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
State-Level Monkeypox Surveillance Highlights State-Level Disparities
The Community Access National Network (CANN) launched an ambitious patient awareness campaign focused on the ongoing Monkeypox (MPV) 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 demographic disparities of the MPV outbreak, in general, and how those disparities vary at the state level.
The Centers for Disease Control and Prevention (CDC) has been providing considerably detailed data about MPV since the beginning of the outbreak in the U.S. in May 2022. From its MPV data portal, users can get a surprisingly robust amount of national-level data, one of the most striking of which is that Black Americans account for roughly 44% of all new MPV diagnoses across the U.S. (CDC, 2022).
As part of this MPV Response Project, CANN has decided to dig deeper by attempting to gather and analyze state-level epidemiological reporting where it exists. Our experience with state-level surveillance has shown that, while every state has some sort of surveillance system in place, no two systems are created equally. That is to say, while some states provide robust surveillance and reporting, other states—particularly those located in the American South and rural West—do not. More to the point, they likely cannot, as a result of underfunded and understaffed departments.
With this established, here is what we found:
As of October 28th, 2022:
28 states (AL, AR, CA, CO, CT, DE, FL, GA, IL, IN, KY, LA, MD, MA, MI, MN, MS, NJ, NM, NY, NC, RI, SC, TX, VA, WA, & WI) and the District of Columbia provide detailed demographic reporting on Monkeypox virus incidence on state-run websites. Both DE and FL omit race demographics from their reporting.
13 states (HI, ID, IA, KS, ME, MT, ND, OH, OR, SD, TN, UT, & WY) provide case counts, but no demographic breakdowns on state-run websites.
9 states (AK, AZ, MO, NE, NH, OK, PA, VT, & WV) and Puerto Rico report data directly to the CDC with no reporting on state-run websites.
1 state (NV) currently has a reporting dashboard under construction
It was heartening to see that roughly half of the jurisdictions in the U.S. (when including the U.S. territories) provided relatively thorough demographic reporting. This is likely because the data dashboard systems for reporting real-time disease surveillance were already purchased and in place as a result of tracking implemented to report COVID-19 data. 28 states provide some level of demographic reporting, and almost all of those states provide reporting on race.
There are still, however, significant gaps in these data. For example, Florida—one of the most racially diverse states in the U.S.—provides no demographics broken down by race; only by age. This lack of reporting presents a significant barrier to advocates, providers, and legislators because it homogenizes the results. If we are unable to see which populations are disproportionately impacted by MPV—or any disease, for that matter—then how are we to deliver data-driven public health interventions?
An additional issue exists with states’ decisions on how and where they account for Hispanic populations. While some states include “Hispanic” as a separate race category, others treat it as an “Ethnicity” that overlaps multiple race categories. While the latter classification is technically correct—there are Black and White persons who are also Hispanic—this creates a data issue that makes comparing data across states difficult.
In the states with state-level demographic reporting, Black Americans account for a majority of new MPV diagnoses in eleven states (AL, AR, GA, LA, MD, MI, MS, NC, SC, TN, & VA). Of those states, nine are located in the American South, all of which rank in the top ten states with the highest number of Black residents as a percentage of their states’ populations. As an example, in Alabama, Black Americans constitute 26.5% of the state’s population but account for 71% of MPV diagnoses (Alabama NEDSS Base System, 2022). Similarly, in Georgia, Black Americans constitute 32% of the state’s population but account for 77% of MPV diagnoses (Georgia Department of Public Health, 2022).
This is not the case, however, in every jurisdiction. In California, New Jersey, and New York state, Hispanic Americans represent the majority of new MPV diagnoses, as well as in New York City, which is counted as a separate jurisdiction from New York state. Additionally, in Colorado and Massachusetts, while Hispanic Americans do not account for the majority of new diagnoses, they do account for a significantly greater percentage of diagnoses than Black Americans living in those states. In Colorado, Hispanic Americans constitute for 22% of the state’s population but account for 34.8% of MPV diagnoses (Colorado Department of Public Health, 2022). Similarly, in Massachusetts, Hispanic Americans constitute 12.8% of the state’s population but account for 31% of MPV diagnoses (Massachusetts Department of Public Health, 2022).
Unfortunately, in the United States, case surveillance is set at the state level, with each state determining what diseases they track, how they track them, and how they report them. This system, while protected under the 10th Amendment, is more of a liability than an asset. By leaving these decisions in the hands of states, they are infinitely more subject to political machinations by anti-science legislators than were these decisions to be placed under the purview of the Department of Health and Human Services.
Further complicating the inefficiency of our nation’s myriad surveillance systems is that state departments of epidemiology and surveillance must be adequately funded to perform these duties—a feat that, at least at the state level, is becoming less likely given the political makeup of their legislatures. One of the unfortunate impacts of the COVID-19 pandemic’s stellar state-level reporting was that certain political factions have determined that disease surveillance is political, rather than factual; that the science is not to be trusted, because the science is “biased.”
An example of this occurred in West Virginia, in 2021, when state and local legislators, in a public hearing, informed Dr. Demetre Daskalakis, then Director of the Division of HIV/AIDS Prevention at the CDC, that they did not believe him when told that West Virginia’s outbreak of HIV among Persons Who Inject Drugs was worse than in New York City (Peace, 2021). In response to his assertion, the Kanawha County Commission demanded that Senator Joe Manchin submit a congressional inquiry with the CDC to question the validity of his statements (Raby, 2021). This was not an isolated incident; state legislators in Conservative-run states have consistently disregarded and even demonized basic scientific data reporting as if it were a conspiracy against them.
As a result of this increased, and yet paradoxically incurious, scrutiny of disease surveillance, some states are choosing to decrease or drastically cut funding to those departments. And the stark reality is that this trend is likely to get worse before competent heads prevail. In response to what members of one political party have consistently referred to as “government overreach,” at least 20 Conservative-run states used their 2021 legislative sessions to enact new laws that “…preclude the use of proven public health measures or more broadly constrain the authority of state and local health officials, and governors, in a public health crisis” (Vestal, 2021). This means that, even with targeted federal funds, state departments of health and local health officials may be constrained in what they can legally do at the state level. Worse still, many of those state legislators have created committees designed to identify “misspending”—a thinly veiled code for “work we find objectionable”—and to slash budgets to ensure that the “overreach” cannot be implemented, again.
What patients, providers, and advocates can do is reach out to their state and federal legislators to advocate for greater funding specifically for surveillance, and to request that those funds come with stipulations for how they can and cannot be used and when they must be disbursed, so that states do not allow those funds to languish in interest-bearing accounts rather than spending those funds. Additionally, readers can reach out to their states’ departments of health to request that they improve the availability or make available demographic data that are broken down into useful categories that can be turned into direct action to address any disparities these data may identify.
The quest to improve the quality of our data is going to require both federal standard setting and the funds to implement them. Let’s make it happen.
References
Alabama NEDSS Base System. (2022, November 01). What You Need to Know About Monkeypox in Alabama. Alabama Department of Public Health. https://tableau.adph.state.al.us/views/MPXFINALusingextractallsheets/MPXPublic?%3Adisplay_count=n&%3Aembed=y&%3AisGuestRedirectFromVizportal=y&%3Aorigin=viz_share_link&%3AshowAppBanner=false&%3AshowVizHome=n
Centers for Disease Control and Prevention. (2022, October 26). Monkeypox Cases by Age and Gender, Race/Ethnicity, and Symptom. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: Poxvirus: Monkeypox. https://www.cdc.gov/poxvirus/monkeypox/response/2022/demographics.html
Colorado Department of Public Health. (2022, October 26). Colorado Monkeypox Data. Colorado Department of Public Health: Diseases A to Z: Monkeypox. https://cdphe.colorado.gov/diseases-a-to-z/monkeypox
Georgia Department of Public Health. (2022, October 26). Georgia Monkeypox Situational Report – October 26, 2022. Georgia Department of Public Health: GA Monkeypox Outbreak Cases and Vaccination. https://dph.georgia.gov/document/document/mpx-situational-report-october-26-2022/download
Massachusetts Department of Public Health. (2022, October 27). Monkeypox Cases and People Vaccinated by Age, Sex and Race/Ethnicity. Massachusetts Department of Public Health: Bureau of Infectious Disease and Laboratory Sciences: Monkeypox. https://www.mass.gov/doc/weekly-report-monkeypox-cases-and-people-vaccinated-october-27-2022/download
Peace, L. (2021, February 11). The CDC says Kanawha County’s HIV outbreak is the most concerning in the United States. Mountain State Spotlight. https://mountainstatespotlight.org/2021/02/11/the-cdc-says-kanawha-countys-hiv-outbreak-is-the-most-concerning-in-the-united-states/
Raby, J. (2021, April 06). CDC inquiry sought on HIV outbreak in Kanawha County. The Parkersburg News & Sentinel. https://www.newsandsentinel.com/news/local-news/2021/04/cdc-inquiry-sought-on-hiv-outbreak-in-kanawha-county/
Vestal, C. (2021, July 29). New State Laws Hamstring Public Health Officials. The Pew Charitable Trusts. https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/07/29/new-state-laws-hamstring-public-health-officials
Navigating Monkeypox: Challenges Patients Face
The Community Access National Network (CANN) has launched an ambitious patient awareness campaign focused on the ongoing Monkeypox (MPV) 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.
One of the first things CANN discovered while seeking this data is that, as is the case with many relatively new outbreaks, what data are available are both disjointed and confusing for any patients and affected communities to try to navigate. While the U.S. Centers for Disease Control & Prevention (CDC) has done an admirable job in creating a data reporting center that is relatively timely in terms of updates and data availability, their data are only as good as the data they receive from states.
This has been a problem across numerous disease states for decades: state epidemiology departments and state and local departments of health across the United States are almost universally chronically underfunded, understaffed, poorly regulated, and frequently disorganized and disconnected from even state-level, much less federal-level, networks and reporting standards.
The issues include:
1.) A lack of federal reporting standards and duplicative reporting across funding opportunities makes gathering, interpreting, and reporting data about disease states, such as MPV, an arduous and frustrating task.
An example, out of 55 reporting jurisdictions in the United States, MPV vaccine administration data presented by the CDC only accounts for 48 of them. The jurisdictions that are not included—Arizona, the District of Columbia, Indiana, Mississippi, Montana, Nebraska, and Puerto Rico—represent some of the poorest, most underserved patient populations in the U.S. Another example is that, of the 527,818 first-dose vaccine administrations reported in the U.S., an astounding 44,192 (8.4%) had no accompanying racial demographic information included.
This issue extends beyond vaccine reporting. Because MPV diagnoses and testing information reporting requirements are not standardized, each state can (and does) provide vastly different reporting based upon local standards. An example of this is that the state of Alabama breaks reporting of race categories into “White,” “Black,” and “Other.” This is despite the fact that 18.7% of Alabama’s population is Hispanic and 6% is Asian. Apparently, other races need not apply? Other states, such as Alaska, report their data directly to the CDC and provide no epidemiological information specific to the state on their state websites.
It can be incredibly frustrating, particularly as community service organizations and healthcare providers seek and use data as a tool for advocacy and patient engagement. It is certainly not a lofty expectation that each state’s governmental agencies be required to comport with some sort of standard. It is not a Herculean task for states to report data in a similar manner and format, but for this to become the standard, those at the federal law and policy needs to define and implement reporting requirements across disease states. As it stands, except in limited circumstances, states are not required to report these data, rather the CDC and other federal entities are left to negotiate data collection and sharing agreements as part of federal funding opportunities.
2.) States are still ill-prepared to deal with disease outbreaks.
One would think that, after nearly three years of dealing with a global pandemic outbreak, state departments of health might have figured out ways to deal with getting out information quickly, effectively, and in an organized manner. One would be wrong.
A big hurdle that CANN encountered while seeking state-level data was that state websites are, by and large, disorganized, confusing messes, even for the most experienced patient. For the average patient, trying to find information about MPV in most states requires several steps through difficult-to-find links to try to get where they need to go. Additionally, these pages are not uniformly located on state websites as opposed to state health department websites, when those websites are different, rather than integrated into the same website.
It is not too much to ask for state websites to have a featured link on the homepage of their websites for disease outbreaks that are of national and state-level importance? Indeed, many states and state health departments are quite familiar with using banner bulletins as seen during the initial crisis phase of the COVID-19 pandemic, as an example.
More galling is the fact that, despite nearly two years of administering mass vaccination drives, several states still don’t have this down to a science. An essential tool, only realized broadly on the federal level and through private partnerships, is a centralized vaccine scheduling system. Again, not to belabor the point, we did this with COVID-19 vaccines. We should be able to provide similar supports and patient access tools across all disease states and especially in infectious disease outbreaks in which a vaccine product is available.
Instead, what we have is a sort of secret club lottery that leaves patients with the onus of calling multiple healthcare providers and health departments just to check to see if the vaccine is available, and to try to schedule an appointment.
3.) Event-based testing and vaccination drives are effective, but underutilized and overly depended upon tools for addressing MPV.
There are two men for whom CANN has the absolute highest respect: Dr. Demetre Daskalakis and Dr. David Holland. Both of these men have taken amazing steps to go out into communities that are at high risk of transmission of diseases like HIV and MPV and deliver care where people are. From drag brunches to bathhouses to leather bars and circuit parties, they have consistently led the charge in a very public way. We have been doing this with HIV testing for decades but delivering point-of-care services at these locations has always been something of a taboo that needs to be overcome for reasons including addressing these outbreaks and overcoming social stigma which harms members of marginalized sexual and gender identity communities beyond these health disparities.
That said, it is a drop in the bucket. An important drop, but a drop, still. These events still run into issues of being accessible to people who work non-traditional hours, in service industries, do not have reliable transportation, or face any host of barriers, including social stigma which may make associating receiving care at these events unsafe or feel less welcoming for people outside of the immediately targeted community. Gay, bisexual, transgender, and other men who have sex with men, the population most affected by the current MPV outbreak, are not uniformly attracted to attending drag brunches or circuit parties but may lead full and active sex lives outside of those spaces. Considering the disparities already manifesting in the current MPV data, those people making up more and more of the share of new MPV diagnoses may well be best approached outside of these types of events. This is not to suggest we should cease having vaccination and testing events in sex positive spaces. This is to say our approach should be an “and” approach.
Beyond just COVID and MPV vaccines, we need to start delivering additional vaccine services in these locations, including influenza, Hepatitis A/B, Shingles, and the like.
4.) This nation needs round-the-clock medical services.
It’s time to leave behind the 8:00 – 4:00 and 9:00 – 5:00 physician and clinic hours of operation. We have known for decades that limited office hours force patients to choose between earning enough money to survive and receiving medical care. While some federally qualified health centers and STI clinics have offered services outside of traditional healthcare hours, many have not, insisting either their communities don’t need these extended hours or stating plainly, the funding does not exist to maintain the necessary staff to operate outside of traditional business hours. Even fewer private providers and health department clinics offer non-traditional hours.
It has never made sense that physicians' offices are only open during working hours…when people are expected to be working. Maybe it has to do with the idea that, at one point in American history, at least one parent was a stay-at-home parent who had the time and wherewithal to take kids and partners to the doctor’s office. Now that virtually every family member is required to work to make ends meet, we need a different solution.
The arguments against it consistently have to do with money—it’s expensive, and you can’t turn a profit. Healthcare provision should never be about making a profit at the expense of helping people. If that means that you find physicians, physician assistants, nurses, and administrative staff to work later shifts, that’s what it means. More likely, however, it means we need to address public and private payer efforts to constantly reduce provider reimbursement, given full credentialling to nurse practitioners in all states, and more readily hire non-clinical support staff from the communities immediately served by these entities.
Beyond the fact that this move would make basic healthcare services, such as testing and vaccination, more easily accessible to people who work during the day, it might also open up additional opportunities for more people to schedule appointments that don’t require sitting in a waiting room for a half-hour beyond their appointment time.
Editor’s Note: These issues may sound minor—like the sour grapes of an exhausted and annoyed patient advocate—but the truth is that patients get frustrated with the lack of user-friendliness of every aspect of our public health infrastructure.
Patients need to be able to find what they’re looking for without having to jump through seven different hoops to find out where to schedule a vaccine appointment. Patients should be able to find what they’re looking for without having to jump through seven different hoops and spend hours trying to find out where to schedule a vaccine appointment.
We should expect to be able to see if various locations actually have vaccine stock on hand without having to call an office and annoy an administrative employee to find out if they have it in stock and if any appointments are available.
It’s 2022, basic technology has existed since the mid-2000s and these better practices in public health and healthcare engagement have been known since the late 1980’s. It’s time to get it together.