passed and went into effect in Nebraska, and North Carolina has a 12-week ban slated to go in effect on July 1st, 2023. Florida and Arizona ban abortion after 15 weeks LMP. Florida’s Governor has also signed a 6 -week LMP ban which may go in effect after the Florida Supreme Court rules on whether the 15-week ban is permissible under the state constitution. Although most abortions happen before 10 weeks of pregnancy, states with gestational limits earlier in pregnancy also have other restrictions in place that constrain access to abortion by delaying it. For instance, in states where telemedicine for abortion is banned and there are waiting periods in place, a pregnant patient may no longer meet the gestational limit by the time they are able to get an appointment to get their abortion.

Seven more states have gestational limits later in pregnancy, but before viability, a point that varies from person to person and also by the medical resources that are offered in their community, but is generally estimated to be at around 24 weeks LMP. States with these gestational limits are Utah, which bans abortions after 18 weeks LMP and Indiana, Iowa, Kansas, North Carolina, Ohio, and South Carolina, which currently ban abortion after 22 weeks LMP.

Waiting Periods and Ultrasound Requirements

Seven states – Arizona, Florida, Georgia, Indiana, Iowa, Kansas, and North Carolina, all of which have pre-viability gestational limits – also require clinicians to perform ultrasounds before providing abortion care. These laws often require that the ultrasound be performed by the same clinician that will be providing the abortion care, even though there is no medical rationale for this requirement. Thirteen states have mandatory waiting periods between the initial required counseling session (at which an ultrasound may also be required) and the appointment where the pregnancy will be terminated. These waiting periods range from 24 to 72 hours in duration. All states that have ultrasound requirements also have mandatory waiting periods. In conjunction, these requirements often result in the pregnant person having to attend two separate in-person appointments with their abortion provider. In states with early gestational limits, such as Florida, which currently bans abortions after 15 weeks LMP, these requirements may push abortion care out of reach for pregnant people.

Medication Abortion Restrictions

Restrictions on Telehealth for AbortionNine states that do not ban abortions generally have laws that effectively outlaw telehealth for medication abortion. Several states have laws that explicitly ban telehealth for abortion. Others have restrictions requiring medication abortions to take place in clinics or for the prescribing clinician to be present when the pregnant person takes the first medication in the regimen, despite the elimination of the FDA in-person requirement for medication abortion. States that require an ultrasound effectively block telehealth for abortion, since the pregnant patient must have at least one in-person visit to get the ultrasound. Regardless of the mechanisms these laws employ, their results are the same: they prevent people from accessing abortion care via telehealth. This can be especially burdensome for people who live in rural areas far from an abortion clinic, people who need to arrange child care and/or need to take time off from work for appointments, and people traveling to other states to receive abortion care.

Physician-Only RequirementsMany states only authorize physicians to provide abortion care, while others allow advanced practice clinicians (such as physician assistants and some nurses) to provide abortion care that is within their scope of practice. Laws requiring licensed physicians to provide abortion care restrict the number of providers available, despite research demonstrating that medication abortion (and aspiration abortions) are just as safe when provided by an advanced practice clinician. Currently, 15 states only authorize physicians to provide medication abortions, of these, 11 have pre-viability gestational bans. This restriction limits the credentialing of the providers that are permitted to offer abortion, and ultimately impacts access for people seeking abortions within the limited gestational period abortions are not banned.

Restrictions on Minors’ Ability to Access Abortion Care

In 15 states where abortion is not completely banned, minors must obtain the consent of their parents or legal guardian to receive abortion care. Six other states require that the parents or legal guardian of the minor be notified before the minor receives abortion care. Most states with these requirements contain provisions that allow a judge to waive the consent or notification requirement. In states with consent requirements, this leaves the determination of whether or not the minor can receive an abortion up to a judge. Judges use different criteria for judicial bypass of the consent requirement, often to the detriment of the minor. For instance, judges have prevented minors from receiving an abortion, deeming them not mature enough to make such a medical decision for themselves, despite their assertions that they do not wish to continue their pregnancies.

Even in cases where a minor is able to receive judicial bypass, the process is time-consuming and can result in delays in the timing of the abortion, even when the minor is ultimately permitted to obtain an abortion. Additionally, these restrictions have their own waiting periods, for example, requiring that notice or consent be given 24-48 hours prior to the minor receiving an abortion. Even when the minor’s parents or legal guardian grant consent, these waiting periods can delay care.

New State Law that May not Have Been Permitted Under Casey

Some states have turned to restrictions that ban certain types of abortions without directly banning abortion care. For instance, after having their abortion ban blocked in court, the Utah legislature passed a law that would have banned all abortions not provided in a hospital, effectively banning all clinic-based abortions. This ban was temporarily blocked by a state court in May 2023. Similarly, after having an abortion ban blocked in court, the Wyoming legislature passed a ban on medication abortion, which is slated to go in effect July 1st, 2023. And in Montana – where the state Supreme Court recognized in a 1999 opinion that their constitution protects the right to abortion – the legislature enacted a law banning D&E procedures (the most common abortion method after 15 weeks LMP). Enforcement of this ban has also been blocked by a state court.

Conclusion

The accessibility of abortion in any given state does not rest entirely on whether or not it is banned. In many states where abortion is not fully banned, state laws nevertheless restrict access to it. These restrictions typically sharply curtail access to abortion, and in states with several restrictions in place, they can push access to abortion effectively out of reach.

A new KFF survey of office-based OBGYNs finds widespread effects on their practices and patients since the Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization one year ago. 

In states with abortion bans, half say that they have patients who have been unable to obtain an abortion, about four in ten say that they have faced constraints on their care for miscarriages and pregnancy-related emergencies, and six in ten (61%) express concerns about legal risk when making decisions about patient care. Nearly as many OBGYNs practicing in states with gestational limits on abortion also say they faced such challenges in their practices. 

Among all OBGYNs nationally, one in four (24%) say they have had patients who could not obtain an abortion they sought. More than four in 10 (42%) OBGYNs nationally report being very or somewhat concerned about their own legal risk when making decisions about patient care and the need for an abortion.

Furthermore, large shares of OBGYNs believe that the Dobbs decision has also exacerbated pregnancy-related mortality (64%), racial and ethnic inequities in maternal health (70%), and made it harder to attract new OBGYNs to the field (55%).

The survey finds that 60% of OBGYNs in states where abortion is banned report their decision-making autonomy has worsened, and 55% say it is more difficult to practice within the standards of care, which are the norms of medical treatment. Additional findings include:

• More than half (55%) of all OBGYNs say they have seen an increase in the share of patients seeking some form of contraception since the Dobbs ruling, particularly sterilization (43%) and IUDs and implants (47%).  
• Nationally, 18% of office-based OBGYNs say they provide abortion services after the Dobbs decision, statistically unchanged from before Dobbs.
• Three-in-10 (30%) OBGYNs practicing in states where abortion is banned say they do not provide, refer, or offer any resources for abortion services to their patients. Nearly half (48%) say they only offer information, such as online resources, to help patients seek out abortion services on their own.

The KFF 2023 National OBGYN Survey obtained responses from a nationally representative sample of OBGYNs practicing in the United States who provide sexual and reproductive health care to patients in office-based settings. From March 17 to May 18, 2023, survey responses were collected from 569 OBGYNs.

Read “A National Survey of OBGYNs’ Experiences After Dobbs” for details about the provision of sexual and reproductive health care provided by OBGYNs before and after the Dobbs decision.

Digital behavioral health services such as mental health apps became increasingly popular especially during the pandemic, according to industry reports, when in-person health care visits were avoided to prevent the spread of COVID-19. Approximately 40% of Americans reported symptoms of depression and anxiety at the beginning of the pandemic, and there was an increased need for mental health support for consumers to address these symptoms. Additionally, industry reports found that funding of behavioral health startup companies exploded during the pandemic with $588 million invested in the first half of 2020, many funded by private equity firms.

During the PHE, many federal and state healthcare requirements were “waived” in an attempt to expand access to digital behavioral health services such as mental health apps. This Issue Brief looks at how federal PHE waivers may have expanded use of mental health apps and some of the policy issues concerning the continued use and promotion of mental health apps post-PHE.

What Are Mental Health Apps?

Mental health apps are mobile technology applications that offer clinical and non-clinical methods of offering mental health support. These vary in the scope of services they offer to consumers, from clinical services offered by a licensed behavioral health provider to treat specific conditions to services aimed at promoting general health and wellness. Users typically download an app through an app store available on smartphones and are then prompted to review and agree to an app’s privacy and technology policies prior to accessing other features on the app (e.g., intake questionnaires on symptoms and personalized treatment plans). The spectrum of available apps includes the following, with some apps including a combination of these features:

• Medical Devices: Apps defined as computerized behavioral therapy devices subject to approval by the FDA (e.g., ReSET) offer a clinician-administered version of virtual behavioral therapy that patients can utilize outside of synchronous, live sessions with their provider. These apps can be found on smartphone devices, although they may be difficult or nearly impossible to utilize without a prescription.
• Mental health apps that include telehealth features: Some apps such as TalkSpace and multi-service platforms such as Lyra offer therapy sessions with a licensed provider via live video or audio communications. Telehealth apps can also offer patients means to receive consultations and prescription drugs with a provider licensed to prescribe psychiatric medications. Telehealth apps might also include other general wellness features and are typically accessible through app stores on smartphone devices.
• Mental health “wellness” products: Other apps (e.g., Happify | Get Started, PTSD Coach App) assist consumers with general wellness (e.g., stress relief) via use of journaling tools, motivational quotes, chatbot therapy, or meditation exercises, as well as offer non-medical treatments to assist consumers in managing symptoms associated with a specific mental health condition. Some of these apps may be developed by licensed providers and offer clinician-endorsed treatments, but the line between what is actual medical care and what is non-medical care is not always clear. There are a number of general wellness apps that claim to offer medical strategies to help with certain mental health disorders, but the apps themselves might not offer treatments based on evidence. One study from 2017 found that none of the most popular apps rated highly by consumers for treating anxiety related symptoms were evidence-based treatments. On the other hand, some apps contain mental health tools and practices that have been developed or supported by licensed providers. Even these apps might contain disclaimers stating that usage of the app does not replace a consumer seeking medical care from a licensed behavioral provider, which makes it difficult for a consumer to determine if they are receiving medical treatment or not via these apps.

A consumer might be introduced to a mental health app in a variety of ways including through their health insurance coverage provider or directly from their employer separate from their health insurance. Employers or health insurers, for instance, might pay a small per member per month fee to a behavioral health vendor to make an app available to their employees, allowing them to receive care or an assessment of their mental health needs. Low or no cost direct-to-consumer options are also widely available and are often marketed to younger audiences via social media.

Federal COVID Waivers Drive Change in Guidance on Mental Health Apps

During the pandemic, federal agencies suspended some policies to increase access to digital behavioral health services. This may have facilitated the use of mental health apps as a vehicle to access these services. Multiple federal COVID waivers have played a role alongside state law changes that temporarily allowed health care providers to practice across state lines (specifically, allowing a provider in one state to provide telehealth to a patient in another state). Temporary changes in Medicare and Medicaid required coverage for telehealth services. These changes may have also resulted in more utilization of telehealth delivered through mental health apps across the health system, as more providers expanded their capabilities to provide telehealth for all of their patients, regardless of whether the patient had public or private health insurance coverage. Some flexibilities for Medicare have been made permanent through federal legislation and regulation or extended past the end of the PHE on May 11, 2023, while some states have made telehealth flexibilities permanent for those with Medicaid coverage.

For the private sector, waivers focused on promoting the use of telehealth in high deductible health plans (HDHP) and offering “stand alone” telehealth may have played a role to encourage the use of telehealth delivered via mental health apps. The Coronavirus, Aid, Relief, and Economic Security Act (CARES) allowed coverage of telehealth services before the deductible is met for Health Savings Account (HSA) qualifying HDHPs. Congress extended this pre-deductible coverage of HSA telehealth services under the Consolidated Appropriations Act of 2023 until December 2024. Additionally, in FAQ guidance (Q14), the federal government allowed large employers (generally those with 50 or more employees) to offer “stand-alone” telehealth coverage to employees without having to meet certain Affordable Care Act (ACA) and Employee Retirement Income Security Act of 1974 (ERISA) legal requirements for the duration of the PHE. This was available to employees who are not eligible for benefits under their employer’s health plan and continues until the end of the employer’s current plan year (for example, until December 31, 2023 for a calendar year plan).

Other federal waivers also may have created incentives for the use of mental health apps among consumers and providers:

• Privacy and security protections for telehealth and other remote communications. Prior to the pandemic, health care providers were required to ensure that audio-video technology utilized during telehealth sessions and any third-party apps administered by a clinician for treatment or communication purposes were HIPAA-compliant. In 2020, the US Department of Health and Human Services exercised its enforcement discretion by allowing providers to utilize audio and video technology without facing penalties for non-compliance with HIPAA’s privacy and security standards. Suspending these requirements gave providers a wider range of telecommunication tools to choose from, including use of popular apps such as Apple’s Facetime to conduct telehealth visits as well as wellness coaching.
• FDA protocols for approving computerized behavioral therapy devices. Prior to the pandemic, the FDA required developers of these devices to meet certain requirements to show that the device was safe, effective, and comparable with other products on the market. All of these requirements were loosened during the PHE and will be reinstated in November 2023. Even before the pandemic, the FDA took a less active role in regulating general wellness devices or software that may be classified as a medical device but that the FDA determined pose a low risk to consumers. In addition, due to changes in the law in 2016, the FDA’s authority to assess patient safety risks for some of these products was limited. As a result, these products did not and will not for the foreseeable future have to abide by FDA requirements post-PHE.
• Standards for prescribing of controlled substances via telehealth. Prior to the PHE, federal law generally required providers to have an in-person medical evaluation before a prescription for controlled substances was given. This includes, for example, certain medications used to treat Attention Deficit Hyperactivity Disorder (ADHD) such as Adderall, as well as buprenorphine used to treat opioid use disorder. Many of these standards were waived during the PHE by the Drug Enforcement Administration (DEA), an agency that is part of the U.S. Department of Justice, allowing providers to use telehealth (video or audio only mechanisms) to prescribe these medications, including through telehealth apps.

What to Watch Now That the PHE is Over

Before the PHE ended on May 11, some stakeholders and consumers expressed interest in making some waivers permanent, and efforts are underway to extend some of these waivers so that patients can continue to easily use digital behavioral health tools often employed via use of mental health apps permanently, or at least until the impact of the PHE waiver is evaluated. The end of the PHE now shifts the policy focus in digital health solutions to, in some cases, extending the COVID waiver policy in some areas, and in other areas has brought new government scrutiny on health policy concerns such as privacy and security of mental health apps and access to prescription drugs via telehealth.

Employer Plan Telehealth Flexibilities

Promoting easier access through virtual behavioral health was seen early on in the pandemic as a way to not only prevent the spread of COVID, but also address growing behavioral health care needs for those with employer coverage. There are proposals to make pre-deductible coverage of telehealth services for HDHPs used in conjunction with health savings accounts permanent. For example, the Telehealth Expansion Act, was introduced this year. Also, some members of Congress have proposed making stand-alone telehealth coverage permanent, allowing employers to make it available to all employees (including those eligible for their employer’s health plan) in the Telehealth Benefit Expansion for Workers Act, largely exempting the coverage from regulatory oversight. Going forward stakeholders will likely address ways to expand access to virtual behavioral health beyond just those with health savings accounts, and address design alternatives for employer coverage that incorporate telehealth as just one part of a broader set of tools to enhance coverage for the continuum of behavioral health care.

Access to Controlled Medications

The PHE changes gave patients easier access to psychiatric medications via prescribing through telehealth. However, more unrestricted access may have contributed to a shortage in prescription drugs such as Adderall. The percentage of stimulants prescribed via telehealth rose from less than two percent prior to the pandemic, up to 40% in 2022. Originally, the DEA proposed in two separate regulations reinstating some protocols for controlled substances, including mandating an in-person visit, in certain circumstances before a provider can give prescriptions. Although some speculate this might help resolve the shortage issue, reinstating this requirement could have potentially caused gaps in coverage for people who receive medication via telehealth platforms due to geographic restrictions, provider shortages, or other barriers that might prevent them from seeking in-person care. Just before the end of the PHE, the DEA issued a temporary rule that will allow virtual prescribing of controlled substances to continue until November 2024, giving providers and consumers time to adjust and regulators a chance to evaluate policy options.

Privacy Risks

Licensed providers and health plans who want to continue to use telehealth delivered via mental health apps after the PHE ends are expected to use telecommunication technology that meets HIPAA specifications. There is no checklist for what defines “HIPAA compliant technology”, however, HIPAA-covered entities are required to conduct a risk assessment of their telecommunication platforms and ensure that key risks are addressed. Some examples of the types of security protections they might address in their risk assessment include encryptions used to protect patients’ personal health data, login requirements, and verification processes used to ensure only verified users have access to the platform. Recent guidance gave providers an additional 90 days after the end of the PHE (August 9, 2023) to comply. Even with these HIPAA protections, there are growing concerns that mental health apps are being used to access sensitive health information that is then provided or sold to third parties for marketing purposes. HHS recently issued a Bulletin on guidelines HIPAA covered entities must follow when using online tracking technology. Additionally, HHS is currently investigating Cerebral, a mental health platform that offers online therapy and assessments, for selling patient data to third party advertisers via use of online tracking technologies.

HIPAA’s guidance and HHS’ enforcement powers only reach so far when it comes to mental health apps. Unless the entity offering a mental health app is considered a HIPAA-covered entity (typically a health provider, plan or insurer) or is a business associate of one of these entities, mental health apps do not have to follow federal HIPAA privacy, security and breach notice rules. HIPAA generally does not cover general wellness apps or even apps that are considered medical devices if they are not connected with a HIPAA-covered entity. Outside of HIPAA, app users’ data are often at the mercy of an app’s privacy policies, which could be written in convoluted language that a consumer may find difficult to understand or are not read by consumers at all.

Although non-HIPAA covered apps and telehealth vendors that misrepresent or do not abide by their privacy policies or mishandle patient data would not face penalties under HIPAA’s guidelines, they could face legal repercussions from the Federal Trade Commission (FTC), a federal agency that enforces federal laws that prohibit “unfair and deceptive” practices that affect commerce and oversee certain consumer protection laws. The FTC has recently announced new enforcement activity related to mishandling of patient data. For example, BetterHelp (a subsidiary of Teledoc), a popular mental health app, will have to pay $7.8 million in restitution as a result of allegedly selling patient data to third party advertisers without their permission and misrepresenting their privacy practices. Additionally, the FTC has proposed to update the Health Breach Notification Rule, which would require organizations that manage digital health apps and consumers’ personal records to inform consumers and the FTC when their personal data has been compromised. This proposal is controversial, as the FTC has claimed that it has authority to regulate all health apps that are not covered by HIPAA.

Congress is also weighing in on how data is used within mental health apps. Several senators have questioned leaders of major telehealth companies on their data sharing practices and some have introduced the Upholding Protections for Health and Online Location Data (UPHOLD) Privacy Act that would increase protection of personal health data stored in apps.

Looking Forward

Mental health apps, as well as other digital health solutions, have the potential to expand access to care, and for this reason certain rules and standards were waived or modified during the pandemic, which was also a time of heightened mental health needs. Coming out of the urgency of the pandemic, there is now an opportunity to evaluate the benefits and risks of these tools and consider what oversight might be appropriate. We can expect much more attention focused on the quality and clinical effectiveness of these tools, as well as who will pay for them. 

A new KFF analysis finds that states received over $117 billion in enhanced federal Medicaid funding in exchange for pausing disenrollments during the first three years of the pandemic. The injection of federal money enabled states to spend less of their own funds on Medicaid even as enrollment rose by more than 23 million people nationally and total Medicaid spending increased by billions of dollars.

Pandemic-era enrollment protections expired in March, and in April states were permitted to resume disenrollments of people who are no longer eligible for Medicaid or who do not complete the eligibility renewal process.

As the enhanced federal funding is phased out and ultimately eliminated next year, states’ spending on Medicaid will likely increase — though the impact will vary by state. The size of the increase in state Medicaid spending will depend largely on changes in total spending growth, which in turn reflect how quickly people are disenrolled, how many new people come on to Medicaid, and how spending per person in the Medicaid program will change.

States that have not adopted Medicaid expansion under the Affordable Care Act received a disproportionately large share of the more than $117 billion in enhanced federal funds that was disbursed when enrollment protections were in effect. That’s because the extra funding came in the form of enhanced federal matching money that did not apply to spending on Medicaid enrollees who were made eligible for the program through the ACA expansion. Non-expansion states received 27 percent of the enhanced funding despite accounting for only 22 percent of all Medicaid spending, the analysis finds. The full analysis, “Fiscal Implications for Medicaid of Enhanced Federal Funding and Continuous Enrollment,” includes data showing how much each state received in enhanced federal funding from January 2020 through March 2023.

Related resources:

Medicaid Enrollment and Unwinding Tracker

How Many People Might Lose Medicaid When States Unwind Continuous Enrollment?

10 Things to Know About the Unwinding of the Medicaid Continuous Enrollment Provision

For a three-year period, states provided continuous enrollment in Medicaid in exchange for an increase in the percentage of Medicaid spending that is paid for by the federal government (the Federal Medical Assistance Percentage or “FMAP”). A recent KFF analysis estimated that over 23 million people gained Medicaid coverage during the continuous enrollment period. Beginning April 1, 2023, states could begin disenrolling individuals from Medicaid, but phased-down federal matching funds will be available through the end of the year if states comply with certain rules. While there remains a great deal of uncertainty as to how Medicaid enrollment will change during the unwinding, the end of the Medicaid continuous enrollment provision and enhanced FMAP are expected to have a significant impact on Medicaid enrollment and spending. This brief examines how Medicaid spending changed during the continuous enrollment period and estimates the amount of enhanced federal funding states received during the continuous enrollment period. Key findings include:

• State spending dipped below pre-pandemic levels even as Medicaid enrollment increased by 23 million during the continuous enrollment period. With the substantial enrollment growth, total spending increased, including significant increases in federal Medicaid spending due to the enhanced FMAP.
• We estimate states received over $117 billion from the increased FMAP during the continuous enrollment period, with enhanced federal funds comprising a larger share of total Medicaid spending in states that had not adopted Medicaid expansion through the Affordable Care Act (ACA).
• Although the magnitude is uncertain, significant decreases in Medicaid enrollment are expected during the unwinding of the continuous enrollment provision, which will result in lower Medicaid spending. Even with lower enrollment, state spending will likely increase as the enhanced FMAP expires.
• The phase down of the enhanced FMAP was designed to provide continued financial support to states during the unwinding process and to mitigate sharp increases in state Medicaid spending. How much state Medicaid spending increases as the enhanced FMAP phases down and is ultimately eliminated next year will depend on how many and how quickly people are disenrolled, how many new people come on to Medicaid, and how spending per person in the Medicaid program will change.

What was the purpose of the enhanced federal Medicaid match rate?

States received a 6.2 percentage point FMAP increase in exchange for keeping individuals continuously enrolled during the pandemic as authorized by the Families First Coronavirus Response Act (FFCRA). The increased FMAP was retroactive to January 1, 2020 and generally applied to Medicaid spending that would otherwise reimbursed at the state’s regular FMAP. The enhanced federal matching funds do not apply to administrative expenses or to Medicaid spending that is already subject to an increased match, including spending for ACA expansion adults (the FMAP is 90% for adults eligible through expansion). The Consolidated Appropriations Act, 2023 (CAA) delinked the continuous enrollment provision from the public health emergency (PHE), ending continuous enrollment on March 31, 2023. The CAA also phases down the enhanced federal Medicaid matching funds through December 2023, with the increased FMAP decreasing to 5 percentage points from April to June 2023, 2.5 percentage points from June to September 2023, and 1.5 percentage points from October to December 2023.

The federal funding from the enhanced FMAP was designed to support the costs of increased Medicaid enrollment and provide fiscal relief to states beyond the costs of enrollment growth. During economic downturns, enrollment in Medicaid grows, increasing state Medicaid costs while state tax revenues are declining. Congress enacted legislation to temporarily increase the federal share of Medicaid during the last two economic downturns prior to the pandemic. At the onset of the COVID-19 pandemic, states were projecting large revenue declines, but the enhanced FMAP provided new federal funding to states quickly by using an existing federal funding mechanism. Enhanced federal funding supported state Medicaid programs and helped free up state funds for other purposes including mitigating the need for widespread spending cuts on other services and filling gaps in state budget shortfalls.

How did Medicaid spending change during the pandemic?

State spending on Medicaid dipped below pre-pandemic levels even as enrollment in Medicaid increased by 23 million during the continuous enrollment period (Figure 1). The reduction in state spending reflected a sharp drop from $231 billion in 2019 to $214 billion in FY 2020, accompanied by an increase in federal spending of nearly $50 billion (from $393 billion to $444 billion). After 2020, state spending remained relatively stable while federal spending continued to increase due to the enhanced FMAP and total spending increased in conjunction with rising enrollment. State spending remained below 2019 levels in both expansion (defined as those having implemented Medicaid expansion as of 10/1/2021) and non-expansion states through the end of FY 2022. In the first six months of FY 2023—before the end of the continuous enrollment provision—we find that total and federal spending continued to increase while state spending returned to levels similar to the first two quarters of 2019. We expect spending and enrollment levels for the second half of 2023 to change, reflecting the end of the continuous enrollment period.

How much did states receive in enhanced federal funding during the continuous enrollment period?

During the continuous enrollment period, we estimate that states received over $117 billion in funding from the increased FMAP, with non-expansion states receiving a disproportionate share (Figure 2 and Appendix Table 1). Non-expansion states received 27% of the enhanced funding despite accounting for only 22% of all Medicaid spending because the enhanced FMAP does not apply to spending for people eligible through an ACA expansion. Across all states, the $117 billion in additional funding comprised an estimated 5% of total Medicaid spending and 7% of federal Medicaid spending during the continuous enrollment period (January 2020 through March 2023).

What might happen to Medicaid spending during the unwinding?

Although the size of the effects are quite uncertain, significant decreases in Medicaid enrollment are expected during the 14-month period in which states unwind the continuous enrollment period. KFF estimates that nationally Medicaid enrollment will decrease by 18% (17 million people) between March 2023 and May 2024 (based on a recent survey of states), but in practice, rates of enrollment decline will vary across states, depending on states’ approaches to unwinding. Early data from states shows substantial variation in disenrollment rates. While state Medicaid agencies report enrollment changes as the most significant factor driving changes in total Medicaid spending, they also note that factors such provider payment rate increases were putting upward pressure on spending. Overall, total Medicaid spending could decrease during the unwinding if the effects of enrollment losses are larger than the effects of other factors such as those.

Even with declining enrollment, state spending on Medicaid will likely increase as the enhanced FMAP expires. States are expecting the end of the enhanced FMAP to shift the state and federal spending shares, as has been the case in previous economic downturns when an enhanced FMAP expired. CBO estimates that federal spending will decrease by about 9% from FY 2023 to FY 2024. While states received substantial enhanced federal funding of $117 billion during the continuous enrollment period, they will likely see increases in state Medicaid spending as the enhanced federal matching funds expire at the end of the year.

The phase down of the enhanced FMAP was designed to provide continued financial support to states during the unwinding process and to mitigate sharp increases in state Medicaid spending. Before the CAA delinked the continuous enrollment provision and the enhanced FMAP from the PHE, the enhanced FMAP was set to expire at the end of the quarter when the PHE expired. The gradual phase-out of the FMAP through December 2023 recognizes that it will take states time to unwind the continuous enrollment provision and conduct redeterminations for all Medicaid enrollees. To be eligible for the enhanced match, states must meet certain eligibility, renewal, and reporting requirements. Recently, in a letter to CMS, Democratic lawmakers reiterated these beneficiary protections as well as CMS enforcement tools that were made available in the CAA, and CMS, in a letter to state governors, reiterated that states must comply with federal requirements to continue to draw down enhanced federal funds. The amount of the enhanced funding available to states during the unwinding will be smaller relative to the continuous-enrollment period, but it will still help mitigate the shift in funding from the federal government back to the states. As the enhanced federal funding is phased out and ultimately eliminated, the size of the increase in state Medicaid spending will depend on changes in total spending growth, which in turn will reflect how quickly people are disenrolled, how many new people come on to Medicaid, and how spending per person in the Medicaid program will change. These enrollment and spending changes will vary by state.

Appendix