Science is advancing at an unprecedented speed, and scientists are facing major ethical dilemmas daily. Unfortunately, the general public rarely gets opportunities to share their opinions and thoughts on these ethical challenges, moving us, as a society, towards a future that is not inclusive of most people’s ideas and beliefs. Scientists regularly call for public engagement opportunities to discuss cutting-edge research. In fact, “71% of scientists [associated with the American Association for the Advancement of Science (AAAS)] believe the public has either some or a lot of interest in their specialty area.” Sadly, scientists’ calls often go unnoticed and unanswered, as there continue to be inadequate mechanisms for these engagement opportunities to come to fruition.

To Deliberate or Not to Deliberate

Public deliberation, when performed well, can lead to more transparency, accountability to the public, and the emergence of ideas that would otherwise go unnoticed. Due to the direct involvement of participants from the public, decisions made through such initiatives can also be seen as more legitimate. On a societal level, public deliberation has been shown to encourage pluralism among participants.

Despite the importance of deliberation, it’s important to note that it is not always the best way to engage the public. Planning a public deliberation event — a citizens’ panel, for instance — takes a large amount of time and resources. Plus, incentivizing a random sample of citizens to participate (which is considered the gold standard of deliberation) is difficult. It’s therefore paramount to first assess whether the topic of focus is suitable for public deliberation. 

To assess the appropriateness of a deliberation topic, consider the following criteria (inspired by criteria set forth by Stephanie Solomon and Julia Abelson and the Kettering Foundation):

1. Does the issue involve conflicting public opinions? Issues that involve setting priorities in healthcare, for example, may benefit from public deliberation as there is no singular correct answer; deliberation may offer a more clear and holistic view of what is best for a community, according to the community.
2. Is the issue controversial? If so, deliberation can be a good tool as it brings many opinions into view and can foster pluralism as mentioned previously.
3. Does the issue have no clear-cut solution and is “intractable, ongoing, or systemic”?
4. Do all available solutions have significant drawbacks?
5. Does the community at large have an interest in the problem?
6. Would the discussion of the issue benefit from a combination of expert and real-world experience and knowledge (what Solomon and Abelson call “hybrid” topics)? Certain issues may solely require technical knowledge but many issues would benefit from the views of the public as well.¹
7. Are citizens and the government on the same page about the issue? If not, public deliberation can foster trust, but only if the initiative is done with the intention of taking the public’s conclusions into account.

Setting Goals

If it’s deemed that the topic is suitable for public deliberation, the next step is to set goals for the public deliberation initiative. Julia Abelson, Lead of the Public Engagement in Health Policy Project and Professor at McMaster University, has explained that one of the significant differentiating factors between successful and unsuccessful initiatives is thoughtful planning and organization — including setting clear goals and objectives organizers would like to meet by the end of deliberation. Having an end goal not only helps with planning but also allows for a realistic goal to be shared with deliberation participants. Setting unrealistic expectations as to what the deliberation process is meant to achieve — and subsequently not achieving those goals — will lead participants and citizens, in general, to lose trust in the deliberation process (and organizational body).

Is the goal of deliberation to bring new ideas into view and share those with relevant agencies (governmental or otherwise)? Is the goal instead to enact change in current policies? Is the goal to help shape new policies? The aforementioned Citizens’ Reference Panel on Health Technologies in Canada did not directly impact the government’s decisions, but served to make experts aware of a viewpoint they had not previously explored. This is in contrast to the typical “sit and listen” initiatives that don’t have as much of a capacity to encourage new ideas to emerge. In another instance, a citizens’ jury in Buckinghamshire, England was formed to discuss how to tackle back pain in the county. The Buckinghamshire Health Authority promised to implement the citizens’ recommendations (as was mandated by a charity that was supporting this public deliberation effort) — and they did.

Expanding on the idea of making promises and accountability, it’s important for the organizing body — which may or may not include a federal agency — to consider its role in implementing the conclusions of the deliberation. Promising to implement the conclusion of the deliberations can serve to invigorate discussion and make participants more engaged, knowing that their discussions can have a direct impact on future decisions. For instance, the British Columbia Biobank Deliberation involved a “commitment at the outset of the deliberation from the leaders of a proposed BC BioLibrary (now funded by the Michael Smith Foundation for Health Research) that the Bio-Library’s policy discussions would consider suggestions from this deliberation.” Researchers have suggested this may have contributed to participants’ interest in the deliberation event. Despite some examples of implementation following deliberation (such as the Buckinghamshire and Ontario examples), there continues to be a lack of adequate change based on the public’s recommendations. One other instance comes from NASA’s 2014 efforts to involve the public in the discussion around planetary defense (in the context of asteroids) through a participatory technology assessment (PTA). It seems that the PTA helped to spur the creation of NASA’s Planetary Defense Coordination Office. 

Furthermore, providing updates on implementation to participants, and the public at large, would provide another crucial aspect of accountability: “explanations and justifications.” However, these updates on their own would not fulfill an organization or agency’s duty to accountability as that requires an active dialogue with the public (which is precisely why implementing the conclusions of public deliberation initiatives is important).  

When to Deliberate: Agenda Setting for Citizens

As mentioned above, deliberation can happen at various points during the policymaking pipeline. It has become increasingly popular to include the public early on in the process, such as in an agenda-setting role. This allows the public not only to engage in discussions about a topic but to also set the priorities and frame how the discussions will move forward. As Naomi Scheinerman writes, “with proper agenda setting and precedent creation, the resulting […] questions would be more reflective of what the public is interested in discussing rather than of the companies, industries, and other stakeholder groups.”

A trailblazing model in citizen agenda-setting has been the Ostbelgien Model. The model involves both a permanent Citizens’ Council and ad hoc Citizens’ Panels. Though the members of the Citizens’ Council rotate (and are chosen randomly), one of the permanent roles of the Council is to select topics for the ad hoc Citizens’ Panels, with citizens having a direct hand in what issues their fellow citizens and government should tackle. Since its inception in 2019, the Citizens’ Council has asked Citizens’ Panels to tackle issues such as “how to improve the working conditions of healthcare workers” and “inclusive education.” 

Framing

One of the pillars of the success of public deliberation is a well-scoped question that is framed appropriately. Issues that are framed unfairly, meaning they place emphasis on a specific part of the issue while ignoring others, can lead to inaccurate results and a loss of trust between the public and the organizers. Though this depends on the goals of the deliberation, it’s often best for questions to be specific in their scope to allow for concrete results at the end of the deliberation initiative. For example, an online deliberation session in New York City aimed to assess the public’s views on who should be given priority access to COVID-19 vaccines. One of the questions asked participants to rank the order in which they think a pre-specified list of essential workers should get access to the vaccine. This allows for discussion while retaining a clear focus.

Another example comes from climate change. Climate change can be framed in many ways —  through an economic frame, a public health frame, a justice frame, and others. These various framings impact how the public reacts to the issue; in the case of the economic frame, it has led to “political divisiveness.” Focusing instead on the public health frame, for instance, led to greater agreement on policy decisions. Similarly, according to a 2023 policy paper from the Organisation for Economic Co-operation and Development (OECD), an issue like COVID-19 can be less polarizing if the framing used is about solutions to the pandemic rather than solely vaccines. Importantly, the organizers of the public deliberation initiative do not have sole control over the framing of the issue. Citizens often have a pre-existing “frame of thought.” This makes frames tricky yet essential in making it possible to appropriately and productively deliberate a topic. 

Framing is implicit in that participants in deliberation are not aware of it, making it all the more crucial to be wary of the framing. Thus, it becomes clear how seemingly unimportant factors, such as setting, also affect deliberation. According to Mauro Barisione, the framing of the setting includes:

• Who is promoting the event and who the sponsors are: Whether the public trusts the promoters/sponsors and the feelings they associate with them (including any explicit views the sponsors promote) may impact the framing of the topic at hand.
• Where is/are the deliberative session(s) being held “(i.e., institutional, academic, civil society or business organization, etc.)”: Apart from accessibility concerns, the location of the deliberative session(s) sends implicit messages to participants who may have previously had negative experiences at governmental institutions, for instance.
• Who are the witnesses and experts brought on as part of the project: This point is most obvious. Especially when it comes to less well-known topics, witnesses and experts may be the first window into a new topic for participants. A biased selection of experts (or including experts who provide unscientific evidence) can significantly impact deliberation. Moreover, an oft-neglected point worth considering is the diversity of expert witnesses who present relevant information at public deliberation events. Selecting experts is discussed in more detail in a later section, but it’s worth noting here that a diverse group of expert presenters will ensure a diversity of views and may aid in building trust with participants as well. 

Selecting a Type of Public Deliberation

Another factor that merits attention at this point is the type of public deliberation being undertaken. Though public deliberation has been referred to as one entity thus far, there are many different types, including, but not limited to, citizens’ juries, planning cells, consensus conferences, citizens’ assemblies, and deliberative polls. Below are some further details about various types of public deliberation (where a source is not included below, it was adapted from Smith & Setälä).

Citizens’ juries

• Description: “In common with the legal jury, citizens’ jury assumes that a small group of ordinary people, without special training, is willing and able to take important decisions in the public interest” (Coote & Mattinson)
  • Selected jurists are meant to represent a microcosm of their community (Crosby)
  • Jurors are selected through a quota process that often takes into account demographics (e.g., age, gender, education and race) or jurors’ prior opinions about the question at hand (Crosby)
  • Neutral moderator moderates discussions (Crosby)
  • Jurors are able to determine what questions are asked of the witnesses
  • Similar to planning cells (below), jurors are paid for the time (e.g., $75 per day)
• Number of participants: 12–24
• Time: 2-4 days (Armour)
• Output: Jurors put together a written report of their conclusions (Armour)
• Examples: Ned Crosby of the independent Jefferson Institute in the US initially ran them with groups of 12-24 people (Smith & Wales)
  • Another example is the Oregon Citizens’ Initiative Review

Planning cells

• Description: Deliberation includes 3 phases (Participedia):
  • Citizens are presented with pertinent information from multiple perspectives and ask clarifying questions
    • Often two cells are run in parallel, one starting an hour later than the other so that expert witnesses can present information twice within one visit (Dienel)
    • Two trained moderators are required for each planning cell (Dienel)
  • Cells are broken up into smaller groups of 5 and work together to come up with recommendations regarding the topic
  • The full cell reconvenes and each mini group presents their top recommendation, which is then assessed by all members of the group, until some final recommendations are made
• Number of participants: 25 in each cell (multiple cells running simultaneously or one after another); often have 6-10 planning cells total (Dienel)
• Time: 3-4 days (Dienel)
  • Each day is split into four chunks of time, each spent on a different “thematic focus”
  • The final day is used to summarize the participants’ thoughts and come to conclusions (Planning Cells Database)
• Output: Citizens’ report
  • Created by the planning committee based on quantitative data aggregated from all the cells (for instance, from how participants responded to which option they favored) (Dienel)
  • The first draft of the report may also be discussed with participants in a follow-up meeting
• Example: Cologne Town Square

Consensus conferences/citizens’ conferences

• Description: These conferences have been described as a citizens’ jury plus a town hall meeting (Einsiedel & Eastlick)
  • Citizens learn some basic facts about the issue at hand and formulate questions they’d like addressed (Kenyon). In other words, the topic is chosen by the organizers while the concrete problems are selected by the citizens (Nielsen et al.).
  • Witnesses are called to answer these questions (Kenyon) and the experts are selected entirely by citizens (Nielsen et al.)
  • A steering group is often involved who ensures that “the conference is balanced and just” and provides support to the organizers (Nielsen et al.)
    • Members include “scientists, representatives of non-governmental organizations, policy-makers and others, who are engaged and informed concerning the topic”
  • It’s recommended that fact sheets be prepared that explain basic definitions necessary for understanding the topic as well as pros and cons for all sides — this will be provided to participants in preparation for discussions and the questioning of expert witnesses (Nielsen et al.)
    • Introductory materials should also clearly explain the role of the consensus conference participants and how their contributions will be used to inform future decisions
• Number of participants: 10-24
• Time: 4 days
• Output: Report written by citizen participants (Kenyon)
• Example: Danish Board of Technology consensus conferences

Citizens’ assemblies

• Description: Typically larger and longer than the deliberative processes discussed above, similar to legislatures composed of regular citizens (Lacelle-Webster & Warren)
  • Organizers often aim to make assemblies as representative of the public as possible through methods like stratified random sampling (Lacelle-Webster & Warren)
  • More limited participation opportunities so some suggest that it’s better to call citizens’ assemblies “representative institutions” rather than a form of participatory democracy (Lacelle-Webster & Warren)
  • Participants compensated for their time (Ferejohn)
  • Based on the initial citizens’ assembly in British Columbia, any interested expert witnesses or groups were able to testify in front of the participants (Ferejohn)
  • Participants can ask any questions of the witnesses (Ferejohn)
  • A Chair — who was the only public official directly involved in the process — is able to make obligatory rulings as to how the deliberations would proceed
  • Organizers set the agenda
  • Formats can vary: the inaugural 2004 British Columbia citizens’ assembly was more so in the format of a legislature as opposed to an Irish citizens’ assembly which included roundtable discussions with groups of 7-8 participants alongside a facilitator and notetaker at each table (Farrell et al.)
• Number of participants: 99-150
• Time: Meetings over several months (often during weekends) (Farrell et al.)
• Output: Report and recommendations from citizens’ assembly (Ferejohn)
• Example: The 2004 British Columbia Citizens’ Assembly

Deliberative polls

• Description: Combines traditional polling with the benefits of participatory processes
  • Randomly selected participants are polled on their opinions about a topic (Stanford Deliberative Democracy Lab)
  • Participants receive introductory materials about the issue prior to the event (Stanford Deliberative Democracy Lab)
  • A weekend-long event where participants learn more about the issues from experts (ask questions from experts) and discuss issues with one another with trained facilitators present (Stanford Deliberative Democracy Lab)
  • At the end, complete the questionnaire from earlier once more (Stanford Deliberative Democracy Lab)
  • Participants often paid for their time ($75-$200) (Participedia)
• Number of participants: 200+
• Time: One weekend (Stanford Deliberative Democracy Lab)
• Output: Differences measured between the opinions of participants pre- and post-deliberative polling process (Stanford Deliberative Democracy Lab)
• Example: 2008 deliberative poll on housing shortages in San Mateo County, California

A note on online deliberation

The COVID-19 pandemic forced many initiatives to shift to a fully online modality. This highlighted many of the opportunities as well as challenges that online deliberation presents. One consideration is accessibility, a double-edged sword when it comes to deliberation. Virtual deliberation alleviates the need for a venue or hotel accommodations — decreasing costs for organizers — and may allow participants to continue to go to work at the same time. However, difficulties with using technology and a lack of access to a device or an internet connection are drawbacks. Another opportunity presented by virtual deliberation is to provide more balanced viewpoints on the topic of deliberation. For instance, there are no geographical barriers as to the experts organizers can invite to speak at an event. 

A concern somewhat unique to online deliberation is data privacy and security. While this can also be an issue with in-person initiatives, many tools that participants are familiar with and may prefer to use do not have robust security.

A note on cost

While the cost of many deliberation initiatives is not publicly available, the available estimates range from $20,000 (citizens’ jury) to $95,000 (consensus conference) to $2.6 million (Europe-wide deliberative poll of 4300 people) to $5.5 million (citizens’ assembly). Note that these costs come from a range of time points and locations (though they have been adjusted for inflation) and only serve as rough estimates. A major contributor to these costs, particularly for longer deliberative initiatives, is hotel or venue costs as well as the reimbursement of participants. This reimbursement is costly but a part of the founding philosophy of many types of deliberation, including that of planning cells.

Selecting Participants

Many different approaches can be taken to selecting participants for deliberative forums. Unfortunately, there are inherent trade-offs in selecting a sampling method or approach. For instance, random sampling is more in line with the principle of “equal opportunity” and may promote “cognitive diversity”— the diversity of ideas, experiences, and approaches participants bring to the event — but is prone to creating deliberation groups that are not representative of the population at large. This is particularly true when the deliberative forum has few participants. This is why, depending on the type of deliberation event (and therefore number of participants chosen), a different type of sampling may be appropriate. 

Another approach is random-stratified sampling, where participants are randomly chosen and invited to participate in the deliberative event. There is often an unequal distribution among those who accept the invitation — for instance, individuals with higher socio-economic statuses may respond disproportionately more. In this case, a more representative sample may be chosen from those who responded. Quotas may also be set, such as ensuring that a certain number of female-identifying participants are included in a deliberative event. For this method, the organizers must decide on groups of individuals who are primarily affected by the topic being discussed, as well as groups often excluded from such deliberations. A deliberative forum on immigration, for instance, may call for the presence of a participant who is an immigrant to ensure polarization does not take place. In certain instances, purposive sampling — where individuals from groups whose views are specifically being sought are purposefully chosen — may also be appropriate. Furthermore, some researchers suggest including a “critical mass” of individuals from typically underserved groups. This can serve to make participants more comfortable in speaking up, ensure that the diversity of discussions is retained when participants are broken up into smaller groups (in certain forms of public deliberation), and provide a step in avoiding tokenism.

Furthermore, there are newer methods of selecting participants that combine both random and stratified sampling — namely algorithms that try to maximize both representation and equal opportunity of participation. One instance is the LEXIMIN algorithm which “choose[s] representative panels while selecting individuals with probabilities as close to equal as mathematically possible.” This algorithm is open-access and can be used at panelot.org. 

Aside from considerations for selecting participants, it’s important to consider the selected individuals’ ability and willingness to participate. Several factors can dissuade selected individuals from taking part, including but not limited to, the cost of missing work, the cost of childcare, transportation costs, and lack of trust in the organizing body or agency. Prohibitive costs are addressed by several of the deliberation models discussed in the “Selecting a Type of Public Deliberation” section. These models strongly suggest stipends which, at minimum, cover incidental expenses. A lack of trust is a particularly important issue to address as it can hinder the organizer’s ability to reach individuals typically left out of policymaking discussions. One approach to addressing this once again brings us to making — and critically, keeping — promises regarding the implementation of the conclusions of participants. Framing (as discussed in an earlier section) can also contribute to building trust, though, importantly, this is not a gap that can be bridged overnight. A more extensive discussion on inclusion in public deliberation forums can be found here.

Bringing On Experts & Creating Materials

Prior to selecting the group who will participate in the public deliberation activity, steps need to be taken to organize which experts will be part of the event and create the informational material that will be provided to participants before deliberations begin. 

Here, efforts must be made to ensure sufficient and balanced information is presented without creating a framing event where participants enter discussions with a biased perspective. It has been found that participants readily integrate the facts and opinions presented by experts/witnesses prior to deliberation and critically engage with their points. A deliberative engagement initiative in British Columbia, Canada about biobanking brought on a variety of experts and stakeholders to present to participants. To ensure fairness, presenters were “given specific topics, limited presentation times, and asked to use terms as defined in the information booklet” that was previously provided. A unique component included in this initiative was the ability for participants to ask presenters questions in between the two deliberative session weekends, which were two weeks apart, through a website. 

In addition, participants were provided with booklets and readings. In the case of the British Columbia initiative, to create booklets and background materials, a literature review was performed. Once more, the materials should provide a balance of opinions. They should include the most important facts relevant to the question at hand, some of the most common/salient approaches and points with regards to the question, and the weaknesses of each approach/point (Mauro Barisione). It is also best to keep materials succinct, with some deliberative initiatives keeping their materials to one page long.

Though the traditional approach is to have experts present prior to deliberation, other methods have also been used. For instance, a Colorado deliberation initiative focused on future water supply used an “on tap but not on top” expert approach. Rather than call experts to present information, they instead provided one-page information sheets, followed directly by deliberation. Experts were present during the deliberation session. When prompted by a participant, a facilitator would ask an expert to briefly join the group to answer the participant’s question. The approach was largely successful, though one “rogue expert” frequently interjected in a group’s discussion, providing his own opinions. One limiting factor to this approach is time; the deliberative sessions mentioned above were two hours long. But many other forms of deliberation are significantly longer, making coordinating with experts for long durations of time difficult. Despite these challenges, this approach provides an interesting way of integrating experts into the deliberation process so their expertise is best used and the participants’ questions are best answered as they arise.

Facilitation

A good facilitator or moderator is critical to the deliberation process. As explained by Kara N. Dillard, moderators set the ground rules for the discussion and prevent any one participant from dominating the session; this is called presentation. It has been found that clearly setting expectations for the discussion can lead to greater deliberative functioning — which, for our purposes, includes the exchange of ideas/reasons, equality, and freedom to speak and be heard — according to participants. Moderators also guide the discussion in two main ways: asking questions that challenge what participants have already discussed (elicitation); and connecting ideas that were previously brought up to new topics and “play[ing] devil’s advocate” to bring forth new ideas (interpretation). At the end of the session, moderators also help participants produce conclusions by asking what areas of consensus and contention were present throughout the discussion.

Moderators can take multiple approaches to facilitating, with one framework proposed by Kara N. Dillard separating moderators into three groups: passive, moderate, and involved. Passive moderators take a “backseat” approach to moderating. They often describe their role to participants as only being there to prevent a participant from dominating the conversation, rather than actively leading it. This has led to unfocused discussions and unclear conclusions. Participants often jumped around and went off-topic. Though this passive approach may work in some instances, a moderate or involved approach often leads to better deliberation.

Involved facilitators actively lead the discussion by asking questions that challenge participants to think in new ways, sometimes acting as a “quasi-participant.” In line with this, these moderators often play devil’s advocate to move the discussion in new, albeit related, directions. These moderators ask follow-up questions and “editorialize” to help participants flesh out their ideas together and aim to pinpoint points of contention so participants can further discuss them. If participants begin to veer off-topic, involved moderators will move the group back into a more focused direction while also connecting this new topic to the main question, allowing for new thoughts to emerge. These moderators take the time to sum up the main points brought up by participants after each point so conclusions become clear. Once more, this approach may not work in all instances but often leads to deeper conversations and more focused conclusions.

As implied by the name, moderate facilitators are somewhere in between passive and involved facilitators. These moderators ask questions to guide the discussion, but don’t often challenge the participants and let them take the wheel. These moderators use the elicitation strategy frequently, an important difference between moderate and passive moderators.

Due to the skills needed to facilitate a deliberation event well, organizers or government agencies looking to organize these events may require would-be facilitators to undergo brief training. 

What Comes Next

After deliberation has taken place, the next step is to write a report summarizing the conclusions of the deliberative forum. As we have seen several times with other topics, there are multiple approaches to this. One approach is to leave the report writing to the facilitators, organizers, or researchers who use their own takeaways from the deliberation (in the case of facilitators) or summarize based on recordings or transcripts (in the case of organizers or researchers). However, this method introduces bias into the process and doesn’t allow participants to be directly involved in creating conclusions or next steps.

An alternative is to allocate time towards coming up with conclusions together with participants both throughout and at the end of the deliberative session. Recall that involved facilitators frequently summarize the conclusions of the group throughout the deliberation, making this final task both more efficient and more participant-led. Participants can directly and immediately add on to or push back against the facilitator’s summary. As a guideline, Public Agenda, an organization conducting public engagement research, divides the summary into the following sections: areas of agreement, areas of disagreement, questions requiring further research, and high-priority action steps.

The opioid epidemic is a public health and safety emergency that is killing thousands and destroying the quality of life for hundreds of thousands of Americans and those who care about them. Fentanyl and other opioids affect all age ranges, ethnicities, and communities, including our most vulnerable population, children. Producing fentanyl is increasingly cheap, costing pennies for a fatal dose, with the opioid intentionally or unintentionally mixed with common illicit street drugs and pressed into counterfeit pills. Fentanyl is odorless and tasteless, making it nearly untraceable when mixed with other drugs. Extremely small doses of fentanyl, roughly equivalent to a few grains of salt, can be fatal, while carfentanil, a large animal tranquilizer, is 100 times more potent than fentanyl and fatal at an even smaller amount.

The Biden-Harris Administration should do even more to fund opioid-related prevention, treatment, eradication, and interdiction efforts to save lives in the United States. The 2022 Executive Order to Address the Opioid Epidemic and Support Recovery awarded $1.5 billion to states and territories to expand treatment access, enhance services in rural communities, and fund law enforcement efforts. In his 2023 State of the Union address, President Biden highlighted reducing opioid overdoses as part of his bipartisan Unity Agenda, pledging to disrupt trafficking and sales of fentanyl and focus on prevention and harm reduction. Despite extensive funding, opioid-related overdoses have not significantly decreased, showing that a different strategy is needed to save lives. 

Opioid-related deaths have been estimated cost the U.S. nearly $4 trillion over the past seven years—not including the human aspect of the deaths. The cost of fatal overdoses was determined to be $550 billion in 2017. The cost of the opioid epidemic in 2020 alone was an estimated $1.5 trillion, up 37% from 2017. About two-thirds of the cost was due to the value of lives lost and opioid use disorder, with $35 billion spent on healthcare and opioid-related treatments and about $15 billion spent on criminal justice involvement. In 2017, per capita costs of opioid use disorder and opioid toxicity-related deaths were as high as $7247, with the cost per case of opioid use disorder over $221,000. With inflation in November 2023 at $1.26 compared to $1 in 2017, not including increases in healthcare costs and the significant increase in drug toxicity-related deaths, the total rate of $693 billion is likely significantly understated for fatal overdoses in 2023. Even with extensive funding, opioid-related deaths continue to rise.

With fatal opioid-related deaths being underreported, the Centers for Disease Control and Prevention (CDC) must take a primary role in real-time surveillance of opioid-related fatal and non-fatal overdoses by funding expanded toxicology testing, training first responder and medicolegal professionals, and ensuring compliance with data submission. The Department of Justice (DOJ) should support enforcement efforts to reduce drug toxicity-related morbidity and mortality, with the Department of Homeland Security (DHS) and the Department of the Treasury (TREAS) assisting with enforcement and sanctions, to prevent future overdoses. Key recommendations for reducing opioid-related morbidity and mortality include:

• Funding research to determine the efficacy of current efforts in opioid misuse reduction and prevention.
• Modernizing data systems and surveillance to provide real-time information.
• Increasing overdose awareness, prevention education, and availability of naloxone.
• Improve training of first responders and medicolegal death investigators.
• Funding rapid and thorough toxicology testing in emergency departments and coroner/medical examiner agencies.
• Enhancing prevention and enforcement efforts.

Challenge and Opportunity

Opioids are a class of drugs, including pain relievers that can be illegally prescribed and the illicit drug heroin. There are three defined waves of the opioid crisis, starting in the early 1990s as physicians increasingly prescribed opioids for pain control. The uptick in prescriptions stemmed from pharmaceutical companies promising physicians that these medications had low addiction rates and medical professionals adding pain levels being added to objective vital signs for treatment. From 1999 to 2010, prescription opioid sales quadrupled—and opioid-related deaths doubled. During this time frame when the relationship between drug abuse and misuse was linked to opioids, a significant push was made to limit physicians from prescribing opioids. This contributed to the second wave of the epidemic, when heroin abuse increased as former opioid patients sought relief. Heroin-related deaths increased 286% from 2002 to 2013, with about 80% of heroin users acknowledging that they misused prescription opioids before using heroin.  The third wave of the opioid crisis came in 2013 with an increase in illegally manufactured fentanyl, a synthetic opioid used to treat severe pain that is up to 100 times stronger than morphine, and carfentanil, which is 100 times more potent than fentanyl. 

In 2022, nearly 110,000 people in the United States died from drug toxicity, with about 75% of the deaths involving opioids. In 2021, six times as many people died from drug overdoses as in 1999, with a 16% increase from 2020 to 2021 alone. While heroin-related deaths decreased by over 30% from 2020 to 2021, opioid-related deaths increased by 15%, with synthetic opioid-involved deaths like fentanyl increasing by over 22%. Over 700,000 people have died of opioid-related drug toxicity since 1999, and since 2021 45 people have died every day from a prescription opioid overdose. Opioid-related deaths have increased tenfold since 1999, with no signs of slowing down. The District of Columbia declared a public emergency in November 2023 to draw more attention to the opioid crisis.

In 2023, we are at the precipice of the fourth wave of the crisis, as synthetic opioids like fentanyl are combined with a stimulant, commonly methamphetamine. Speedballs have been common for decades, using stimulants to counterbalance the fatigue that occurs with opiates. The fatal combination of fentanyl and a stimulant was responsible for just 0.6% of overdose deaths in 2010 but 32.3% of opioid deaths in 2021, an over fifty-fold increase in 12 years. Fentanyl, originally used in end-of-life and cancer care, is commonly manufactured in Mexico with precursor chemicals from China. Fentanyl is also commonly added to pressed pills made to look like legitimate prescription medications. In the first nine months of 2023, the Drug Enforcement Agency (DEA) seized over 62 million counterfeit pills and nearly five tons of powdered fentanyl, which equates to over 287 million fatal doses. These staggering seizure numbers do not include local law enforcement efforts, with the New York City Police Department recovering 13 kilos of fentanyl in the Bronx, enough powder to kill 6.5 million people. 

The ease of creating and trafficking fentanyl and similar opioids has led to an epidemic in the United States. Currently, fentanyl can be made for pennies and sold for as little as 40 cents in Washington State. The ease of availability has led to deaths in our most vulnerable population—children. Between June and September 2023, there were three fatal overdoses of children five years and younger in Portland, OR. In a high-profile case in New York City, investigators found a kilogram of fentanyl powder in a day care facility after a 1-year-old died and three others became critically ill. 

The Biden Administration has responding to the crisis in part by placing sanctions against and indicting executives in Chinese companies for manufacturing and distributing precursor chemicals, which are commonly sold to Mexican drug cartels to create fentanyl. The drug is then trafficked into the United States for sale and use. There are also concerns about fentanyl being used as a weapon of mass destruction, similar to the anthrax concerns in the early 2000s.

The daily concerns of opioid overdoses have plagued public health and law enforcement professionals for years. In Seattle, WA, alone, there are 15 non-fatal overdoses daily, straining the emergency medical systems. There were nearly 5,000 non-fatal overdoses in the first seven months of 2023 in King County, WA, an increase of 70% compared to 2022. In a landmark decision, in March 2023 the Food and Drug Administration (FDA) approved naloxone, a drug to reverse the effects of opioid overdoses, as an over-the-counter nasal spray in an attempt to reduce overdose deaths. Naloxone nasal spray was initially approved for prescription use only in 2015 , significantly limiting access to first responders and available to high-risk patients when prescribed opioids. In New York, physicians have been required to prescribe naloxone to patients at risk of overdose since 2022. Although naloxone is now available without a prescription, access is still limited by price, with one dose costing as much as $65, and some people requiring more than one dose to reverse the overdose. Citing budget concerns, Governor Newsom vetoed California’s proposed AB 1060, which would have limited the cost of naloxone to $10 per dose. Fentanyl testing strips that can be used to test substances for the presence of fentanyl before use show promise in preventing unwanted fentanyl-adulterated overdoses. The Expanding Nationwide Access to Test Strips Act, which was introduced to the Senate in July 2023, would decriminalize the testing strips as an inexpensive way to reduce overdose while following evidence-based harm-reduction theories.

Illicit drugs are also one of the top threats to national security. Law enforcement agencies are dealing with a triple epidemic of gun violence, the opioid crisis, and critical staffing levels. Crime prevention is tied directly to increased police staffing, with lower staffing limiting crime control tactics, such as using interagency task forces, to focus on a specific crime problem. Police are at the forefront of the opioid crisis, expected to provide an emergency response to potential overdoses and ensure public safety while disrupting and investigating drug-related crimes. Phoenix Police Department seized over 500,000 fentanyl pills in June 2023 as part of Operation Summer Shield, showing law enforcement’s central role in fighting the opioid crisis. DHS created a comprehensive interdiction plan to reduce the national and international supply of opioids, working with the private sector to decrease drugs brought into the United States and increasing task forces to focus on drug traffickers. 

Prosecutors are starting to charge drug dealers and parents of children exposed to fentanyl in their residences in fatal overdose cases. In an unprecedented action, Attorney General Merrick Garland recently charged Mexican cartel members with trafficking fentanyl and indicting Chinese companies and their executives for creating and selling precursor chemicals. In November 2023, sanctions were placed against the Sinaloa cartel and four firms from Mexico suspected of drug trafficking to the United States, removing their ability to legally access the American banking system. Despite this work, criminal justice-related efforts alone are not reducing overdoses and deaths, showing a need for a multifaceted approach to save lives. 

While these numbers of opioid overdoses are appalling, they are likely underreported. Accurate reporting of fatal overdoses varies dramatically across the country, with the lack of training of medicolegal death investigators to recognize potential drug toxicity-related deaths, coupled with the shortage of forensic pathologists and the high costs of toxicology testing, leading to inaccurate cause of death information. The data ecosystem is changing, with agencies and their valuable data remaining disjointed and unable to communicate across systems. A new model could be found in the CDC’s Data Modernization Initiative, which tracked millions of COVID-19 cases across all states and districts, including data from emergency departments and medicolegal offices. This robust initiative to modernize data transfer and accessibility could be transformative for public health. The electronic case reporting system and strong surveillance systems that are now in place can be used for other public health outbreaks, although they have not been institutionalized for the opioid epidemic.

Toxicology testing can take upwards of 8–10 weeks to receive, then weeks more for interpretation and final reporting of the cause of death. The CDC’s State Unintentional Drug Overdose Reporting System receives data from 47 states from death certificates and coroner/medical examiner reports. Even with the CDC’s extensive efforts, the data-sharing is voluntary, and submission is rarely timely enough for tracking real-time outbreaks of overdoses and newly emerging drugs. The increase of novel psychoactive substances, including the addition of the animal tranquilizer xylazineto other drugs, is commonly not included in toxicology panels, leaving early fatal drug interactions undetected and slowing notification of emerging drugs regionally. The data from medicolegal reports is extremely valuable for interdisciplinary overdose fatality review teams at the regional level that bring together healthcare, social services, criminal justice, and medicolegal personnel to review deaths and determine potential intervention points. Overdose fatality review teams can use the data to inform prevention efforts, as has been successful with infant sleeping position recommendations formed through infant mortality review teams.

Plan of Action

Reducing opioid misuse and saving lives requires a multi-stage, multi-agency approach. This includes expanding real-time opioid surveillance efforts; funding for overdose awareness, prevention, and education; and improved training of first responders and medicolegal personnel on recognizing, responding to, and reporting overdoses. Nationwide, improved toxicology testing and reporting is essential for accurate reporting of overdose-involved drugs and determining the efficacy of efforts to combat the opioid epidemic.

Recommendation 1. Fund research to determine the efficacy of current efforts in opioid misuse reduction and prevention.

DOJ should provide grant funding for researchers to outline all known current efforts of opioid misuse reduction and prevention by law enforcement, public health, community programs, and other agencies. The efforts, including the use of suboxone and methadone, should be evaluated to determine if they follow evidence-based practices, how the programs are funded, and their known effect on the community. The findings should be shared widely and without paywalls with practitioners, researchers, and government agencies to hone their future work to known successful efforts and to be used as a foundation for future evidence-based, innovative program implementation.

Recommendation 2. Modernize data systems and surveillance to provide real-time information.

City, county, regional, and state first responder agencies work across different platforms, as do social service agencies, hospitals, private physicians, clinics, and medicolegal offices. A single fatal drug toxicity-related death has associated reports from a law enforcement officer, fire department personnel, emergency medical services, an emergency department, and a medicolegal agency. Additional reports and information are sought from hospitals and clinics, prior treating clinicians, and social service agencies. Even if all of these reports can be obtained, data received and reviewed is not real-time and not accessible across all of the systems. 

Medicolegal agencies are arguably the most underprepared for data and surveillance modernization. Only 43% of medicolegal agencies had a computerized case management system in 2018, which was an increase from 31% in 2004. Outside of county or state property, only 75% of medicolegal personnel had internet access from personal devices. The lack of computerized case management systems and limited access to the internet can greatly hinder case reporting and providing timely information to public health and other reporting agencies.

With the availability and use of naloxone by private persons, the Public Naloxone Administration Dashboard from the National EMS Information System (NEMSIS) should be supported and expanded to include community member administration of naloxone. The emergency medical services data can be aligned with the anonymous upload of when, where, and basic demographics for the recipient of naloxone, which can also be made accessible to emergency departments and medicolegal death investigation agencies. While the database likely will not be used for all naloxone administrations, it can provide hot spot information and notify social services of potential areas for intervention and assistance. The database should be tied to the first responder/hospital/medicolegal database to assist in robust surveillance of the opioid epidemic.

Recommendation 3. Increase overdose awareness, prevention education, and availability of naloxone.

Awareness of the likelihood of poisoning and potential death from the use of fentanyl or counterfeit pills is key in prevention. The DEA declared August 21 National Fentanyl Prevention and Awareness Day to increase knowledge of the dangers of fentanyl, with the Senate adopting a resolution to formally recognize the day in 2023. Many states have opioid and fentanyl prevention tactics on their public health websites, and the CDC has educational campaigns designed to reach young adults, though the education needs to be specifically sought out. Funding should be made available to community organizations and city/county governments to create public awareness campaigns about fentanyl and opioid usage, including billboards, television and streaming ads, and highly visible spaces like buses and grocery carts. 

ED allows evidence-based prevention programs in school settings to assist in reducing risk factors associated with drug use and misuse. The San Diego Board of Supervisors approved a proposal to add education focused on fentanyl awareness after 12 juveniles died of fentanyl toxicity in 2021. The district attorney supported the education and sought funding to sponsor drug and alcohol training on school campuses. Schools in Arlington, VA, note the rise in overdoses but recognize that preventative education, when present, is insufficient. ED should create prevention programs at grade-appropriate levels that can be adapted for use in classrooms nationwide.

With the legalization of over-the-counter naloxone, funding is needed to provide subsidized or free access to this life-saving medication. Powerful fentanyl analogs require higher doses of naloxone to reverse the toxicity, commonly requiring multiple naloxone administrations, which may not be available to an intervening community member. The State of Washington’s Department of Public Health offers free naloxone kits by mail and at certain pharmacies and community organizations, while Santa Clara University in California has a vending machine that distributes naloxone for free. While naloxone reverses the effects of opioids for a short period, once it wears off, there is a risk of a secondary overdose from the initial ingestion of the opioid, which is why seeking medical attention after an overdose is paramount to survival. Increasing access to naloxone in highly accessible locations—and via mail for more rural locations—can save lives. Naloxone access and basic training on signs of an opioid overdose may increase recognition of opioid misuse and empower the community to provide immediate, lifesaving action. 

However, there are concerns that naloxone may end up in a shortage. With its over-the-counter access, naloxone may still be unavailable for those who need it most due to cost (approximately $20 per dose) or access to pharmacies. There is a national push for increasing naloxone distribution, though there are concerns of precursor shortages that will limit or halt production of naloxone. Governmental support of naloxone manufacturing and distribution can assist with meeting demand and ensuring sustainability in the supply chain.

Recommendation 4. Improve training of first responders and medicolegal death investigators.

Most first responders receive training on recognizing signs and symptoms of a potential overdose, and emergency medical and firefighting personnel generally receive additional training for providing medical treatment for those who are under the influence. To avoid exposure to fentanyl, potentially causing a deadly situation for the first responder, additional training is needed about what to do during exposure and how to safely provide naloxone or other medical care. DEA’s safety guide for fentanyl specifically outlines a history of inconsistent and misinformation about fentanyl exposure and treatment. Creating an evidence-based training program that can be distributed virtually and allow first responders to earn continuing education credit can decrease exposure incidents and increase care and responsiveness for those who have overdosed.

While the focus is rightfully placed on first responders as the frontline of the opioid epidemic, medicolegal death investigators also serve a vital function at the intersection of public health and criminal justice. As the professionals who respond to scenes to investigate the circumstances (including cause and manner) surrounding death, medicolegal death investigators must be able to recognize signs of drug toxicity. Training is needed to provide foundational knowledge on deciphering evidence of potential overdose-related deaths, photographing scenes and evidence to share with forensic pathologists, and memorializing the findings to provide an accurate manner of death. Causes of death, as determined by forensic pathologists, need appropriate postmortem examinations and toxicology testing for accuracy, incorporated with standardized wording for death certificates to reflect the drugs contributing to the death. Statistics on drug-related deaths collected by the CDC and public health departments nationwide rely on accurate death certificates to determine trends.

The CDC created the Collaborating Office for Medical Examiners and Coroners (COMEC) in 2022 to provide public health support for medicolegal death investigation professionals. COMEC coordinates health surveillance efforts in the medicolegal community and champions quality investigations and accurate certification of death. The CDC offers free virtual, asynchronous training for investigating and certifying drug toxicity deaths, though the program is not well known or advertised, and there is no ability to ask questions of professionals to aid in understanding the content. Funding is needed to provide no-cost, live instruction, preferably in person, to medicolegal offices, as well as continuing education hours and thorough training on investigating potential drug toxicity-related deaths and accurately certifying death certificates.

Cumulatively, the roughly 2,000 medicolegal death investigation agencies nationwide investigated more than 600,000 deaths in 2018, running on an average budget of $470,000 per agency. Of these agencies, less than 45% had a computerized case management system, which can significantly delay data sharing with public health and allied agencies and reduce reporting accuracy, and only 75% had access to the internet outside of their personally owned devices. Funding is needed to modernize and extend the infrastructure for medicolegal agencies to allow basic functions such as computerized case management systems and internet access, similar to grant funding from the National Network of Public Health Institutes.

Recommendation 5. Fund rapid and thorough toxicology testing in emergency departments and coroner/medical examiner agencies.

Rapid, accurate toxicology testing in an emergency department setting can be the difference between life and death treatment for a patient. Urine toxicology testing is fast, economical, and can be done at the bedside, though it cannot quantify the amount of drug and is not inclusive for emerging drugs. Funding for enhanced accurate toxicology testing in hospitals with emergency departments, including for novel psychoactive substances and opioid analogs, is necessary to provide critical information to attending physicians in a timely manner to allow reversal agents or other vital medical care to be performed.

With the limited resources medicolegal death investigation agencies have nationally and the average cost of $3000 per autopsy performed, administrators need to triage which deaths receive toxicology testing and how in-depth the testing will be. Advanced panels, including ever-changing novel psychoactive substances, are costly and can result in inaccurate cause of death reporting if not performed routinely. Funding should be provided to medicolegal death investigating agencies to subsidize toxicology testing costs to provide the most accurate drugs involved in the death. Accurate cause of death reporting will allow for timely public health surveillance to determine trends and surges of specific drugs. Precise cause of death information and detailed death investigations can significantly contribute to regional multidisciplinary overdose fatality review task forces that can identify potential intervention points to strengthen services and create evidence to build future life-saving action plans.

Recommendation 6. Enhance prevention and enforcement efforts.

DOJ should fund municipal and state law enforcement grants to use evidence-based practices to prevent and enforce drug-related crimes. Grant applications should include a review of the National Institute of Justice’s CrimeSolutions.gov practices in determining potential effectiveness or using foundational knowledge to build innovative, region-specific efforts. The funding should be through competitive grants, requiring an analysis of local trends and efforts and a detailed evaluation and research dissemination plan. Competitive grant funding should also be available for community groups and programs focusing on prevention and access to naloxone.

An often overlooked area of prevention is for justice-involved individuals who enter jail or prison with substance use disorders. Approximately 65% of prisoners in the United States have a substance abuse order, and an additional 20% of prisoners were under the influence of drugs or alcohol when they committed their crime. About 15% of the incarcerated population was formally diagnosed with an opioid use disorder. Medications are available to assist with opioid use disorder treatments that can reduce relapses and post-incarceration toxicity-related deaths, though less than 15% of correctional systems offer medication-assisted opioid use treatments. Extensive case management coupled with trained professionals to prescribe medication-assisted treatment can help reduce opioid-related relapses and overdoses when justice-involved individuals are released to their communities, with the potential to reduce recidivism if treatment is maintained.

DEA should lead local and state law enforcement training on recognizing drug trends, creating regional taskforces for data-sharing and enforcement focus, and organizing drug takeback days. Removing unused prescription medications from homes can reduce overdoses and remove access to unauthorized users, including children and adolescents. Funding to increase collection sites, assist in the expensive process of properly destroying drugs, and advertising takeback days and locations can reduce the amount of available prescription medications that can result in an overdose. 

DHS, TREAS, and DOS should expand their current efforts in international trafficking investigations, create additional sanctions against businesses and individuals illegally selling precursor chemicals, and collaborate with countries to universally reduce drug production.

Budget Proposal

A budget of $800 million is proposed to evaluate the current efficacy of drug prevention and enforcement efforts, fund prevention and enforcement efforts, improve training for first responders and medicolegal death investigators, increase rapid and accurate toxicology testing in emergency and medicolegal settings, and enhance collaboration between law enforcement agencies. The foundational research on the efficacy of current enforcement, preventative efforts, and surveillance should receive $25 million, with findings transparently available and shared with practitioners, lawmakers, and community members to hone current practices.

DOJ should receive $375 million to fund grants; collaborative enforcement efforts between local, state, and federal agencies; preventative strategies and programs; training for first responders; and safe drug disposal programs.

CDC should receive $250 million to fund the training of medicolegal death investigators to recognize and appropriately document potential drug toxicity-related deaths, modernize data and reporting systems to assist with accurate surveillance, and provide improved toxicology testing options to emergency departments and medicolegal offices to assist with appropriate diagnoses. Funding should also be used to enhance current data collection efforts with the Overdose to Action program³⁴ by encouraging timely submissions, simplifying the submission process, and helping create or support overdose fatality review teams to determine potential intervention points.

ED should receive $75 million to develop curricula for K-12 and colleges to raise awareness of the dangers of opioids and prevent usage. The curriculum should be made publicly available for access by parents, community groups, and other organizations to increase its usage and reach as many people as possible.

BOP should receive $25 million to provide opioid use disorder medication-assisted treatments by trained clinicians and extensive case management to assist in reducing post-incarceration relapse and drug toxicity-related deaths. The policies, procedures, and steps to create medication-assisted programming should be shared with state corrections departments and county jails to build into their programming to expand use in carceral settings and assist in reducing drug toxicity-related deaths at all incarceration levels.

DOS, DHS, and TREAS should jointly receive $50 million to strengthen their current international investigations and collaborations to stop drug trafficking, the manufacture and sales of precursors, and combating organized crime’s association with the illegal drug markets.

Conclusion

Opioid-related overdoses and deaths continue to needlessly and negatively affect society, with parents burying children, sometimes infants, in an unnatural order. With the low cost of fentanyl production and the high return on investment, fentanyl is commonly added to illicit drugs and counterfeit, real-looking prescription pills. Opioid addiction and fatal overdoses affect all genders, races, ethnicities, and socioeconomic statuses, with no end to this deadly path in sight. Combining public health surveillance with enforcement actions, preventative education, and innovative programming is the most promising framework for saving lives nationally.

Last year was the hottest year in recorded human history. In summer 2023 alone, up to 275 million Americans were placed under some type of heat advisory. Experts at NOAA project a one-in-three chance that 2024 will be even warmer than 2023 — with a 99% chance that 2024 will rank among the top five warmest years. With “danger season” 2024, the time when extreme heat and numerous other climate-related hazards in the United States tend to occur — beginning after April 29th, there is a vital need to build resilience to the impending heat waves. 

To begin to respond to this urgent need at the federal level, FAS engaged +85 federal policy experts and recruited 33 authors to work on +18 policy memos through our Extreme Heat Policy Sprint, generating +150 policy recommendations to address extreme heat’s impacts and build community resilience. Our contributors’ recommendations represent the building blocks of a whole-of-government strategy on extreme heat, spanning six domains: 

1. Infrastructure and the built environment
2. Workforce safety and development
3. Public health, medical preparedness, and health security
4. Food security and multi-hazard resilience
5. Planning and response
6. Data and indices

Collectively, FAS has identified 34 offices and/or agencies that can act on extreme heat. However, as noted in our previous publication, extreme heat receives minimal targeted federal support and funding for planning, mitigation, and recovery despite being the number one weather-related killer of Americans. The national response to extreme heat is still being developed and requires increased, coordinated action across the White House, Congress, and federal agencies. Improved coordination and effective planning requires a clear understanding of the landscape of the existing federal efforts. For this reason, the Federation of American Scientists has put together an Extreme Heat Federal Policy and Funding tracker to monitor the progress of federal actions on extreme heat, enhance accountability, and to allow stakeholders to stay informed on the evolving state of U.S. climate-change resilience response as it evolves. This tracker is organized around our six key domains of federal opportunity.

In the absence of a national strategy, states, counties, and cities around the country have had to take on the responsibility of experimenting and attempting to address extreme heat in their communities with limited available resources. While many state and local governments are working diligently to make significant advances, national extreme heat resilience requires a whole-of-government federal approach, as it directly impacts public health, energy, housing, national security, international relations, and many more policy domains. The federal government plays a critical role in scaling heat resilience interventions through funding, guidance, research and development, regulations, and other policy levers.

Executive branch agencies need a government-wide coordination strategy to prioritize and address extreme heat nationwide. This strategy requires comprehensive reviews of available resources for financial assistance, assessments of regulatory and rulemaking authority, and an emphasis on legislative action — in order to define the problems to solve, assign priorities for agencies, and develop evaluation metrics for review, adjustment, and renewal of programs The FAS Federal Extreme Heat Policy and Funding tracker serves as a key starting point towards these necessary actions.

Extreme heat – and similar people-centered disasters like heavy wildfire smoke – kills thousands of Americans annually, more than any other weather disaster. However, U.S. disaster policy is more equipped for events that damage infrastructure than those that mainly cause deaths. Policy actions can save lives and money by better integrating people-centered disasters.

Challenge and Opportunity

At the federal level, emergency management is coordinated through the Federal Emergency Management Agency (FEMA), with many other agencies as partners, including Centers for Disease Control (CDC), Department of Housing and Urban Development (HUD), and Small Business Administration (SBA). Central to the FEMA process is the requirement under the Stafford Act that the President declare a major disaster, which has never happened for extreme heat. This seems to be caused by a lack of tools to determine when a heat wave event escalates into a heat wave disaster, as well as a lack of a clear vision of federal responsibilities around a heat wave disaster.

Gap 1. When is a heat event a heat disaster?

A core tenet of emergency management is that events escalate into disasters when the impacts exceed available resources. Impact measurement is increasingly quantitative across FEMA programs, including quantitative metrics used in awarding Fire Management Assistance Grant (FMAG), Public Assistance (PA), and Individual Assistance (IA) and in the Benefit Cost Analysis (BCA) for hazard mitigation grants.

However, existing calculations are unable to incorporate the health impacts that are a main impact of heat waves. When health impacts are included in a calculation, it is only in limited cases; for example, the BCA allows mental healthcare savings, but only for residential mitigation projects that reduce post-disaster displacement.

Gap 2. What is the federal government’s role in a heat disaster?

Separate from the declaration of a major disaster is the federal government’s role during that disaster. Existing programs within FEMA and its partner agencies are designed for historic disasters rather than those of the modern and future eras. For example, the National Risk Index (NRI), used to understand the national distribution of risks and vulnerability, bases its risk assessment on events between 1996 and 2019. As part of considering future disasters, disaster policy should consider intensified extreme events and compound hazards (e.g., wildfire during a heat wave) that are more likely in the future. 

A key part of including extreme heat and other people-centered disasters will be to shift toward future-oriented resilience and adaptation. FEMA has already been making this shift, including a reorganization to highlight resilience. The below plan of action will further help FEMA with its mission to help people before, during, and after disasters.

Plan of Action

To address these gaps and better incorporate extreme heat and people-centered disasters into U.S. emergency management, Congress and federal agencies should take several interrelated actions.

Recommendation 1. Defining disaster

To clarify that extreme heat and other people-centered disasters can be disasters, Congress should:

(1) Add heat, wildfire smoke, and compound events (e.g., wildfire during a heat wave) to the list of disasters in Section 102(2) of the Stafford Act. Though the list is intended to be illustrative rather than exhaustive, as demonstrated by the declaration of COVID-19 as a disaster despite not being on the list, explicit inclusion of these other disasters on the list clarifies that intent. This action is widely supported and example legislation includes the Extreme Heat Emergency Act of 2023. 

(2) FEMA should standardize procedures for determining when disparate events are actually a single compound event. For example, many individual tornadoes in Kentucky in 2021 were determined to be the results of a single weather pattern, so the event was declared as a disaster, but wildfires that started due to a single heat dome in 2022 were determined to be individual events and therefore unable to receive a disaster declaration. Compound hazards are expected to be more common in the future, so it is critical to work toward standardized definitions.

(3) Add a new definition of “damage” to Section 102 of the Stafford Act that includes human impacts such as death, illness, economic impacts, and loss of critical function (i.e., delivery of healthcare, school operations, etc.). Including this definition in the statute facilitates the inclusion of these categories of impact.

To quantify the impacts of heat waves, thereby facilitating disaster decisions, FEMA should adopt strategies already used by the federal government. In particular, FEMA should:

(4) Work with HHS to expand the capabilities of the National Syndromic Surveillance Program (NSSP) to evaluate in real time various societal impacts like the medical-care usage and work or school days lost. Recent studies indicate that lost work productivity is a major impact of extreme heat that is currently unaccounted—a gap of potentially billions of dollars. The NSSP Community of Practice can help expand tools across multiple jurisdictions too. Expanding syndromic surveillance expands our ability to measure the impacts of heat, building on the tools available through the CDC Heat and Health Tracker.

(5) Work with CDC to expand their use of excess-death and flu-burden methods, which can provide official estimates of the health impacts of extreme heat. These methods are already in use for heat, but should be regularly applied at the federal level, and would complement the data available from health records via NSSP because it calculates missing data.

(6) Work with EPA to expand BenMAP software to include official estimates of health impacts attributable to extreme heat. The current software provides official estimates of health impacts attributable to air pollution and is used widely in policy. Research is needed to develop health-impact functions for extreme heat, which could be solicited in a research call such as through NIH’s Climate and Health initiative, conducted by CDC epidemiologists, added to the Learning Agenda for FEMA or a partner agency, or tasked to a national lab. Additional software development is also needed to cover real-time and forecast impacts in addition to the historic impacts it currently covers. The proposed tool complements Recommendations #4-5 because it includes forecast data.

(7) Quantify heat illness and death impacts. Real-time data is available in the CDC Heat and Health Tracker. These impacts can be converted to dollars for comparison to property damage using the Value of a Statistical Life (VSL), which FEMA already does in the NRI ($11.6 million per death and $1.16 million per injury in 2022). VSL should be expanded across FEMA programs, in particular the decision for major disaster declarations. VSL could be immediately applied to current data from NSSP, to expanded NSSP and excess-death data (Recommendations #4-5), and is already incorporated into BenMAP so would be available in the expanded BenMAP (Recommendation #6).

(8) Quantify the impact of extreme heat on critical infrastructure, including agriculture. Improved quantification methods could be achieved by expanding the valuation methods for infrastructure damage already in the NRI and could be integrated with the National Integrated Heat Health Information System (NIHHIS). The damage and degradation of infrastructure is often underestimated and should be accurately quantified. For example,

• (a) The Federal Highway Administration (FHWA) has reported on extreme heat and documented heat impacts on asset management, where the Department of Transportation (DOT) in multiple states, including Arizona’s DOT, and the National Cooperative Highway Research Program have developed evaluation methods for quantifying impacts, and
• (b) Impacts to critical infrastructure have been quantified across sectors and should include representative agencies such as transportation (e.g., FHWA, DOT), transit (e.g., Federal Transit Authority (FTA)), energy (e.g., Department of Energy (DOE), EPA, water/sanitation (e.g., U.S. Army Corps of Engineers (USACE), Bureau of Reclamation (BOR)), telecommunications (e.g., Department of Homeland Security, Federal Communications Commission), social (e.g., HUD, HHS, Department of Education (ED)), and environmental infrastructures (e.g., EPA, USACE, National Parks Service (NPS)). 

Together, these proposed data tools would provide FEMA with a comprehensive understanding of the impacts of extreme heat on human health in the past, present, and near future, putting heat on the same playing field as other disasters. 

Real-time impacts are particularly important for FEMA to investigate requests for a major disaster declaration. Forecast impacts are important for the ability to preposition resources, as currently done for hurricanes. The goal for forecasting should be 72 hours. To achieve this goal from current models (e.g., air quality forecasts are generally just one day in advance):

(9) Congress should fund additional sensors for extreme weather disasters, to be installed by the appropriate agencies. More detailed ideas can be found in other FAS memos for extreme heat and wildfire smoke and in recommendation 44 of the recent Wildland Fire Commission report.

(10) Congress should invest in research on integrated wildfire-meteorological models through research centers of excellence funded by national agencies or national labs. Federal agencies can also post specific questions as part of their learning agendas. Models should specifically record the contribution of wildfire smoke from each landscape parcel to overall air pollution in order to document the contribution of impacts. This recommendation aligns with the Fire Environment Center proposed in the Wildland Fire Commission report.

Recommendation 2. Determining federal response to heat disasters

To incorporate extreme heat and people-centered disasters across emergency management, FEMA and its peer agencies can expand existing programs into new versions that incorporate such disasters. We split these programs here by the phase of emergency management.

Preparedness

(11) Using Flood Maps as a model, FEMA should create maps for extreme heat and other people-centered disasters. Like flood maps, these new maps should highlight the infrastructure at risk of failure or the loss of access to critical infrastructure (e.g., FEMA Community Lifelines) during a disaster. Failure here is defined as the inability of infrastructure to provide its critical function(s); infrastructure that ceases to be usable for its purpose when an extreme weather event occurs (i.e., bitumen softening on airport tarmacs, train line buckling, or schools canceled because classrooms were too hot or too smokey). This includes impacts to evacuation routes and critical infrastructure that would severely impact the functioning of society. Creating such a map requires a major interagency effort integrating detailed information on buildings, heat forecasts, energy grid capacity, and local heat island maps, which likely requires major interagency collaboration. NIHHIS has most of the interagency collaborators needed for such effort, but should also include the Department of Education. Such an effort likely will need direct funding from Congress in order to have the level of effort needed.

(12) FEMA and its partners should publish catastrophic location-specific scenarios to align preparedness planning. Examples include the ARkStorm for atmospheric rivers, HayWired for earthquake, and Cascadia Rising for tsunami. Such scenarios are useful because they help raise public awareness and increase and align practitioner preparedness. A key part of a heat scenario should be infrastructure failure and its cascading impacts; for example, grid failure and the resulting impact on healthcare is expected to have devastating effects.

(13) FEMA should incorporate future projections of disasters into the NRI. The NRI currently only uses historic data on losses (typically 1996 to 2019). An example framework is the $100 million Prepare California program, which combined historic and projected risks in allocating preparedness funds. An example of the type of data needed for extreme heat includes the changes in extreme events that are part of the New York State Climate Impacts Assessment.

(14) FEMA should expand its Community Lifelines to incorporate extreme heat and cascading impacts for critical infrastructure as a result of extreme heat, which must remain operable during and after a disaster to avoid significant loss of human life and property. 

(15) The strategic national stockpile (SNS) should be expanded to focus on tools that are most useful in extreme weather disasters. A key consideration will be fluids, including intravenous (IV) fluids, which the current medical-focused SNS excludes due to weight. In fact, the SNS relies on the presence of IV fluids at the impacted location, so if there is a shortage due to extreme heat, additional medicines might not be deliverable. To include fluids, a new model will be necessary because of the logistics of great weight.

(16) OSHA should develop occupational safety guidelines to protect workers and students from hazardous exposures, expanding on its outdoor and indoor heat-related hazards directive. Establishing these thresholds, such as max indoor air temperatures similar to California’s Occupational Safety and Health Standards Board, can help define the threshold of when a weather event escalates into a disaster. No federal regulations exist for air quality, so California’s example could be used as a template. The need already exists: an average of 2,700 heat-related injuries and 38 heat-related fatalities were reported annually to OSHA between 2011 and 2019.

(17) FEMA and its partners should expand support for community-led multi-hazard resilience hubs, including learning from those focused on extreme heat. FEMA already has its Hubs for Equitable Resilience and Engagement, and EPA has major funding available to support resilience hubs. This equitable model of disaster resilience that centers on the needs of the specific community should be supported.

Response

(18) FEMA should introduce smaller disaster-assistance grants for extreme weather disasters: HMAG, CMAG, and SMAG (Heat, Cold, and Smoke Management Assistance Grants, respectively). They should be modeled on FMAG grants, which are rapidly awarded when firefighting costs exceed available resources but do not necessarily escalate to the level of a major disaster declaration. For extreme weather disasters, the model would be similar, but the eligible activities might focus on climate-controlled shelters, outreach teams to reach especially vulnerable populations, or a surge in medical personnel and equipment. Just like firefighting equipment and staff needed to fight wildfires, this equipment and staff are needed to reduce the impacts of the disaster. FMAG is supported by the Disaster Relief Fund, so if the H/C/SMAG programs also tap that, it will require additional appropriations. Shelters are already supported by the Public Assistance (PA) program, but PA requires a major disaster declaration, so the introduction of lower-threshold funds would increase access.

(19) HHS could activate Disaster Medical Assistance Teams to mitigate any surge in medical needs. These teams are intended to provide a surge in medical support during a disaster and are deployed in other disasters. See our other memos on this topic.

(20) FEMA could deploy Incident Management Assistance Teams and supporting gear for additional logistics. They can also deploy backup energy resources such as generators to prevent energy failure at critical infrastructure.

Recovery and Mitigation

(21) Programs addressing gray or green infrastructure should consider the impact upgrades will have on heat mitigation. For example, EPA and DOE programs funding upgrades to school gray infrastructure should explicitly consider whether proposed upgrades will meet the heat mitigation needs based on climate projections. Projects funding schoolyard redesign should explicitly consider heat when planning blacktop, playground, and greenspace placement to avoid accidentally creating hot spots where children play. CAL FIRE’s grant to provide $47 million for schools to convert asphalt to green space is a state-level example.

(22) Expand the eligible actions of FEMA’s Hazard Mitigation Assistance (HMA) to include installation/upgrade of heating, ventilation, and cooling (HVAC) systems and a more expansive program to support nature-based solutions (NBS) like green space installation. Existing guidance allows HVAC mitigation for other hazards and incentivizes NBS for other hazards.

(23) Increase alignment across federal programs, identifying programs where goals align. For example, FEMA just announced that solar panels would be eligible for the 75% federal cost share as part of mitigation programs; other climate and weatherization improvements should also be eligible under HMA funds.

(24) FEMA should modify its Benefit Cost Analysis (BCA) process to fairly evaluate mitigation of health and life-safety hazards, to better account for mitigation of multiple hazards, and to address equity considerations introduced in Office of Management and Budget’s recent BCA proposal. Some research is likely needed (e.g., the cost-effectiveness of various nature-based solutions like green space is not yet well-defined enough to use in a BCA); this research could be performed by national labs, put into FEMA’s Learning Agenda, or tasked to a partner agency like DOE.

(25) Expand the definition of medical devices to include items that protect against extreme weather. For example, the Center for Medicare and Medicaid Services could define air-conditioning units and innovative personal cooling devices as eligible for prescription under Medicare/Medicaid.

To support the above recommendations, Congress should:

(26) Ensure FEMA is sufficiently and consistently funded to conduct resilience and adaptation activities. Congress augments the Disaster Relief Fund in response to disasters, but they report that the fund will be billions of dollars in deficit by September 2024. It has furthermore been reported that FEMA has delayed payments due to uncertainty of funding through Congressional budget negotiations. In order to support the above programs, it is essential that Congress fund FEMA at a level needed to act. To support FEMA’s shift to a focus on resilience, the increase in funding should be through annual appropriations rather than the Disaster Relief Fund, which is augmented on an ad hoc basis.

(27) Convene a congressional commission like the recent Wildland Fire Commission to analyze the federal capabilities around extreme weather disasters and/or extreme heat. This commission would help source additional ideas and identify political pathways toward creating these solutions, and is merited by the magnitude of the disaster.

Conclusion

People across the U.S. are being increasingly exposed to extreme heat and other people-centered disasters. The suggested policies and programs are needed to upgrade national emergency management for the modern and future era, thereby saving lives and reducing disaster costs to the public.

The escalating frequency and intensity of extreme heat events, exacerbated by climate change, pose a significant and growing threat to public health. This problem is further compounded by the lack of standardized education and preparedness measures within the healthcare system, creating a critical gap in addressing the health impacts of extreme heat. The Department of Health and Human Services (HHS), especially the Centers for Medicare & Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), and the Office of Climate Change and Health Equity (OCCHE) can enhance public health preparedness for the health impacts of climate change. By leveraging funding mechanisms, incentives, and requirements, HHS can strengthen health system preparedness, improve health provider knowledge, and optimize emergency response capabilities. 

By focusing on interagency collaboration and medical education enhancement, strategic measures within HHS, the healthcare system can strengthen its resilience against the health impacts of extreme heat events. This will not only improve coding accuracy, but also enhance healthcare provider knowledge, streamline emergency response efforts, and ultimately mitigate the health disparities arising from climate change-induced extreme heat events. Key recommendations include: establishing dedicated grant programs and incentivizing climate-competent healthcare providers; integrating climate-resilience metrics into quality measurement programs; leveraging the Health Information Technology for Economic and Clinical Health (HITECH) Act to enhance ICD-10 coding education; and collaborating with other federal agencies such as the Department of Veterans Affairs (VA), the Federal Emergency Management Agency (FEMA), and the Department of Defense (DoD) to ensure a coordinated response. The implementation of these recommendations will not only address the evolving health impacts of climate change but also promote a more resilient and prepared healthcare system for the future.

Challenge

The escalating frequency and intensity of extreme heat events, exacerbated by climate change, pose a significant and growing threat to public health. The scientific consensus, as documented by reports from the Intergovernmental Panel on Climate Change (IPCC) and the National Climate Assessment, reveals that vulnerable populations, such as children, pregnant people, the elderly, and marginalized communities including people of color and Indigenous populations, experience disproportionately higher rates of heat-related illnesses and mortality. The Lancet Countdown’s 2023 U.S. Brief underscores the escalating threat of fossil fuel pollution and climate change to health, highlighting an 88% increase in heat-related mortality among older adults and calling for urgent, equitable climate action to mitigate this public health crisis.

Inadequacies in Current Healthcare System Response

Reports from healthcare institutions and public health agencies highlight how current coding practices contribute to the under-recognition of heat-related health impacts in vulnerable populations, exacerbating existing health disparities. The current inadequacies in ICD-10 coding for extreme heat-related health cases hinder effective healthcare delivery, compromise data accuracy, and impede the development of targeted response strategies. Challenges in coding accuracy are evident in existing studies and reports, emphasizing the difficulties healthcare providers face in accurately documenting extreme heat-related health cases. An analysis of emergency room visits during heat waves further indicates a gap in recognition and coding, pointing to the need for improved medical education and coding practices. Audits of healthcare coding practices reveal inconsistencies and inaccuracies that stem from a lack of standardized medical education and preparedness measures, ultimately leading to underreporting and misclassification of extreme heat cases. Comparative analyses of health data from regions with robust coding practices and those without highlight the disparities in data accuracy, emphasizing the urgent need for standardized coding protocols.

There is a crucial opportunity to enhance public health preparedness by addressing the challenges associated with accurate ICD-10 coding in extreme heat-related health cases. Reports from government agencies and economic research institutions underscore the economic toll of extreme heat events on healthcare systems, including increased healthcare costs, emergency room visits, and lost productivity due to heat-related illnesses. Data from social vulnerability indices and community-level assessments emphasize the disproportionate impact of extreme heat on socially vulnerable populations, highlighting the urgent need for targeted policies to address health disparities.

Opportunity

As Medicare is the largest federal source of Graduate Medical Education (GME) funding (Figure 1), the Department of Health and Human Services’ (HHS) Centers for Medicare & Medicaid Services (CMS) and the National Center for Health Statistics (NCHS) play a critical role in developing coding guidelines. Thus, it is essential for HHS, CMS, and other pertinent coordinating agencies to be involved in the process for developing climate change-informed graduate medical curricula.

  Figure 1: Graduate Medical Education Funding Streams

By focusing on medical education enhancement, strategic measures within HHS, and fostering interagency collaboration, the healthcare system can strengthen its resilience against the health impacts of extreme heat events. Improving coding accuracy, enhancing healthcare provider knowledge, streamlining emergency response efforts, and mitigating health disparities related to extreme heat events will ultimately strengthen the healthcare system and foster more effective, inclusive, and equitable climate and health policies. Improving the knowledge and training of healthcare providers empowers them to respond more effectively to extreme heat-related health cases. This immediate response capability contributes to the overarching goal of reducing morbidity and mortality rates associated with extreme heat events and creates a public health system that is more resilient and prepared for emerging challenges. 

The inclusion of ICD-10 coding education into graduate medical education funded by CMS aligns with the precedent set by the Pandemic and All Hazards Preparedness Act (PAHPA), emphasizing the importance of preparedness and response to public health emergencies. Similarly, drawing inspiration from the Health Information Technology for Economic and Clinical Health Act (HITECH Act), which promotes the adoption of electronic health records (EHR) systems, presents an opportunity to modernize medical education and ensure the seamless integration of climate-related health considerations. This collaborative and forward-thinking approach recognizes the interconnectedness of health and climate, offering a model that can be applied to various health challenges. Integrating mandates from PAHPA and the HITECH Act serves as a policy precedent, guiding the healthcare system toward a more adaptive and proactive stance in addressing climate change impacts on health.

Conversely, the consequences of inaction on the health impacts of extreme heat extend beyond immediate health concerns. They permeate through the fabric of society, widening health disparities, compromising the accuracy of health data, and undermining emergency response preparedness. Addressing these challenges requires a proactive and comprehensive approach to ensure the well-being of communities, especially those most vulnerable to the effects of extreme heat.

Plan of Action

The following recommendations aim to facilitate public health preparedness for extreme heat events through enhancements in medical education, strategic measures within the Department of Health and Human Services (HHS), and fostering interagency collaboration.

Recommendation 1a. Integrate extreme heat training into the GME curriculum. 

Integrating modules on extreme heat-related health impacts and accurate ICD-10 coding into medical education curricula is essential for preparing future healthcare professionals to address the challenges posed by climate change. This initiative will ensure that medical students receive comprehensive training on identifying, treating, and documenting extreme heat-related health cases. Sec. 304. Core Education and Training of the PAHPA provides policy precedent to develop foundational health and medical response curricula and training materials by modifying relevant existing programs to enhance responses to public health emergencies. Given the prominence of Medicare in funding medical residency training, policies that alter Medicare GME can affect the future physician supply and can be used to address identified healthcare workforce priorities related to extreme heat (Figure 2).

Figure 2: A model for comprehensive climate and medical education (adapted from Jowell et al. 2023)

Recommendation 1b. Collaborate with Veterans Health Administration Training Programs. 

Partnering with the Department of Veterans Affairs (VA) to extend climate-related health coding education to Veterans Health Administration (VHA) training programs will enhance the preparedness of healthcare professionals within the VHA system to manage and document extreme heat-related health cases among veteran populations.

Recommendation 2. Collaborate with the Agency for Healthcare Research and Quality (AHRQ) 

Establishing a collaborative research initiative with the Agency for Healthcare Research and Quality (AHRQ) will facilitate the in-depth exploration of accurate ICD-10 coding for extreme heat-related health cases. This should be accomplished through the following measures:

Establish joint task forces. CMS, NCHS, and AHRQ should establish joint research initiatives focused on improving ICD-10 coding accuracy for extreme heat-related health cases. This collaboration will involve identifying key research areas, allocating resources, and coordinating research activities. Personnel from each agency, including subject matter experts and researchers from the EPA, NOAA, and FEMA, will work together to conduct studies, analyze data, and publish findings. By conducting systematic reviews, developing standardized coding algorithms, and disseminating findings through AHRQ’s established communication channels, this initiative will improve coding practices and enhance healthcare system preparedness for extreme heat events.

Develop standardized coding algorithms. AHRQ, in collaboration with CMS and NCHS, will lead efforts to develop standardized coding algorithms for extreme heat-related health outcomes. This involves reviewing existing coding practices, identifying gaps and inconsistencies, and developing standardized algorithms to ensure consistent and accurate coding across healthcare settings. AHRQ researchers and coding experts will work closely with personnel from CMS and NCHS to draft, validate, and disseminate these algorithms.

Integrate into Continuous Quality Improvement (CQI) programs. Establish collaborative partnerships between the VA and other federal healthcare agencies, including CMS, HRSA, and DoD, to integrate education on ICD-10 coding for extreme heat-related health outcomes into CQI programs. Regularly assess the effectiveness of training initiatives and adjust based on feedback from healthcare providers. For example, CMS currently requires physicians to screen for the social determinants of health and could include level of climate and/or heat risk within that screening assessment.

Allocate resources. Each agency will allocate financial resources, staff time, and technical expertise to support collaborative activities. Budget allocations will be based on the scope and scale of specific initiatives, with funds earmarked for research, training, data sharing, and evaluation efforts. Additionally, research funding provided through PHSA Titles VII and VIII can support studies evaluating the effectiveness of educational interventions on climate-related health knowledge and practice behaviors among healthcare providers.

Recommendation 3. Leverage the HITECH Act and EHR.

Recommendation 4. Establish climate-resilient health system grants to incentivize state-level climate preparedness initiatives

HHS and OCCHE should create competitive grants for states that demonstrate proactive climate change adaptation efforts in healthcare. These agencies can encourage states to integrate climate considerations into their health plans by providing additional funding to states that prioritize climate resilience.

Within CMS, the Center for Medicare and Medicaid Innovation (CMMI) could help create and administer these grants related to climate preparedness initiatives. Given its focus on innovation and testing new approaches, CMMI could design grant programs aimed at incentivizing state-level climate resilience efforts in healthcare. Given its focus on addressing health disparities and promoting preventive care, the Bureau of Primary Health Care (BPHC) within HRSA could oversee grants aimed at integrating climate considerations into primary care settings and enhancing resilience among vulnerable populations.

Conclusion

These recommendations provide a comprehensive framework for HHS — particularly CMS, HRSA, and OCCHE— to bolster public health preparedness for the health impacts of extreme heat events. By leveraging funding mechanisms, incentives, and requirements, HHS can enhance health system preparedness, improve health provider knowledge, and optimize emergency response capabilities. These strategic measures encompass a range of actions, including establishing dedicated grant programs, incentivizing climate-competent healthcare providers, integrating climate-resilience metrics into quality measurement programs, and leveraging the HITECH Act to enhance ICD-10 coding education. Collaboration with other federal agencies further strengthens the coordinated response to the growing challenges posed by climate change-induced extreme heat events. By implementing these policy recommendations, HHS can effectively address the evolving landscape of climate change impacts on health and promote a more resilient and prepared healthcare system for the future.

This idea of merit originated from our Extreme Heat Ideas Challenge. Scientific and technical experts across disciplines worked with FAS to develop potential solutions in various realms: infrastructure and the built environment, workforce safety and development, public health, food security and resilience, emergency planning and response, and data indices. Review ideas to combat extreme heat here.

Requiring children to attend school when classroom temperatures are high is unsafe and reduces learning; yet closing schools for extreme heat has wide-ranging consequences for learning, safety, food access, and social determinants of health. Children are vulnerable to heat, and schooling is compulsory in the U.S. Families rely on schools for food, childcare, and safety. In order to protect the health and well-being of the nation’s children, the federal government must facilitate efforts to collect the data required to drive extreme heat mitigation and adaptive capacity, invest in more resilient infrastructure, provide guidance on preparedness and response, and establish enforceable temperature thresholds. To do this, federal agencies can take action through three paths of mitigation: data collection and collaboration, set policy, and investments. 

Challenge and Opportunity

Schools are on the forefront of heat-related disasters, and the impact extends beyond the hot days. Extreme heat threatens students’ health and academic achievement and causes rippling effects across the social determinants of health in terms of food access, caregiver employment, and future employment/income for students. Coordinated preparation is necessary to protect the health and well-being of children during extreme heat events.

School Infrastructure Failure

Many schools do not have adequate infrastructure to remain cool during extreme heat events. At the start of the 2023–2024 academic year, schools in multiple locations were already experiencing failure due to extreme heat and were closing or struggling to hold classes in sweltering classrooms. The Center for Climate Integrity identified a 39% increase from 1970 to 2025 in the number of school districts that will have more than 32 school days over 80°F (their temperature cutoff for needing air-conditioning to function). The Government Accountability Office found in 2020 that 41% of public school districts urgently need upgrades to HVAC systems in at least half of their buildings, totaling 36,000 buildings nationally. The National Center for Education Statistics’ (NCES) most recent survey of the Condition of America’s Public School Facilities (2012–2013 school year) found 30% of school buildings did not have adequate air-conditioning. The numbers correlate with the population of disadvantaged students: 34% of schools where at least 75% of students are eligible for free or reduced lunch, and only 25% of schools where less than 35% of students are eligible for free/reduced lunch. NCES’s School Pulse Panel, implemented to document schools’ response to COVID-19, is expanding to include other topics relevant to federal, state, and local decision-makers. The survey includes heat-adjacent questions on indoor air quality, air filtration, and HVAC upgrades, but does not currently document schools’ ability to respond to extreme heat. Schools that are not able to maintain cool temperatures during extreme heat events directly affect child health and safety, and have an upstream impact on health.

Impact on Child Health and Safety

When temperatures rise on school days, local districts must decide whether to remain open or close. Both decisions can affect children’s health and safety. If schools remain open, students may be exposed to uncomfortable and unsustainable high temperatures in rooms with inadequate ventilation. Teachers in New York State reported extreme temperatures up to 94℉ inside the classroom and children passing out during September 2023 heatwaves. Spending time in the schoolyard may only compound the problem. Unshaded playgrounds and asphalt quickly heat up and may be hotter than surrounding areas, with surface temperatures that can cause burns. Similar to neighborhood tree cover, shade on school playgrounds is correlated with income (more income, more shade), leading to a higher risk of heat exposure for low-income and historically marginalized students. Children are vulnerable to heat and may have trouble cooling down when their body temperatures rise. Returning to hot classrooms will not provide them with an opportunity to cool down.

If schools close, children who are unable to access school food may go hungry. Procedures exist to ensure the continuation of school food service during unanticipated school closures, but it is not clear how food service would function if the building is overheated during extreme heat events. In New York City, an assessment of public cooling centers identified that nearly half were in senior centers and not open to children. If schools do not have sufficient heat mitigation and are closed for heat, children from low-income households, who are at higher risk for food insecurity and less likely to have air conditioning at home, may be left hot and hungry.

While some state and local education departments have developed plans for responding to extreme heat on school days, the guidance, topics, and level of detail varies across states. Further, while the National Integrated Heat Health Information System (NIHHIS) and the Centers for Disease Control and Prevention (CDC) have identified children as an at-risk group during heat events, they do not offer specific information on how schools can prepare and respond. A comprehensive playbook that provides guidance on the many challenges schools may encounter during extreme heat, and how to keep children safe, would enhance schools’ ability to function. 

Impact on Learning and Social Determinants of Health

The cumulative impact on learning, income, and equity is large. When schools remain open, heat reduces student learning (a 1% reduction in learning for each 1℉ increase across the year). When schools close, children lose learning time. The nation experienced the rippling effects of school closures during the COVID-19 pandemic, when extended closures impacted the achievement gap, projected future earnings, and caregiver employment, particularly for women. Even five days of closure for snow days in a school year has been seen to reduce learning. The projected increase in the number of districts that experience more than 32 school days a year over 80℉ suggests the impact of heat on learning could be substantial, whether it is from school closure or from learning in overheated classrooms. 

The impact on learning disproportionately affects students in low-income districts, often correlated with race due to historic redlining, as these districts have fewer funds available for school improvement projects and are more likely to have school buildings that lack sufficient cooling mechanisms. These disproportionate impacts foster increasing academic and economic inequity between students in low- and high-income school districts.

Existing Response: Infrastructure

The federal government is aware of the infrastructure challenges and is funding green and gray infrastructure improvements through several programs. The Renew America’s Schools grants focus on funding infrastructure upgrades for K-12 schools. In the initial round of applications, need far exceeded available funds, with 236 Local Education Authorities submitting eligible requests totaling $1.62 billion. In response to the overwhelming need, the Department of Energy (DOE) more than doubled planned funding and awarded $178 million in grants. Through the American Rescue Plan, the Environmental Protection Agency (EPA) is providing technical assistance to help communities develop plans to develop cooling centers in schools. Through the Inflation Reduction Act, EPA is helping schools develop and implement Indoor Air Quality management plans, which include maintenance of acceptable temperatures, with an anticipated $32 million in grant funding over five years. Multiple public and private programs have supported projects to increase green space and tree cover on school grounds, including grants from the U.S. Department of Agriculture (USDA) Forest Service and California Department of Forestry and Fire Protection (CAL FIRE).

These programs are substantial, but also substantially less than the demonstrated need. Embedding heat considerations into future school infrastructure projects and integrating explicit consideration of heat into existing projects would enable all of the activities supported through these grants to mitigate the impact of extreme heat concurrently. A coordinated effort could increase the impact of these funds. 

Existing Response: Temperature Standards

Though many states, school districts, or health departments maintain and enforce standards for minimum required temperatures in occupied buildings, relatively few have similar standards for maximum acceptable temperatures. The Occupational Safety and Health Administration (OSHA) recommends indoor temperatures stay between 68℉ and 76℉ and is currently developing a national standard for protecting workers during extreme heat. Occupational standards for maximum indoor temperature exist in Oregon (80℉), Minnesota (77℉ to 86℉), and California (80℉ outdoors; indoors pending). As public schools are institutions where adults work and children, an at-risk group, are required to be present, a national standard on acceptable indoor temperatures should be developed to protect children’s health and learning. 

Plan of Action

Managing extreme heat in American public school systems requires urgent action. While education is primarily under the authority of the state governments, the mission of the federal government is to ensure educational excellence and equal access. Federal agencies can facilitate data collection and collaboration, set standards to maintain safety, provide guidelines for local education authorities to follow, and coordinate different actions at state level and act as a source of expertise for capacity building for state and local actors. Similar to the actions outlined in a recent memo on developing heat-resilient schools in California, the federal government should take preemptive action across the nation.

Collect Data and Collaborate. Federal agencies need to collaborate and collect data to better understand and drive mitigation efforts to prepare for extreme heat for schools. 

1. The U.S. Department of Education (ED) should join NIHHIS as a partnering agency to collaborate on heat preparation and mitigation strategies specifically for schools. 
2. The NCES should update a national inventory of school infrastructure to identify schools that will need upgrades or investments in infrastructure to mitigate heat based on climate prediction. 
3. ED should collaborate with EPA and/or National Oceanic and Atmospheric Administration (NOAA) to collect data about heat at indoor and outdoor school facilities so as to provide better guidance to schools and direct heat mitigation efforts (e.g., increasing shade or tree cover on playgrounds). Mechanisms for this could be through creating an optional reporting function of EPA’s School IAQ Assessment tool (see recommendation below), adding heat-related questions to NCES’s School Pulse Panel, or through NOAA heat-island mapping campaigns.
   • EPA should update its School IAQ Assessment and App to include heat-related information. This could include a checklist or questions related to extreme heat, including both before heat events (HVAC status, shade cover on school building and playground, plans for hot days, options for water/cooling for overheated students, and indicators of heat stress), and heat assessments on days at high temperatures (indoor temperature in classrooms, hallways, cafeteria, gym, and outdoor temperatures on playgrounds [air and surfaces], blacktop, and shaded areas). 
   • NCES should add heat-related questions to the School Pulse Panel survey to aid heat-mitigation efforts in the same way the survey was used for COVID-19 mitigation. There are existing questions related to indoor air quality, ventilation, and the state of HVAC systems. Similar questions should be added to collect data on indoor and outdoor temperatures in locations where students spend school time (classrooms, lunch room, playground) during hot months, use of building-wide or local air conditioning or fans to maintain temperature, and availability of cooling spaces if the whole building does not have air-conditioning.
4. ED should collaborate with state and local education authorities to collect data on school closures and absences during heat events to identify places where heat affects students’ ability to participate due to extreme heat and the reasons that students are absent during extreme heat events. Data on absences should be used to proactively target places where heat is having a larger impact on access to education. 

Set Policy. In order to prepare for future extreme heat events, federal agencies can take the following actions to set policy to expand the adaptive capacity of schools to protect U.S. educational employees and students:

1. Similar to required minimum indoor temperatures, OSHA should establish a standard that sets the maximum classroom indoor temperatures at which cooling action must be taken or classrooms must be closed. OSHA is already considering a heat standard for outdoor workers; OSHA can set standards for school employees that would also protect students learning in those conditions. 
2. The Federal Emergency Management Agency (FEMA) should define school infrastructure as failing on school days above 80℉ outdoor temperature in schools without air conditioning or indoor temperature above 80℉ in classrooms. FEMA can then apply mitigation measures if the school is determined to have infrastructure failure, including providing funding for infrastructure upgrades.
3. FEMA and other agencies that assess and predict hazard risk should explicitly consider schools’ capability to remain open and keep children safe during extreme heat events as part of their assessments. 
4. ED and the Department of Health and Human Services (HHS) should develop guidelines to protect students’ health, well-being, and learning during extreme heat events and include them in the Emergency Planning section of schoolsafety.gov guidance. This could include an updated and easily accessed, searchable, and centralized library of federal and state resources specifically tailored to heat stress in schools such as California’s EnvironScreen and US Climate Resilience Toolkit. This can expand the capacity of local and state actors and provide ongoing access to updates support. This also sets the stage for state governments to share resources and collaborate.
5. NIHHIS should add resources for schools in a “For Schools” drop-down section of the Planning and Preparing page on HEAT.gov.
6. USDA should develop a federal process to serve food in alternative locations when school buildings are overheated during extreme heat events, similar to New York State’s summer waiver allowing food service in alternate locations during heat events.

Invest in Schools. In order to prepare for and plan for future extreme heat events, EPA, the Consumer Product Safety Commission (CPSC), USDA, and the Department of Energy (DOE) can take the following actions to launch mitigation measures to improve the resilience of schools and alleviate the impact of heat on student and employee health:

1. Existing projects focused on school upgrades should integrate consideration of heat mitigation into their programs.
   • The Renew America’s Schools Grants and EPA’s Indoor Air Quality project should ensure that infrastructure upgrades they support for K-12 schools will also meet the needs of increasing temperatures. These projects already contribute substantial funding to projects that could affect heat mitigation. Explicitly planning for and investing in heat mitigation as part of those upgrades could reduce the need for additional upgrades to address heat.
   • The CPSC should update their Public Playground Safety Handbook to include a more comprehensive overview of designing thermally comfortable playgrounds. The National Program for Playground Safety developed a good example of this for the Standards Council of Canada with specific details about designing thermally safe playgrounds. Programs supporting schoolyard redesign projects should follow these guidelines.
2. Substantial funding needs to be allocated to invest in infrastructure, cooling technologies, retrofits, landscape, and other adaptive strategies to prepare for extreme heat. There needs to be investments in researching how much funding is needed and how to allocate that funding equitably. Data collection proposed above will help determine the scale of the need.
   • More funding should be made available through the Inflation Reduction Act to make schools prepared to operate during heat events as part of the tax credits and clean energy initiatives. 
   • More funding should be made available for green schoolyards to increase natural cooling. For example, the CAL FIRE Green Schoolyards grants to mitigate heat through tree planting programs should be funded nationally.
   • The EPA’s American Rescue Plan funding should be expanded to renovate schools to function as cooling centers, and major funding should be provided to implement upgrades nationally. 

Conclusion

Extreme heat is an urgent problem for schools. Opportunities exist across the federal government to protect our nation’s future by protecting our children. Federal agencies can best support state and local schools through three paths of mitigation: collect data and collaborate, set policy, and invest in schools. 

This idea of merit originated from our Extreme Heat Ideas Challenge. Scientific and technical experts across disciplines worked with FAS to develop potential solutions in various realms: infrastructure and the built environment, workforce safety and development, public health, food security and resilience, emergency planning and response, and data indices. Review ideas to combat extreme heat here.

While access to cooling is the most protective factor against extreme heat events, the U.S. Census lacks granular, residential data to determine who has access to air conditioning (AC). The addition of a question about household access to working AC to the Census American Community Survey, a nationally representative survey on the social, economic, housing, and demographic characteristics of the population, would have life-saving impacts.

This is especially essential as the U.S. is experiencing more frequent and intense extreme heat events, and extreme heat now kills more people than all other weather-related hazards. Many vulnerable demographics — including people who are elderly, low-income, African-American, socially isolated, as well as those with preexisting health conditions— are exposed to high temperatures within their homes. 

Better data on working AC infrastructure in American homes would improve how the federal government and its state and local partners target local social services and interventions, such as emergency responder deployment during high-heat events, as well as distribute federal assistance funds, such as the Weatherization Assistance Program (WAP), Low Income Home Energy Assistance Program (LIHEAP), and funding from the Inflation Reduction Act (IRA) along with the Bipartisan Infrastructure Law (BIL).

Challenge and Opportunity 

In 2019, the U.S. Census Bureau acknowledged the danger of heat by issuing the Community Resilience Estimates (CRE) for Heat. The CRE for Heat is a measure that combines 10 questions from the existing American Community Survey questions. The questions ask about:

1. Financial hardship 
2. Older residents living alone 
3. Crowding 
4. Whether the home is a mobile home, boat, or recreational vehicle
5. Employment status for those under 65 years old
6. Whether a resident has a disability
7. Whether a resident has health insurance 
8. Access to a vehicle
9. Connection via broadband internet access
10. Communication barriers

However, the CRE for Heat lacks a question about air conditioning, the most important protective factor. Indoor temperature regulation is essential for mitigating heat illness and death on extremely hot days – temperatures above 86°F indoors can easily become dangerous and deadly.

Currently, the best information on residential AC is provided by the biennial American Housing Survey (AHS). In 2019, the AHS reported that 8.8% (11.6 million households) of all U.S. housing units have no form of AC. However, this information has three significant weaknesses. First, the American Housing Survey is based on 2,000 homes sampled across a metropolitan area. The sampling process generates an average across high-, medium-, and low-income residents; therefore, it overestimates the presence of AC in lower-income households. American households with higher incomes are more likely to have access to AC: 92.2% of households with incomes greater than $100,000 have some form of AC, compared with 88.9% of households with incomes less than $30,000. Second, lower-income households may have broken AC systems or units and lack money for repairs, skewing collected data. Third, the AHS fails to consider how poverty constrains electricity consumption. Many lower-income households reduce or abstain from using their AC in fear of costly electricity bills that trigger shutoffs. For instance, a 2022 report found that nearly 20% of households earning less than $25,000 reported keeping their indoor temperatures at levels that felt unsafe for several months of the year. These three weaknesses of the AHS data underscore the need for fine-grained information on who has access to working AC, especially in lower-income households.

The U.S. Census American Community Survey (ACS), on the other hand, samples 3.5 million addresses every year in a nationally representative annual survey. The ACS asks about housing characteristics, costs, and conditions (including heating) but not about AC nationwide. The equivalent survey administered in the four Island Areas of Guam, the Commonwealth of the Northern Mariana Islands, the U.S. Virgin Islands, and American Samoa — known as the “Island Areas Census” — included an AC question until 2010. This is an important precedent for adding a similar question to all Census surveys and should expedite the process. However, adding the term “working” (or a similar word) to the air-conditioning question would enhance its ability to capture low-income homes with broken systems as well as households that cannot use their existing AC due to energy insecurity.

Former question on air-conditioning in the American Community Survey for U.S. Island Areas

Better Information for Better Distribution of LIHEAP and WAP Funding

In addition to helping emergency responders, city planners, and public health departments, information collected on the presence of working AC could help ensure that the Department of Health and Human Services (HHS) Low Income Heat Energy Assistance Program (LIHEAP) and Department of Energy’s (DOE) Weatherization Assistance Program (WAP) serve the most vulnerable residents.

LIHEAP, administered by the Office of Community Services (OCS) within the Administration for Children and Families (ACF), is designed to “assist low-income households, particularly those in the lowest incomes, that pay a high proportion of household income for home energy, primarily in meeting their home energy needs.” LIHEAP is a targeted block grant program whereby states distribute their funds across three programs that subsidize home energy heating or cooling costs; fund payment in crises; and support home weatherization (limited to 15% of funds unless a state requests a waiver to increase their percentage to 25%). The largest proportion of the funds subsidizes lower-income, vulnerable residents’ energy spending. While LIHEAP is an important federal program that impacted 7.1 million American households in 2023, only approximately 20% of eligible households received LIHEAP assistance, and the program is currently facing budget shortfalls of $2 billion.

By expanding cooling assistance, LIHEAP is being asked to do more with less: 24 of 50 states now include cooling assistance, and 9.8% of funds subsidized cooling costs. As extreme heat events become more frequent and severe and households become more energy insecure in the face of rising energy prices, more states will need to expand cooling assistance programs. Data on where households are most vulnerable — that is, those households without working AC or the financial ability to operate their AC — would enable targeted distribution of federal funds. Therefore, adding a Census question on household access to working AC would provide critical information to ensure LIHEAP funds serve the most vulnerable households. 

Unlike LIHEAP, WAP’s sole focus is weatherization. Many weatherization improvements that help in cold weather also improve indoor thermal comfort during warm summer months. These improvements include fixing broken AC; adding insulation in walls, attics, and crawlspaces; and replacing leaky, inoperable windows. Compared to LIHEAP, WAP serves a much smaller number of homes — 35,000 homes annually versus LIHEAP’s 7.1 million (as of FY2023). Knowing the number of individual households in a census tract in need of investments in heat resilience adaptation and air-conditioning would enable much more targeted delivery of limited federal resources. Further, DOE can use this information to predict future grid demand and enhance necessary resilience measures for hotter summers.

Plan of Action 

To save lives in the face of growing extreme heat, the Census should add a question about working AC to the American Community Survey. This could be executed as follows:

Recommendation 1. The Office of Community Services in the Administration for Children and Families (OCS ACF) requests the addition of a question about access to working AC at the census tract level to the American Community Survey. This would directly aid the LIHEAP program’s mandate to identify and serve vulnerable individuals, and benefit other programs like DOE’s WAP as well as programs authorized by the IRA and BIL. 

Recommendation 2. Legal staff in the Office of Management and Budget (OMB) and the Census Bureau review the proposal to determine whether it meets legislative requirements. 

Recommendation 3. After a successful legal review, OMB and the Census Bureau, in consultation with the Interagency Council on Statistical Policy Subcommittee for the American Community Survey, determine whether the request merits consideration.

Recommendation 4. Subject matter experts across relevant federal government programs (i.e. LIHEAP and WAP) and external institutions (housing experts, extreme heat experts, social vulnerability experts) identify ways to ask the question. The Census Bureau conducts interviews to determine which wording produces the most accurate results. Because a similar question (but lacking the term “working”) is used on the American Community Survey for Island Areas, this process may be expedited. A potential example of the new question is below:

Do you have working air air-conditioning?

• Yes, a central air conditioning system (includes split-type)
• Yes, 1 individual room unit
• Yes, 2 or more individual room units
• No, my air conditioning system is non-functional or broken
• No, I cannot afford to run my air-conditioning system
• No, I do not have any air-conditioning system

Recommendation 5. The Census Bureau solicits public comment on the question and request OMB’s approval for field testing. 

Recommendation 6. The Census Bureau and ACF OCS review the results and decide whether to recommend adding the new survey question. Through the Federal Register Notice, the Census Bureau solicits public comment. Public comments inform the final decision that is made in consultation with the OMB and the Interagency Council on Statistical Policy Subcommittee on the American Community Survey.

Recommendation 7. If approved by OMB, the Census Bureau adds the question to its materials, and implementation begins at the start of the following calendar year (October). 

Recommendation 8. The Community Resilience Estimates (CRE) for Heat is updated with information about AC as it becomes available. This tool can be shared, along with refined guidance, with state-level administrators of programs like LIHEAP and WAP to target investments to the households most vulnerable to overheating and resulting heat illness and death. The CDC could integrate AC coverage within its existing syndromic surveillance programs on extreme heat, as an additional layer of “risk” for targeted public health deployment during high-heat events.

Conclusion 

The U.S. lacks fine-scaled data to determine whether households can access working AC systems/units and operate them during extreme heat events. Adding a question to the American Community Survey will provide life-saving information for emergency responders, social service providers, and city staff as extreme heat events become more frequent and intense. This fine-scaled information will also aid in distributing LIHEAP and WAP funding and increase the federal government’s ability to protect the most vulnerable residents from life-threatening extreme heat events.

This idea of merit originated from our Extreme Heat Ideas Challenge. Scientific and technical experts across disciplines worked with FAS to develop potential solutions in various realms: infrastructure and the built environment, workforce safety and development, public health, food security and resilience, emergency planning and response, and data indices. Review ideas to combat extreme heat here.

The National Institutes of Health should create an Office of Infection-Associated Chronic Illness Research. Reporting directly to the NIH Director, the Office would provide a timely and urgently needed command center for prioritizing innovative research across a group of complex, chronic conditions that are all known to be downstream effects of viral and bacterial infections. These include Long Covid and many others. The Office of IACIR should champion transformative, catalytic research that cuts across multiple institutes and centers.

The Covid-19 pandemic has proven to be a massive disabling event that has shined a bright and historic light on infection-associated illnesses. As many as 1 in 5 adults develops a new health condition in the aftermath of Covid, and for many, the condition could be lifelong. This should not come as a surprise. For decades, millions of sufferers have experienced debilitating illness, gaslighting, misunderstanding, lack of insurance coverage, disability, and no FDA-approved treatment options. In alignment with President Biden’s National Research Action Plan for Long Covid, the Office should pursue a two-pronged approach that includes pioneering next-generation diagnostics while also fast-tracking patient-centered clinical trials for repurposed drugs. The Office would spur creation of a world in which all people with an infection-associated chronic illness have access to a timely diagnosis and effective treatments.

Challenge and Opportunity

The world faces a massive problem with long term disability due to the long-term effects of infections. The cost of Long Covid is estimated at $3.7 trillion over five years, according to Harvard University economist David Cutler. Within the United States, it is estimated that up to 23 million Americans currently have or have had Long Covid or similar complex, chronic conditions.

Long Covid is part of a family of infection-associated chronic illnesses. More than two-thirds of people with Long Covid develop moderate to severe dysautonomia, most commonly presenting as postural orthostatic tachycardia syndrome (POTS), a condition estimated to impact up to 3 million Americans prior to the pandemic. Dysautonomia symptoms, the result of a problem with the autonomic nervous system, include lightheadedness, palpitations, profound fatigue, exercise intolerance, cognitive impairment, gastrointestinal dysmotility and more. Similarly, about half of all Long Covid cases fit the criteria for myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). With two of the most common symptoms of ME/CFS being unrelenting exhaustion and brain fog. These symptoms are also seen in persistent Lyme disease. Patients with Long COVID, dysautonomia/POTS, ME/CFS or persistent Lyme disease often present with autoimmunity, small fiber neuropathy, gut dysbiosis, migraine, mast-cell activation syndrome (MCAS), Ehlers Danlos syndrome (EDS), and cranio-cervical instability (CCI).

While there appears to be significant shared pathophysiology and symptomatology between these diseases, progress in each of these diseases has been stymied because research has been siloed and underfunded. For instance, one analysis of NIH funding and disease burden showed that ME/CFS received just 7% of research dollars commensurate with disease burden, making it the most underfunded disease at NIH with known disability-adjusted life years data. Reaching parity with diseases of similar severity and prevalence would require a fourteen fold increase in ME/CFS.

Each condition is in its own silo for a different reason, making full coordination impossible until a new NIH office is established. For instance, Gulf War illness doesn’t have an NIH budget line item at all; it is studied through the Department of Defense’s medical research program. And while the NIH studies acute Lyme infections, the agency didn’t formally start studying “post-treatment Lyme disease syndrome” until 2023. For POTS, there is a lack of research showing quality of life disruptions for dysautonomia sufferers. This makes it impossible to quantify the gap in research funding given the disorder’s large economic burden. And for decades, ME/CFS research was hamstrung in part because it was housed in NIH’s poorly funded Office of Research on Women’s Health. In short, to adapt a line from Leo Tolstoy’s Anna Karenina, “Understood diseases are all alike; every misunderstood disease is misunderstood in its own way.”

Therefore, studying infection-related conditions all together, within one multidisciplinary NIH office, provides an unprecedented scientific opportunity to build on existing research and apply a comprehensive molecular biology approach toward unraveling how the body’s systems go awry in complex disorders. Given the urgent need to rapidly scale interventions, these diseases also provide an ideal opportunity to make immediate progress with clinical trials for repurposed drugs.

This synergistic approach is also the most efficient and cost-effective from a financial standpoint, because it creates economies of scale and reduces redundancies that result from researching each disease piecemeal, from their respective silos. Streamlining research under one roof would also eliminate red tape and bureaucratic inefficiencies, thus ensuring the type of low barriers to entry and high return on investment (ROI) that are necessary to attract private sector participation. Moreover, a plan to fast-track FDA approval of promising drug therapies would both incentivize pharmaceutical involvement and guarantee that patients receive life-changing treatments as quickly as possible.

ME/CFS is an often lifelong condition in which about half of all patients are disabled and cannot work full-time. The level of disability for ME/CFS has been compared to that of cancer, heart disease, and last-stage AIDS. POTS is also often a lifelong condition, with a majority of patients reporting symptoms staying the same or worsening over time. Health-related quality-of-life in POTS is worse than what is seen in diabetes, neoplasms, cardiovascular disease, COPD, HIV and chronic kidney disease. Less than half of adult POTS patients are employed, and of those who are able to work, POTS symptoms prevent a majority of them from working as many hours as they would like to work. More than half of college students with POTS drop out of college due to the severity of their POTS symptoms. Given the high rate of POTS and ME/CFS with the Long Covid population, it follows that Long Covid patients can expect a similar prognosis. For all three diagnoses, there are as yet no treatments approved by the Food and Drug Administration. The landscape for drugs to treat these conditions is also undeveloped.

Given the magnitude of the challenge, a realistic budget for a Long Covid “moonshot” should be at least $1 billion per year for 10 years. Therefore, to incorporate all infection-associated chronic illnesses, the budget would need to be a great deal higher. This is an historic opportunity for the U.S. to lead with state-of-the art scientific research. A fully funded and comprehensive research program can tackle these diseases, alleviate suffering, and enable these individuals once again to pursue their dreams as productive members of society.

Several NIH offices created in recent years show us how to seize the current opportunity. In response to the most recent previous global pandemic, HIV/AIDS, the NIH created the Office of AIDS Research in 1988.

Later, the NIH established the Office of Women’s Health Research in 1990, after the Congressional Caucus for Women’s Issues asked the General Accounting Office to conduct an investigation into NIH’s implementation of guidelines for inclusion of women in medical research. The OWHR remedies longstanding inequities in which women were dramatically underrepresented in clinical research.

More recently, in 2023, the NIH launched its Office of Autoimmune Research. The office was originally proposed by then-Senator Joe Biden in 1999. In 2022, the National Academy of Sciences, Engineering, and Medicine held a research symposium, and issued a conclusive report, outlining five options for how to elevate federal research on autoimmune disease. 

One of those called for the establishment of the Office, situated within the Office of the Director. The authors noted the benefits of that high-level placement, including elevated visibility, sustained leadership, and becoming a clear focal point for intramural, extramural, training, and outreach activities. Placing it close to the NIH Director “may provide many of the benefits of a new Institute…with fewer bureaucratic costs or controversies,”they wrote.

On June 29-30, 2023, NASEM held a similar symposium to begin establishing a common research agenda for infection-associated chronic illnesses. The creation of the new Office of IACIR should organically flow out of this past summer’s NASEM meeting, just as the Office of Autoimmune Research did from the 2022 meeting.

Last year’s NASEM symposium was a watershed moment in the history of chronic illness patient advocacy movements, which for decades had effectively been voices in the wilderness. The nation’s most esteemed scientific body had consolidated the foundational literature for each condition, identified the possibilities for common pathophysiology, and illuminated a path forward. This establishes a clear generational opportunity to solve a major set of disabling conditions globally, and positions American institutions to lead in pioneering these breakthroughs.

Plan of Action

Working with champions in Congress, a select group of Administration officials – across Office of Science and Technology Policy, Domestic Policy Council, NIH, and the HHS Assistant Secretary for Health – would serve as executive sponsors and provide oversight.

Each of these primary stakeholders should take responsibility for the following steps in executing this proposal.

Clearly state the goals of the office and its NIH-wide responsibilities.

Since this research must span neurology, immunology, cardiology, pulmonology, virology, and other fields to encompass the multi-system impact of these illnesses, the Office must have a clearly-defined mission and authority to integrate work across multiple NIH institutes.

The key functions of the Office should include:

• Evangelize the concept of infection-associated chronic illnesses to the public, health providers, and researchers and administrators inside NIH
• Ensure that NIH and health systems are responsive to long-term sequelae of current and future pandemics
• Serve as a convener for industry, disease organizations, patient advocates, and patients across IACIs to set research priorities and design studies
• Embrace a spirit of co-producing research with patients, acknowledging the wisdom that those with lived experience bring to the scientific enterprise,
• Advance state-of-the-art IACI research focusing on biomarkers, root causes, and therapeutic targets in collaboration with patient communities
• Hold budgetary authority to fund and coordinate IACI research across all Institutes
• Identify and validate common biomarkers and therapeutic targets across conditions
• Collaborate with other U.S. government agencies (FDA, CDC, SSA, AHRQ, PCORI, etc.), community groups, and global organizations to catalyze rapid diagnosis, effective treatment, and relevant disability services/supports for all IACI patients
• Advise Director of NIH, HHS, and other entities on IACI research. In particular, this Office should directly coordinate with HHS’s Office of Long Covid Research and Practice so that IACI research is synergistic with a cabinet-level champion
  

Identify leadership and staffing.

At minimum, the office would require robust staffing and could be funded through several avenues. 

To begin, the Office of IACIR’s authority could be inaugurated under the auspices of the NIH’s Common Fund. This is a highly attractive option because it wouldn’t require additional Congressional funding allocations. The fund creates a space where investigators across NIH institutes collaborate on innovative research in order to address high-priority challenges and make a broader impact on the scientific community. Among the Common Fund’s most successful initiatives is the Undiagnosed Diseases Network.

To best amplify its mission, the office should be placed within the Office of the Director. Importantly, we stipulate that the NIH Director leads this new Office in consultation with community stakeholders, who have decades of experience managing infection-associated chronic conditions.

Congress could also consider bicameral legislation to create this new NIH office. If passed, policymakers could consider taking approaches similar to those taken for AIDS and Alzheimer’s, which could mandate special oversight of this Office. AIDS legislation, for instance, requires NIH to submit a research plan directly to Congress. Alternatively, Congress should also use the authority of the Congressionally Directed Medical Research Program to support and oversee this Office.

Launch a comprehensive IACI research agenda.

The Office should create a high-level blueprint as well as a more detailed agenda with an implementation plan for carrying it out. Research projects should mirror the most recent findings and avenues for next steps discussed at the NASEM symposium.

Diagnostic research activities should include:

• Advanced central and peripheral nervous system analysis and imaging
• AI-based analysis of immune profiles and comprehensive panels
• Investigation of viral or bacterial persistence, microclotting/coagulation parameters, tissue pathology, and epigenetics

Clinical trial platforms should support state-of-the-art techniques including:

• Decentralized, multi-arm clinical trials with dynamic, adaptable design
• Cross-diagnosis research amongst IACIs with common co-morbidity
• More efficient testing of repurposed medications

Not only would these approaches incorporate best practices scientifically, but by combining multiple diseases into single studies, they would create economic efficiencies that would reduce costs overall and make it easier and more cost-effective to roll out treatments.

Scale it into an Institute.

Once the new Office becomes established in the NIH and has put “points on the board” with early successes in its first five years, leaders at NIH and in the Administration should evaluate how to develop it into a Center or Institute. Alternatively, Congress could pass further legislation to elevate it to the level of an Institute.

An Institute is likely the best vehicle to fully execute a true long-term high investment capable of curing these diseases. Given the economic and social burden of these diseases – and coupled with their historic neglect – an annual research budget measured in the billions of dollars may be required.

Conclusion

Throughout its history, the NIH has continually evolved to meet new and pressing challenges as scientific understanding has progressed. Globalization, microbial resistance, and climate change continue to upset the balance of the natural world, with unpredictable effects on the human population. It’s not a question of if – but rather when – the next global pandemic will occur. Every pandemic causes long-term health consequences. The research advanced by this Office would foster pandemic resilience against the types of global infectious threats that will become increasingly common in the modern world. At the same time, it would help address the large swath of disability from the trickle-down of chronic illnesses triggered by everyday community infections as well.

Just as the NIH Office of AIDS Research has made great strides against AIDS, a new Office of Infection-Associated Chronic Illness Research will turn the tide against Long Covid and its many cousins. By diagnosing, managing, treating and ultimately curing these conditions, this program will help many millions get their lives and careers back. As they rejoin the workforce and contribute to the economy, the returns generated by this Office will exceed its costs by many orders of magnitude.

Every day, the executive branch of the federal government makes transformative policy changes. When federal agencies need expert input, they look to advice from external experts and interested citizens through a series of public engagement mechanisms, from public meetings to public comment. Of these, only one mechanism allows the executive branch to actively source consensus-based public advice and for external experts to directly advise policymakers, the Federal Advisory Committee Act (FACA). And it’s a law many Americans have never heard of.

FACA enables agencies to create advisory committees

Enacted in 1972, FACA governs expert and public engagement with executive branch decision making. FACA articulates rules for the establishment, operation, and termination of advisory committees (AC), groups of experts that the federal agencies establish, manage, and use to provide external advice on key policy questions. At any given moment in time, there are ~1000 active ACs across the federal government making crucial recommendations to agency leaders.

At the Food and Drug Administration (FDA), FACA is essential to the workings of the agency’s regulatory engine and public health mission. The FDA uses its ACs to provide independent advice on medical products (drugs and devices), providing a unique window for experts and the public to comment on cutting-edge medical products in the approvals pipeline. ACs capture the headlines through their “yes” or “no” votes on product approval, raising spirits or breaking hearts. Industry takes notice: medical product sponsors spend months preparing for these meetings, supported by a boutique industry geared to help them “ace” their AC meetings.

ACs need to be reformed to build public trust in the FDA

While ACs are a crucial transparency measure for an agency like FDA that is currently grappling with declining public trust, the system has been repeatedly under fire. Recent controversies include FDA’s public overruling of AC recommendations against approval for hydrocodone, an opioid pain reliever, and aducanumab, an Alzheimer’s treatment. After aducanumab approval, several high-profile resignations exacerbated the trust-issues. What’s more, FDA’s use of ACs is in decline, with the percentage of new drugs reviewed by ACs decreasing by almost 10 times from 2010-2021. These actions are in direct conflict with current whole-of-government efforts to modernize regulatory review and expand meaningful participation in the regulatory decision making process. Advancing racial equity, opening up the scientific enterprise, and broadening public engagement in regulatory decisions will require transformative policy solutions for the FDA. 

To re-envision how the FDA and other federal agencies engage external scientific experts and the public to address critical challenges facing public health, FAS is diving deep into how FACA is put into action at the FDA. Over the next year, FAS will be engaging AC members on their experiences in service, understanding key evidence needs at the agency that a reformed AC system could better meet, and scoping necessary process, regulatory, and statutory changes to the AC system. This will build upon our previous efforts: FAS has participated in and provided public comment to many AC meetings and documented how ACs are slow to respond to emerging questions of regulatory concern in our ongoing work to address bias in medical innovation. FAS has also documented strategies to improve science advice for the executive branch, including FACA reform. We invite you to follow this work and join us in calling for reforms that strengthen trust in the FDA Advisory Committee system.

Calls for systematic reform are coming from leadership across the FDA, yet consensus does not yet exist on what those reforms should look like. From recommendations to get rid of voting requirements at meetings (already receiving Congressional scrutiny), to broadening membership, including to members with conflicts of interest, to increasing review timelines of sponsor materials before meetings, there is no shortage of ideas for what this new system could look like. Non-profit leaders and academic researchers have also started coming together to make recommendations that address FDA’s influence over Advisory Committee discussions and ongoing issues with agency leadership overruling the AC’s vote. There could also be clearer requirements for the FDA to respond to AC recommendations and make set public timelines for agency action. Twenty-five Attorneys General recently called on the FDA to release updates to its actions on pulse oximetry one year after the AC meeting. 

More broadly, the FDA can learn from other agencies with explicit policies guiding their public engagement, such as the Meaningful Involvement Policy at the Environmental Protection Agency. These FDA-specific recommendations build upon long-standing calls to reform FACA to reduce the administrative barriers that make it challenging to solicit expert advice when needed or lead some agencies to forgo processes that could invoke FACA altogether.

To improve patient care, it is essential to create a nimble, participatory, and transparent process that ensures regulated products will benefit the health of all Americans. AC reform will be essential to building the FDA’s capacity to address increasingly complex regulatory science challenges, from artificial intelligence, to real-world data, to emerging platform technologies, to health inequity, while also improving the federal government’s ability to more rapidly generate consensus-based science advice. FAS is excited to play our part in strengthening evidence-based policy by engaging in policy entrepreneurship to engage stakeholders, develop roadmaps, and advocate for change. 

Physical activity is one of the most powerful tools for promoting health and wellbeing. Movement is not only medicine—effective at treating a range of physical and mental health conditions—but it is also preventive medicine, because movement reduces the risk for many conditions ranging from cancer and heart disease to depression and Alzheimer’s disease. But rates of physical inactivity and sedentary behavior have remained high in the U.S. and worldwide for decades.

Engagement in physical activity is impacted by myriad factors that can be viewed from a social ecological perspective. This model views health and health behavior within the context of a complex interplay between different levels of influence, including individual, interpersonal, institutional, community, and policy levels. When it comes to healthy behavior such as physical activity, sustainable change is considered most likely when these levels of influence are aligned to support change. Every level of influence on physical activity within a social-ecological framework is directly or indirectly affected by federal policy, suggesting physical activity policy has the potential to bring about substantial changes in the physical activity habits of Americans. 

FIGURE 1. Adapted from Heise, L., Elisberg, M., & Gottemoeller, M. (1999)

Why are federal physical activity policies needed?

Physical inactivity is recognized as a public health issue, having widespread impacts on health, longevity, and even the economy. Similar to other public health issues over past decades such as sanitation and tobacco use, federal policies may be the best way to coordinate large-scale changes involving cooperation between diverse sectors, including health care, transportation, environment, education, workplace, and urban planning. An active society requires the infrastructure, environment, and resources that promote physical activity. Federal policies can meet those needs by improving access, providing funding, establishing regulations, and developing programs to empower all Americans to move more. Policies also play an important role in removing barriers to physical activity, such as financial constraints and lack of safe spaces to move, that contribute to health disparities. With such a variety of factors impacting active lifestyles, physical activity policies must have inter-agency involvement to be effective.

What physical activity initiatives exist currently?

Analysis of publicly available information revealed that there are a variety of initiatives currently in place at the federal level, across several departments and agencies, aimed at increasing physical activity levels in the U.S. Information about each initiative was evaluated for their correspondence with levels of the social-ecological model, as summarized in the table. Note that it is possible the search that was conducted did not identify every relevant effort, thus there could be additional initiatives that are not included below.

Given the large number of groups with the shared goal of increasing physical activity in the nation, a memorandum of understanding (MOU) may help to promote coordination of goals and implementation strategies.

These and other federal departments and agencies can coordinate action with state and local partners, for example in healthcare, business and industry, education, mass media, and faith-based settings, to implement physical activity policies. 

The CDC’s Active People, Healthy Nation initiative provides an example of this approach. This campaign, launched in 2020, has the goal of helping 27 million Americans become more physically active by 2027. By taking action steps focused on program delivery, partnership engagement, communication, training, and continuous monitoring and evaluation, the campaign seeks to help communities implement evidence-based strategies across sectors and settings to provide equitable and inclusive access to safe spaces for physical activity. According to our analysis, the strategies of the Active People, Healthy Nation initiative are aligned with the social-ecological model. The Physical Activity Policy Research and Evaluation Network, a research partner of the Active People, Healthy Nation initiative, provides an example of coordinating with partners in other sectors to promote physical activity. Through collaboration across sectors, the network brings together diverse partners to put into practice research on environments that maximize physical activity. The network includes work groups focused on equity and inclusion, parks and green space, rural active living, school wellness, transportation policy and planning, and business/industry.

The Biden-Harris Administration National Strategy on Hunger, Nutrition, and Health, announced in September 2022, also includes strategies that are consistent with a social-ecological model. The strategy outlines steps toward the goal of ending hunger and increasing healthy eating and physical activity by 2030 so that fewer Americans will experience diet-related diseases. Pillar 4 of the strategy is to “make it easier for people to be more physically active—in part by ensuring that everyone has access to safe places to be active—increase awareness of the benefits of physical activity, and conduct research on and measure physical activity.” The strategy specifies goals such as building environments that promote physical activity (e.g., connecting people to parks; promoting active transportation and land use policies to support physical activity) and includes a call to action for a whole-of-society response involving the private sector, state, local, and territory governments, schools, and workplaces.

The Congressional Physical Activity Caucus has been active in introducing legislation that can help realize the goals of the current physical activity initiatives. For example, in February 2023, Sen. Sherrod Brown (D-OH), co-chair of the Caucus, introduced the Promoting Physical Activity for Americans Act, a bill that would require the Department of Health and Human Services to continue issuing evidence-based physical-activity guidelines and detailed reports at least every 10 years, including recommendations for population subgroups (e.g., children or individuals with disabilities). In addition, members of the Caucus, along with other members of congress, reintroduced the bipartisan, bicameral Personal Health Investment Today (PHIT) Act in March 2023. This legislation seeks to encourage physical activity by allowing Americans to use a portion of the money saved in their pre-tax health savings account (HSA) and flexible spending account (FSA) toward qualified sports and fitness purchases, such as gym memberships, fitness equipment, physical exercise or activity programs and youth sports league fees. The bill would also allow a medical care tax deduction for up to $1,000 ($2,000 for a joint return or a head of household) of qualified sports and fitness expenses per year.

What progress has been made?

There are signs that some of the national campaigns are leading to changes at other levels of society. For example, 46 cities, towns, and states have passed an Active People, Healthy Nation Proclamation as of September 2023. According to the State Routes Partnership, which develops “report cards” for states based on their policies supporting walking, bicycling, and active kids and communities, many states have shown movement in their policies between 2020 and 2022, such as implementing new policies to support walking and biking and increasing state funding for active transportation. However, more time is needed to determine the extent to which recent initiatives are helping to create a more active country, since most were initiated in the past two or three years. Predating the current initiatives, the overall physical activity level of Americans increased from 2008 to 2018, but there has been little change since that time, and only about one-quarter of adults meet the physical activity guidelines established by the CDC.

Clearly, there is a critical need for concerted effort to implement the strategies outlined in current physical activity initiatives so that national policies have the intended impacts on communities and on individuals. Leveraging provisions in existing legislation related to the social-ecological model of physical activity promotion will also help with implementation. For example, title III-D of the Older Americans Act supports healthy lifestyles and promotes healthy behaviors amongst older adults (age 60 and older), providing funding for evidence-based programs that have been proven to improve health and well-being and reduce disease and injury. Physical activity programs are prime candidates for such funding. In addition, programs under the 2021 Bipartisan Infrastructure Law and the 2022 Inflation Reduction Act are helping to change the current car-dependent transportation network, providing healthier and more sustainable transportation options, including walking, biking, and using public transportation, and are providing investments in environmental programs to improve public health and reduce pollution. For example, states can use funds from the Highway Safety Improvement Program for bicycle and pedestrian highway safety improvement projects, and funding is available through the Carbon Reduction Program for programs that help reduce dependence on single-occupancy vehicles, such as public transportation projects and the construction, planning, and design of facilities for pedestrians, bicyclists, and other non-motorized forms of transportation.

Partnering with non-governmental groups working towards common goals, such as the Physical Activity Alliance, can also help with implementation. The Alliance’s National Physical Activity Plan is based on the socio-ecological model and includes recommendations for evidence-based actions for 10 societal sectors at the national, state, local and institutional levels, with a focus on making change at the community level. The plan shares many priorities with those of the Active People, Healthy Nation initiative, while also introducing new goals, such as establishing a CDC Office of Physical Activity and Health. 

With coordinated action based on established public health models, such as the social-ecological framework, federal policies can be successfully implemented to make the systemic changes that are needed to create a more active nation.

The work for this blog was undertaken before Dr. Dotson joined the Agency for Healthcare Research and Quality (AHRQ). Dr. Dotson is solely responsible for this blog post’s contents, findings, and conclusions, which do not necessarily represent the views of AHRQ. Readers should not interpret any statement as an official position of AHRQ or of the U.S. Department of Health and Human Services.

For over 10 years, physical inactivity has been recognized as a global pandemic with widespread health, economic, and social impacts. Despite the wealth of research support for movement as medicine, financial and environmental barriers limit the implementation of physical activity intervention and prevention efforts. The need to translate research findings into policies that promote physical activity has never been higher, as the aging population in the U.S. and worldwide is expected to increase the prevalence of chronic medical conditions, many of which can be prevented or treated with physical activity. Action at the federal and local level is needed to promote health across the lifespan through movement.

Research Clearly Shows the Benefits of Movement for Health

Movement is one of the most important keys to health. Exercise benefits heart health and physical functioning, such as muscle strength, flexibility, and balance. But many people are unaware that physical activity is closely tied to the health conditions they fear most. Of the top five health conditions that people reported being afraid of in a recent survey conducted by the Centers for Disease Control and Prevention (CDC), the risk for four—cancer, Alzheimer’s disease, heart disease, and stroke—is increased by physical inactivity. It’s not only physical health that is impacted by movement, but also mental health and other aspects of brain health. Research shows exercise is effective in treating and preventing mental health conditions such as depression and anxiety, rates of which have skyrocketed in recent years, now impacting nearly one-third of adults in the U.S. Physical fitness also directly impacts the brain itself, for example, by boosting its ability to regenerate after injury and improving memory and cognitive functioning. The scientific evidence is clear: Movement, whether through structured exercise or general physical activity in everyday life, has a major impact on the health of individuals and as a result, on the health of societies.

Movement Is Not Just about Weight, It’s about Overall Lifelong Health

There is increasing recognition that movement is important for more than weight loss, which was the primary focus in the past. Overall health and stress relief are often cited as motivations for exercise, in addition to weight loss and physical appearance. This shift in perspective reflects the growing scientific evidence that physical activity is essential for overall physical and mental health. Research also shows that physical activity is not only an important component of physical and mental health treatment, but it can also help prevent disease, injury, and disability and lower the risk for premature death. The focus on prevention is particularly important for conditions such as Alzheimer’s disease and other types of dementia that have no known cure. A prevention mindset requires a lifespan perspective, as physical activity and other healthy lifestyle behaviors such as good nutrition earlier in life impact health later in life.

Despite the Research, Americans Are Not Moving Enough

Even with so much data linking movement to better health outcomes, the U.S. is part of what has been described as a global pandemic of physical inactivity. Results of a national survey by the CDC published in 2022 found that 25.3% of Americans reported that outside of their regular job, they had not participated in any physical activity in the previous month, such as walking, golfing, or gardening. Rates of physical inactivity were even higher in Black and Hispanic adults, at 30% and 32%, respectively. Another survey highlighted rural-urban differences in the number of Americans who meet CDC physical activity guidelines that recommend ≥ 150 minutes per week of moderate-intensity aerobic exercise and ≥ 2 days per week of muscle-strengthening exercise. Respondents in large metropolitan areas were most active, yet only 27.8% met both aerobic and muscle strengthening guidelines. Even fewer people (16.1%) in non-metropolitan areas met the guidelines.

Why are so many Americans sedentary? The COVID-19 pandemic certainly exacerbated the problem; however, data from 2010 showed similar rates of physical inactivity, suggesting long-standing patterns of sedentary behavior in the country. Some of the barriers to physical activity are internal to the individual, such as lack of time, motivation, or energy. But other barriers are societal, at both the community and federal level. At the community level, barriers include transportation, affordability, lack of available programs, and limited access to high-quality facilities. Many of these barriers disproportionately impact communities of color and people with low income, who are more likely to live in environments that limit physical activity due to factors such as accessibility of parks, sidewalks, and recreation facilities; traffic; crime; and pollution. Action at the state and federal government level could address many of these environmental barriers, as well as financial barriers that limit access to exercise facilities and programs.

Physical Inactivity Takes a Toll on the Healthcare System and the Economy

Aside from a moral responsibility to promote the health of its citizens, the government has a financial stake in promoting movement in American society. According to recent analyses, inactive lifestyles cost the U.S. economy an estimated $28 billion each year due to medical expenses and lost productivity. Physical inactivity is directly related to the non-communicable diseases that place the highest burden on the economy, such as hypertension, heart disease, and obesity. In 2016, these types of modifiable risk factors comprised 27% of total healthcare spending. These costs are mostly driven by older adults, which highlights the increasing urgency to address physical inactivity as the population ages. Physical activity is also related to healthcare costs at an individual level, with savings ranging from 9-26.6% for physically active people, even after accounting for increased costs due to longevity and injuries related to physical activity. Analysis of 2012 data from the Agency for Healthcare Research and Quality’s Medical Expenditure Panel Survey (MEPS) found that each year, people who met World Health Organization aerobic exercise guidelines, which correspond with CDC guidelines, paid on average $2,500 less in healthcare expenses related to heart disease alone compared to people who did not meet the recommended activity levels. Changes are needed at the federal, state, and local level to promote movement as medicine. If changes are not made in physical activity patterns by 2030, it is estimated that an additional $301.8 billion of direct healthcare costs will be incurred.

Government Agencies Can Play a Role in Better Promoting Physical Activity Programs

Promoting physical activity in the community requires education, resources, and removal of barriers in order for programs to have a broad reach to all citizens, including communities that are disproportionately impacted by the pandemic of physical inactivity. Integrated efforts from multiple agencies within the federal government is essential. 

Past initiatives have met with varying levels of success. For example, Let’s Move!, a campaign initiated by First Lady Michelle Obama in 2010, sought to address the problem of childhood obesity by increasing physical activity and healthy eating, among other strategies. The Food and Drug Administration, Department of Agriculture, Department of Health and Human Services including the Centers for Disease Control and Prevention, and Department of Interior were among the federal agencies that collaborated with state and local government, schools, advocacy groups, community-based organizations, and private sector companies. The program helped improve the healthy food landscape, increased opportunities for children to be more physically active, and supported healthier lifestyles at the community level. However, overall rates of childhood obesity remained constant or even increased in some age brackets since the program started, and there is no evidence of an overall increase in physical activity level in children and adolescents since that time.

More recently, the U.S. Office of Disease Prevention and Health Promotion’s Healthy People 2030 campaign established data-driven national objectives to improve the health and well-being of Americans. The campaign was led by the Federal Interagency Workgroup, which includes representatives across several federal agencies including the U.S. Department of Health and Human Services, the U.S. Department of Agriculture, and the U.S. Department of Education. One of the campaign’s leading health indicators—a small subset of high-priority objectives—is increasing the number of adults who meet current minimum guidelines for aerobic physical activity and muscle-strengthening activity from 25.2% in 2020 to 29.7% by 2030. There are also movement-related objectives focused on children and adolescents as well as older adults, for example:

• Reducing the proportion of proportion of adults who do no physical activity in their free time
• Increasing the proportion of children, adolescents, and adults who do enough aerobic physical activity, muscle-strengthening activity, or both
• Increasing the proportion of child care centers where children aged 3 to 5 years do at least 60 minutes of physical activity a day
• Increasing the proportion of adolescents and adults who walk or bike to get places
• Increasing the proportion of children and adolescents who play sports
• Increasing the proportion of older adults with physical or cognitive health problems who get physical activity
• Increasing the proportion of worksites that offer an employee physical activity program

Unfortunately, there is currently no evidence of improvement in any of these objectives. All of the objectives related to physical activity with available follow-up data either show little or no detectable change, or they are getting worse.

To make progress towards the physical activity goals established by the Healthy People 2030 campaign, it will be important to identify where breakdowns in communication and implementation may have occurred, whether it be between federal agencies, between federal and local organizations, or between local organizations and citizens. Challenges brought on by the COVID-19 pandemic (e.g., less movement outside of the house for people who now work from home) will also need to be addressed, with the recognition that many of these challenges will likely persist for years to come. Critically, financial barriers should be reduced in a variety of ways, including more expansive coverage by the Centers for Medicare & Medicaid Services for exercise interventions as well as exercise for prevention. Policies that reflect a recognition of movement as medicine have the potential to improve the physical and mental health of Americans and address health inequities, all while boosting the health of the economy.

Summary

Countries are facing dynamic, multidimensional, and interconnected crises. The pandemic, climate change, rising economic inequalities, food and energy insecurity, political polarization, increasing prevalence of youth mental and substance use disorders, and misinformation are converging, with enormous sociopolitical and economic consequences that are weakening democracies, corroding the social fabric of communities, and threatening social stability and national security. Globalization and digitalization are synchronizing, amplifying, and accelerating these crises globally by facilitating the rapid spread of disinformation through social media platforms, enabling the swift transmission of infectious diseases across borders, exacerbating environmental degradation through increased consumption and production, and intensifying economic inequalities as digital advancements reshape job markets and access to opportunities.

Systemic action is needed to address these interconnected threats to American well-being.

A pathway to addressing these issues lies in transitioning to a Well-Being Economy, one that better aligns and balances the interests of collective well-being and social prosperity with traditional economic and commercial interests. This paradigm shift encompasses a ‘Mental Wealth’ approach to national progress, recognizing that sustainable national prosperity encompasses more than just economic growth and instead elevates and integrates social prosperity and inclusivity with economic prosperity. To embark on this transformative journey, we propose establishing an American Mental Wealth Observatory, a translational research entity that will provide the capacity to quantify and track the nation’s Mental Wealth, generate the transdisciplinary science needed to empower decision makers to achieve multisystem resilience, social and economic stability, and sustainable, inclusive national prosperity.

Challenge and Opportunity

America is facing challenges that pose significant threats to economic security and social stability. Income and wealth inequalities have risen significantly over the last 40 years, with the top 10% of the population capturing 45.5% of the total income and 70.7% of the total wealth of the nation in 2020. Loneliness, isolation, and lack of connection are a public health crisis affecting nearly half of adults in the U.S. In addition to increasing the risk of premature mortality, loneliness is associated with a three-fold greater risk of dementia. 

Gun-related suicides and homicides have risen sharply over the last decade. Mental disorders are highly prevalent. Currently, more than 32% of adults and 47% of young people (18–29 years) report experiencing symptoms of anxiety and depression. The COVID-19 pandemic compounded the burden, with a 25–30% upsurge in the prevalence of depressive and anxiety disorders. America is experiencing a social deterioration that threatens its continued prosperity, as evidenced by escalating hate crimes, racial tensions, conflicts, and deepening political polarization. 

To reverse these alarming trends in America and globally, policymakers must first acknowledge that these problems are interconnected and cannot effectively be tackled in isolation. For example, despite the tireless efforts of prominent stakeholder groups and policymakers, the burden of mental disorders persists, with no substantial reduction in global burden since the 1990s. This lack of progress is evident even in high-income countries where investments in and access to mental health care have increased. 

Strengthening or reforming mental health systems, developing more effective models of care, addressing workforce capacity challenges, leveraging technology for scalability, and advancing pharmaceuticals are all vital for enhancing recovery rates among individuals grappling with mental health and substance use issues. However, policymakers must also better understand the root causes of these challenges so we can reshape the economic and social environments that give rise to common mental disorders.

Understanding and Addressing the Root Causes 

Prevention research and action often focus on understanding and addressing the social determinants of health and well-being. However, this approach lacks focus. For example, traditional analytic approaches have delivered an extensive array of social determinants of mental health and well-being, which are presented to policymakers as imperatives for investment. These include (but are not limited to):

• Adverse early life exposures (abuse and neglect)
• Substance misuse
• Domestic, family, and community violence
• Unemployment
• Poverty and inequality
• Poor education quality
• Homelessness
• Social disconnection
• Food insecurity
• Pollution
• Natural disasters and climate change

This practice is replicated across other public health and social challenges, such as obesity, child health and development, and specific infectious and chronic diseases. Long lists of social determinants lobbied for investment lead policymakers to conclude that nations simply can’t afford to invest sufficiently to solve these health and social challenges. 

However, it Is likely that many of these determinants and challenges are merely symptoms of a more systemic problem. Therefore, treating the ongoing symptoms only perpetuates a cycle of temporary relief, diverts resources away from nurturing innovation, and impedes genuine progress.

To create environments that foster mental health and well-being, where children can thrive and fulfill their potential, where people can pursue meaningful vocation and feel connected and supported to give back to communities, and where Americans can live a healthy, active, and purposeful life, policymakers must recognize human flourishing and prosperity of nations depends on a delicate balance of interconnected systems.

The Rise of Gross Domestic Product: An Imperfect Measure for Assessing the Success and Wealth of Nations

To understand the roots of our current challenges, we need to look at the history of the foundational economic metric, gross domestic product (GDP). While the concept of GDP had been established decades earlier, it was during a 1960 meeting of the Organization for Economic Co-operation and Development that economic growth became a primary ambition of nations. In the shadow of two world wars and the Great Depression, member countries pledged to achieve the highest sustainable economic growth, employment, efficiency, and development of the world economy as their top priority (Articles 1 & 2). 

GDP growth became the definitive measure of a government’s economic management and its people’s welfare. Over subsequent decades, economists and governments worldwide designed policies and implemented reforms aimed at maximizing economic efficiency and optimizing macroeconomic structures to ensure consistent GDP growth. The belief was that by optimizing the economic system, prosperity could be achieved for all, allowing governments to afford investments in other crucial areas. However, prioritizing the optimization of one system above all others can have unintended consequences, destabilizing interconnected systems and leading to a host of symptoms we currently recognize as the social determinants of health. 

As a result of the relentless focus on optimizing processes, streamlining resources, and maximizing worker productivity and output, our health, social, political, and environmental systems are fragile and deteriorating. By neglecting the necessary buffers, redundancies, and adaptive capacities that foster resilience, organizations and nations have unwittingly left themselves exposed to shocks and disruptions. Americans face a multitude of interconnected crises, which will profoundly impact life expectancy, healthy development and aging, social stability, individual and collective well-being, and our very ability to respond resiliently to global threats. Prioritizing economic growth has led to neglect and destabilization of other vital systems critical to human flourishing.

Shifting Paradigms: Building the Nation’s Mental Wealth 

The system of national accounts that underpins the calculation of GDP is a significant human achievement, providing a global standard for measuring economic activity. It has evolved over time to encompass a wider range of activities based on what is considered productive to an economy. As recently as 1993, finance was deemed “explicitly productive” and included in GDP. More recently, Biden-Harris Administration leaders have advanced guidance for accounting for ecosystem services in benefit-cost analyses for regulatory decision-making and a roadmap for natural capital inclusion in the nation’s economic accounting services. This shows the potential to expand what counts as beneficial to the American economy—and what should be measured as a part of economic growth.

While many alternative indices and indicators of well-being and national prosperity have been proposed, such as the genuine progress indicator, the vast majority of policy decisions and priorities remain focused on growing GDP. Further, these metrics often fail to recognize the inherent value of the system of national accounts that GDP is based on. To account for this, Mental Wealth is a measure that expands the inputs of GDP to include well-being indicators. In addition to economic production metrics, Mental Wealth includes both unpaid activities that contribute to the social fabric of nations and social investments that build community resilience. These unpaid activities (Figure 1, social contributions, C_s) include volunteering, caregiving, civic participation, environmental restoration, and stewardship, and are collectively called social production. Mental Wealth also includes the sum of investment in community infrastructure that enables engagement in socially productive activities (Figure 1, social investment, I_s). This more holistic indicator of national prosperity provides an opportunity to shift policy priorities towards greater balance between the economy and broader societal goals and is a measure of the strength of a Well-Being Economy. 

Figure 1.

Mental wealth is a more comprehensive measure of national prosperity that monetizes the value generated by a nation’s economic and social productivity.

Valuing social production also promotes a more inclusive narrative of a contributing life, and it helps to rebalance societal focus from individual self-interest to collective responsibilities. A recent report suggests that, in 2021, Americans contributed more than $2.293 trillion in social production, equating to 9.8% of GDP that year. Yet social production is significantly underestimated due to data gaps. More data collection is needed to analyze the extent and trends of social production, estimate the nation’s Mental Wealth, and assess the impact of policies on the balance between social and economic production.

Unlocking Policy Insights through Systems Modeling and Simulation

Systems modeling plays a vital role in the transition to a Well-Being Economy by providing an understanding of the complex interdependencies between economic, social, environmental, and health systems, and guiding policy actions. Systems modeling brings together expertise in mathematics, biostatistics, social science, psychology, economics, and more, with disparate datasets and best available evidence across multiple disciplines, to better understand which policies across which sectors will deliver the greatest benefits to the economy and society in balance. Simulation allows policymakers to anticipate the impacts of different policies, identify strategic leverage points, assess trade-offs and synergies, and make more informed decisions in pursuit of a Well-Being Economy. Forecasting and future projections are a long-standing staple activity of infectious disease epidemiologists, business and economic strategists, and government agencies such as the National Oceanic and Atmospheric Administration, geared towards preparing the nation for the economic realities of climate change.

Plan of Action 

An American Mental Wealth Observatory to Support Transition to a Well-Being Economy

Given the social deterioration that is threatening America’s resilience, stability, and sustainable economic prosperity, the federal government must systemically redress the imbalance by establishing a framework that privileges an inclusive, holistic, and balanced approach to development. The government should invest in an American Mental Wealth Observatory (Table 1) as critical infrastructure to guide this transition. The Observatory will report regularly on the strength of the Well-Being Economy as a part of economic reporting (see Table 1, Stream 1); generate the transdisciplinary science needed to inform systemic reforms and coordinated policies that optimize economic, environmental, health and social sectors in balance such as adding Mental Wealth to the system of national accounts (Streams 2–4); and engage in the communication and diplomacy needed to achieve national and international cooperation in transitioning to a Well-Being Economy (Streams 5–6).

This transformative endeavor demands the combined instruments of science, policy, politics, public resolve, social legislation, and international cooperation. It recognizes the interconnectedness of systems and the importance of a systemic and balanced approach to social and economic development in order to build equitable long-term resilience, a current federal interagency priority. The Observatory will make better use of available data from across multiple sectors to provide evidence-based analysis, guidance, and advice. The Observatory will bring together leading scientists (across disciplines of economics, social science, implementation science, psychology, mathematics, biostatistics, business, and complex systems science), policy experts, and industry partners through public-private partnerships to rapidly develop tools, technologies, and insights to inform policy and planning at national, state, and local levels. Importantly, the Observatory will also build coalitions between key cross-sectoral stakeholders and seek mandates for change at national and international levels. 

The American Mental Wealth Observatory should be chartered by the National Science and Technology Council, building off the work of the White House Report on Mental Health Research Priorities. Federal partners should include, at a minimum, the Department of Health and Human Services (HHS) Office of the Assistant Secretary for Health (OASH), specifically the Office of the Surgeon General (OSG) and Office of Disease Prevention and Health Promotion (ODPHP); the Substance Abuse and Mental Health Services Administration (SAMHSA); the Office of Management and Budget; the Council of Economic Advisors (CEA); and the Department of Commerce (DOC), alongside strong research capacity provided by the National Science Foundation (NSF) and the National Institutes of Health (NIH).

Operationalizing the American Mental Wealth Observatory will require an annual investment of $12 million from diverse sources, including government appropriations, private foundations, and philanthropy. This funding would be used to implement a comprehensive range of priority initiatives spanning the six streams of activity (Table 2) coordinated by the American Mental Wealth Observatory leadership. Acknowledging the critical role of brain capital in upholding America’s prosperity and security, this investment offers considerable returns for the American people.

Conclusion

America stands at a pivotal moment, facing the aftermath of a pandemic, a pressing crisis in youth mental and substance use disorders, and a growing sense of disconnection and loneliness. The fragility of our health, social, environmental, and political systems has come into sharp focus, and global threats of climate change and generative AI loom large. There is a growing sense that the current path is unsustainable. 

After six decades of optimizing the economic system for growth in GDP, Americans are reaching a tipping point where losses due to systemic fragility, disruption, instability, and civil unrest will outweigh the benefits. The United States government and private sector leaders must forge a new path. The models and approaches that guided us through the 20th century are ill-equipped to guide us through the challenges and threats of the 21st century.

This realization presents an extraordinary opportunity to transition to a Well-Being Economy and rebuild the Mental Wealth of the nations. An American Mental Wealth Observatory will provide the data and science capacity to help shape a new generation grounded in enlightened global citizenship, civic-mindedness, and human understanding and equipped with the cognitive, emotional, and social resources to address global challenges with unity, creativity, and resilience.

The University of Sydney’s Mental Wealth Initiative thanks the following organizations for their support in drafting this memo: FAS, OECD, Rice University’s Baker Institute for Public Policy, Boston University School of Public Health, the Brain Capital Alliance, and CSART.