VOLUME 14

Misleading Narratives and Social Media Shape Contraception Perceptions

This is Irving Washington and Hagere Yilma. We direct KFF’s Health Information and Trust Initiative and on behalf of all our colleagues at KFF, we’re pleased to bring you this edition of our bi-weekly Monitor.


Summary

This volume examines misleading claims about birth control, focusing on the distortion of emergency contraceptives, such as Plan B, as abortifacients. It also explores how social media and patient-provider communication shape perceptions of hormone-based contraceptives’ safety and effectiveness, particularly in response to online messaging that inaccurately promotes fertility awareness methods as safer alternatives.


Recent Developments

Narratives Claiming Contraceptives Terminate Pregnancies Complicate Access

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Emergency contraception (EC) and intrauterine devices (IUDs) are safe, effective methods for preventing pregnancy, but some anti-abortion groups misrepresent these methods, particularly EC, as abortifacients. These claims are rooted in the misconception that these methods can terminate an existing pregnancy, prevent the implantation of a fertilized egg, or affect a developing embryo. Despite the FDA clarifying in 2022 on the Plan B label that it does not block implantation, misinformation persists. This narrative has fueled opposition to policies that expand access to contraceptives, with some lawmakers claiming to support birth control but also embracing policies rooted in these false claims. KFF policy experts explain that these misconceptions underpin legal and legislative challenges. For example, in the Supreme Court case Burwell v. Hobby Lobby Stores, Inc. (2014), the plaintiffs successfully argued that covering IUDs and EC under the ACA violated their religious beliefs, claiming that they “believed” that these methods are abortifacients. In 2024, similar misinformation threatened the adoption of state legislation in Missouri and Louisiana aimed at improving contraception access, as some lawmakers expressed concerns these methods may induce abortions. The Missouri legislation ultimately passed after delays attributed to concerns from anti-abortion groups, but the proposed Louisiana law failed to advance after its introduction.

KFF Data Insights:

KFF polling has found that while the vast majority of U.S. adults (93%) have heard of emergency contraceptive (EC) pills, sometimes called the morning after pill or “Plan B,” knowledge gaps remain when it comes to accessing the medication and how it works.

One-third of adults who have heard of EC pills (including similar shares of women and men) incorrectly say that “emergency contraceptive pills are the same as the abortion pill,” and about three in four (including similar shares of women and men) incorrectly say that “emergency contraceptive pills can end a pregnancy in its early stages.” Women ages 18 to 49 are less likely than older women to say these false statements are true, though a majority (66%) still incorrectly believe that emergency contraceptive pills can end a pregnancy in its early stages.

A Third of Adults Incorrectly Believe Emergency Contraceptives are the Same as Abortion Pills, and Three in Four Incorrectly Say Contraceptive Pills Can End a Pregnancy in its Early Stages

Abortion bans have created uncertainty among providers and patients about the legality of EC in some states. According to a KFF issue brief, many bans define pregnancy as beginning at fertilization and effectively grant personhood to fertilized eggs. Combined with misconceptions that some contraceptives are abortifacients, this language can lead to abortion bans being interpreted as restricting access to contraceptives. KFF polling from 2023 finds that about half of women in states where abortion is banned either believe EC is illegal or are unsure of its legality. This uncertainty extends to providers, who may delay or deny services like IUDs and EC out of fear their actions could be misinterpreted as inducing abortion.

Estradaanton / Getty Images

Misleading claims about contraceptive safety and effectiveness on social media could be driven by a number of factors including lack of high-quality contraceptive counseling, lack of knowledge of potential side effects, as well as wellness influencers who speak out against hormones. Social media platforms like TikTokYouTube, and X amplify this misinformation with content creators frequently sharing unsubstantiated claims about the harms of hormonal contraceptives. These posts, often part of a broader trend against synthetic hormones, link hormonal contraceptive use to infertility, mental health challenges, and other health concerns. Personal anecdotes about side effects, coupled with critiques of pharmaceutical companies and the healthcare system, fuel these narratives. By sharing personal experiences and presenting themselves as relatable and independent, influencers are able to establish trust in a way that traditional health experts may not.

KFF Data Insights:

A November 2024 analysis of the KFF Women’s Health Survey examined women's experiences with contraception and the impact of contraceptive information on social media. The analysis found that approximately four in ten (39%) women of reproductive age report having encountered content related to birth control on social media in the past year. However, few women reported making or considering changes to their birth control method based on social media content.

Among those who have seen or heard birth control-related content on social media, 38% reported discussing the content with somebody in their lives. This includes about a quarter (25%) who had conversations with family or friends, 19% with their spouse or partner, and 10% who discussed the content with a doctor or healthcare provider.

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

Some content creators who advocate for avoiding synthetic hormones promote “natural” family planning methods—such as fertility awareness, cycle tracking, or the rhythm method—as healthier alternatives. These methods involve monitoring the menstrual cycle and avoiding intercourse or using non-hormonal birth control on fertile days. However, these approaches are generally less effective than hormonal contraceptives due to their reliance on precise knowledge and consistent application. Despite the proven effectiveness of hormonal contraceptives in preventing pregnancy, there are anecdotal reports of some women discontinuing their use, in part due to non-evidence-based fears fueled by such misinformation. While hormonal contraception may not be suitable for everyone, many individuals using “natural” family planning methods face challenges from a lack of proper guidance and difficulties with consistent use.

Contraceptive Counseling and Education Could Play a Role in Mitigating Misinformation

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Health professionals have an opportunity to address questions or concerns about side effects outside of social media. The 2022 KFF Women’s Health Survey found that healthcare providers are both the primary (57%) and preferred source (74%) of information for many reproductive-age women using contraception. The main area of desired information is side effects with about half (52%) of reproductive-age women using contraception reporting wanting more information about additional side effects of their chosen contraceptive method.

An example where social media spurred a change in clinical practice relates to IUD insertions. After a number of people spoke about and recorded their painful experiences with IUD insertions on social media, the CDC issued new guidance for clinicians to ensure pain management is offered and covered by insurance during IUD insertions.

In recent decades, clinicians have prioritized getting their patients on the most effective contraceptive methods without centering patient needs and preferences, while downplaying their experiences and side effects. This has led to distrust and opened the door for social media content to fill a void on contraception information, but at a cost. There have been recent efforts to prioritize and center counseling and contraceptive options based on patient choices rather than focused on effectiveness alone. In addition to counseling in a clinical setting, reliable and trusted organizations are increasingly using social media to discuss and educate people about contraceptive methods, side effects, and effectiveness as a countervailing force to address misinformation.


Research Insights

Impact of Physician Misconceptions About Contraception on Family Planning Care

Courtney Hale / Getty Images

Research published in the American Journal of Obstetrics & Gynecology surveyed physicians at the University of Wisconsin to examine their beliefs about contraception, particularly regarding misconceptions that methods like IUDs and ECs cause abortion. While most physicians surveyed correctly identified that pills, implants, and injections do not cause abortion, 17% believed IUDs and 39% thought EC were abortifacients. Male physicians and those with higher religiosity were more likely to hold these misconceptions. Obstetricians, gynecologists, and physicians who had some abortion education during training were less likely to believe IUDs and EC cause abortion compared to other specialties or those without training.

Source: Swan, L. E., Cutler, A. S., Lands, M., Schmuhl, N. B., & Higgins, J. A. (2023). Physician beliefs about contraceptive methods as abortifacients. AJOG, 78(1), 33-34.

Framework for Understanding How People Respond to Misinformation

gorodenkoff / Getty Images

An article in Human Communication Research introduces the Misinformation Resilience and Response Model (MRRM), which explains how individuals respond to misinformation. When faced with conflicting information, people experience cognitive dissonance and are motivated to resolve it. If they recognize misinformation, they may use strategies like counterarguing or avoidance, which can change their attitudes, emotions, or behaviors, such as sharing misinformation or altering health or political views. This model highlights the need for targeted intervention strategies to address misinformation effectively, but future research could help refine these strategies and improve their practical applications.

Source: Amazeen, M. A. (2024). The misinformation recognition and response model: an emerging theoretical framework for investigating antecedents to and consequences of misinformation recognition. Human Communication Research, 50(2), 218-229.


AI & Emerging Technology

Effectiveness of AI Chatbots in Addressing Health Misinformation

Vertigo3d / Getty Images

AI-powered chatbots show potential in addressing health misinformation by encouraging user engagement and reflection, but a 2023 systematic review on contraceptive knowledge found mixed results on their effectiveness. Some studies reviewed indicated increased contraception uptake in certain groups, while others saw no change in knowledge or intentions. This suggests that while chatbots offer convenience, their lack of emotional sensitivity and limited competency can hinder their effectiveness. A more recent study in the Harvard Misinformation Review also explored AI interventions aimed at addressing misinformation, but this time around belief in conspiracy theories. The study found that using an AI chatbot to prompt individuals to reflect on the reasons for their beliefs led to a reduction in the strength of that belief. However, this effect was less pronounced among individuals with strongly held beliefs, highlighting the challenge of changing deeply entrenched views. These findings point to the need for further research to determine the features that make AI chatbots effective in countering health misinformation.


This edition was created in close collaboration with KFF’s Women’s Health Policy team.

About The Health Information and Trust Initiative: the Health Information and Trust Initiative is a KFF program aimed at tracking health misinformation in the U.S., analyzing its impact on the American people, and mobilizing media to address the problem. Our goal is to be of service to everyone working on health misinformation, strengthen efforts to counter misinformation, and build trust. 


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Support for the Health Information and Trust initiative is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed do not necessarily reflect the views of RWJF and KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities. The Public Good Projects (PGP) provides media monitoring data KFF uses in producing the Monitor.

News Release

Affordable Care Act Marketplace and Medicaid Expansion Enrollment Reached a Combined 44 Million in 2024  

Published: Jan 15, 2025

A new KFF analysis finds that there were 44 million people enrolled in health coverage through the Affordable Care Act’s Marketplaces and its expansion of the Medicaid program in 2024. That represents about 1 in every 6 people under age 65, or 16.4%.  

There was significant variation in ACA enrollment across states, ranging from about 1 in 4 nonelderly people in Louisiana, Oregon, Florida, and New York to fewer than 1 in 10 in Tennessee, Alabama, Wyoming, Kansas, and Wisconsin, according to the analysis.  

With the exception of Florida, the states with the largest ACA-related enrollment as a share of population had adopted the Medicaid expansion, while all five states with the lowest share of enrollment were non-expansion states. (The data includes enrollment in the Basic Health Program, an option offered by some states under the ACA to provide coverage for low-income residents who would otherwise be eligible to obtain coverage through the Marketplace. There were 1.3 million people enrolled in this option in 2024.) 

The new analysis helps illustrate how many people could potentially be affected by the anticipated policy debates in Congress, including whether to allow enhanced ACA Marketplace subsidies to expire this year, whether to reduce the federal share of Medicaid expansion funding, or whether to enact deeper spending cuts to ACA subsidies and Medicaid to help pay for expected tax cuts.   

From 2020 to 2024, total enrollment in ACA programs (Medicaid, Marketplace, and Basic Health Plan) increased by nearly 60%, with the largest increase among Marketplace enrollees, helping to drive the uninsured rate down to historic lows.  The number of Marketplace enrollees increased by 10 million people nationally, almost doubling, over the period, and the number of Medicaid expansion enrollees increased by 6.2 million people. States with the largest increases in enrollment, in percentage terms, included Missouri (243%), Oklahoma (227%), Texas (212%), Mississippi (190%), North Carolina (185%) and Georgia (186%).  

Growth in Marketplace enrollment over the period can be largely attributed to the temporary enhanced subsidies that were made available in 2021, which were extended through 2025. Marketplace enrollment climbed to a new record high in 2025, with nearly 24 million people signing up for plans during the current enrollment period.  Marketplace enrollment was 21.4 million in 2024.

Medicaid expansion enrollment increased due to more states implementing expansion (seven states—Idaho, Missouri, Nebraska, North Carolina, Oklahoma, South Dakota, and Utah—implemented Medicaid expansion during or after 2020) and because of the pause in disenrollments from the pandemic-era continuous enrollment provision. Medicaid expansion enrollment totaled 21.3 million people in 2024. Even with the unwinding of the continuous enrollment provision that was still in play through March 2024, overall enrollment in Medicaid expansion is higher than in 2020.   

A Look at ACA Coverage through the Marketplaces and Medicaid Expansion Ahead of Potential Policy Changes

Published: Jan 15, 2025

The Affordable Care Act (ACA) expanded health insurance coverage by extending Medicaid coverage to nearly all adults with incomes up to 138% of the federal poverty level (FPL) ($20,783 for a single individual in 2024) and by creating new health insurance Marketplaces through which individuals can purchase private insurance coverage with financial help to afford premiums and cost-sharing. Marketplace subsidies are available for individuals not eligible for Medicaid with incomes above 100% FPL. The Medicaid expansion was originally mandatory for states, but expansion became effectively optional after a Supreme Court decision in 2012. States can opt to provide more affordable coverage to individuals who would otherwise be eligible for Marketplace coverage with incomes between 133% and 200% FPL through a Basic Health Program (BHP). In 2024 Minnesota had a BHP plan, Oregon newly implemented a BHP on July 1, 2024, and New York had a BHP until April 2024 when it transitioned to provide the same coverage to individuals with incomes up to 250% FPL through the state’s Essential Plan (EP).

In total, 2024 ACA enrollment (including Marketplace, Medicaid expansion, and BHP) reached 44 million, or 16.4% of the nonelderly U.S. population. In 2024, Marketplace enrollment hit a new record high, of 21.4 million people (almost double the 11 million people enrolled in 2020), Medicaid expansion enrollment was 21.3 million (a 41% increase from 2020), and BHP enrollment in 2024 was 1.3 million (up from 880,000 in 2020).

Marketplace growth since 2020 can be largely attributed to enhanced subsidies made available by the American Rescue Plan Act (ARPA) in 2021 and renewed through 2025 under the Inflation Reduction Act (IRA). These enhanced subsidies significantly reduced premium payments across the board for ACA Marketplace enrollees – including $0 monthly premiums for enrollees with incomes up to 150% FPL – and made some middle-income people who had previously been priced out of coverage newly eligible for financial assistance. Medicaid expansion enrollment increased due to seven states newly implementing expansion in 2020 or later and adoption of the continuous enrollment provision, a pandemic-era policy that prohibited states from disenrolling people from Medicaid in exchange for enhanced federal funding. Even with the unwinding of the continuous enrollment provision starting April 1, 2023, enrollment in the Medicaid expansion today is higher than it was in 2020.

The uninsured rate hit an historic low in 2023 as coverage through the ACA and Medicaid increased, but these coverage gains may not last for long. If enhanced subsidies are not renewed by Congress and are instead allowed to expire at the end of 2025, ACA enrollee premium payments are expected to increase by over 75% on average, and the Congressional Budget Office (CBO) estimates that the number of people who are uninsured will increase by 3.8 million, on average, in each year over the 2026-2034 period. In addition, potential Congressional efforts to lower the Medicaid expansion match rate from the current 90% rate could reduce federal spending but would shift costs to states and likely result in decisions by many states to terminate coverage. About 4.3 million Medicaid expansion enrollees live in states with some type of trigger law that would end Medicaid expansion or require review of expansion coverage to mitigate increases in state costs if federal funding for the expansion is reduced. There is also potential for deeper cuts to the ACA and Medicaid to help offset increases in the deficit if expiring tax cuts are extended.

While 1 in 6 nonelderly people in the U.S. had some form of ACA coverage in 2024, there was significant variation across states. More than 1 in 5 nonelderly people in seven states (Louisiana, Oregon, Florida, New York, California, New Mexico, and Vermont) and the District of Columbia had ACA coverage through Medicaid expansion, Marketplace, or BHP in 2024. Meanwhile, fewer than 1 in 10 nonelderly residents of five states (Alabama, Kansas, Tennessee, Wisconsin, and Wyoming) had coverage through one of these three ACA programs (Figure 1). With the exception of Florida, the states with the largest ACA enrollment as a share of population had adopted the Medicaid expansion. The five states with the lowest share of enrollment were Medicaid non-expansion states.

In 2024, 1 in 6 nonelderly people had health coverage through the Affordable Care Act (ACA).

From 2020 to 2024, total enrollment in ACA programs (Medicaid expansion, Marketplace, and Basic Health Plan) increased by nearly 60%, with the largest increase among Marketplace enrollees. Growth in Marketplace enrollment from 2020 can be largely attributed to the temporary enhanced subsidies that were made available in 2021 and extended through 2025. Marketplace enrollment growth was greatest among states that have not expanded Medicaid. Meanwhile, Medicaid expansion enrollment similarly increased due to more states implementing expansion (seven states — Idaho, Missouri, Nebraska, North Carolina, Oklahoma, South Dakota, and Utah — implemented Medicaid expansion during or after 2020), and because of the pause in disenrollments from the continuous enrollment provision. Even with the unwinding of the Medicaid continuous enrollment provision that was still in play through March 2024, enrollment in Medicaid expansion is currently higher than it was in 2020. The number of Marketplace enrollees increased by 10 million people nationally, almost doubling, between 2020 and 2024, and the number of Medicaid expansion enrollees increased by 6.2 million people. In 2024, Marketplace consumers made up 49% of all people enrolled in ACA coverage compared to 42% in 2020 (Figure 2).

Total Number of People Enrolled in ACA Coverage Through the Marketplaces, Basic Health Plans, and Medicaid Expansion, 2020 and 2024

From 2020 to 2024, the rate of growth in ACA enrollment varied widely by state, more than doubling in some states while changing very little in others. Enrollment across the three ACA programs more than doubled from 2020 to 2024 in twelve states: Missouri (243%), Oklahoma (227%), Texas (212%), Mississippi (190%), North Carolina (185%), Georgia (181%), Tennessee (177%), South Carolina (167%), South Dakota (155%), Alabama (141%), Florida (120%), and Nebraska (113%, Figure 3). Meanwhile, other states saw less than 20% growth over those four years: Washington (19%), Rhode Island (18%), Kentucky (17%), Colorado (17%), the District of Columbia (16%), Montana (14%), New Mexico (11%), and Massachusetts (10%).

Percent Change in ACA Coverage Enrollment in the Marketplaces, Basic Health Plans, and in the Medicaid Expansion, 2020-2024

Of the ten states with the largest increase in ACA program enrollment from 2020 to 2024, all were won by President Trump in the 2024 election, and none had expanded Medicaid before 2020. In non-expansion states, individuals with incomes between 100% and 138% FPL are eligible for subsidized Marketplace coverage, and with the enhanced subsidies making the coverage more affordable by providing coverage with $0 premiums, more people enrolled. All non-expansion states, except Wisconsin, and all states that adopted Medicaid expansion in 2020 or later, except Idaho, had increases in ACA enrollment that exceeded the national increase of 61%. (Wisconsin Medicaid eligibility extends to 100% FPL so there is no coverage gap.) Meanwhile, many of the states with lower enrollment growth over the last four years have long embraced the ACA (adopting Medicaid expansion early on and creating their own state-based Marketplaces), so they started out with relatively high shares of their populations already enrolled in ACA coverage in 2020 (Table 1).

Enrollment in ACA Coverage Through the Marketplaces, Basic Health Plans, and Medicaid Expansion, 2020-2024

How do Medicaid Home Care Programs Support Family Caregivers?

Authors: Alice Burns, Abby Wolk, Molly O'Malley Watts, and Maiss Mohamed
Published: Jan 13, 2025

Issue Brief

KFF estimates that 4.5 million people use Medicaid home care, which provides medical and supportive services to help people with the activities of daily living (such as eating and bathing) and the instrumental activities of daily living (such as preparing meals and managing medications). Medicare generally does not cover home care (also known as home- and community-based services or HCBS), and Medicaid paid for two-thirds of home care spending in the United States in 2022. In Medicaid home care, many people “self-direct” their services, giving them greater autonomy over the types of services provided and who they are provided by; and in some cases, allowing payments to family caregivers. Beyond paying for their caregiving, Medicaid supports family caregivers with services such as training, support groups, and respite care (which is paid care that allows family caregivers to take a break from their normal responsibilities). According to a document made public by Politico, House Republicans are considering reducing Medicaid spending by $2.3 trillion over 10 years, which represents a nearly one-third reduction in Medicaid spending. Cuts of that magnitude would limit states’ ability to continue supporting family caregivers.

This issue brief describes the availability of self-directed services and supports for family caregivers in Medicaid home care. (It is unknown how many people are receiving paid care from family and friends, or how many family caregivers are receiving supports from Medicaid.) The data come from the 22nd KFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia, which states completed between April and October 2024. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida, Indiana, and Utah responded to the 2024 survey, but response rates for certain questions were lower. Key findings include:

  • All reporting states except Alaska allow Medicaid enrollees to self-direct their home care in at least some circumstances, and among those states all allow enrollees to select, train, and dismiss their caregivers.
  • All responding states (which includes the District of Columbia) pay family caregivers under some circumstances and provide family caregivers with other types of support, including respite care (Figure 1, Appendix Table 1)
  • Family supports are most widely available for caregivers of people with intellectual or developmental disabilities.

All Responding States Pay Family Caregivers Under Some Circumstances

Self-directed services and payments to family caregivers are one of the tools states are using to address shortages of direct care workers, including those who work in home and community settings. Shortages and high turnover rates among the direct care workforce reflect demanding work and low wages. The COVID-19 pandemic escalated an existing workforce challenge for Medicaid home care, and states used new federal funding and flexibility to maintain service levels by increasing self-directed services and payments to family caregivers. Although the pandemic-era flexibilities have ended and the extra funding is winding down, states continue to provide wide-ranging support to family caregivers through Medicaid home care programs.

There is bipartisan support for family caregivers, but funding for programs that support family caregivers is at risk under proposals to cut Medicaid spending by a third. In recent years, there has been bipartisan support for family caregivers, and Congress enacted 2018 law to create a Family Caregiving Advisory Council. The Council’s 2024 report notes that family caregivers are the backbone of the nation’s long-term care system, and that without support, the health, well-being, qualify of life, and finances of family caregivers often suffer. In keeping with bipartisan recognition of the role of family caregivers in the long-term care system, President-elect Trump proposed new supports for family caregivers prior to the election. However, those supports are at risk under Republican proposals to reduce Medicaid spending by $2.3 trillion over 10 years. Over half of Medicaid spending is for the types of Medicaid enrollees most likely to use home care and related services, and major cuts to Medicaid will have implications for their care. States may be forced to reduce spending on Medicaid by eliminating coverage for some people; covering fewer services, and (or) cutting payment rates to providers and supports for family caregivers.

Which states allow Medicaid enrollees to self-direct their home care and for what services?

Nearly all states allow Medicaid enrollees to self-direct their home care in some circumstances (Figure 2, Appendix Table 2). Self-direction came out of the “consumer-directed” movement for personal care services that started with demonstration programs in 19 states funded through grants from the Robert Wood Johnson Foundation. Today, states may give people the option to self-direct home care through a wide variety of optional home care programs. States most frequently allow self-direction in waivers that serve people with intellectual or developmental disabilities, followed by people who are ages 65 and older or have physical disabilities. Among the 48 states responding to KFF’s survey, Alaska is the only reporting state that does not permit self-direction under any of the home care programs.

Nearly All States Allow Individuals to Self-Direct Home Care Under at Least One Program

Among states that authorize self-direction, all states allow enrollees to select, dismiss, and train workers (Figure 3). The ability to select, train, and dismiss workers is referred to as “employer authority” because it allows Medicaid enrollees (with the help of their designated representatives when appropriate) to decide who will be caring for them. All states with self-directed services programs provide employer authority to enrollees. Most states also allow enrollees to establish payment rates for their caregivers (38) and to determine how much Medicaid funding is spent among the various authorized services (36).

All States with Self-Directed Home Care Programs Allow Enrollees to Select their Caregivers

Which states pay family caregivers and through which home care programs?

All responding states pay family caregivers through one or more Medicaid home care programs (Figure 1, Appendix Table 1). Payments for family caregivers are generally allowed for the provision of personal care, which may be offered through several different types of Medicaid HCBS programs. Personal care may be provided through waivers such as 1115 or 1915(c) programs, through the Medicaid state plan, or a combination of both. Waiver services tend to encompass a wider range of benefits than the state plan benefit, but waivers are usually restricted to specific groups of Medicaid enrollees based on geographic region, income, or type of disability; and are often only available to a limited number of people, resulting in waiting lists.

All responding states allow payments to family and friends through one or more waiver programs, but fewer states allow payments to legally responsible relatives. Forty states allow payments to legally responsible relatives through waiver programs, and only six states allow payments to legally responsible relatives through the state plan. Payments to other family and friends are also less common through the state plan—allowed by only 22 states. The less common payments to family caregivers through the state plan is because not all states provide personal care through the state plan, and because the legal requirements governing state plan services differ from those governing waiver services.

What are the legal requirements for paying family caregivers?

Medicaid laws have more complicated requirements for states to pay legally responsible relatives than is the case for other types of family and friend caregivers. The specific legal requirements for paying family caregivers are complicated and differ across home care programs:

• For personal care offered through the state plan using section 1905 authority, there is a federal prohibition on paying for services provided by spouses and parents of minor children. Other family and friends may be paid if they meet applicable provider qualifications, there are strict controls on the payments, and the provision of care is justified (which can be done when there is a lack of other qualified providers in the area).

• For home care offered through waiver programs, states may pay legally responsible relatives when the services being provided are “extraordinary care,” which is defined as care that exceeds the range of activities a legally responsible relative would ordinarily perform and is necessary to health, welfare, and avoiding institutionalization. All family and friends who are paid must meet similar requirements as to those governing personal care in the state plan.

• For personal care offered through the state plan using one of the section 1915 authorities, states may pay legally responsible relatives using criteria like those of the waiver programs. Some of those authorities designate a family member as a legal representative and in some cases, family members who are legal representatives may not also be paid caregivers.

Payments for family caregivers are most common under waivers for people with intellectual or developmental disabilities (Figure 4, Appendix Table 3). Among the 45 states that responded to the survey and have waivers for people with intellectual or developmental disabilities, 44 allow payments to family caregivers. There are fewer states with other types of waivers, and the percentage of those states that allow payments to family caregivers is also lower – 39 states for waivers serving adults who are ages 65 and older or have physical disabilities, 17 states for people with traumatic brain or spinal cord injuries, and less states for other types of waivers.

Among Waivers and Programs, States are Most Likely to Pay Family Caregivers for People with Intellectual or Developmental Disabilities

In most cases, family caregivers receive hourly wages like those of other employees, but 10 states have adopted programs known as structured family caregiving, in which family members are paid a per diem rate (Appendix Table 4). Structured family caregiving is a Medicaid benefit that supports unpaid caregivers of people who use Medicaid home care through waiver programs. In the structured program, Medicaid pays provider agencies a daily stipend for participants. The agency is responsible for directing a care coordinator or social worker and a nurse to oversee the family caregiver, answer health-related questions, and provide emotional support; conducting home visits about once per month; and passing a fixed percentage of the stipend (usually 50% - 65%) on to the family caregiver. Among the handful of payment rates reported in an overview of the program by the American Council on Aging, payments to family members are around $40 or $50 per day. States reported structured family caregiving programs in the following waivers:

  • Seniors and people with disabilities in 7 states (Connecticut, Georgia, Indiana, Louisiana, North Carolina, North Dakota, and South Dakota),
  • People with intellectual and developmental disabilities in 3 states (Indiana, Maryland, and New Mexico),
  • Medically fragile children in North Carolina, and
  • People with Alzheimer’s and related disorders in Missouri.

What other types of support does Medicaid home care provide for family caregivers?

All responding states provide support for family caregivers—who may be paid or unpaid—and most offer more than one type of support (Figure 5, Appendix Table 5). The most commonly covered benefit was respite care (offered by 47 states—all responding states except for Oregon), which provides short-term relief for caregivers, allowing them to rest, travel, attend appointments, or spend time with other family and friends. Other commonly covered benefits include caregiver training (33 states), and counseling or support groups (23 states).

All Responding States Provide Supports for Family Caregivers Through Medicaid Home Care

Respite care may be provided anywhere from a few hours to several weeks at a time. Medicare only covers respite care for people who are receiving hospice care, which is only available for people who are terminally ill and electing to receive comfort care instead of curative care for their illness. That makes Medicaid’s respite care the primary source of coverage for caregivers of people with Medicare and Medicaid. Respite care is offered most frequently under waivers for people with intellectual or developmental disabilities (42 states) and seniors and people with disabilities (38 states).

Daily respite care is offered by the most states (40), followed by institutional respite care (offered by 35), but different types of waivers tend to rely more heavily on different types of respite care (Figure 6, Appendix Table 6). Daily respite care is available under waivers for people with intellectual and developmental disabilities in 31 states but only available in 26 states within waivers for people who are ages 65 and older or have physical disabilities. Alternatively, 26 states provide institutional respite care within waivers for people who are ages 65 and older or have physical disabilities but only 19 states do so within waivers for people with intellectual and developmental disabilities. Weekly respite care is the least frequently offered, and over half of states (30) report offering other types such as hourly, monthly, or annual. Some states reported covering respite care through adult day centers or overnight camps.

Among Waivers and Programs, States are Most Likely to Offer Daily Respite Care

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

Appendix

States' Policies to Allow Medicaid Home Care Payments to Spouses, Parents of Minor Children, and Other Legally Responsible Relatives for Caregiving

States' Policies to Allow Individuals to Self-Direct Medicaid Home Care by Waiver/Program

States' Policies to Allow Medicaid Home Care Payments to Spouses, Parents of Minor Children, and Other Legally Responsible Relatives as well as Family and Friends for Caregiving

States Offering the Structured Family Caregiver Program, Which Supports Unpaid Caregivers of Persons Who are Using Medicaid Home Care, and Waivers the Program is Offered Under

States’ Policies for Offering Different Types of Family Caregiving Supports

Types of Respite Care Offered by State and Home Care Program: Daily, Weekly, Institutional, and Other

Section 1115 Waiver Watch: A Look at the Use of Contingency Management to Address Stimulant Use Disorder

Published: Jan 9, 2025

This analysis was updated on January 9, 2025 to reflect the approval of Hawaii’s waiver.

As of 2019, over 800,000 Medicaid enrollees between the ages of 12 to 64 had a diagnosed stimulant use disorder that was recorded in Medicaid claims data (though this is likely an undercount). Stimulant use disorder—which can involve dependence on cocaine, methamphetamine, or other psychostimulants, like prescription stimulants—can lead to severe physical and psychological complications. Unlike opioid and alcohol use disorders, there are no FDA-approved medications for treatment, limiting treatment options for those affected. A November 2023 report from the Assistant Secretary for Planning and Evaluation (ASPE) included recommendations to expand “contingency management.”

Contingency management is an evidence-based psychosocial intervention that uses motivational incentives, such as vouchers or gift cards, to encourage recovery behaviors like stimulant abstinence and treatment session (e.g., cognitive behavioral therapy, group therapy) attendance. According to the American Society of Addiction Medicine, contingency management is the current evidence-based standard of care for treatment of stimulant use disorder. However, access through most payers, including Medicaid, remains limited. CMS policy only allows states to add contingency management coverage through Medicaid 1115 demonstration waiver authority.

The Biden administration has approved five state contingency management waivers (California, Delaware, Hawaii, Montana, and Washington); two additional state contingency management requests are currently pending federal review. These waivers are primarily for the treatment of stimulant use disorder. It is uncertain if these waivers will be a priority under the next Trump administration. This waiver watch briefly explains what contingency management is and summarizes contingency management 1115 waiver approvals to-date.


What is contingency management?

Contingency management is a treatment for stimulant use disorder that uses incentives (e.g., gift cards or vouchers) to reward patients for meeting treatment goals, such as stimulant abstinence. For instance, a contingency management treatment plan may involve weekly urine drug tests, with immediate rewards for negative results. Contingency management can also be combined with other therapies, such as cognitive behavioral therapy, with incentives tied to participation in treatments like group therapy or counseling sessions. The American Society of Addiction Medicine recognizes contingency management as the current standard of care for stimulant use disorder due its strong evidence base. Currently, there are no medication treatment options available for stimulant use disorder. Contingency management can also be used as a treatment or support for other types of substance use disorders, such as improving adherence to medication for opioid or alcohol use disorders. Although the Department of Veterans Affairs began implementing contingency management over a decade ago, access through most payers, including Medicaid, remains limited.


How are states using Section 1115 waivers to provide contingency management?

In December of 2021, CMS approved the first contingency management waiver in California and has since approved contingency management waivers in four additional states (Delaware, Hawaii, Montana, and Washington). Two states currently have pending contingency management requests (Michigan and Rhode Island). In waiver approvals, CMS clarifies that for the purposes of these demonstrations, motivational incentives do not violate federal rules that prohibit or limit providers from offering incentives to patients, and contingency management is considered a Medicaid-covered item or service based on the available scientific evidence for treating a substance use disorder. Some states, such as Montana and Washington, are using waivers to build upon successful state contingency management pilots that are grant or state funded, or funded using opioid settlement funds. Key waiver approval details include (Table 1):

  • Eligibility. All states with current approvals cover contingency management treatment services for people with stimulant use disorder. In some states, contingency management will also be used for people with other types of substance use disorders alongside FDA approved medication-assisted treatment for opioid or alcohol use disorders to improve treatment adherence. CMS notes medication-assisted treatment should be prioritized for opioid and alcohol use disorders.
  • Program length. State approvals range from 12-week programs to 64-week programs (based on target population).
  • Incentive amounts. Gift cards (e.g., to Walmart or other retailers) begin at $10-$12 and increase with each week the participating beneficiary demonstrates non-use of stimulants but are “reset” back to the base amount if a participant submits a positive sample or has an unexcused absence. (Motivational incentives earned through these programs do not count towards gross countable income for determining Medicaid eligibility).

All waiver approvals include protections such as staff training requirements, incentive restrictions, and protections against fraud and abuse. Waiver special terms and conditions detail the following requirements for all states:

  • Providers. Contingency management benefits are to be delivered through behavioral health providers approved by the state. States must conduct provider readiness reviews to ensure that providers are able to offer contingency management benefit in accordance with state standards. Staff providing or overseeing contingency management benefits must participate in contingency management-specific training.
  • Incentive restrictions. Restrictions must be placed on incentives so they cannot be used to purchase cannabis, tobacco, alcohol, or lottery tickets.
  • Provider fraud and abuse protections. To protect against fraud and abuse, states must set standard incentive amounts (i.e., providers will not have discretion to set these amounts). States also must use secure incentive management tools with safeguards against fraud and abuse that automatically calculate incentive amounts and generate incentives for patients based on drug test results inputted by the coordinator.

Of the 800,000 Medicaid enrollees aged 12 to 64 with a diagnosed stimulant use disorder recorded in Medicaid claims data in 2019, about 22% were residing in states that now have approved 1115 waivers for contingency management services (California, Delaware, Hawaii, Montana, Washington). If the currently pending waivers (Michigan and Rhode Island) are also approved, this coverage could extend to 26% of enrollees with a diagnosed stimulant use disorder. However, these numbers likely underestimate the total number of Medicaid enrollees with a stimulant use disorder, as not all individuals are screened, and diagnoses are not always recorded. Not all individuals with stimulant use disorder in these states will be eligible for or receive contingency management services. In California, 3,255 people received contingency management services from the launch of the program in April 2023 to June 2024.

Summary Of Approved Section 1115 Contingency Management Waivers

How State Policies Shape Access to Abortion Coverage

(Updated January 8, 2025 with new updates for Minnesota) 

State and federal efforts to limit abortion coverage began soon after the 1973 Supreme Court’s Roe v Wade decision. In 1977, the Hyde Amendment banned federal funding for abortion, with exceptions for pregnancies that endanger the life of the woman, or result from rape or incest. Some states use their own funds to cover other medically necessary abortions for their Medicaid enrollees or have been compelled to do so by the courts. The passage of the ACA in 2010 led to renewed legislative efforts to limit abortion coverage, this time in private insurance plans. The ACA maintains the Hyde Amendment’s limits, and permits states to ban abortion coverage from Marketplace plans. Since 2010, many states have enacted private plan restrictions and also banned abortion coverage from Marketplace plans, some of which are more restrictive than the Hyde limitations. A handful of states, however, have enacted laws that require private plans to cover abortion and state funds to cover abortions for Medicaid enrollees.

The interactive map below shows the increase in states with laws restricting abortion coverage for Medicaid and private insurance enrollees in 2010 compared to the present.

State Policies on Abortion Coverage for Medicaid, Private Insurance, and ACA Exchange Plan Enrollees – 2010 (Choropleth map)

Medicaid Coverage Limitations (35 states & DC) - State limits Medicaid coverage of abortion to the Hyde Amendment restrictions (only allowed in the cases of rape, incest or life endangerment).

Private Insurance Coverage Limitations (5 states) - State has a law that prohibits coverage of abortions from being included in private insurance policies sold in the state (with certain exceptions). Private insurance includes individual, small group, and large group. Some states may allow abortion coverage to be purchased as a rider.

State Marketplace Coverage Limitations - State has a law that prohibits plans sold on state Marketplaces from covering abortion (with certain exceptions).

No Coverage Limitations (14 states) - State does not limit coverage of abortion in private insurance or the state Marketplace and the state Medicaid program does not ban the use of state funds (non-federal) to pay for abortion for Medicaid enrollees in circumstances outside of those allowed by the Hyde Amendment.

Requires Abortion Coverage in Private Plans and for Medicaid Enrollees (1 state) - State has a law that requires all fully-insured group plans and individual plans to include abortion coverage and state funds to cover abortion for Medicaid enrollees.

A New Reproductive Health Landscape? Possible Actions that Could be Undertaken During the Second Trump Administration

Published: Dec 19, 2024

In January 2025, President-elect Trump will be sworn in with Republican control of Congress and a conservative majority in the Supreme Court, which will potentially provide broad latitude for the adoption of a conservative agenda. Federal policymakers have many levers to make major changes that will shape the access and availability of reproductive health including abortion, contraception and maternity care in ways that could affect the whole nation, even in states where the right to reproductive health care is enshrined by the state constitution. In addition to enacting legislation, presidential executive orders, litigation, regulatory actions, and nominations to the judiciary, cabinet, and other leadership position appointments will all affect policy.

This brief reviews some of the possible actions of the incoming Trump administration and new Congress based on campaign statements, policies implemented by the first Trump administration, and proposals forwarded by allied conservative think tanks and antiabortion advocacy groups. While President-elect Trump has generally said in recent comments that he would leave abortion policy up to states, his statements at times leave open the possibility for federal changes, and he will likely come under pressure from outside groups and Congress to restrict abortion access.

Abortion

Trump takes credit for overturning Roe and has said that states should set their own abortion policy, including banning abortion. As President, he could support additional policies that would result in limits to abortion access in all states, even without enacting a national abortion ban.

Currently, 13 states ban abortion with very few exceptions and several other states limit abortion availability to early in pregnancy. While Trump has said that he would not sign a federal bill banning abortion in all states, there are many levers that an anti-abortion administration can use to severely limit abortion access. Project 2025 and other anti-abortion organizations and policymakers have outlined a clear agenda, with the goal of banning or severely restricting abortion, especially targeting medication abortion given its dominance as a method of abortion and the current FDA policy that allows for the mailing of abortion pills without the need for any in person contact with a clinician.

Abortion Access

Trump has given conflicting statements about whether he would support a national ban that would apply in all states. At times, he has suggested that he would support a nationwide ban at 15 or 16 weeks gestation, but also has said that he would not sign a national ban. He has said that he believes in exceptions for cases of rape, incest, and life of the mother, but has not forwarded a stance on health exceptions. In his recent comments, Trump has said he would leave abortion access up to states.

Enforcing the Comstock Act

Medication abortion pills account for the majority of abortions in the U.S. The Comstock Act is an 1873 anti-vice law banning the mailing of “obscene” matter and articles used to produce abortion. The Biden administration’s Department of Justice determined that the Act only applies when the sender intends for material or drug to be used for an illegal abortion, and because there are legal uses of abortion drugs in every state including to save the life of the pregnant person, there is no way to determine the intent of the sender. However, this analysis does not preclude the Trump administration from interpreting the Comstock Act differently. President-elect Trump’s statements about medication abortion have been inconsistent, at times suggesting he would not block their availability and decline to enforce the Comstock Act. Recently, Trump said he “probably” would not move to restrict medication abortion but added that “things change.” Some Republican leaders, including Vice president-elect Vance and the authors of Project 2025 —the detailed conservative policy treatise that was spearheaded by many former Trump administration leaders – have called for a literal interpretation and enforcement of the Comstock Act to halt the mailing of all abortion medications and supplies to all states. This would impact not only residents of states where abortion is banned or restricted but all states, even those that have a guaranteed right to abortion in their state constitutions.

FDA Review of Mifepristone

The new director of the FDA will have significant influence over drug approvals, restrictions, and the broader agenda and priorities of the FDA. President-elect Trump recently indicated he will probably not restrict access to medication abortion but left room to change his position. Project 2025 and other conservative groups are calling for the FDA to retract its approval of medication abortion pills. Short of reversal, they seek to revert to older FDA protocols and restrictions that would reduce the gestational period for medication abortion pills, prohibit telehealth appointments and access through pharmacies, which were approved after President Biden took office. These issues are at the core of a federal lawsuit against the FDA that has been brought by Republican states, which the Trump administration may not defend and could succeed in front of a conservative Supreme Court.

Project 2025 also calls on the FDA to ease the process for health care providers to report complications resulting from abortion pills to the FDA Adverse Events Reporting System (FAERS). Although it’s not yet clear how the new director will address mifepristone, Trump’s nominee, Dr. Martin Makary, has stated that fetuses feel pain during an abortion between 15 and 22 weeks gestation, despite conclusive evidence by major medical organizations and systematic reviews that find that a human fetus does not have the ability to experience pain at that point in pregnancy.

Since the Dobbs ruling, there have been numerous cases of deaths and near-death experiences attributed to denials and delays in providing abortion care to people experiencing miscarriages and pregnancy-related emergencies. EMTALA is the federal law that requires hospitals to provide health stabilizing treatment to patients who present to their emergency rooms, and the Biden administration issued guidance reiterating that EMTALA applies to abortion care provided in the cases of pregnancy-related emergencies. The Biden administration defended this policy in an ongoing case, but the Trump administration could withdraw the current guidance and stop defending the Biden administrations’ policy, as recommended by Project 2025, which argues that emergency abortion denials are not a problem.  President-elect Trump has not commented specifically on this issue. While Trump disavowed Project 2025 during the campaign, he has also announced appointments of a number of people tied to the effort since the election.

Coverage under Medicaid and ACA Marketplaces

The Hyde Amendment is a policy attached to the Congressional appropriations bill annually that bars the use of any federal funds for abortion, only allowing exceptions to pay for terminating pregnancies that endanger the life of the pregnant person or that result from rape or incest. While Trump has not spoken about the Hyde Amendment recently, he had earlier pledged to make it permanent law, as advocated by Project 2025. The report also urges policymakers to resurrect an earlier proposed Trump administration policy that would have required enrollees in ACA Marketplace plans to submit two separate payments if they choose a plan that includes abortion coverage.

Data and Research

The Trump administration could exert its influence over research and surveillance on abortion activities across multiple federal agencies. The Project 2025 report addresses abortion-related data collection and research. In particular, the report calls for CDC research on the risks of abortion, abortion survivors, and requiring reporting on the number of abortions from every state (currently voluntary) as a condition of receiving federal Medicaid funds. The plan details the need to collect data on abortion rates across various demographic groups, monitor the number of cases of infants born alive after abortions (which does not happen), abortion harms, and withhold HHS funds from states where abortion remains legal if they do not comply with these requirements. Any new requirement on states as a condition of receiving federal Medicaid funds will likely be challenged in the courts.

The new administration may also curtail scientific research and vaccine development by reinstating a previous Trump administration policy that barred NIH funding for projects that use of tissue and cell lines that are byproducts of abortions. Project 2025 characterizes this as “the destruction of human life” and a major breach of ethics that government should prohibit. It could also be used to build the case for establishing “fetal personhood” arguments that can be used to further embed abortion bans and restrictions.

There are a number of other administrative actions that were passed under President Biden that the Trump administration could revoke, including guidance that reinforced requirements for pharmacies to fulfill their obligation to provide access to reproductive health pharmaceuticals, enforcement of non-discrimination policies for health care providers, and rules that strengthened data privacy to protect those seeking reproductive health care.

Religious Refusals

Trump’s first administration prioritized expanding religious exceptions to the provision or coverage of certain health care services. During his first term, HHS created a Division on Conscience and Religious Freedom and proposed multiple policies that would expand religious exemptions for health care providers and payors. Additionally, CMS invoked the Weldon Amendment and threatened to withhold federal Medicaid dollars from California because of the state’s policy requiring abortion benefits in all state-regulated health plans. The amendment is attached annually to a federal spending bill, and bars HHS funds from going to programs or state and local governments that “discriminate” against plans, providers, or clinicians that refuse to provide, offer referrals for, pay for, or cover abortions.

Misinformation

Short of formally implementing policies, President-elect Trump and his advisors can sow confusion by the information and misinformation that they spread. For example, Trump has repeatedly stated that Democrats support abortion up to and after birth, which is false. Similarly, members of his circle of health care advisors have stated that abortion is “murder,” fetuses can feel pain, and suggested that abortion can cause cancer. All of these statements have been refuted by scientific and medical groups.

Contraception

President-elect Trump could reinstate policies that he implemented in his first term that resulted in the reduced availability of contraceptive care to low-income people through regulatory action that targeted the Title X federal family planning program. The Republican party platform states support for “access to birth control,” but a federal the Right to Contraception Act failed to pass Congress this year, due to opposition or abstention from the vast majority of the Republican Senators, including Vice President-elect Vance. Trump placed multiple restrictions on financing for contraception in his first term.

Title X Federal Family Planning Program

While in office, the Trump administration rewrote the rules governing the federal Title X program, the federal family planning program that supports contraceptive access for people with lower incomes. Title X funds have never been used to pay for abortion services. The Trump administration disqualified family planning clinics from participating in the program if they also offered abortion services (with separate funding); additionally, they prohibited participating clinics from offering referrals to abortion services at other clinics to pregnant patients seeking abortion information. These changes resulted in a steep reduction of the network of clinics receiving federal support from the Title X program. His administration also provided federal family planning funding through Title X funds to crisis pregnancy centers (CPCs) that do not provide contraception, which had been a requirement of the program until that time. While the Biden-Harris administration reversed the Trump administration changes to the program, Project 2025 calls for the restoration of the Trump-era rules, focusing the program on fertility-awareness based methods (FABM), greater support for CPCs, and Congressional passage of a federal law that would prohibit participation from clinics that offer both contraception and abortion services such as Planned Parenthood.

The new Trump administration could either revoke or not enforce the long-standing Title X program’s requirement that Title X-funded clinics provide minors with confidential contraceptive services without parental consent or notification. As a result of recent litigation challenging the rule in Texas where there is a state parental consent requirement for minors, the Biden administration is not enforcing the confidentiality rule in Texas. There are also other states that require parental consent for contraceptive services for minors. The administration could also direct more federal funds toward abstinence education, as they did during Trump’s first term.

Medicaid and Family Planning

Disqualifying Planned Parenthood clinics and other providers that offer both contraception and abortion care from the Medicaid program has long been a priority of some Republican lawmakers and conservative organizations, despite a current federal Medicaid requirement to include all willing providers in the program. Medicaid covers about one in five non-elderly adult women, and is an important source of payment for many family planning providers. For decades, the program has required coverage for contraceptives and other family planning services. In his first term, Trump allowed federal Medicaid funds to be used in a Texas Family Planning Medicaid waiver program that excluded Planned Parenthood and explicitly excluded emergency contraception (EC), which prevents pregnancy after sex by preventing or delaying ovulation. The second Trump administration could approve similar waivers from more states.

For wider-reaching impact, the new Republican Congress could pass legislation stipulating that federal funds to states may not go to entities that provide abortion services, even if the funds are used to pay for non-abortion care. This proposal was included in Republican-sponsored bills that aimed to repeal and replace the ACA in 2017.

Contraceptive Coverage and the ACA

Private insurance coverage for contraceptives and other evidence-based preventive services such as cancer screenings and prenatal care is required under the ACA, but a pending federal lawsuit, Braidwood Management Inc v Becerra, challenges some of these requirements. It is unknown if Trump will fight this case and defend the ACA requirement. Project 2025 calls for the federal government to issue new requirements for contraceptives and other women’s preventive services because of the pending case.  In addition, the Biden-Harris administration recently issued a proposed regulation that would require coverage of over-the-counter contraceptive methods without the need for prescription and would re-define how contraceptives are classified for coverage purposes, potentially expanding the scope of methods that would be required to be covered by plans without cost-sharing. It is unclear if the Biden-Harris administration will finalize the regulation and how Trump will approach the issue.

Maternal Health

During the 2024 campaign, President-elect Trump stated that he would provide full coverage for in vitro fertilization (IVF), which would require Congressional action.

IVF

During the campaign, Trump said that if elected, his administration would provide access to full coverage of IVF services by requiring insurance companies or the government to pay, but he has not provided any details on how this would be funded or operationalized. While Trump says he supports IVF, there is disagreement among conservative circles. The official Republican party platform express support for IVF, but also invokes the 14th Amendment, which can be used to promote fetal personhood policies that could potentially threaten and criminalize IVF care. Additionally, the Project 2025 authors refer to embryos as “aborted children” and oppose research using embryonic stem cells (which can be derived from the IVF process). In the past year, Republican Senators blocked federal legislation that would have established a federal right and coverage of IVF.

Maternal Mortality and Morbidity

The state of maternal health, particularly pregnancy-related mortality, morbidity, and wide racial and ethnic disparities, remains a major health concern, and at times policymakers across party lines have advanced policies to try and improve maternal health. The pregnancy-related mortality rate in the U.S. is 33.2 per 100,000 live births – the highest of any developed country – resulting in over 1,000 deaths in 2021. The first Trump administration issued a maternal health plan near the end of his term and he signed federal legislation that provided funding for maternal mortality review committees. Doula care has been forwarded as a promising approach to support pregnant people, particularly those who are at risk for adverse maternal and infant birth outcomes. This could be an area that garners some bipartisan interest. The Project 2025 document supports broader access to doulas, with the caveat that no federal funds be used to support training related to abortion care. Some states already cover doula services under Medicaid, but implementation of these benefits has been limited and challenging in many cases.

How Medicare Negotiated Drug Prices Compare to Other Countries

Authors: Delaney Tevis, Matt McGough, Juliette Cubanski, and Cynthia Cox
Published: Dec 19, 2024

This analysis for the KFF-Peterson Health System Tracker compares the Medicare’s first-ever negotiated drug prices under a new process created by the Inflation Reduction Act of 2022 to current U.S. list prices, prices negotiated by the Department of Veterans Affairs (VA), and prices in 11 countries of similar size and wealth.

It finds that Medicare’s negotiated prices for 10 high-expenditure prescription drugs are lower than what private Medicare drug plans had been paying, but still much higher than the prices available in other countries – 78% more on average than the country with the next highest price across 11 other wealthy nations.

The analysis is available on the Peterson-KFF Health System Tracker, an online information hub dedicated to monitoring and assessing the performance of the U.S. health system.

VOLUME 13

Myths About Raw Milk and Vaccines

This is Irving Washington and Hagere Yilma. We direct KFF’s Health Misinformation and Trust Initiative and on behalf of all of our colleagues across KFF who work on misinformation and trust we are pleased to bring you this edition of our bi-weekly Monitor.


Summary

This volume discusses politicized narratives linking vaccines to autism and misleading claims about the benefits of raw milk. It also examines the impact of perceived expertise and trust on misinformation beliefs and how AI in mental health care may unintentionally contribute to the spread of false information.


Recent Developments

False Claims Linking Vaccines to Autism May Further Hinder Vaccination Rates

LWA/Dann Tardif / Getty Images

The high number of pertussis (whooping cough) and measles cases reported in the U.S. this year compared to last year may reflect a shift in confidence in public health recommendations made by federal health officials. While vaccination remains the most effective way to prevent these diseases, a KFF analysis found a continued decline in routine immunization rates among U.S. kindergartners, with coverage for key vaccines such as MMR, DTaP, polio and varicella falling below pre-pandemic levels and, in the case of measles, below the threshold needed to prevent measles outbreaks. These trends, driven in part by vaccine misinformation and growing partisan divides over vaccine requirements, raise concerns about the potential for further declines under a Trump administration that has signaled skepticism towards vaccine effectiveness and safety.

On November 14, President-elect Donald Trump confirmed that he plans to nominate Robert F. Kennedy Jr., who has a history of sharing false or misleading claims about vaccine safety, to head the U.S. Department of Health and Human Services. During an interview on NBC’s Meet The Press, Trump suggested that Kennedy’s role would include investigating the debunked theory linking vaccines to autism, citing rising autism rates in the U.S., despite the scientific consensus that vaccines do not cause autism.

Kennedy’s claims about autism and vaccines often gain traction on social media, where other accounts amplify his message on their platform, particularly around the timing of high-profile events. For example, in the days before and after Trump announced his plan to nominate Kennedy, several X posts shared a video clip of Kennedy speaking at Hillsdale College in 2023, in which he falsely claimed that  “there’s no front-end safety testing” for routine vaccines and suggested that vaccines cause autism, as well as ADHD, sleep disorders, language delays, Tourette’s syndrome, and narcolepsy. Four X accounts with large followings and a history of spreading false claims about vaccines shared the video between November 12 and November 15, receiving hundreds of thousands to millions of views. The most popular post of the four garnered approximately 6.7 million views, 148,000 likes, 52,000 reposts, and 1,500 comments as of December 5. Top comments on the post reinforced the debunked myth that vaccines cause autism, further spreading misinformation.

False claims that vaccines cause autism have existed for years and have been repeatedly debunked. The theory that vaccines cause autism was first popularized in 1998 by a small study that was later retracted, and the study’s author lost his medical license due to falsified information. Since then, decades of credible studies have consistently shown that vaccines are not associated with autism. Still, the myth persists, and concerns about mRNA COVID-19 vaccines have led to an increase in false claims about vaccine safety, including false claims linking vaccines to autism.

Polling Insights:

KFF polling has found that misinformation related to MMR vaccines causing autism in children was a widely-encountered piece of health misinformation, with 65% of adults, including a similar share of parents, saying they had read or heard the false claim that “MMR vaccines have been proven to cause autism in children” (Figure 1). Fewer adults overall, however, said they thought this claim was definitely or probably true (25% of adults and 30% of parents). Combining these two measures, about one in six adults (16%) and one in five parents (19%) said they both had heard that MMR vaccines cause autism and believe this is probably or definitely true.

While similar shares across partisan groups report having heard the false claim that MMR vaccines cause autism, a larger share of Republicans compared to Democrats and independents say this false claim is definitely or probably true. 

Notably, most of the public express some degree of uncertainty about the false claim that MMR vaccines have been proven to cause autism, with 43% saying it is “probably false” and 20% saying it is “probably true.”

Bar chart showing the percent of U.S. adults who have heard and/or believe ten different health misinformation claims related to COVID, reproductive health and guns.

USDA Orders Bird Flu Testing for Milk Supply Amid Ongoing Raw Milk Misinformation

Nikola Stojadinovic / Getty Images

The U.S. Department of Agriculture (USDA) announced mandatory bird flu testing for the nation’s milk supply beginning December 16, after the H5N1 virus was first detected in U.S. dairy herds earlier this year. The FDA and CDC explain that pasteurization effectively neutralizes the virus, along with other germs such as E. coli and salmonella, but false claims about the health benefits of unpasteurized or raw milk may continue to motivate raw milk consumption. Social media platforms amplify the appeal of raw milk by promoting its perceived health and beauty benefits, while simultaneously claiming that federal regulatory bodies want to suppress consumption for potentially nefarious reasons.

Raw milk advocates often misrepresent the difference between pasteurized and unpasteurized milk to portray raw milk as more beneficial to health than pasteurized milk, claiming that the pasteurization process destroys healthy enzymes, probiotics, and vitamins. However, studies show that while pasteurization can reduce certain enzymes and vitamins, the levels in milk are generally too low to have a significant impact on health anyway. Advocates of raw milk also commonly cite a 2011 study to support claims that raw milk consumption reduces the risk of asthma in children. However, this study did not include a comparison group of people who consumed pasteurized milk, making it difficult to draw conclusions about the effect of pasteurization on asthma. Efforts to address these claims about raw milk should focus on clarifying these nuances rather than dismissing them as misinformation. Educating people about the science behind pasteurization and the actual nutritional content of milk can help counter misleading claims and provide a more informed perspective on raw milk.


Research Insights

Perceived Expertise Influences Trust in Nutrition Misinformation Among Youth

Klaus Vedfelt / Getty Images

A study published in the nutrition journal Appetite examined how young people process nutrition-related misinformation on social media, focusing on how perceived source expertise influences trust in the information. Researchers exposed 480 adolescents aged 16 to 22 to either accurate or misleading nutrition claims from social media profiles created for influencers, celebrities, and health journalists. They found that while adolescents did not change their beliefs or behavioral intentions after exposure to misinformation, they were more likely to trust information when it came from someone they perceived as an expert —even when that person was not a real expert and lacked health or nutrition credentials. In addition, participants struggled to identify false claims, suggesting gaps in media literacy that make young people more susceptible to misinformation from those they perceive as experts.

Source: Lissens, M., Harff, D., & Schmuck, D. (2024). Responses to (Un) healthy Advice: Processing and Acceptance of Health Content Creators’ Nutrition Misinformation by Youth. Appetite, 107812.

The Impact of Trust on Belief in Fake News, Conspiracy Theories, and Vaccine Hesitancy 

Tero Vesalainen / Getty Images

A study published in PLOS Global Health explored the relationship between people's trust in information and their likelihood of believing fake news, conspiracy theories, and vaccine hesitancy. The researchers conducted two surveys in the United Kingdom to assess three trust-related traits, including credulity (trusting too easily), mistrust (excessive skepticism), and balanced trust. The study found that participants with high credulity were more likely to believe fake news and conspiracy theories, particularly those related to COVID-19. The study also linked childhood adversity to increased belief in fake news, conspiracy theories, and vaccine hesitancy. Mistrust and credulity were found to mediate this relationship, suggesting that disruptions in trust caused by childhood adversity may influence these beliefs and behaviors. These findings emphasize the importance of promoting balanced trust, encouraging critical thinking while avoiding excessive skepticism as a strategy for improving public health communication.

Source: Tanzer, M., Campbell, C., Saunders, R., Booker, T., Luyten, P., & Fonagy, P. (2024). The role of epistemic trust and epistemic disruption in vaccine hesitancy, conspiracy thinking and the capacity to identify fake news. PLOS Global Public Health, 4(12), e0003941. 


AI & Emerging Technology

AI Used for Mental Health Care Poses Risks of Sharing False Information

Ekaterina Goncharova / Getty Images

The growing use of AI in mental health care raises concerns about its potential to contribute to misinformation. As AI technologies like chatbots become more integrated into mental health support, there is a risk that they could provide incorrect or harmful advice, as seen with a chatbot from the National Eating Disorders Association that exacerbated eating disorders. AI's inherent tendency to be overly confident, even when wrong, could further fuel misinformation if not properly regulated. This year, Utah enacted one of the first laws focused on addressing these risks by developing regulations to improve data privacy, protect against harmful practices, and clarify the roles of licensed professionals in using AI tools. Other states, such as Colorado and California have also introduced policies related to AI and health in other domains, but a state-by-state approach could create a confusing and inconsistent regulatory landscape.

About The Health Information and Trust Initiative: the Health Information and Trust Initiative is a KFF program aimed at tracking health misinformation in the U.S., analyzing its impact on the American people, and mobilizing media to address the problem. Our goal is to be of service to everyone working on health misinformation, strengthen efforts to counter misinformation, and build trust. 


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Support for the Health Information and Trust initiative is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed do not necessarily reflect the views of RWJF and KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities. The Public Good Projects (PGP) provides media monitoring data KFF uses in producing the Monitor.

What’s Next for State Abortion Ballot Initiatives?

Authors: Mabel Felix, Laurie Sobel, and Alina Salganicoff
Published: Dec 18, 2024

Since the Supreme Court overturned Roe v Wade in June 2022, states have been able to set policy that defines abortion access across this nation. State actions have ranged from those that have effectively banned all abortions unless the pregnancy presents an imminent life threat to states that have enshrined the right to abortion in their state constitutions. This past November, voters in 10 states weighed in on constitutional amendment ballot measures to protect abortion rights.

The states that recently approved constitutional amendments protecting abortion rights in November (Arizona, Colorado, Maryland, Missouri, Montana, and New York) now join the states—California, Michigan, Ohio, and Vermont—that already had recently added these protections to their state constitutions (Figure 1). However, in Florida, Nebraska, and South Dakota, the abortion rights amendments failed to garner sufficient votes for passage. In Nebraska, voters approved a competing measure to ban abortion after the first trimester. Nevada voters approved their state amendment but will need to weigh in again in the general election in 2026, as the state rules require constitutional amendments to pass in two general elections. This brief examines what the November election and prior efforts to enshrine abortion rights at the ballot box mean for those states and what’s next, including the future of abortion restrictions in states where voters enshrined abortion rights where abortion was banned or restricted, as well as those that do not have abortion bans.

Outcome of Abortion-Related State Constitutional Amendment Measures on the November 2024 Ballot

Going forward, if law makers seek to restrict abortion in the states with new constitutional amendments protecting abortion rights, state courts will evaluate any abortion restrictions under the new amendment. Protections from restrictions beyond pre-viability bans will vary from state to state based on the language in their constitutional amendment and how their highest court interprets the language. After this general election, there are only two more states with abortion bans that allow citizens to propose new constitutional amendments and have not already attempted to do so.

What will be the fate of abortion restrictions?

Of the seven states that passed amendments protecting abortion rights, two (Arizona and Missouri) had pre-viability abortion bans. In these states, advocates have filed legal challenges to their abortion limits, alleging that they violate the newly established amendments. While the litigation in Arizona proceeds, the 15-week ban is not in effect and clinics are providing abortion care beyond this gestational limit.

The new constitutional amendments offer protections that prevent the state from burdening or interfering with someone’s right to abortion. This means that these constitutional amendments protecting a right to abortion may be used to do more than just challenge pre-viability gestational limits and may also be used to take on other abortion restrictions such as waiting periods, telehealth abortion restrictions, and physician only requirements. Additionally, because some of these constitutional protections go beyond the federal protections that existed under Roe and Casey, abortion restrictions such as waiting periods and the exclusion of abortion coverage in Medicaid programs, may be struck down by state courts.

This has already begun to happen in Michigan and Ohio where abortion rights advocates have challenged abortion restrictions on the basis that they violate their respective reproductive freedom amendments passed by voters in prior elections. Courts in Ohio have already blocked state laws prohibiting advanced practice clinicians from providing medication abortion, requiring in-person counseling, and a 24- hour waiting period after the counselling. Similarly, courts in Michigan have blocked laws limiting the provision of abortion to physicians and requiring a 24-hour waiting period. Michigan advocates have additionally asked a state court to rule that the ban on state funding of abortions for Medicaid enrollees is unconstitutional based on the amendment approved by Michigan voters.

Whether or not similar restrictions that have been in force in these states prior to the election (Table 1) will be blocked in Arizona and Missouri will depend on the wording of their respective abortion-related constitutional amendments and how state courts interpret these protections. While the removal of some of these restrictions is up to judicial interpretation, the Colorado ballot measure directly prevents the state from prohibiting health insurance coverage of abortion and repealed a section of the Colorado Constitution that explicitly prohibited the use of state funds to pay for abortion care, except when necessary to safeguard the life of the pregnant person. The passage of the Colorado measure removes these restrictions on state funds, which had previously prevented the state from using its own funds to provide coverage of abortion care for their Medicaid enrollees in circumstances other than the restrictions on federal funding outlined in the Hyde amendment—previously only allowing the state to cover abortions in cases of life endangerment and rape or incest. Other states, like Arizona and Missouri similarly restrict the use of state funds to provide coverage of abortion services for Medicaid recipients.

Abortion Restrictions in States with New Constitutional Amendments Protecting the Right to Abortion

Citing the newly passed constitutional amendment, advocates in Missouri have filed a lawsuit challenging the state’s abortion ban and many restrictions. They argue the abortion ban and restrictions, including a 72-hour waiting period, telemedicine ban, and physician only provision, impermissibly interfere with the right to reproductive freedom the Missouri constitution now protects. The language in the state’s new constitutional amendment prevents the state from denying, interfering with, delaying, or otherwise restricting the right to reproductive freedom unless the government can demonstrate that the restriction has the “effect of improving or maintaining the health of a person seeking care, is consistent with widely accepted clinical standards of practice and evidence-based medicine, and does not infringe on that person’s autonomous decision-making.” This is a high bar for the state to clear if anti-abortion advocates are seeking a path to apply limited restrictions, though the Missouri Supreme Court will be the final arbiter of which restrictions will be allowed to stand.

How will the abortion initiatives affect the states that did not have abortion bans?

While five of the states that approved citizen initiatives to enshrine abortion rights in November 2024 do not have abortion bans, these state constitutional amendments provide assurance that abortion rights will be protected in the future. Regardless of how the political winds may change in a state, a constitutional amendment explicitly enshrining abortion rights will mean that lawmakers and even judges cannot enact or interpret the laws to limit abortion access, even if the composition of the state’s high court changes or the state government moves in a different direction. These constitutional protections can only be undone by a subsequent initiative that amends the state’s constitution.

Looking to the future

After the November 2024 election, there are two states (Arkansas and Oklahoma) with current bans which allow for a citizen initiated constitutional amendments and have yet to vote on an abortion measure (Figure 2). There were efforts in Arkansas (where there is a near total abortion ban) to get an initiative on the ballot, but the Arkansas Secretary of State rejected the petition for the initiative on the grounds that the signatures were not properly gathered and thus did not make it to the ballot. The Arkansas Supreme Court upheld this decision. In Florida, there is a 6-week LMP abortion ban, but the 2024 initiative failed to garner the needed 60% approval needed for passage. It is unknown whether abortion rights supporters will try again to gain approval in a future election given that the popular vote fell just 3 percentage points short of approval in the last election.

Only Two Remaining States with Abortion Bans Allow Citizen Initiatives

It is also unclear if anti-abortion proponents will propose new ballot initiatives to remove the new constitutional amendments protecting the right to abortion in Missouri and Arizona. Thirteen states with abortion bans or earlier gestational limits do not have a citizen initiative process to amend their constitutions. These states will likely continue to have those laws on the books, unless a new federal law guaranteeing abortion rights is passed by Congress and signed by the president or a future Supreme Court ruling overturns the 2022 Dobbs decision.