

































Assessment of State-level 
Operational Policies and Programs 

for Selected Neglected Tropical 
Diseases in the United States

Carrigan Rice, Margaret C. baker, Jenny Zhao, Stephanie 
McKay, Claire J. Standley

 
GEORGETOWN SCIENTIFIC
RESEARCH JOURNAL

Volume Four
Edition One
Spring 2024

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1Department of Global Health, School of Health, Georgetown University, Washington DC, USA 
2Center for Global Health Science and Security, Georgetown University, Washington DC, USA 
3O’Neill Institute of Global Health, Georgetown University, Washington DC, USA 
4Heidelberg Institute of Global Health, University of Heidelberg, Heidelberg, Germany   
Email: crr71@georgetown.edu, Claire.Standley@georgetown.edu, stephaniemckay01@gmail.com, 
mcb93@georgetown.edu, cz270@georgetown.edu 
hhttttppss::////ddooii..oorrgg//1100..4488009911//jjbb668833hh5555  
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Neglected tropical diseases (NTDs) affect over one billion people worldwide. Although these diseases are 
most prevalent in low- and middle-income countries, especially in tropical and subtropical regions, they 
can also affect vulnerable individuals and communities within high-income countries, including the 
United States (US).  Past research on NTDs in the US suggests that there is an unmet need for diagnosis 
and treatment within at-risk populations, and there is limited information available on existing state 
operational policies and programs. This study aimed to analyze state-level operational policies and 
programs for five NTDs previously reported in the US and known to have local transmission: Chagas 
disease, cysticercosis, soil-transmitted helminthiasis, dengue, and rabies. Departments of Health in 34 
states considered to be at higher risk of these NTDs were contacted to ascertain willingness to provide 
information on policies and programs related to surveillance, notification, diagnosis, and treatment of each 
of these five diseases. Thirteen state departments of health completed a questionnaire. Responses show 
substantial variations between states. A majority of states reported operational policies in place for dengue 
and rabies, which focused on mandated health provider-to-state reporting, as well as guidelines or 
recommendations on screening, testing, and treatment. State policies and guidelines were less consistently 
reported for Chagas disease and cysticercosis and only one state reported any surveillance efforts for soil-
transmitted helminths. Differences in types of surveillance systems were also found between each disease 
and each state. Results highlighted the fragmentation of the US public health system with respect to NTD 
management. Variability in state policies and reporting in addition to lack of active surveillance hinders 
the accurate measurement of NTD prevalence in the US and, as a result, limits the equitable and 
appropriate distribution of resources. The creation of consistent policy guidelines could reduce 
inconsistencies in reporting and prevent missed cases of NTDs in high-risk US populations. Additionally, 
greater domestic prioritization of NTD management should not compromise US support for international 
NTD control efforts, but rather should be leveraged to demonstrate greater US commitment and solidarity 
with partner countries.  
Keywords: Neglected tropical diseases, disease control policy, Chagas disease, soil-transmitted 
helminthiasis, rabies, dengue, cysticercosis

11..  IInnttrroodduuccttiioonn  

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Neglected Tropical Diseases (NTDs) are a 
group of twenty preventable diseases and 
conditions that primarily affect populations living 
in tropical areas of the world.1 Although they 
predominantly affect impoverished people living in 
low- and middle-income countries due to 
inequalities in social determinants of health, 
NTDs are not absent from high-income 
countries.1 However, the misconception that 
NTDs do not exist in high-income countries, 
including the US, results in a lack of awareness of 
these diseases among health care providers and 
policymakers.2 While research on NTDs in the US 
has been sparse, case reports focused on individual 
diseases and a small number of reviews have 
studied the risk of transmission of the following 
NTDs within the US: Chagas disease, soil-
transmitted  helminthiasis (including 
Strongyloides stercoralis), cysticercosis, rabies,  
and dengue.3–5   

Chagas disease affects an estimated 300,000 
people in the United States, with the majority 
imported or brought into the country from 
Central/South America through triatomine bug or 
by vertical transmission from mother to fetus.6  
Locally transmitted cases have also been reported 
in the US.7–10 Known risk factors for acquiring 
Chagas disease in the US include rural residence, 
lack of screening or cracks in housing structures, 
lack of air conditioning, having excess produce 
within houses, history of hunting or camping, and 
agricultural or outdoor work.2,3,11–13 Many of these 
factors, especially inadequate housing and rural 
residence,  are also associated with poverty.2,13,14 
Americans of low socioeconomic status, 
immigrants and racial minorities are the 
populations most vulnerable to NTDs. There is 
concern, based on inequalities in healthcare access 
and poor quality of information exchange between 
physician-patient, that their health risks are not 
being appropriately addressed.11,15–17   

�
1  Social Determinants of Health are factors that impact 
individuals health outcomes that are non medical. They 

Similarly, dengue fever, cysticercosis, and soil-
transmitted helminthiasis, while often related to 
travel, have also been reported to be transmitted in 
the US, especially in populations living in poverty. 
Dengue is a viral infection caused by a bite from an 
infected mosquito. It is locally transmitted or 
contracted within the area an individual lives or 
works, in Florida, Hawaii, Puerto Rico, and 
Guam.18–20 In contrast, transmission of 
cysticercosis, a parasitic infection caused by 
tapeworms, increases with a lack of sanitation. 
Transmission has been reported in Arizona, 
California, Kansas, New Mexico, New York, and 
Oregon.5,21,22 Soil helminths, which are parasitic 
worms that live within the soil, are associated with 
poor socioeconomic environments. 3,23–27 Local 
transmission of these diseases has been 
documented in southern states (Texas, Louisiana, 
Alabama, Florida), especially in areas of 
poverty.12,18,20,28 This is most notably seen in 
Alabama, where 34% of the sampled population 
tested positive for N. americanus.3,28,29 

Authors of these studies also have indicated 
that variation in the reporting of NTDs in the US 
has made it difficult to accurately assess prevalence 
and has raised concerns of underreporting for 
health surveillance purposes.2,4,30,31 Inaccurate 
reporting on NTDs in the US can be attributed to 
limited funding and support for at-risk 
populations.4 This is compounded by the tendency 
for at-risk populations of selected NTDs to be 
underinsured or uninsured groups with lack of 
access to testing and treatment.15–17,25 Similarly, 
studies on physician and community knowledge 
suggest there is a lack of awareness of these 
diseases, which could result in 
underreporting.16,32,33 

While recent studies have addressed the lack of 
knowledge in physician and at-risk populations 
within the US, there have been fewer studies 
examining operational policies for NTD 
surveillance, diagnosis, and control in the US, and 

include a person’s income, education, housing, food, 
environment, etc. These factors can impact one’s ability to 
receive healthcare and one’s daily life. 

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none, to our knowledge, examining these policies 
and programs at the state level. Moreover, there is 
a substantial body of scholarship on the potential 
and actual effects of the COVID-19 pandemic on 
NTDs in other parts of the world.34,35,36 While the 
US does not have formal NTD programs, it is 
hypothesized that there would have been impacts 
on case management and testing as health 
programs shifted to pandemic responses.37,38 While 
some policy information is publicly available via 
state health departments and state public health 
legislation, little data on the actual status of 
operational policies and programs to detect and 
control NTDs is available online. 

The purpose of this paper was to collect 
empirical data on state-level operational policies 
and programs for these five NTDs in order to 
better understand the current status of US NTD 
control approaches, as well as any potential 
impacts of the COVID-19 pandemic.��
22..  MMeetthhooddss  

22..11  DDaattaa  CCoolllleeccttiioonn  
 This study collected data from May 2022 to 
July 2022 in the form of a questionnaire. Thirty-
four State Health Departments were contacted 
and, based on their exposure risk to selected NTDs 
and willingness to participate, were sent a 
questionnaire to individually complete. The states 
and territories initially chosen were those that had 
previously reported cases of any of the selected 
NTDs since 2012, states with higher percentages 
of poverty as reported by Census Bureau 2021, and 
those with higher immigration from countries 
endemic with selected NTDs. The following states 
were sent the questionnaire: Alabama, Arizona, 
Arkansas, California, Florida, Georgia, Illinois, 
Indiana, Kansas, Kentucky, Louisiana, Maine, 
Maryland, Michigan, Mississippi, Missouri, New 
Jersey, New Mexico, New York,  North Carolina, 
Ohio, Oklahoma, Oregon, Pennsylvania, Puerto 
Rico, South Carolina, Tennessee, Texas, US 
Virgin Islands, Utah, Virginia, West Virginia, 
Wisconsin, and Wyoming. Of these, thirteen 

completed the questionnaire: Alabama, Arizona, 
Arkansas, Illinois, Kentucky, Maine, Michigan, 
Oregon, Pennsylvania, Tennessee, West Virginia, 
Wisconsin, and Wyoming. 

State health departments were first contacted 
by email to ask if they would be willing to complete 
a questionnaire. The questionnaire was sent to 
email addresses obtained from the state’s 
Department of Health website or received after 
contacting State Health Departments directly. 
One questionnaire was sent to each state or 
territory, with the request to have it completed by 
one or more state health department officials 
within infectious disease departments/zoonotic 
disease programs with knowledge of state-level 
data, policies, and programs on Chagas Disease, 
cysticercosis, dengue, soil-transmitted 
helminthiasis, and/or rabies. Repeated requests for 
participation and completion of surveys were sent 
to 34 targeted states. None of the officials’ personal 
data (including name, email address, or phone 
number) was collected, retained, or used in the 
analysis of the results, and no follow-up 
questioning was conducted.  

The questionnaire consisted of eight 
categorical and six open-ended questions designed 
to collect information on the following topics: 
surveillance systems, mandated disease reporting, 
screening policies, testing programs, treatment 
programming, and impacts of the COVID-19 
pandemic on NTD programs within the state 
Departments of Health (Appendix 1). These 
categories were designed to gather information 
about disease prevention strategies (surveillance), 
programs for early detection and treatment of 
NTDs (screening and treatment), and the level of 
inconsistency in health policy with regards to 
variations in state disease reporting. Optional 
spaces were provided to clarify reasons for 
responses. 
22..22  DDaattaa  AAnnaallyyssiiss�

Data from the categorical questions in the 
questionnaires were coded and entered into an 
Excel spreadsheet.  Open-ended responses were 
analyzed thematically based on four categories: 1) 

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notification and surveillance; 2) screening and 
testing; 3) treatment and case management; 4) 
COVID-19 impacts.  

Standardized definitions were used to analyze 
responses; these definitions and possible survey 
responses are defined below. 

Notifiable or reportable diseases were defined 
as diseases considered reportable within a 
particular state. It is important to note that the list 
of notifiable diseases varies between states; 
however, some diseases are recommended to be 
notifiable in all states (nationally notifiable) by the 
Council of State and Territorial Epidemiologists 
(CSTE).39 These recommended diseases are 
included in the CDC’s National Notifiable 
Diseases Surveillance System (NNDSS). 39 Within 
this study, reporting for each disease was 
categorized as either “state-mandated”, meaning 
that health providers are required to provide 
notification to local, county, or state authorities if 
one or more cases is detected, or “not state-
mandated”, meaning that notification was not 
mandatory.  

This study also analyzed surveillance 
mechanisms using the CDC’s definition of 
surveillance as an “ongoing, systematic collection, 
analysis, and interpretation of health-related data 
essential to planning, implementation, and 
evaluation of public health practice.”40  This 
included further classification as active surveillance 
(where health departments initiate regular weekly 
contact with providers to identify cases), passive 
surveillance (standardized reporting system such as 
the National Notifiable Diseases Surveillance 
System), or sentinel surveillance (a form of active 
surveillance that requires a “network of healthcare 
providers or hospitals to be recruited by the health 
department to regularly report specified health 
events in specific populations”).41,42 States could 
also respond that they had no surveillance system 
in place for the targeted diseases, and were further 
given the option to respond “unsure/NA”. Based 
on their surveillance mechanism, states were then 
asked whether they considered each disease to 
occur continuously, sporadically, or seasonally.  

Finally, to determine the capacity for early 
treatment and diagnosis, this study asked states 
about their screening operational policies or 
programs. Screening was defined as testing on an 
individual basis for patients who were considered 
high risk for a particular disease. Patients did not 
have to experience symptoms in order to be 
screened.  

For COVID-19 impact, questions detailed the 
impact of the pandemic on the State Health 
Department’s infrastructure and programming, as 
well as the ability for patients to receive screening 
and testing.  The State Health Department's 
infrastructure was defined as changes in the 
proceedings of management of cases, number of 
human resources, and any changes made to the 
work environment that were needed to fit 
COVID-19 precautions.  

These definitions helped define categorical 
differences in the results found for each state’s 
operational policies and procedures. Descriptive 
statistics were carried out to describe the results 
found within the outlined categories, and maps to 
compare findings between states were created in 
Tableau.  
22..33  EEtthhiiccss  

This study was reviewed and determined not to 
constitute human subjects research by Georgetown 
University’s Institutional Review Board on  May 
31, 2022 (STUDY00005232). 
33..  RReessuullttss  aanndd  DDiissccuussssiioonn  

Of the 34 territories and states selected and 
contacted to determine their willingness to 
complete a questionnaire, 25 (73.5%) responded 
positively and were subsequently sent a 
questionnaire. Thirteen of the 25 states (52%) 
completed the questionnaire, for an overall 
response rate of 38.2% (Figure 1). Consistent with 
published literature, states described low incidence 
and minimal reported cases of Chagas disease, 
cysticercosis, human rabies, dengue, and soil 
helminths.2,18,29 States also reported varying 
operational policies, guidelines and programs 
related to the selected NTDs. 

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FFiigguurree  11..  Geographical view of responses to the 
survey from US state health departments. Figure 
was generated on Tableau. Responses to the survey 
were highlighted above.��
33..11  SSuurrvveeiillllaannccee  aanndd  NNoottiiffiiccaattiioonn  

Almost all responding states (92.3%), required 
state reporting of dengue and rabies, which are also 
the only two of the five selected NTDs that are 
nationally notifiable to be reported to the CDC 
(Figure 2).43 Consequently, it is logical that the 
majority of state legislatures have state-mandated 
reporting of nationally notifiable diseases in order 
to provide this data to national government. With 
regards to the one state’s survey response for rabies 
reporting, the information given, via the survey, 
not align with other documents available online.44 
State-mandated reporting for Chagas disease was 
reported by seven states, and sub-state reporting is 
mandated in Los Angeles County, California.43 45 
Mandatory notification of cysticercosis was 
reported only by Oregon and Arizona. State 
reporting of soil-transmitted helminthiasis was 
mandated by Arizona.21  

 
FFiigguurree  22..  States surveyed with mandated reporting 
of selected NTDs. Figure was generated on 
Tableau. State responses are categorized by NTD 
and by response to mandated reporting. 
 The state reporting process and standard 
reporting procedures were also detailed by 
surveyed states. According to states, physicians 
sent case reports to local health departments, state 
surveillance systems, regional nurses or 
epidemiologists, and state infectious disease 
department/zoonotic programs based on the state’s 
reporting system. Arizona, Tennessee, 
Pennsylvania, Wisconsin, and Michigan had 
notification systems whereby health providers 
reported to local or regional health departments 
before reaching state health departments. In the 
other surveyed states, health providers transmitted 
case data directly to the state health departments. 
These differences suggest a hierarchy of state 
reporting systems (Figure 3) that varied between 
states (protocol within some states require 
physicians to report to local administrators while 
other states require reporting directly to state 
health departments), which may be useful for 
identifying prevention measures as well as 
outbreaks.   

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FFiigguurree  33..  Flow/Hierarchy of reports from 
physician to state health department. This figure 
was created in Excel and describes the hierarchy of 
disease reporting seen in some state health 
departments.  

For diseases that were non-reportable within 
the state, the majority of states refrained from 
commenting on state reporting systems. However, 
Maine’s state health department did note that 
non-reportable diseases could still be reported by 
providers as unusual cases of disease, and likewise 
any outbreak of illness with potential public health 
significance should also be reported to the state 
health authorities; this could be a mechanism for 
the state health department to receive data on 
otherwise non-reportable NTDs.  

Systems for surveillance of the selected NTDs 
also varied between diseases and from state-to-
state (Figure 4). For diseases that were reportable 
in states, most surveillance systems were passive, 
with exception of rabies, with both Wyoming and 
Pennsylvania combining active and passive 
approaches. Passive surveillance systems, as 
outlined by past literature can include approaches 
such as blood donor screening. However, our 
questionnaire did not require surveyed states to 
specify the mechanism for surveillance.30 Arizona 
also reported having sentinel surveillance for 
dengue near the border with Mexico; this was the 
only state that reported this type of surveillance 
system across all NTDs reviewed. For both soil-
transmitted helminths and cysticercosis, all the 
states without mandated state reporting also 
reported no surveillance systems or were unsure of 
existing surveillance systems. 

 
FFiigguurree  44..  Types of surveillance systems used by 
surveyed states. Figure was generated in Excel and 
describes the breakdown of reporting type per 
disease category. 
33..22  SSccrreeeenniinngg  aanndd  TTeessttiinngg  

Case detection policies and screening 
programs of the selected NTDs in at-risk 
populations tended to be reported in states with 
mandatory state reporting of that disease or in 
states where the disease was nationally notifiable. 
The approaches used for screening and case 
detection varied between diseases and states. 
Dengue had state screening programs in six states, 
whereas state screening for Chagas disease was 
only reported by Oregon and Kentucky, both of 
which have state-mandated reporting for Chagas 
disease (Figure 5). Screening programs for rabies 
occurred in nine surveyed states for animals that 
came into contact (bitten or scratched) with 
humans, however, due to the rarity of human 
rabies, no state reported widespread human 
screening for rabies.46 No states reported any 
screening programs in place for soil-transmitted 
helminthiasis. Minimal state screening programs 
for diseases may be due to limited resources, or if 
surveillance occurs at other levels of the health 
system. For example, since 2007, all US blood 
banks screen donors for Chagas disease before 
introducing donors' blood into the national 
registry, which helps prevent the asymptomatic 
spread of Chagas disease to blood recipients.47 
However, if these blood banks are operated by 
private or non-governmental entities, positive tests 
might not be reported to state health departments. 
This often occurs for diseases that are not 

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mandated to be reported at either the state or 
national level.47,48 This is postulated to cause 
underreporting of non-notifiable diseases, 
especially if the state is unaware of trend data from 
blood banks.   

 
FFiigguurree  55..  State health departments with screening 
policies and programs for selected NTDs. Figure 
was made in Tableau and describes states’ 
responses to the inclusion and exclusion of 
screening requirements for the selected NTDs.  

Similarly, there was an association between 
states having testing capabilities for diseases, and 
those diseases being reportable or surveyed 
nationally or at the state level. However, this was 
not always the case (Figure 6). For example, in 
Oregon, cysticercosis, rabies, dengue, and Chagas 
disease are all reportable to the state health 
department, yet no specific testing programs or 
capabilities were reported as being in place to 
detect cases. Overall, dengue, which is a nationally 

notifiable disease, was only reported as having 
established testing programs in place in five of the 
13 surveyed states (38.5%). Thus, there were 
minimal established programs designated to 
testing NTDs even within states that had 
mandated reporting of these NTDs. A lack of 
specific programs does not necessarily mean states 
do not have the ability to test for NTDs. As stated 
by the state health department of Wisconsin in 
their questionnaire response, testing and 
coordination of testing can be done even for 
diseases without state-mandated reporting. Some 
possible explanations for the low number of state 
testing designated programs are that testing for 
these diseases can be technically difficult and/or 
expensive, and there may be a lack of physician 
knowledge which results in low testing for 
symptomatic individuals. For example, to confirm 
a positive Chagas disease case, two different 
serological tests, targeting different antigens, must 
be performed. 48,49 Although one of these tests can 
be conducted by CDC free of charge, provided 
that the person has had a positive screening test, 
there may be a limited number of initial screening 
tests conducted by states due to perceived low risk. 
One potential solution to this issue could be 
creating screening sites at regional (i.e. multistate) 
networks for NTD diagnostics. This could 
increase the availability of testing without adding 
to the burden on individual state health 
systems.50,51 

Another testing and screening barrier noted 
was cost of testing. For example, neurocysticercosis 
requires MRI or CT scans along with blood tests 
for diagnosis, of which MRIs and CT scans are 
frequently not covered by insurance.52 To help 
overcome cost barriers to diagnosis and treatment, 
costs for NTD treatment could be covered by state 
health insurance schemes.   

  
  

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FFiigguurree  66..  State health departments with testing 
policies and guidelines for selected NTDs. Figure 
was curated in Tableau and describes states’ 
responses to the inclusion of testing guidelines of 
selected NTDs.  
33..33  TTrreeaattmmeenntt  aanndd  CCaassee  MMaannaaggeemmeenntt  

Five of 13 states with mandated state reporting 
of an NTD also reported having treatment 
guidelines in place for that disease. If the disease 
was not reportable, 12 out of 12 (100%) states 
reported no treatment policies or could not 
comment on specific recommendations or policies 
for case management of disease. For dengue, 
which was notifiable in all 13 surveyed states, four 
states (Alabama, Kentucky, Pennsylvania, and 
West Virginia) had specific treatment 
recommendations. Similarly, Alabama, Kentucky, 
Pennsylvania, West Virginia, and Wyoming 
reported having treatment guidelines for rabies. 
The only state that reported having treatment 
guidelines for Chagas disease was Kentucky. No 
states reported having treatment guidelines for 

cysticercosis and soil-transmitted helminthiasis. It 
is worth noting that if states reported having no 
treatment policies in place, it did not imply that 
individuals were not able to receive treatment; 
instead, it meant that the State Health 
Departments did not provide recommended 
specific treatment approaches for that NTD. For 
example, Arizona and Illinois health departments 
specifically stated that treatment 
recommendations were left up to the health 
provider for all NTDs. At the state level, 
departments of health could ensure that clinicians 
and health-care facilities serving potentially higher 
risk groups have access to the CDC online disease 
treatment guidelines for these 5 NTDs, as this 
could guide patient care.   

For states that reported treatment operational 
policies/guidelines, recommendations and 
treatment guidelines included Postexposure 
prophylaxis (PEP) and wound care for rabies, 
supportive care, and fluid therapy for dengue. 
Kentucky also developed “a reportable disease 
regulation with step-by-step guides to each 
reportable disease/infection” in order to provide 
physicians and individuals with knowledge about 
illnesses. As with screening and testing, the lack of 
treatment guidelines reported by state departments 
of health could reflect a resource-saving measure, 
especially if the incidence of the disease is 
considered too low to warrant the development 
and dissemination of specific guidelines. It also 
could indicate state emphasis on provider and 
patient autonomy during the provision of care.�
33..44  IImmppaacctt  ooff  CCOOVVIIDD--1199  

The impact of COVID-19 was assessed by 
examining changes to state health department 
infrastructure, patients’ ability to seek NTD-
related services, and changes in operational 
abilities to detect, treat, and report NTDs. The 
results found that all (100%) of surveyed states 
reported changes in the management and 
organization of departments to fit new COVID-
19 health guidelines. Ten of the 13 (76.9%) states 
surveyed reported virtual meetings and remote 
work environments due to COVID-19 prevention 

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strategies. Some states also reported hiring new 
staff or shifting staff responsibilities to fit the need 
of surveillance and case management of COVID-
19 cases. Despite changes in staff and 
management, a majority of states surveyed (11 out 
of 13 or 84.5%) reported that there were minimal 
changes in reporting of NTDs. This could be due 
to challenges in analyzing the effects of COVID-
19 on NTDs, since cases prior to COVID-19 were 
minimal. Limited case numbers before the 
pandemic make measuring the resilience of 
programming during adverse situations difficult. 
As such, the true impact of COVID-19 on at-risk 
individuals for NTDs may not yet be fully 
understood.  
44..  LLiimmiittaattiioonnss  

Due to the limited amount of state responses, 
and particularly the absence of responses from 
states including California, Florida, and Texas 
with substantial at-risk populations, there were 
limits to the generalizability of the data from the 
questionnaire.53,54,55 Additionally, due to the short 
length and style of the questionnaire, there was 
limited opportunity to provide detailed 
explanations for why surveyed states had certain 
policies or programs for NTDs. The lack of 
detailed reasoning for blank answers limits the 
study’s ability to draw conclusions about why 
certain states do not have more developed 
operational policies or programs for NTDs. 
Furthermore, no follow-up interviews were 
conducted based on questionnaire responses, and 
consequently, clarification, as well as further 
questioning, did not take place. Lack of follow up 
did not occur due to constraints of study resources.  

Another limitation of this study is that state 
reporting of cysticercosis is different from that of 
taeniasis, while the World Health Organization 
considers these diseases to be interchangeable. 
Differences in case definitions have the potential 
to limit surveillance and this study's results. 
Further studies are needed to address the 
limitations of the questionnaire and gather data 
from states not reached in this study.   
55..  CCoonncclluussiioonnss  

This study sought to investigate the 
operational and reporting policies for NTDs 
within state health departments in the US. The 
results of this study suggest vast differences in the 
extent and consistency of epidemiological data 
collection between the five targeted NTDs, as well 
as variations in the recommendations and 
guidelines for the diseases, between states within 
the US. These differences reflect the varied nature 
of the policies within the US healthcare system. 
Additionally, the variation in implementation of 
policies suggests that there may be underreporting 
of NTDs, which could be further exacerbated by 
lack of funding in state health departments.51, 56 It 
is nonetheless important to highlight these gaps 
when observed, notably for conditions like NTDs, 
which are closely linked to other aspects of societal 
and economic inequity, globally as well as in the 
US.  

Importantly, this study adds to the growing 
literature that highlights the short-comings of a 
“case count” approach, or an approach that only 
uses the number of positive cases to identify at-risk 
patients, to surveillance.57 In the future, additional 
focus should be placed on measuring the burden of 
NTDs in the US, but to do so accurately may 
require novel ways of ascertaining prevalence and 
incidence. For example, there may be 
opportunities to use health insurance or medical 
prescription data to track case management for 
certain NTDs, or to conduct serological studies on 
blood banks or other available clinical specimens 
(for pathogens other than T. cruzi).5 Wastewater 
surveillance is highly sensitive and could 
potentially be used to track localized outbreaks of 
NTDs, especially if conducted in conjunction with 
surveillance for other pathogens or conditions of 
concern. This method has effectively been used in 
surveillance of other illnesses such as COVID-
19.58 Further research should also compare the 
changes in management, reporting, and treatment 
of other diseases during COVID-19 to NTDs in 
order to understand the true effects of COVID-19 
on disease management. Additionally, an 
investigation on the perspectives of physicians and 
how COVID-19 impacted their management of 

40



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NTDs as well as other diseases should be 
conducted. These results would provide more 
insight into other barriers preventing NTD 
surveillance in the US and highlight additional 
recommendations.  
AAcckknnoowwlleeddggmmeennttss 

We thank Georgetown University and the 
Laidlaw Program for helping fund this project. 
Special thanks to all the state officials who 
provided data and additional expertise in this 
project.  
RReeffeerreenncceess  

1.� Neglected tropical diseases – Summary. 
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Global Impact of NTDs. 
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iseases/summary/en/ 

2.� Hotez, P. (2016). Blue marble health: An 
innovative plan to fight diseases of the poor 
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3.� Lynn, M. K., Morrissey, J. A., & Conserve, 
D. F. (2021). Soil-Transmitted Helminths 
in the USA: a Review of Five Common 
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00221-2 

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Evidence of Likely Autochthonous 
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10.�Lynn, M. K., Bossak, B. H., Sandifer, P. A., 
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13.�Granados, P. S., & Rohde, R. (2021). 

41



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�
�

�

Chagas Disease in the U.S.: What We Do 
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as-Disease-in-the-U-S-What-We-Know-
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16.�Forsyth, C. J., Hernandez, S., Flores, C. A., 
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17.�Spallone, A., Woroch, L., Sweeney, K., 
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24.�Singer, R., Huan Xu, T., Herrera, L. N. S., 
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Prevalence of Intestinal Parasites in a Low-
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25.�Webster, J. L., Stau"er, W. M., Mitchell, T., 
Lee, D., O’Connell, E. M., Weinberg, M., 
Nutman, T. B., Sakulrak, P., & Tongsukh, 
D. (2022). Cross-Sectional Assessment of 
the Association of Eosinophilia with 
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https://doi.org/10.4269/ajtmh.21-0853 

26.�Watts, M. J., Kotsila, P., Mortyn, P. G., 
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Influence of socio-economic, demographic 
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https://doi.org/10.1186/s12942-020-
00241-1 

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�
�

�

27.�Juarez, J. G., Carbajal, E., Dickinson, K. L., 
Garcia-Luna, S., Vuong, N., & Mutebi, J.-
P. (2022). !e unreachable doorbells of 
South Texas: Community engagement in 
colonias on the US-Mexico border for 
mosquito control. BMC Public Health., 22, 
1176. https://doi.org/10.1186/s12889-
022-13426-z 

28.�McKenna, M., McAtee, S., Bryan, P., Jeun, 
R., Ward, T., & Kraus, J. (n.d.). Human 
intestinal parasite burden and poor 
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29.�Chelladurai, J. J., Murphy, K., Snobl, T., & 
Bader, C. (2017). Molecular Epidemiology 
of Ascaris Infection Among Pigs in Iowa. J 
Infect Dis ., 215(1), 131–138. 
https://doi.org/10.1093/infdis/jiw507 

30.�Bennett, C., Straily, A., Haselow, D., 
Weinstein, S., Ta"ner, R., & Yaglom, H. 
(2018). Chagas Disease Surveillance 
Activities—Seven States, 2017. Weekly, 
67(26), 738–741. 

31.�Starr, M., & Montgomery, S. (2011). Soil-
transmitted helminthiasis in the United 
States: A systematic review—1940–2010. 
Am J Trop Med Hyg, 85(4), 680–684. 
https://doi.org/10.4269/ajtmh.2011.11-
0214 

32.�Doblecki-Lewis, S., Chang, A., Jiddou-
Yaldoo, R., Tomashek, K. M., Stanek, D., 
Anil, L., & Lichtenberger, P. (2016). 
Knowledge, attitudes, and practices of 
Florida physicians regarding dengue before 
and after an educational intervention. 
BMC Med Educ., 16, 124. 
https://doi.org/10.1186/s12909-016-
0647-8 

33.�Hall, R. L., Anderson, B., Schulkin, J., 
Cantey, P. T., Montgomery, S. P., & Jones, J. 
L. (2017). Survey of Obstetrician-
Gynecologists in the United States About 
Taeniasis and Cysticercosis. Am J Trop 
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https://doi.org/10.4269/ajtmh.16-0350 

34.�Brooker, S. J., Ziumbe, K., Negussu, N., 

Crowley, S., & Hammami, M. (2021). 
Neglected tropical disease control in a 
world with COVID-19: an opportunity 
and a necessity for innovation. Transactions 
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35.�Borlase, A., Le Rutte, E. A., Castaño, S., 
Blok, D. J., Toor, J., Giardina, F., Davis, E. 
L., & NTD Modelling Consortium 
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potential indirect e"ect of COVID-19 on 
control programmes for seven neglected 
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36.�Abdela, S. G., van Griensven, J., Seife, F., & 
Enbiale, W. (2020). Neglecting the e"ect of 
COVID-19 on neglected tropical diseases: 
the Ethiopian perspective. Transactions of 
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https://doi.org/10.1093/trstmh/traa072 

37.�McKay, S., Shu’aibu, J., Cissé, A., Knight, 
A., Abdullahi, F., Ibrahim, A., Madaki, S., 
Genovezos, C., McCoy, K., Downs, P., 
Kabore, A., Adamu, H., Gobir, I. B., 
Chaitkin, M., & Standley, C. J. (2021). 
Safely resuming neglected tropical disease 
control activities during COVID-19: 
Perspectives from Nigeria and Guinea. 
PLOS Neglected Tropical Diseases, 
15(12), e0009904. 
https://doi.org/10.1371/journal.pntd.0009
904 

38.�Toor, J., Adams, E. R., Aliee, M., & 
Amoah, B. (2021). Predicted Impact of 
COVID-19 on Neglected Tropical Disease 
Programs and the Opportunity for 
Innovation. Clinical Infectious Diseases, 
72(8), 1463–1466. 

39.�Wharton, M., Vogt, R. L., & Buehler, J. W. 
(1990, October). Case Definitions for 
Public Health Surveillance. CDC 
MMWR. 

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�
�

�

https://www.cdc.gov/mmwr/preview/mm
wrhtml/00025629.htm 

40.�Introduction to Public Health Surveillance. 
(2018, November). CDC- Public Health 
Training. 
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101/surveillance.html 

41.�Roush. (n.d.). Chapter 19: Enhancing 
Surveillance. In Manual for the 
Surveillance of Vaccine-Preventable 
Diseases. 
https://www.cdc.gov/vaccines/pubs/surv-
manual/chpt19-enhancing-surv.html 

42.�Runge-Ranzinger, S., Horstick, O., Marx, 
M., & Kroeger, A. (2008). What does 
dengue disease surveillance contribute to 
predicting and detecting outbreaks and 
describing trends? Tropical Medicine and 
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43.�Surveillance Case Definitions for Current 
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44.�Illinois Department of Public Health.  
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n/web/idph/files/publications/illinois-
reportable-diseases-050316.pdf 

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Acute Communicable Disease Control 
Manual. Department of Los Angeles 
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/b73/B73Index.htm 

46.�Center of Disease Control. Human Rabies. 
Center of Disease Control. Accessed 
December 11, 2023. 
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urveillance/human_rabies.html 

47.�Blood Donor Screening for Chagas 
Disease—United States, 2006-2007. (n.d.). 
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https://doi.org/10.1001/jama.297.13.1424 
48.�Ayres, J., Marcus, R., & Standley, C. J. 

(n.d.). !e Importance of Screening for 
Chagas Disease Against the Backdrop of 
Changing Epidemiology in the USA. 
Current Tropical Medicine Reports. 
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49.�Parasites—American Trypanosomiasis 
(also known as Chagas Disease): 
Diagnosis. (2022, April 11). Center of 
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https://www.cdc.gov/parasites/chagas/heal
th_professionals/dx.html 

50.�Asia-Pacific Economic Cooperation. 
APEC Action Plan on Rare Diseases. 
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source/satellite/Rare-
Diseases/APEC_ActionPlan.pdf 

51.�Marcus, R., Henao-Martínez, A. F., Nolan, 
M., Livingston, E., Klotz, S. A., Gilman, R. 
H., Miranda-Schaeubinger, M., & 
Meymandi, S. (2021). Recognition and 
screening for Chagas disease in the USA. 
!erapeutic advances in infectious disease, 
8, 20499361211046086. 
https://doi.org/10.1177/20499361211046
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52.�White, A. C., Coyle, C. M., Rajshekhar, V., 
Singh, G., Hauser, W. A., Mohanty, A., 
Garcia, H. H., & Nash, T. E. (2018). 
Diagnosis and Treatment of 
Neurocysticercosis: 2017 Clinical Practice 
Guidelines by the Infectious Diseases 
Society of America (IDSA) and the 
American Society of Tropical Medicine 
and Hygiene (ASTMH). Am J Trop Med 
Hyg., 98(4), 945–966. 
https://doi.org/10.4269/ajtmh.18-88751 

53.�Center of Disease Control. Dengue in the 
US States and Territories. Center of 
Disease Control. Accessed December 11, 
2023. 
https://www.cdc.gov/dengue/areaswithrisk

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�
�

�

/in-the-us.html 
54.�Irish, A., Whitman, J. D., Clark, E. H., 

Marcus, R., & Bern, C. (2022). Updated 
Estimates and Mapping for Prevalence of 
Chagas Disease among Adults, United 
States. Emerging infectious diseases, 28(7), 
1313–1320. 
https://doi.org/10.3201/eid2807.212221 

55.�University of Florida. Racing to diagnose 
Chagas disease, a silent killer in Florida. 
Published July 5, 2023. University of 
Florida. Accessed January 17, 2023. 
https://epi.ufl.edu/2023/07/05/racing-to-
diagnose-chagas-disease-a-silent-killer-
in-florida/ 

56.�Hotez PJ, Jackson Lee S (2017) US Gulf 
Coast states: !e rise of neglected tropical 
diseases in "flyover nation". PLoS Negl 

Trop Dis 11(11): e0005744. 
https://doi.org/10.1371/journal.pntd.0005
744 

57.�Stoto, M. A., Kraemer, J. D., & Piltch-
Loeb, R. (2023). Better Metrics to Guide 
Public Health Policy: Lessons Learned 
From COVID-19 for Data Systems 
Improvement. Harvard Data Science 
Review, 5(1). 
https://doi.org/10.1162/99608f92.3e516c
04 

58.�Center of Disease Control. National 
Wastewater Surveillance System (NWSS). 
Center of Disease Control. Accessed 
December 11, 2023. 
https://www.cdc.gov/nwss/wastewater-
surveillance.html 

�  

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AAppppeennddiixx  11..  QQuueessttiioonnnnaaiirree  ffoorr  ddaattaa  ccoolllleeccttiioonn  ffrroomm  ssttaattee  hheeaalltthh  ddeeppaarrttmmeennttss..  
 
BBaacckkggrroouunndd::  

Neglected Tropical Diseases (NTD) affect over 1 billion people in tropical and subtropical areas, 
which are predominantly regions within low and middle-income countries.2 Although these diseases 
primarily affect lower-income nations, they still affect the United States. The main neglected tropical 
diseases seen in the United States are rabies, Chagas disease, soil transmitted helminths (Ascaris, 
Trichuris and hookworm), cysticercosis, and dengue. This survey aims to analyze the distribution of 
these NTDs within states and to identify policies in place for surveillance, diagnosis, case management 
and reporting.  

  
IInnssttrruuccttiioonnss::    

Participation in this survey is voluntary and no personally identifiable data will be used in analysis 
of responses or shared with anyone outside the research team without express consent. Responses from 
the questionnaire will be analyzed qualitatively for common themes relating to policies and programs for 
NTDs in the United States. This survey questionnaire is directed toward state health officials with 
expertise on one or more of the following diseases: rabies, Chagas disease, soil transmitted helminths, 
cysticercosis, and dengue. The following questions pertain to the reporting and tracing of these diseases 
as well as demographics related to at risk populations. Please answer the questions to the best of your 
knowledge.  

 
 
 
 
 
 
 
 
 

 
 
 

�
2 World Health Organization. Accelerating work to overcome the global impact of NTDs: 2011–2020 
Progress dashboard. [cited 13 October 2021].�

46



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�

�

Questionnaire: 
 

Department/Agency name: 
State: 
 

1.� How many cases of each of the following diseases have been detected in your state within the 
past a) one month; b) one year? 
 
 Number of cases 
Disease Past one month Past one year 
Rabies   
Chagas disease   
Soil-transmitted helminths   
Cysticercosis   
Dengue   
 

 
2.� What is the incidence of Chagas disease, soil transmitted helminths, and cysticercosis within 

your state? Please respond to each disease separately. 
 

Disease Incidence 

Rabies  

Chagas disease  

Soil-transmitted helminths  

Cysticercosis  

Dengue  

47



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�

�

 
3.� Based on question 1 and 2, are there risk factors for rabies, Chagas disease, soil transmitted 

helminths, cysticercosis, and dengue specific to your state? If yes, what are the risk factors? Please 
respond to each disease separately. 

4.� Which human populations are considered high risk groups for rabies, Chagas disease, soil 
transmitted helminths, cysticercosis, and dengue within your state? Please respond to each 
disease separately. 

5.� Does your state health department have screening policies or programs regarding the following 
diseases: rabies, Chagas disease, soil transmitted helminths, cysticercosis, and dengue. Select all 
applicable.  
�Chagas disease 
�rabies 
�soil transmitted helminths 
�cysticercosis 
�dengue 

6.� Within your state, is there a system of reporting to state jurisdiction for any of the following 
diseases? If yes, check mark the following disease. 
 �Chagas disease 
�rabies 
�soil transmitted helminths 
�cysticercosis 
�dengue 

7.� Within your state, is there a state testing program for any of the following diseases? If yes, check 
mark the following disease. 
�Chagas disease 
�rabies 
�soil transmitted helminths 
�cysticercosis 
�dengue 

8.� If you answered yes to question 6, to whom is reporting received and are these cases nationally 
notifiable? Please respond to each disease separately.  

9.� What type of surveillance system is used for the following disease in your state? 

48



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�
�

�

Chagas disease 
 �  active   �  passive  � sentinel � no surveillance � not sure/don’t know 
Rabies 
 �  active   �  passive  � sentinel � no surveillance � not sure/don’t know 
Soil Transmitted Helminths 
 �  active   �  passive  � sentinel  � no surveillance � not sure/don’t know 
Cysticercosis 
 �  active   �  passive  � sentinel � no surveillance � not sure/don’t know 
Dengue 
 �  active   �  passive  � sentinel  � no surveillance � not sure/don’t know 
 

10.�If you answered yes to question 6 or 7, Are there treatment policies in your state? If yes, please 
describe each disease separately.  

11.�If you answered yes to question 6 or 7, are these diseases considered seasonal, continuous or 
sporadic for your state?  
Chagas disease 
 �  seasonal    �  continuous   � sporadic 
Rabies 
 �  seasonal    �  continuous   � sporadic 
Soil Transmitted Helminths 
 �  seasonal    �  continuous   � sporadic 
Cysticercosis 
 �  seasonal    �  continuous   � sporadic 
Dengue 
 �  seasonal    �  continuous   � sporadic 

12.�Has COVID-19 affected the programs for surveillance, detection and reporting of rabies, 
Chagas disease, soil transmitted helminths, cysticercosis, and dengue within your state? Please 
respond to each disease separately and clarify if your state has programs and/or policies on the 
following categories.  
 

49



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�������������	������������������
�
�

�

 Programs/Policies:  

Disease Surveillance Detection Resporting Case 
Management 

Rabies     

Chagas disease     

Soil-transmitted 
helminths 

    

Cysticercosis     

Dengue     

 
13.�Has COVID-19 affected individuals’ ability to receive testing or seek care for rabies, Chagas 

disease, soil transmitted helminths, cysticercosis, and dengue within your state? Please respond to 
each disease separately. 

14.�Did COVID-19 change your state’s department of health infrastructure? (This includes virtual 
meetings as well as shifting efforts to COVID-19 surveillance.)  

15.�If you are willing to be contacted for follow up questions or clarifications about the responses 
above, please provide a contact email address here:  

�

 
�
�

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