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.

MPOX Resurgence Points to Potential Trouble Ahead

Earlier this year, as part of Community Access National Network’s (CANN’s) Monkeypox (now MPOX, previously MPV) Response and Monitoring Project, this blog cautioned against premature declarations of “victory”, urged a recognition of the likelihood MPOX would become endemic to the United States, and relayed anecdotal reports of new MPOX infections, both breakthrough and naive. CANN’s concerns were and remain centered on insufficient vaccine coverage and screening among highly marginalized, highly affected communities. Very specifically, due to anecdotal reports relayed to CANN in January 2023, heightened concern exists regarding provider knowledge, willingness to screen when presented with symptoms, and willingness of public health agencies to take community reports at face-value, rather than paternalistically denying the potential or possibility of new outbreaks or breakthrough cases.

Since then, a study out of France has identified a new cluster of MPOX cases, of which most had some level of previous vaccination, with more than half having had a “complete” vaccination cycle (several potential situation are qualified as “complete”, including a combination of childhood smallpox vaccination and “3rd generation” vaccination in 2022 as part of the 2022 MPOX outbreak). Of these, none were associated with a specific event – which indicates independent exposure among a social-sexual network and not an “index” event.

Similarly, a recent report from Howard Brown Health indicates there is a resurgence of MPOX virus cases in the Chicago area since April 17, 2023. Since April 17th, seven new cases have been identified in the area, representing a departure from the three months prior, when just one case of MPOX was identified in the area, and the highest case rate since November 2022. Patient data related to these cases have not been made available.

This increase in cases in the Chicago area is concerning, particularly as the city is about to see an influx of tourists for this year’s International Mr. Leather (IML) contest from May 25-29, 2023. The event brings in thousands of LGBTQ+ people from across the world for a variety of contest events, parties, and social gatherings where the populations most at risk of contracting MPOX—Black, Indigenous, and other People of Color (BIPOC) Same Gender Loving, Gay, and Men who have Sex with other Men (SGMSM) and Persons Living with HIV/AIDS (PLWHA)—will be in close contact with one another in crowded spaces often wearing little clothing, actively engaging in social-sexual environments, or otherwise increasing their sexual partners, often time anonymously, which will increase their possibility of being exposed to MPOX. To be clear, sexual activity in these spaces should be celebrated and effective interventions should be designed around how to empower fulfilling sexual activity while reducing risk of exposure.

After IML, Chicago will begin its 2023 Pride month, with the festivities to continue through the month of June—another prime opportunity for MPOX to spread from person to person.

In addition to the pressing concerns related to potential infections, this serves as an excellent example of why we should not be quick to call an end to public health emergencies. From almost the beginning of the 2022 MPOX outbreak, it was a disease that disproportionately impacted minority and underserved patient populations—those who were least likely to have access to or feel comfortable and safe seeking healthcare services that would lead to the identification, diagnosis, and treatment of MPOX, much less receive prophylactic vaccinations to reduce the risk of transmission.

Any time we call an end to a public health emergency where the disease primarily impacts underserved populations, we run the risk of de-prioritizing physician awareness of the disease. This is particularly true with MPOX, with which physicians outside of the infectious disease space were largely unfamiliar. Additionally, although vaccine supplies were increased by dividing the single subcutaneous dose into a two-dose intradermal delivery system, vaccine supplies were initially highly limited. Moreover, Black patients were the least likely to receive vaccination against MPOX, meaning that a priority population is still unprotected again a potential resurgence of the disease.

Another concern related to the spread of MPOX relates to the efficacy afforded by the vaccine over time. Few data are available about the continued protection of the MPOX vaccine, largely because this was one of the first use cases of the vaccine in a real-time setting with an adjusted dosing mechanism. If there are concerns about the efficacy waning, local health officials and event coordinators should make efforts to secure and provide vaccination services on-site at these very public, sex-positive events, and at a full single dose, rather than a two-dose series. While those vaccines may not provide immediate protection, they could serve as a prophylaxis against infection and transmission.

Ending public health emergencies almost always poses the risk of shifting attention away from populations where a disease may continue to flourish largely unchecked. We must remain vigilant and keep easily transmissible diseases at the front of our minds when providing services to those most at risk.

Advocates should remain engaged with their local communities, encourage ready responses from public health entities, and those same entities (contracted providers and state and community health departments) should be held accountable for being responsive, creative, and careful as community members and advocates identify potential cases and outbreaks.

A Pox in the Hen House: A Timeline of the MPV Outbreak and Topline Numbers

The first Monkeypox (MPV) diagnosis in the United States was reported on May 17th, 2022, though testing data indicate that the first test that returned a positive result was administered on May 10th. By July 3rd, 2022, there were over 1,500 reported cases in the United States.

By early July 2022, white Americans accounted for 47.6% of MPV diagnoses. But by July 24th, 2022, with 7,266 cumulative MPV diagnoses, Black Americans for the first time accounted for most positive diagnoses—32.6%—in the Centers for Disease Control and Prevention (CDC)’s Morbidity and Mortality Weekly Report (MMWR) Week 30. For all but 8 out of the following 28 weeks (ending in MMRW Week 5, 2023), Black Americans accounted for the highest percentage of positive test results. White Americans accounted for the majority of weekly positive diagnoses in only 7 weeks in that same period of time. On August 9th, 2022, the U.S. government declared MPV a Public Health Emergency (PHE). As of February 15th, 2023, there have been a total of 30,193 identified MPV diagnoses and 38 confirmed deaths as a result of MPV.

On May 22nd, 2022, the first JYNNEOS vaccines were administered as prophylaxis against MPV in the United States. Initial supplies of the MPV vaccine were low, however, and the U.S. Food and Drug Administration (FDA), to increase the available supply, issued an Emergency Use Authorization (EUA) on August 9th, 2022, allowing healthcare providers to administer the vaccine in a two-dose series using intradermal administration based on findings from a 2015 study that evaluated the efficacy of intradermal compared to subcutaneous vaccine administration. The total number of vaccines administered in a single week peaked in the week of August 7th – August 14th, 2022, with 108,895 total vaccines administered. By September 10th, 2022, the number of weekly second doses administered outstripped the number of first doses for the first time. This trend continued until the week ending on January 28th, 2023. The number of weekly vaccine administrations dropped precipitously in the week ending on October 1st, 2022. As of February 28th, 2023, a total of 1,196,047 doses of the MPV vaccine have been administered.

Access to and administration of the MPV JYNNEOS vaccine in the United States appear to have been highly correlated to race. In both First- and Second-Dose administration phases, white Americans were the most likely to be vaccinated, with 46.4% of first doses and 50.3% of second doses being administered to white Americans. White Americans received 47.9% of all vaccines administered. Despite the fact that Black Americans represented the highest percentage of diagnoses in the United States—33.7%—just 11.3% of first doses and 10.7% of second doses were administered to Black Americans, receiving just 11.1% of all vaccines administered. Among Hispanic Americans—who accounted for 29.6% of all MPV diagnoses in the United States.—just 20.7% of first doses, 19.6% of second doses, and 20.3% of total doses were administered to this population.

The first doses of TPOXX (tecovirimat) for the treatment of severe MPV disease were prescribed on May 28th, 2022. TPOXX administration is primarily reserved for patients with severe symptoms of the disease, who are immunocompromised, or who have other concurrent conditions that may present complications. As of January 25th, 2023, 6,832 patients were prescribed or treated with TPOXX.

On November 28th, 2022, the World Health Organization (WHO), to address racist and stigmatizing language associated with MPV recommended a global name change for the virus to “MPOX.” (Disclaimer: CANN continues to use “MPV” for its current project merely for the purpose of consistency in report language, but will begin using “MPOX” upon conclusion of the project)

On December 3rd, 2022, the U.S. government announced that it would not be renewing the PHE for MPV. The PHE officially expired on January 31st, 2023.

The Lessons We Applied, the Ones We Learned, and the Ones We Failed to Heed

One of the most successfully applied lessons was the implementation and utilization of existing testing, vaccination, and surveillance systems that were created in response to the COVID-19 outbreak.

Of the 57 reporting U.S. jurisdictions, 31 utilized their existing disease response, reporting, and tracking infrastructures to deploy in-depth disease MPV surveillance for the majority of the outbreak. The surveillance staff and protocols developed during the COVID-19 pandemic quickly pivoted to include MPV in their work, expanding their disease reporting and dashboards to include MPV case counts and demographics to better track the outbreak. Existing vaccine infrastructures including, but not limited to, staffing, scheduling systems, and drive-through delivery spots, were adapted, expanded, or repurposed to incorporate MPV vaccine supplies and dose administration.

Several jurisdictions truly set standards in their reporting, including the states of California, Colorado, Georgia, Kentucky, Massachusetts, Michigan, and New York City (which is reported separately from New York state). They provided excellent MPV diagnosis demographic breakdowns that included age groups, racial/ethnic minority categories, and gender reporting that included trans, non-binary, and other gender expression categories. These data helped to direct responses and better measure equitable outreach, education, and access to treatment and vaccines to the most affected communities.

To hear state and federal public health officials tell it, the U.S. response to the MPV outbreak has been a masterclass in how to effectively respond to and control an epidemic of a highly infectious disease. We’ve heard about how successful and swift the response to the outbreak was and, for a certain segment of the population, that may be true.

For many white, cisgender men who have sex with men (MSM), the outbreak has been little more than a month-long inconvenience; a blip that barely pinged their radars. The other side of that story, however, lies in the marginalized demographic groups.

For all of the successfully deployed public health systems, the truth is that MPV has been almost exclusively a disease that impacts the “others” in our society. From the beginning of the response, LGBTQ+ patients reported facing stigmatizing, discriminatory, and/or outright racist attitudes and behaviors on the part of medical professionals and administrative staff, particularly those seeking services outside of urban settings.

The unfortunate truth of healthcare provision is that every disease that is primarily acquired via sexual transmission comes with its own set of social, moral, and medical stigmata. In areas where self-reported levels of religiosity are high, patients seeking care often encounter negative behaviors and reactions from healthcare workers and administrative staff both inside and outside of the STD/STI/HIV spaces. While the Health Insurance Portability and Accountability Act (HIPAA) is supposed to protect patients, the reality on the ground is that healthcare workers can be woefully loose-lipped when it comes to sinking the social ships of the patients who live in small or close-knit communities. Moral judgments are made; stories get told; patients are admonished and made to feel ashamed—the impacts of these behaviors, both short- and long-term, can lead to patients refusing to seek testing or treatment until they feel they absolutely must, to avoid being honest with physicians about their symptoms, or to refuse to seek vaccinations or treatment services to help prevent infection or the further spread of the disease.

When it came to the delivery of MPV vaccines, the splitting of the JYNNEOS vaccine into two doses both created confusion about the efficacy of the vaccine and increased barriers to people wishing to complete the two-dose series. With any vaccine series, the fewer times patients need to schedule or show up for an appointment to receive their shots, the more likely they are to get fully vaccinated. Additionally, the decision to use intradermal vaccine administration as the delivery method—one of the more difficult delivery methods to correctly perform—resulted in reports of unsuccessful attempts at vaccinating individuals, particularly in patients with darker skin. Additional concerns, which were only marginally addressed by later guidance—and inconsistently applied across jurisdictions and providers—included discomfort and scarring, particularly among those prone to keloids. This meant that several patients—mostly Black and Brown—had to have their dose readministered at a later date creating yet another unnecessary barrier to becoming fully vaccinated.

Another factor that negatively impacted the MPV vaccine uptake was the exponential increase in self-reported hesitancy, skepticism, refusal, and beliefs in scientifically and factually inaccurate information about vaccines, in general. One of the worst consequences of the COVID-19 pandemic response was the massive influx of false information about how vaccines are developed and manufactured, what their contents are, their risks and side effects. Those challenges were compounded by misinformation, such as massive government/billionaire/Jewish/Chinese conspiracies to commit every farcical atrocity under the sun – including surreptitiously implanting microchips, giving people mutant magnetic properties, sterilization…you name it, some shadowy organization was allegedly doing it.

Despite these falsehoods being easily disproven within seconds, for many people the burden of proof has never been on the people making the false claims to prove their theories, but on the “experts” to disprove what the neighbor’s cousin’s sister’s oldest great-grand-nephew said about how the vaccine caused him to go blind.

Beyond those haphazardly manufactured and too easily consumed lies about vaccines, Black and Brown communities have historically legitimate reasons to distrust the government and medical authorities. Decades of actual and well-documented surreptitious sterilization, non-consensual experimentation, and abuse at the hands of systemically racist medical establishments have resulted in a generational and almost endemic distrust of public health measures, treatments, and authorities in minority communities. Efforts to combat generational hesitancy, avoidance, and distrust are slow-going, taking decades of work to undo or repair the harm that has been done to those communities. Add on top of that steady and relatively unchallenged social, digital, and visual media streams churning out anti-vax conspiracy theories, and that process becomes all the more difficult.

In Black and Hispanic men, as well as in communities of Persons Living With HIV/AIDS (PLWHA), MPV was largely allowed to run rampant, in no small part because of ineffective, lacking, or wholly absent educational, outreach, and vaccination strategies designed to reach those communities. While the work done by Drs. Demetre Daskalakis and David Holland in the Atlanta region and in a handful of other major cities was both highly effective and admirable, reality is that their campaign of taking education, testing, and vaccination drives into large-scale venues, gay cruises, fetish events, and sex clubs simply wasn’t scaled and replicated at the levels needed to truly reach those most in need of services.

One of the lessons that we need to learn from the MPV outbreak is that we need to do a much better job of delivering healthcare services outside of traditional settings and offering healthcare services outside of traditional office hours.

We already know that rural, minority, and LGBTQ+ populations face critical healthcare staffing and service provision shortfalls. The closure of rural clinics and hospitals, as well as healthcare providers who served primarily minority and/or lower-income patient populations, has exacerbated the negative outcomes and barriers that exist in areas with underfunded, little, or non-existent healthcare infrastructures. While the growth of COVID-19-related pop-up services and locations provided hope for improvement, the truth is that those investments were never designed to be long-term, nor were those investments or their implementation welcomed in more conservative parts of the country.

If we want to effectively serve underserved populations, we must think and act outside of the standalone brick-and-mortar healthcare paradigm. The MPV outbreak has shown us that we need to significantly increase local, state, and federal investments in mobile, pop-up, and telehealth healthcare delivery methods and models to meet people where they are. We also need to invest in more community-based providers, service models, and interventions. We need more public-private collaboration design – like the New York City Health Department partnering with the Sisters of Perpetual Indulgence for generating a community experiences feedback system.

Many of the most innovative and successful STD/STI/MPV interventions don’t require patients to come into a standard physical location to access testing, vaccination, and treatment services. They are set up in sex clubs and bars; they show up at concerts, parties, and other big events; they offer services in churches in communities where faith plays an important role in the lives of their patients; they build trust in, develop relationships with, and take mobile units into encampments of people experiencing homelessness. Essentially, they go out and meet patients where they are and when they’re available. A pox in the hen house has taught us one very valuable lesson: we need to fix these barriers sooner rather than later.

When MPV Became An STI

There comes a time, in the progression of any outbreak, where classifications change as we grow to understand more about the disease; a time when people—those who are living with the disease, those who have recovered, those who have never come in contact, and those who encounter the disease in a professional capacity—decide that we’re no longer in the midst of an “outbreak,” but that it has either ended or become endemic. This is where we appear to be with the Monkeypox (MPV) outbreak in the United States.

Since the beginning of the MPV outbreak in the United States, the overwhelming majority of cases have been transmitted via sexual contact (Centers for Disease Control and Prevention, 2022), primarily among men (CDC, 2023), particularly among Men who have Sex with Men (MSM) (Spicknall, et al., 2022), and disproportionately among Black Americans (CDC, 2023). The Community Access National Network (CANN) has been actively tracking reporting of MPV since September of 2022, and in that time, we have witnessed a troubling pattern emerging: the celebration of a “successful” control and suppression of a disease outbreak when the disease actually risks becoming endemic.

When we say that a disease has become endemic, it means that the disease is a constant presence in a certain population within a specific geographic region. In this case, we mean that MPV has relatively rapidly transitioned from a highly concerning outbreak to one that is being treated as a sexually transmitted infection (STI) similar to syphilis—one that is likely going to just “be around” no matter what we do. In the MSM communities that have been overwhelmingly impacted by MPV, members of those communities have already started treating it as such:

“We know it is how we are getting it, we just don’t know what to do about it because, based on lesion location alone, for example, a condom would not have prevented some of these exposures.”

This comment from an HIV activist and advocate living in New York City’s Hell’s Kitchen was related to me during a conversation about anecdotal reporting of disease outbreaks in the area.

“I know of at least a dozen men in the last couple of weeks who are experiencing minor infections despite being vaccinated or previously infected, and this week, I have seen several sex workers in the streets around here who are clearly experiencing full-blown infections, implying no vaccination.”

These statements raise several concerns, not the least of which is the availability of vaccine supplies and the distribution of said vaccine among priority populations. Additional concerns include what, if anything, can be done to curb the spread of MPV among MSM populations when vaccine supplies are unable to keep up with the demand if the virus is, in fact, becoming endemic. Will we simply decide, as a nation, that it’s just something we have to live with and move on with our lives?

One of the unfortunate truths about the availability and distribution of the MPV vaccine is that the populations who were the most disproportionately impacted by the virus were some of the least likely to receive the vaccine. As of January 19th, 2023, 48.3% of vaccines administered have been administered to White residents, despite the fact that just 22.4% of MPV cases have occurred in White residents. Comparatively, 34.7% of MPV cases have been identified in Hispanic residents, with just 23.4% of vaccines going to that population, and 27.4% of MPV cases have been identified in Black residents, with just 12.8% of vaccines going to that population.

Essentially, vaccination outreach efforts have simply not been sufficient to reach the populations most heavily impacted by the disease. While many factors may contribute to this outcome, the primary factor is that Black and Hispanic Americans simply do not have access to or receive the quantity and quality of care that White Americans enjoy—a fact that has been widely discussed but poorly addressed since the early 2000s (Collins, et al., 2002). From the quality of the facilities and services to the availability of service providers, White Americans are more likely to have access to not just more healthcare services but better services that meet their needs, whereas Black and Brown Americans are made to deal with longer wait times, under-resourced and understaffed facilities, and often lower quality care.

While there certainly have been efforts to reach into Black and Brown communities to deliver the same quantity and quality of healthcare services, healthcare workers come up against cultural barriers, including having to confront the generations of discrimination, mistreatment, and neglect that Black and Brown Americans have faced from healthcare professionals that make those populations less likely to seek healthcare services and trust providers.

These are the same barriers that people working in the HIV and STD/STI fields face when trying to provide services, and we still struggle to overcome those barriers today, although progress is being made, particularly when healthcare services are provided by members of those communities whom they know and trust. The same logic can and should apply to the delivery of vaccines, but the sad reality is that vaccine hesitancy and refusal continue to be high in Black and Brown communities (Maurer, Harris, & Uscher-Pines, 2014).

Beyond racial disparities, further concerns exist around barriers that impact the general MSM, Transgender, and Queer populations. One such barrier is the lack of culturally competent, sex-positive, and queer-centric care provision, even in areas as diverse as Hell’s Kitchen:

“A number of my friends, as well as myself, if I’m being honest, have reported that their physicians are both unaware that reinfection with MPV is possible and that infections can still occur in people who have been fully vaccinated, and as a result of their knowledge gap are refusing to test MPV lesions.” my friend continued. “There is a paucity of physicians who understand that LGBTQ+ people are going to continue to be sexually active, and this lack of cultural competence leads to our critical healthcare needs going unaddressed.”

What many Americans, and sadly many physicians and healthcare providers, fail to recognize is that healthcare is rarely a “one-size-fits-all” provision model. When we talk about diversity in patient populations, we’re should be talking about more than just racial diversity; we need to include sex and gender diversity, sexual orientation diversity, religious diversity, age diversity, and income diversity. Every patient, whether or not they are aware of them, is impacted by a wide variety of experiences related to their race, age, sex, gender, sexual orientation, and religious beliefs, and those experiences inform when, why, and how they access healthcare services. When providers are not aware of and responsive to those experiences—something that is truly difficult, particularly in areas where the patient-to-physician ratios are astronomically high—the quality of the services being provided suffers.

One way to approach this would be the better (and potentially mandated) incorporation and provision of STD/STI testing, prevention, and care in general practice settings. This would help to normalize the testing, identification, and treatment of STD/STIs in the general population and make seeking services for them less stigmatizing.

Another opportunity that is rarely explored is the provision of STI testing and vaccination services in sex-based venues, such as sex clubs, bath houses, and other venues where intimate contact between individuals is likely to occur. While some physicians—most notably Drs. David Holland and Demetre Daskalakis—have been actively pushing for and engaging in this type of health intervention, it is still a relatively rare type of intervention outside of large urban areas. Moreover, providing these types of services requires additional training for staff, particularly around situational and cultural awareness, as well as developing best practices for interacting with people in these types of settings without negatively impacting the atmosphere and customer bases of those settings.

If we are ever going to eradicate MPV in the United States, we are going to have to do a significantly better job of getting vaccine supplies to those most likely to be impacted and do a better job of overcoming the cultural and hesitancy barriers that exist in those communities. It also means that we have to do a better job of educating the MSM community about the virus and how it’s spread and doing so in a way that is both sex-positive and doesn’t rely upon fear-based tactics to scare people into getting vaccinated or into a monastic lifestyle.

More importantly, we need to come up with a way to incorporate anecdotal reporting of localized outbreaks of MPV in communities into our responses.  While the CDC and states may be taking victory laps on their “successful” MPV responses, the reality is that MPV outbreaks are still ongoing and, in many places, are doing so relatively unchecked with little awareness of the disease, its symptoms, its treatments, or how to prevent it.

While anecdotal evidence is just that—based on personal experience rather than hard data or research—we know that anecdotal evidence can be very important when it comes to identifying outbreaks early, particularly in minority and underserved communities. We need to develop a better way to incorporate those anecdotal reports into our investigations so that we can catch outbreaks early on rather than waiting until cases become widespread. Simply because official reports of cases show a decrease in new infections doesn’t mean that infections aren’t occurring in populations that are less likely to seek healthcare services. 

References

Centers for Disease Control and Prevention. (2022, December 08). How It Spreads. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for Emerging and Zoonotic Infectious Diseases: Division of High-Consequence Pathogens and Pathology. https://www.cdc.gov/poxvirus/monkeypox/if-sick/transmission.html

Centers for Disease Control and Prevention. (2023, January 18). Mpox Cases by Age and Gender, Race/Ethnicity, and Symptoms. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for Emerging and Zoonotic Infectious Diseases: Division of High-Consequence Pathogens and Pathology. https://www.cdc.gov/poxvirus/monkeypox/response/2022/demographics.html

Collins, K.S., Hughes, D.L., Doty, M.M., Ives, B.L., Edwards, J.N., & Tenney, K. (2002, March). DIVERSE COMMUNITIES, COMMON CONCERNS: ASSESSING HEALTH CARE QUALITY FOR MINORITY AMERICANS. The Commonwealth Fund. https://www.commonwealthfund.org/sites/default/files/documents/___media_files_publications_fund_report_2002_mar_diverse_communities__common_concerns__assessing_health_care_quality_for_minority_americans_collins_diversecommun_523_pdf.pdf

Maurer, J., Harris, K.M., & Uscher-Pines, L. (2014). Can routine offering of influenza vaccination in office-based settings reduce racial and ethnic disparities in adult influenza vaccination? Journal of general internal medicine, 29(12), 1624–1630. https://doi.org/10.1007/s11606-014-2965-z

Spicknall, I.H., Pollock, E.D., Clay, P.A., Oster, A.M., Charniga, K., Masters, N., Nakazawa, Y.J., Rainisch, G., Gundlapalli, A.V., & Grift, T.L. (2022, September 02). Modeling the Impact of Sexual Networks in the Transmission of Monkeypox virus Among Gay, Bisexual, and Other Men Who Have Sex With Men — United States, 2022. MMWR Weekly 71(35), 1131-1135. http://dx.doi.org/10.15585/mmwr.mm7135e2

Troubling Issues with HIV and Monkeypox Co-Infection

In the process of gathering state-level data on the incidence and demographics of Monkeypox (MPV) in the United States, we have come across several reports of people who have been diagnosed with MPV being co-infected with HIV. This worrisome trend indicates the need for targeted interventions, increased testing, and better communication about MPV in both patient and provider settings. 

The Community Access National Network (CANN) has launched an ambitious patient awareness campaign focused on the ongoing Monkeypox outbreak. Its ‘MPV Response Project for People Living with HIV’ seeks to gather data and issue reports covering MPV in the United States. The reports will focus on epidemiological trends, vaccine access and equity, state-level access to vaccine and antiviral supplies, HIV and MPV co-infection risk and reporting, and the latest news related to the outbreak. The project is broad in scope, and it will tackle the MPV outbreak in a way that is both data-focused and patient-centric. This month’s blog will focus on the disparities faced by people living with HIV/AIDS (PLWHA) and MPV. 

Data from the European Union, United Kingdom, and the United States suggest that between 28% and 51% of persons diagnosed with MPV are also living with HIV (Kuehn, 2022). According to estimates from the U.S. Department of Health and Human Services (HHS), an estimated 40% of people who have been diagnosed with MPV in the U.S. are also living with HIV (HIV [dot] gov, 2022). 

These data are considerably troublesome, particularly as research is beginning to show that PLWHA are likelier to have worse manifestations of MPV, require hospitalization more frequently than persons who are not living with HIV, and are likelier to die as a result of MPV co-infection. 

The underlying issue? 

We simply don’t have enough localized data (or really, financial resources) to create strategic responses. 

Currently, there are only three major jurisdictions in the U.S. that publicly report on HIV co-infection in MPV diagnoses—Michigan, North Carolina, and Rhode Island. This includes looking at the municipal jurisdictions that were specifically targeted for JYNNEOS vaccine supplies—Los Angeles, Chicago, New York City, and Houston—of which only Los Angeles’ reporting mentions HIV, and even then, only in relation to tecovirimat (TPOXX) prescribing data. 

So, what does this mean? 

Primarily, it means that we need to look at other sources in order to extrapolate co-infection data and use modeling to make educated guesses about where risks of co-infection are highest and how best to respond. 

There are currently only a handful of recent studies and surveys that focus on the United States outbreak of MPV from which we can glean these data: 

1. Curran, et al., published in September 2022, focused on a sample of 1,969 from eight jurisdictions:

• California

• Los Angeles

• San Francisco

• District of Columbia

• Georgia

• Illinois

• Chicago

• New York (excluding New York City) 

These jurisdictions were selected because they were independently funded for HIV surveillance and because they represented areas with the highest rates of MPV infections in the United States.

Curran, et al., found that 755 patients (38%) of that sample were co-infected with HIV. Of those patients, 94% had received HIV care in the past year, and 82% were virally suppressed (Curran, et al., 2022). 

2. Miller, et al., released in October 2022, looked at a significantly smaller sample size of just 57 patients who had been admitted to hospitals for severe manifestations of MPV.

Of this sample, 47 (82%) were co-infected with HIV, just four of whom (9%) were receiving antiretroviral therapy (ART) to treat their HIV prior to being diagnosed with MPV.

In terms of demographics, 68% of this sample were non-Hispanic Black Americans, which highlights disparities in HIV treatment in Black communities.

Prior to the release of this report, 12 of those patients died. MPV was listed either as the cause of death or a contributing factor in five of those deaths, six deaths remain under investigation to determine if MPV was the cause or a factor, and 1 death was deemed neither the cause nor a contributing factor (Miller, et al., 2022)

So, what can we learn from these relatively limited findings: 

1. We can determine that PLWHA, particularly Men who have Sex with Men (MSM), are at higher risk of contracting MPV than their heterosexual or women peers.

From the data we have reported in previous blog posts and the reports we’ve released, MPV infection rates are highest in three primary populations:

a. MSM
b. Black Americans
c. Hispanic Americans 

This should lead us to build strategies that focus on education of providers about properly identifying MPV lesions, testing, vaccination, and treatment of MPV in these communities.

An additional consideration is a lack of uniformity in gender identity reporting and data collections. As of current, while some jurisdictions are collecting gender identity data for MPV metrics (with many more getting a much better handle on the same data for HIV-related metrics), most are not. Similar to data collection and reporting in HIV prior to about 2016, MPV data does not typically distinguish between a person’s sex assigned at birth and gender identity, thus not adequately capturing data that would appropriately represent transgender communities.

In our gathering of state-level MPV reporting, we found that 22 of the 32 jurisdictions that provide gender demographic reporting either do not report on transgender patient populations, at all, or lump all non-cisgender patients into an “Other” category that fails to capture the diversity of patient populations and health outcomes between them.

Two examples of how this data delineation proves particularly relevant can be observed in the emergence of information regarding HIV prevalence among transgender women, particularly transgender women of color, and, more recently, transgender men have largely been ignored as a target population, likely because of stereotypes and assumptions as to the types of sexual activity transgender men might engage in and because transgender men are less likely to access care (Demmons, 2019). A recent study conducted by AIDS United highlighted how deeply flawed some of those assumptions are, with 35% of the transgender men responding to the survey with a self-reported HIV-positive status (AIDS United, 2022).

Further consideration should also be given to persons experiencing or at risk of experiencing homelessness. Miller, et al., found that 23% of the admitted patients were experiencing homelessness, which is likely indicative of a growing outbreak among a key population: PLWHA who may be housing insecure.

2. We don’t know what we don’t know.

One of the largest concerns, here, is that a majority of providers in the United States simply aren’t familiar enough with MPV to identify the disease consistently and correctly. Since the beginning of the epidemic, physicians have struggled to do so, with many misdiagnosing MPV as other diseases or infections, such as herpes or syphilis (Doucleff, 2022). This is because both of those sexually transmitted infections may manifest as skin lesions, similar to MPV. Misdiagnosis can lead to both the provision of ineffective treatments and result in the unchecked spread of MPV. This highlights the need for better provider education about MPV, its manifestations, and how to correctly differentiate between various diseases.

Additionally, while both Curran and Miller provide reporting on HIV co-infection in persons diagnosed with MPV, none of the listed jurisdictions from which they selected their sample groups provide public-facing reporting on HIV co-infection.

In the three jurisdictions we found with this reporting—Michigan, North Carolina, and Rhode Island—48.6% of MPV patients were co-infected in Michigan, 51.6% in North Carolina, and 27.7% in Rhode Island.

These findings fall relatively neatly into the HIV.gov reporting that 28% - 52% of MPV patients are likely to be co-infected with HIV.

However, these numbers could potentially be higher, particularly in major cities, such as Los Angeles, San Francisco, Chicago, New York, DC, Atlanta, and other areas that have higher populations of PLWHA and more areas and venues where PLWHA tend to congregate (e.g., bars, restaurants, sex clubs, steam rooms, et cetera).

3. Although overall diagnoses of MPV have fallen precipitously since August 2022, there is a significant risk of MPV becoming endemic in MSM, LGBTQ, and PLWHA populations.

This will require the development and wider distribution of better MPV-specific vaccines, better MPV-specific treatments, and better education and health communication about MPV and its transmissibility.

There seems to be a prevailing belief that the United States has weathered the worst of MPV. With declining positivity rates, there are some in the public health community who have decided that resources and attention would be better spent elsewhere—specifically, they’re looking at the tridemic of COVID-19, influenza, and respiratory syncytial virus (RSV) that is leaving hospitals once again scrambling for ICU beds. More accurately, it may be said that jurisdictions either cannot or will not expand the existing resources and personnel to allow for the continued surveillance of MPV. This essentially relegates the work of focusing on, addressing, and frankly caring about MPV to those working in HIV and infectious disease spaces.

Already, we are seeing this trend in data reporting: the state of Texas has removed MPV data entirely from its data dashboard, replacing it with Multisystem Inflammatory Syndrome in Children (MIS-C). This is indicative that a lack of financial and human resources, or the lack of political will or interest to increase those resources, will force state departments of health to reduce reporting on MPV in favor of diseases that impact populations they deem “more important” than MSM, Black, and Hispanic populations.

This, again, raises the concern that MPV will become a virus that is all but forgotten by the general public and general practitioners, as those who face the greatest impacts are already marginalized populations. The disparities faced by those bearing the brunt of MPV mirror those in new HIV diagnoses; it is incumbent upon us to respond evaluate and respond to those trends accordingly.

References

AIDS United. (2022, November). CHANGING THE GAME: Visibility of Trans Men in the South. Washington, DC: AIDS United: News and Resources. https://aidsunited.org/wp-content/uploads/2022/11/ChangingTheGame-FinalReport.pdf

Curran, K.G., Eberly, K., Russell, O.O., et al. (2022, September 09). HIV and Sexually Transmitted Infections Among Persons with Monkeypox — Eight U.S. Jurisdictions, May 17–July 22, 2022. MMWR Weekly 71(36), 1141-1147. http://dx.doi.org/10.15585/mmwr.mm7136a1

Demmons, S. (2019, July 10. Why are trans men invisible in HIV prevention & care? San Francisco, CA: San Francisco AIDS Foundation: Our Voices. https://www.sfaf.org/collections/beta/why-are-trans-men-invisible-in-hiv-prevention-care/

Doucleff, M. (2022, June 06). Monkeypox cases are going undetected or misdiagnosed. Washington, DC: National Public Radio: All Things Considered. https://www.npr.org/2022/06/06/1103372564/monkeypox-cases-are-going-undetected-or-misdiagnosed

HIV [dot] gov. (2022, November 30). mpox and People with HIV. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV.gov. https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/monkeypox

Kuehn, B. M. (2022, September 27). Interim Guidance for Monkeypox Among Patients With HIV. JAMA 328(12), 1173-1174. https://doi.org/10.1001/jama.2022.14727

Miller, M J., Cash-Goldwasser, S., Marx, G.E., Schrodt, C.A., Kimball, A., Padgett, K., Noe, R.S., McCormick, D.W., et. al. (2022, October 26). Severe Monkeypox in Hospitalized Patients — United States, August 10–October 10, 2022. MMWR ePub. http://dx.doi.org/10.15585/mmwr.mm7144e1