MPOX and Beyond: Reforming Emergency Response
The MPOX—a smallpox-related virus outbreak of 2022 served as a painful reminder that the United States remains alarmingly unprepared for public health emergencies. In the early stages of the outbreak, CANN highlighted the need for swift action and equitable responses to mitigate its spread and impact. However, mirroring the challenges experienced during previous crises, the response to MPOX was plagued by familiar, deeply concerning failures – sluggish testing rollouts, inadequate communication, and a failure to prioritize the needs of the most vulnerable. A recent Government Accountability Office (GAO) report examining the U.S. Department of Health and Human Services (HHS) underscores these recurring failings, emphasizing systemic and persistent weaknesses continue to jeopardize the nation’s response capabilities. New data from the Centers for Disease Control and Prevention (CDC) indicates a troubling resurgence of MPOX cases, with this year's infection numbers already close to double those seen in 2022. If we fail to heed the lessons learned from the MPOX response and the countless warnings that emerged throughout past outbreaks, we risk even greater health inequities and unnecessary suffering in the next inevitable crisis.
GAO Report Highlights Recurring Crisis Weaknesses
GAO’s report on the MPOX response offers a damning indictment of the nation's emergency preparedness, concluding that "persistent gaps" continue to undermine effective responses to public health crises. Among the most critical failures exposed by the report were severe delays in scaling up testing capacity and a lack of clear and consistent communication from HHS. The report emphasizes that "delays in testing capacity...limited the ability to understand the scope of the outbreak," hindering efforts to target resources and protective measures effectively. Similarly, the absence of a cohesive HHS communication strategy led to confusion and mistrust, ultimately slowing the rollout of vaccines, treatments, and preventative information needed to contain the spread. GAO's Mary Denigan-Macauley underscored this reality on the GAO Podcast: "So communication is key. Who's being infected by this?... They also needed to make sure that they knew exactly how much of the vaccine was coming, because we don't have an unlimited supply…Some officials said CDC's risk communication at the beginning of the mpox outbreak did not clearly identify those who were most at-risk for mpox (men who have sex with men) and the most common mode of transmission (sexual contact).”
The GAO report goes beyond the specific issues surrounding the MPOX response to stress the recurring nature of these problems. Notably, HHS faced challenges with delays in testing capacity, communication hurdles, and a lack of interagency coordination – problems that directly mirror those seen in previous public health emergencies. The GAO criticizes the lack of a centralized, coordinated approach: "HHS–as the designated lead for the federal public health and medical response to emergencies—does not have a coordinated, department-wide after-action program to identify and resolve recurring emergency response challenges." This lack of a cohesive strategy and failure to learn from previous outbreaks has grave implications, with the GAO warning that it "may affect the department’s ability to respond to future emergencies that could be more infectious and lethal than mpox."
Community Impacts
The systemic failures highlighted in the GAO report weren't merely abstract concepts; their consequences were acutely felt within affected communities. The podcast analysis we conducted amplified concerns related to the very same issues raised by the GAO. Speakers emphasized how access barriers and limited testing, particularly within marginalized communities, exacerbated the spread of MPOX. Additionally, the lack of clear and inclusive messaging perpetuated harmful stigma, causing significant delays in people seeking testing or treatment.
Failures during the MPOX response didn't affect everyone equally. CDC’s data reveals significant disparities in MPOX case rates along the lines of race, ethnicity, and gender. Hispanic/Latinx and Black/African American people were disproportionately impacted. Underscoring the urgency of addressing this disparity, the CDC highlighted the reality that: as of April 2023, 78% of Black persons and 75% of non-Hispanic American Indian or Alaska Native (AI/AN) persons remained unvaccinated against MPOX. The CDC further states, "Achieving equitable progress in JYNNEOS vaccination coverage will require substantial decreases in shortfalls among Black and AI/AN persons." These disparities underscore the inequities at the heart of the U.S. healthcare system and crisis response mechanisms. The MPOX outbreak is merely a symptom of this larger systemic failure, demonstrating how pre-existing disparities create vulnerabilities that worsen the impact of any public health emergency.
The Need for Reform
The GAO analysis goes beyond identifying the problems to offering concrete recommendations. To prevent these same systemic failures from hindering future public health responses, the GAO calls for two key changes:
Coordinated After-Action Program: The creation of a department-wide after-action program within HHS that would systematically and centrally analyze the lessons learned from each crisis. This program would ensure a comprehensive and coordinated understanding of recurring problems, essential to developing effective solutions.
Stakeholder Involvement: The GAO emphasizes the importance of including "relevant external stakeholders", in these after-action reviews. This inclusion of community voices, public health experts, and other critical partners would bring diverse insights into the analysis, ensuring that solutions are comprehensive and address the on-the-ground needs that can often be missed in a purely bureaucratic approach.
Key Takeaway: The GAO's analysis highlights that the failures during the MPOX outbreak aren't isolated incidents but symptoms of systemic weaknesses within the nation's emergency preparedness systems. Unless these weaknesses are addressed with coordinated reform, the nation remains vulnerable to ineffective and inequitable responses to future health threats.
Case Surge: A Warning Sign
The specter of MPOX looms large once again. As of this writing, MPOX cases in the U.S. have nearly doubled compared to the same period last year. This surge, particularly in regions like New York City, DC/Virginia, California, and Florida, underscores the continued vulnerability to MPOX outbreaks and highlights the urgent need to address the root causes of the persistent failures observed during the 2022 outbreak. Complacency in the face of this surge poses a danger, especially given the devastating outbreak in the Democratic Republic of Congo (DRC).
The DRC is experiencing its largest ever MPOX outbreak, with about 400 suspected cases reported each week – the majority in children. This outbreak presents a "triple threat": a deadlier strain of the virus circulating with a fatality rate of nearly 1 in 10, alongside the virus' spread into new areas, new populations (including sex workers), and in new ways – including sexually – and evading diagnostic tests. This crisis emphasizes the need for global cooperation and proactive solutions to prevent the spread of deadlier strains and future outbreaks.
Beyond MPOX: Systemic Failures Demand Systemic Change
On the heels of the COVID-19 pandemic, the MPOX outbreak of 2022 was further evidence that recurring failures and persistent inequities within the U.S. healthcare system leave the nation dangerously unprepared for public health emergencies. The GAO's critical report highlights a chronic reliance on reactive crisis management and failures in coordination, directly contributing to the ineffective MPOX response. While containing MPOX remains important, the nation cannot afford to repeat the mistakes of the past. The GAO's call for a coordinated after-action program and stakeholder inclusion offers a starting point for the reforms needed to address these systemic weaknesses.
These recommendations aren't abstract ideals but a roadmap to protect public health, especially for the most vulnerable in our society. In order to effect change, policymakers, healthcare organizations, and all stakeholders must prioritize the following for effective crisis preparedness:
Recommendation 1: Proactive Preparedness
The GAO report highlights a chronic reliance on reactive crisis management, condemning the tendency to delay action until a health threat has escalated. To break this dangerous cycle, we must advocate for a shift towards data-driven early detection and proactive response planning. Investing in innovative surveillance and data systems is critical. As Mary Denigan-Macauley states, "It really wasn't until the White House stepped in and took control that... it became a better response from the federal government." We cannot afford to wait for the next crisis to strike before mobilizing the resources needed for timely intervention. And we can’t afford for agencies such as HHS to wait for the White House to react to a crisis. Policymakers should consider carefully how to equip agencies and subject matter experts to respond and act in the best interest of the nation and humanity when next public health crisis emerges.
Recommendation 2: Community-Centered Response
Public health experts and CDC data illuminate how failing to center the needs of marginalized communities can devastate crisis response efforts. Stigma, lack of culturally-competent communication, and inadequate access to testing and treatment all exacerbated the disparate impact of MPOX. Preparedness plans, communication strategies, and resource allocation must prioritize the specific needs of those historically underserved if we hope to prevent the repetition of such failures.
Recommendation 3: Tackling Systemic Inequities
The MPOX case, like so many public health crises, underscores that systemic inequities are at the root of health disparities. Policy changes are urgently needed to address structural barriers (lack of access, discrimination, etc.) that worsen the impact of outbreaks on vulnerable populations. While the specifics of these changes require development and debate, the World Health Organization emphasizes the importance of global collaboration, investment in health systems particularly in underserved regions, and addressing stigma to ensure an equitable and effective response to future outbreaks.
This focus requires investment, policy reform, and sustained advocacy to dismantle the chronic failures that turn each new health threat into a disproportionate crisis for marginalized communities.
*Editor’s Note: This blog uses the term MPOX to be consistent with CDC and GAO terminology, but CANN's earlier policy materials used the previous designation MPV.
Assessing Responses to the US Monkeypox Outbreak
On August 4th, the Biden Administration declared a Public Health Emergency (PHE) regarding the ongoing Monkeypox outbreak in the United States and other countries where the virus is not endemic. Two days prior, the White House announced a National response Team, lead by the Federal Emergency Management Agency’s (FEMA) Robert Fenton and the U.S. Centers for Disease Control and Prevention (CDC) Dr. Demetre Daskalakis.
Bob Fenton holds some notoriety at FEMA, in part, because in 2005, while helping to coordinate on-the-ground responses to Hurricane Katrina’s devastation, he warned officials in Washington, D.C. that more needed to be done to meet the needs of the moment. Dr. Demetre Daskalakis has been credited with helping to curb and end a measles outbreak in 2018 and 2019 in New York City, prior to joining the CDC, but more aptly, his extraordinary efforts in 2014 to end the meningitis outbreak by bringing vaccines to bath houses, dressing in drag, and otherwise successfully bringing care to communities and people who needed it. With these histories, there’s no wondering why the White House selected these two professionals to lead this response. And having well-qualified leaders with excellent analytical skills and histories of putting success strategies into action aren’t necessarily going to be enough.
In a protracted opinion published to The New York Times, a former U.S. Food and Drug Administration (FDA) lead, Scott Gottlieb, accurately assessed a lack of political appetite to allocate more power and funding into public health. Specifically, Gottlieb argued the CDC has failed to compel a more coordinated response from state level partners, despite a very evident need to make these kinds of investments to shore up the country’s preparedness and ability to respond to health threats. The Biden Administration has instead suggested a need to make more agencies, which may be a way of trying to get around that lack of appetite and still achieve some measure of these investments. This type of move is, as Gottlieb described, a “very Washington response”, from both the short-sightedness of the legislator-politicians tasked with serving the best interests of the country’s populous and the Biden Administration’s fumbling response. He is correct in saying monkeypox, like other viruses foreign to the United States, may well become yet another public health failure. However, Gottlieb also argued the delayed or at least slow federal response to this monkeypox outbreak showed a need for the CDC to get out of the business of preventing illnesses other than infectious diseases and leave that work to other agencies. A gentle reminder, “Prevention” is in the name of the agency and adding layers of bureaucracy will not fix the fact that existing bureaucracy just…isn’t working as fast or efficiently as we need it to in order to respond to public health emergencies.
Those politically powerful voices, like Mr. Gottlieb’s, with influence must push the conversation with their audiences, especially political leadership, to draw a line in the sand in the interests of the nation. The more any party leadership is willing or even happy to promote inflammatory, conspiracy minded, and objectively false claims, especially those around issues of public health, just to win elections, the less power our federal government will have to respond to emergencies and the less states will be willing to cooperate when cooperation is needed.
Of the notable assessments Gottlieb offers, the most meaningful are drawing a potential definition of “public health failure” as monkeypox becoming an endemic virus to the United States in which persistent but low-level of the virus continues to circulate. Another is the potential of an “ascertainment” bias, but not the one most folks discussing this issue might jump to first – regarding communication around at-risk populations – but that this outbreak may seem like it “appeared out of nowhere”. Instead, it has likely been circulating undetected for some time and misdiagnosed or assumed as some other illness among health care professionals. Given the genomic distinctions discovered shortly after the initial detection of cases in Europe and North America, there’s good evidence to support that conclusion; a conclusion that lends great concern for that definition of “public health failure” to be accurate.
On the more technical analyses regarding this outbreak, a lack of precise, effective communication and a willingness for the public to accept complex realities has plagued federal, state, and local health agencies. Arguments between well-intentioned advocates, journalists, and public health professionals on effective messaging have enveloped the discussion around Monkeypox, flooding and fueling social media speculation and concerns of misinformation. Indeed, maliciously intended politicians, like Representative (GA-R) Marjorie Taylor Greene’s repeated statements (which will not be linked here as readers can Google search these things) equating the rare Monkeypox cases being reported among children are some evidence of sexual assault being perpetuated by men who have sex with men, were among the fears voiced on these platforms in June.
Public health agencies are looking to perform a balancing act in ensuring the resources, including vaccines and treatments, are reaching the most highly affected communities, while also educating and informing the public at large when addressing a unique outbreak where clinical information on transmission risks is limited, even as data is becoming more readily available. To be clear, the current global outbreak of monkeypox is concentrated among the social-sexual networks of men who have sex with men (including transgender men). Messaging and resource allocation are two very different things and should not be treated as one in the same. And educational messaging must be carefully tailored to its intended audience in order to not perpetuate stigma and the violence that can result from stigma. Indeed, issues of stigma, violence, and even public policy already suppressed investigation around a previous monkeypox outbreak in Nigeria, which may have better prepared the world for preventing this one. As Dr. MK Titanji pointed out, part of this previous disinvestment and lack of investigation is a direct result of the fact that half of the world’s countries criminalizing homosexuality are within the African continent, some of which are the only countries in the world where monkeypox is already endemic.
Critically important, stigma and other factors which perpetuate health disparities are already finding familiar lines in the United States. The CDC’s Morbidity and Mortality Report Weekly (MMWR), published on August 5th, found that even in the limited data available, "The percentage of cases among Black persons increased from 12% (29 of 248) during May 17–July 2 to 31%." Additionally, for those cases with full profiles, 41% of cases were among MSM living with HIV. The confounding factor to consider with that high rate of HIV prevalence among monkeypox cases is thanks to robust, though certainly not perfect, public health infrastructure specifically in response to HIV, people living with HIV/AIDS (PLWHA) may be more able to readily access health care professionals who are aware and educated about this monkeypox outbreak than other populations. The press conference immediately following the declaration of public health emergency had federal officials discussing a “vaccine sparing” strategy in order to facilitate reaching more people in need. However, given this concentration of case identification among PLWHA and that the available vaccines may not be as effective for this population, there’s good reason for patients and advocates to be concerned what dose sparring may mean for the most impacted population.
As this situation develops, we’re lucky to have the expertise the White House has engaged, who have readily sought out community feedback and engagement. As an example, Harold Philips, the Director of the Office of National AIDS Policy (ONAP), has had subsequent conversations with stakeholders in HIV to discuss leveraging the HIV infrastructure in order to help address this outbreak. And there’s much left unknown, including what exactly the risk is to children who may be in close, consistent, physical contact with people who have been diagnosed with monkeypox. Advocates are already coming together from across jurisdictions in an effort to appropriately influence public policy and program designs. Our efficacy in that work and in coordinating a response based in best practices of meaningful engagement means our private industry stakeholders must also support us in this work.
Additional reading which may be beneficial: From our friends over at the Center for Disaster Philanthropy; Monkeypox Briefing, including suggestions to funders in supporting advocacy and services to address the outbreak.
Post-PHE: Continuity in Care for Vulnerable Populations is Critical
On July 20th, the United States extended its existing declaration of Public Health Emergency (PHE) in response to the COVID-19 pandemic for 90 days. Previously, the PHE had been renewed 6 times under the previous and current administrations. The PHE declaration may be extended past October 20th, 2021, should the Secretary of Health and Human Services (HHS), Xavier Becerra, renew the declaration.
Pandemic response and relief funding from the federal government has come with strings attached in order to ensure those funds are directed toward those who need the help the most. Most of these strings operate as both “stick and carrot” and one of the more interesting “carrots” was the increase of federal dollars supporting state Medicaid programs for the trade-off of maintaining those Medicaid rolls, temporarily ceasing redetermination and reenrollment activities, allowing people to remain on Medicaid rolls through the PHE without having to go through the usual hoops of proving their eligibility on a more regular basis.
While the previous administration directed states to anticipate a return to usual work after the PHE, engaging in a massive redetermination effort inside of 6 months of the PHE ending, earlier this month, the Biden administration informed states that redetermination period would be extended to 12 months in order to avoid an artificial “bulge” of redeterminations and eligibility checks and, ultimately, a potential annual cycle of concentrated renewals in a short window of time. It’s important to remember, as we discuss Medicaid redetermination, rules vary by state and those disenrolled during redetermination are not necessarily ineligible, they may merely not have had an opportunity to respond to a request for information for a variety of reasons.
The guidance from the Biden Administration speaks directly to this issue, stating states should consider providing a “reasonable” amount of time for clients to provide additional information for redetermination. The administration’s idea of a reasonable amount of time is 30 days. Louisiana, as an example, typically only allows for 10 days from the date in which a paper letter has been mailed to a Medicaid recipient for that same recipient to respond. If the recipient is ill, needs to gather supporting evidence from multiple sources, the mail is slow, or any number of factors outside of their control, they may be unceremoniously disenrolled. A mass redetermination effort in a shortened period of time runs a significant risk of disenrolling otherwise eligible clients but for a process that leaves less than no room for delay or mistake. Indeed, a 2019 report from Louisiana’s Health department found that 85% of eligibility cases were closed for a lack of response to a request for information. Louisiana isn’t alone in these burdensome processes, which on the surface, appear to be aimed at discouraging residents from accessing Medicaid by way of process burden.
Overall, Medicaid and the Children’s Health Insurance Program (CHIP) saw an increase in enrollment starting in March 2020 and continuing today, though with a slower pace, after at least 2 years of decreasing enrollment, according to a Kaiser Family Foundation report. The same report shows Medicaid program enrollment has increased by about 20% - to about 81 million people – since February 2020 and expects many remain on Medicaid and CHIP rolls as a result of economic uncertainty and instability.
At the intersection of Medicaid, COVID, and economic uncertainty are vulnerable communities, experiencing some of the highest rates of viral hepatitis and HIV. A tertiary benefit of Medicaid’s maintenance of coverage through the public health emergency is those living with viral hepatitis and HIV have been able to more readily seek coverage and care. The problem is a complete lack of “warm hand-off” between Medicaid programs and other assistance programs clients could be significantly advantaged by. Particularly, because of the overlap in intersections of oppression and risk (which some more readily recognize as “social determinants of health”), AIDS Drug Assistance Programs, Ryan White services, and other support services (both publicly and privately funded) are critical tools in our public health safety net.
Tossed off the front burner of public health efforts, “Ending the HIV Epidemic” activities have still been chugging along throughout the COVID-19 crisis. The only other concurrent running pandemic didn’t suddenly go away because COVID-19 came rushing to the forefront of our public health efforts. One of the things these other support programs struggle the most with is ensuring the public (and even health department and hospital case managers) know these programs exist. State Medicaid programs, AIDS service organizations, Ryan White Clinics, and all other safety net programs should be coordinating for the shift in patient load across appropriate programs now. These planning activities should not wait until the midnight hour. For county run COVID-19 testing sites and vaccination sites should be providing information to every, single person seeking a vaccine about available programming to meet the needs of community members. From rental assistance to food pantries to ADAPs, programs already reaching communities and families are the most ideal for starting the process of maintain care after the PHE ends. That starts with passive efforts like brochures and should continue with more active efforts, like engaging a state’s 311 information system with linkage to care tools, and more active still by employing navigators at the Medicaid level to assist clients in finding services, should those clients find themselves ineligible post-PHE.
While we’re not there yet (and it make take significantly longer than any of us like due to a lack of equitable global vaccine access and variant development), advocates, states, service providers, and patients should be planning for what comes next when the PHE eventually comes to an end. We cannot afford to lose people to care at this critical juncture.