The Surveillance System
I'm listing the basic data collection tools used by local and state health departments- which report to CDC- first. Then I'll discuss how the epistemophilia of this assembling inquisition machine is used.
Here are the primary sources of information on PLHIV in the US that are collected and reported to CDC; and reused in other areas, the extend of which is unknown.
The Medical Monitoring Project collects data on, and provides information about the behaviors, clinical outcomes, quality of care, and barriers to care and viral suppression among people with diagnosed HIV in the United States. Currently, 23 project areas (16 state health departments, 6 local health departments, and the Puerto Rico Department of Health) conduct MMP.
eHARS stands for Enhanced HIV/AIDS reporting system. It is the system used for HIV surveillance. eHARS collects data on all people living with HIV (PLWH) at the local and state level; and shares it with CDC. The following data is collected: Name, Demographic information, Viral loads, CD4 counts
Partner Services provides free services to people diagnosed with HIV or other sexually transmitted infections (STIs). Partner Services is a function of local and state health department staff. It helps identify and locate partners to inform them of the increased chances of getting HIV from sex or drug use. It also provides testing, counseling, and referrals for other services.
eHARS stands for Enhanced HIV/AIDS reporting system. It is the system used for HIV surveillance. eHARS collects data on all people living with HIV (PLWH) at the local and state level; and shares it with CDC. The following data is collected: Name, Demographic information, Viral loads, CD4 counts
Partner Services provides free services to people diagnosed with HIV or other sexually transmitted infections (STIs). Partner Services is a function of local and state health department staff. It helps identify and locate partners to inform them of the increased chances of getting HIV from sex or drug use. It also provides testing, counseling, and referrals for other services.
This is how it is defined by the CDC, State and local health departments, but what they don't tell you after you've received an HIV positive test result is that Disease Intervention Specialist- using police powers- will dig up enough information on you to reach out to these people regardless of whether you willing share their contact information or not.
Data to Care (D2C) is a public health strategy that uses HIV surveillance and other data to
support the HIV Care Continuum, by identifying persons living with HIV who are in need of
HIV medical care or other services and facilitating linkage to these services. D2C approaches may vary in scope and design. Some examples of D2C activities include
using HIV surveillance data routinely collected by state and local health departments and
other data sources to:
Data to Care (D2C) is a public health strategy that uses HIV surveillance and other data to
support the HIV Care Continuum, by identifying persons living with HIV who are in need of
HIV medical care or other services and facilitating linkage to these services. D2C approaches may vary in scope and design. Some examples of D2C activities include
using HIV surveillance data routinely collected by state and local health departments and
other data sources to:
- Identify persons who are not in care (NIC) and then link or re-engage them in care
- Identify persons who are in care but are not virally suppressed and work with the clients and their providers to support attaining viral suppression or
- Identify pregnant women or mothers and their exposed infants who may need coordinated services (perinatal HIV services coordination).
- Identify persons prescribed HIV prescription medicines who have not filled or renewed their prescriptions (Data to Care Rx).
Surveillance data are used to identify and create a list of persons in need of follow-up. Persons are
identified by using surveillance data or provider data linked to surveillance data. Together they create a behavioral and epidemiologic program of the person. And, when enriched with MHS and CDR information, create an image of the individual in society, including their social and sexual networks, be they known to them or not. The potential use, reuse, and misuse of the surveillance infrastructure is alarming, especially in the context of a quintessential fascist bloom in the US.
identified by using surveillance data or provider data linked to surveillance data. Together they create a behavioral and epidemiologic program of the person. And, when enriched with MHS and CDR information, create an image of the individual in society, including their social and sexual networks, be they known to them or not. The potential use, reuse, and misuse of the surveillance infrastructure is alarming, especially in the context of a quintessential fascist bloom in the US.
And example of the fascist bloom:
Just yesterday, 8/29/25 source, top leaders from CDC were fired, leading others to resign in solidarity and protest of the Trump administration's use of HHS oversight power to deconstruct and alter the principles of public health and medical research in this country. As exhaustive description of this fascist takeover of the nation's health infrastructure will come later. For now, here's a sample I came across this morning of the pettiness (and precision) of His project:
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| I found this while looking for the data collected by MMP at CDC. |
With the amount of information collected and the systems already set up to literally see through you- MHS- what is to stop Trump and his ilk from using it against PLHIV? From restraint and segregation? folks, as was done in To criminalize us. Making list has never benefited those on it.
How do they use and reuse this data and where is it all stored?
As an epidemiologist, I know that the data collected is primarily used to develop community, regional, and state profiles of an epidemic. It's basic descriptive statistics that give us an overall picture of what's going on. More advanced statistics are used to answer questions related to resources allocation and interventional strategies. None of these uses are problematic.
Less than 5% of cases related to HIV in the United States actually involve transmission. Most of them boil down to whether the HIV positive person can prove that that they disclose their status to their partner in advance of intimate physical contact. It doesn’t matter whether there was even a risk for HIV transmission, for example, if no fluids were exchanged or if condoms were used or if it was simply oral sex; none of these situations result in HIV infection. Cases in New York and Texas, even with neither state having laws that are HIV specific, prosecuted individuals living with HIV for multiple decades, and forced them on the registry for sexual offenders, simply for spitting – which was defined by a judge as a deadly weapon, even though the science is clear that HIV cannot be transmitted through spit. Examples from North Carolina and Idaho, as well as a case from the US Army all involved sexual partners that did not want the other to be charged and involved condom use. The person living with HIV and all of those cases was prosecuted, so altogether it seems like it’s not actually about prevention of HIV itself more than it is about prosecution of the persons with HIV as a viral under class.
This undercut the entire public health message of shared responsibilities and the idea that people should act in such a way as to maintain their own health and protect themselves from contracting HIV or any other sexually transmitted infection or any other infection in general will be at Covid, the flu, monkeypox, smallpox, etc. The entire burden of prevention becomes the responsibility of the HIV positive person…
One study looked at every case of prostitution and assault statues to identify correlates of risk for HIV specific laws and found that people charged and living with HIV received significantly more severe penalties because of their status which would only have been known if it were for other laws that allow for the sheriffs department or the police department as a jail to test you for infectious disease before entry.
So not only are we forcing people to undergo medical procedures we are criminalizing them for the results.
The first HIV criminalization law in the United States was passed in the late 80s largely in response to the provision of Ryan White care act which require states in order to qualify for funding to demonstrate an ability to prosecute what was then labeled intentional transmission. These laws were created out of fear, a lack of understanding, government, denial, and hatred for Black people migrating from Haiti and other parts of the world to the United States, homosexual, reclaiming their rights and coming out of the closet, post sexual revolution, and a desire to remove the degenerate that were using needle face drugs during this time. Investment once the virus was able to be managed by antiretroviral therapy in the mid 90s the perception that people living with HIV were a pitiful group doomed to die shifted to a group who’s living longer and are now viral vectors potential infectors.
Living longer people living with HIV would be around longer to infect others according to this logic. And both the Criminal justice system, and the public health system began to define and treat people living with HIV is a dangerous population. One that needed to be sold out track down tested reported listed tag monitored regulated, increasingly criminalized through widespread surveillance.
This is the primary reason why when I was working on the HIV decriminalization laws in Virginia that I was trying to get the groups to understand the medical legal context from which this information came in the first place so we could address it properly through the perspective of history and public health Risk management.
The laws punish those who know their status and privileges the ignorance of not knowing your status; because you can only be prosecuted if you knew you had HIV and didn't disclose it with proof.
Epidemiology shows us that new cases of HIV transmitted disproportionally by people who do not know their status and have not received an HIV test. Individuals who know their HIV status are significantly less likely to transmit HIV to others who do not have it. So the laws are having a reverse effect on the prevention of HIV.
A survey conducted by SERO Project in 2012 show 25% of respondent we’re afraid to get tested out of fear of criminalization.People who test positive for HIV also fear disease prevention measures like partner notification programs, and are less likely to be adherent to their treatment plan if the state has criminal laws that are HIV specific.
To EHE we need to repeal HIV criminalization statues to protect the rights of people with HIV and to reduce the transmission of HIV we do not need to continue building additional surveillance systems that increase the capacity for incarceration and criminalization. Anyone who demonstrates a premeditated, malicious intent to harm another person like intentionally giving someone HIV can be prosecuted under existing assault statues. There is absolutely no point in having HIV specific laws which are documented to stigmatize people and discourage access to services worsening the epidemic and feeding the blood lust for punishment.
Speaking of lists, I’ve compiled a list of all of the software, instrumentation, and computational technologies associated with the Molecular HIV Surveillance , genetic sequencing, and cluster detection programs. These are only descriptions collected from manuals and secondary sources, My goal is to develop primary definitions from first-hand accounting; and then map them with the individual-who-recently-tested-HIV-positive at the center, and the data use, reuse, and pathways for sharing moving outward from there.
Sequencing Tools and Databases
Molecular and Bioinformatic Tools
- HIV-TRACE (CDC + UC San Diego): Identifies transmission clusters using genetic distance.
- Nextstrain: Open-source platform for real-time pathogen evolution, adapted to HIV surveillance.
- MEGA (Molecular Evolutionary Genetics Analysis): Builds phylogenetic trees and calculates genetic distance.
- RAxML, IQ-TREE, FastTree: Software for inferring evolutionary trees.
Epidemiologic and Laboratory Software
- REDCap: Public health data collection and management.
- SAS, R, Python: Biostatistical tools for cluster detection, data linkage, and modeling.
- ESRI ArcGIS and QGIS: GIS systems to map HIV clustering.
- Secure HIV-TRACE and eHARS (enhanced HIV/AIDS Reporting System): National case reporting integrated with cluster detection.
- EHRs, Data Lakes (AWS GovCloud), APIs: Cross-platform data integration.
- CDC HIV Cluster Detection
- MicrobeTrace- CDC's network/phylogeny visualization tool
- Jurisdictional CDR plans using Secure HIV-Trace
- Cluster Response Tools
- Services (Prism, CAREWare): Tracks partner Notification and link
- Abbott Global Viral Surveillance Program
- Diagnostic assay ecosystems- Abbott RealTime HIV-1 viral load platforms
- Sequence data/analytics are shared with government in partnership projects
- RTRI- point of care assay HIV-1 Rapid Recency
- DoDSR, is one of the largest biological specimen collections in existence
- Laboratory Response Network
- BARDA (Biomedical Advanced Research and Development Authority) – Develops medical countermeasures (via programs like DDDI, DRIVe)
- Advanced Molecular Detection (AMD)
- ESSENCE (Electronic Surveillance System for the Early Notification of Community-Based Epidemics)
- Health Alert Network
- DoD: Global Emerging Infections Surveillance (GEIS) – Supports lab surveillance and outbreak response
- AFRIMS (Armed Forces Research Institute of Medical Sciences)
- Biological Engagement Program (BEP)
- USAID Global Health Security Programs Cross-Cutting, Strategy & Oversight
- National Biodefense Strategy & American Pandemic Preparedness Plan – Coordinated strategy and infrastructure for biodefense
- Information Sharing Environment (ISE) – Facilitates cross-agency info sharing across homeland security, defense, health, intelligence (CDC, FDA, HRSA, DOD, NIH, VHA, US Military)
- Global Health Security Coordination – NSC, PEPFAR, NIH, FDA, HHS policy offices, and Fogarty Center all contribute to biosecurity governance and capacity
- Cluster Detection
- Biostatistical and Epidemiological Analysis
- Surveillance and Data Integration
- GIS and Mapping
- Response Tracking
What's next?
Integrated, these systems impose a new order, a harmony of interconnection, a microcosm of power and influence. This is, of course, an esoteric interpretation; but it does follow- and there's no need not to use the full scope of knowledge available- especially when there's no institutionally-imposed constraints on my mind.As an epidemiologist, I know that the data collected is primarily used to develop community, regional, and state profiles of an epidemic. It's basic descriptive statistics that give us an overall picture of what's going on. More advanced statistics are used to answer questions related to resources allocation and interventional strategies. None of these uses are problematic.
However, one of the issues I have with the genetic information the state is collecting is that we don't have access to it anymore and don't know what knowledge was gained from its use or reuse, or in what contexts and by whom it was analyzed. There is no transparency whatsoever regarding their work in this area, other than to say that it is the public's interests. And example from the first HIV epidemic can provide us insight on the potential misuse, (or the effects of nonuse) of this information. We go back, 70 years ago to the heart of Africa's most diverse region, now called Congo.
Contextualizing Complicity from Coloniality to Capitalism
In Surveillance Series I, I described how frozen samples of blood "rediscovered" in Kinshasa became the primary evidence for the origins of HIV; making Congo the epicenter of the global pandemic. The sample was collected from a man in Leopoldville, now Kinshasa, in 1959, without his consent.
The region was ruled by a private corporation owned by the king of Belgium. Working in collaboration with the Laboratoire Médico-Chirurgical de Léopoldville and later associated with the Université Lovanium (founded in 1954, run largely by Belgian Catholic institutions), colonial biomedical researchers were engaged in epidemiologic monitoring of disease outbreaks and surveillance of the workforce to ensure maximum productivity and profit. Whether they new what they were looking at or not, Molecular Clock Analysis tells us that the virus was spreading in that region as early as 1884; so with both observational and analytic data in hand, they just missed it somehow. Perhaps the focus was so deeply on the protecting of white administrators and the labor power that paid them; perhaps they unsaw the virus.
Either way, there are too many parallels between the African context and contemporary American setting: extracting blood from someone without consent, using it in biomedical research, lack of transparency, no knowledge sharing, collaboration by state and corporate agency, and reuse/rediscovery by someone else who used it for something else; are too bold to ignore.
The region was ruled by a private corporation owned by the king of Belgium. Working in collaboration with the Laboratoire Médico-Chirurgical de Léopoldville and later associated with the Université Lovanium (founded in 1954, run largely by Belgian Catholic institutions), colonial biomedical researchers were engaged in epidemiologic monitoring of disease outbreaks and surveillance of the workforce to ensure maximum productivity and profit. Whether they new what they were looking at or not, Molecular Clock Analysis tells us that the virus was spreading in that region as early as 1884; so with both observational and analytic data in hand, they just missed it somehow. Perhaps the focus was so deeply on the protecting of white administrators and the labor power that paid them; perhaps they unsaw the virus.
Either way, there are too many parallels between the African context and contemporary American setting: extracting blood from someone without consent, using it in biomedical research, lack of transparency, no knowledge sharing, collaboration by state and corporate agency, and reuse/rediscovery by someone else who used it for something else; are too bold to ignore.
Coloniality became Capital but the principles of surveillance stayed the same, even after the emperor changed his clothes (Britain to US).
What now?
The relationship between HIV surveillance data and criminalization reveals the tension between public health and punitive systems. Surveillance systems are designed to monitor HIV diagnoses, treatment engagement, and viral suppression rates; they rely on highly identifiable information. Yet in jurisdictions where HIV exposure, nondisclosure, or transmission is criminalized, these data can be weaponized against people living with HIV. Prosecutors may subpoena surveillance records to prove that an individual knew their status, the date of diagnosis, or their viral load at a given time. This undermines the original intent of surveillance, shifting it from a tool for population health to an instrument of punishment. As a result, communities most affected by HIV—Black and brown populations, queer and trans people, sex workers, and migrants—face heightened risk of both state surveillance and criminalization. Fear of data misuse erodes trust in public health systems, potentially discouraging HIV testing and care. Thus, surveillance and criminalization intersect as mechanisms of structural violence, reinforcing stigma while hindering prevention efforts.
Less than 5% of cases related to HIV in the United States actually involve transmission. Most of them boil down to whether the HIV positive person can prove that that they disclose their status to their partner in advance of intimate physical contact. It doesn’t matter whether there was even a risk for HIV transmission, for example, if no fluids were exchanged or if condoms were used or if it was simply oral sex; none of these situations result in HIV infection. Cases in New York and Texas, even with neither state having laws that are HIV specific, prosecuted individuals living with HIV for multiple decades, and forced them on the registry for sexual offenders, simply for spitting – which was defined by a judge as a deadly weapon, even though the science is clear that HIV cannot be transmitted through spit. Examples from North Carolina and Idaho, as well as a case from the US Army all involved sexual partners that did not want the other to be charged and involved condom use. The person living with HIV and all of those cases was prosecuted, so altogether it seems like it’s not actually about prevention of HIV itself more than it is about prosecution of the persons with HIV as a viral under class.
This undercut the entire public health message of shared responsibilities and the idea that people should act in such a way as to maintain their own health and protect themselves from contracting HIV or any other sexually transmitted infection or any other infection in general will be at Covid, the flu, monkeypox, smallpox, etc. The entire burden of prevention becomes the responsibility of the HIV positive person…
One study looked at every case of prostitution and assault statues to identify correlates of risk for HIV specific laws and found that people charged and living with HIV received significantly more severe penalties because of their status which would only have been known if it were for other laws that allow for the sheriffs department or the police department as a jail to test you for infectious disease before entry.
So not only are we forcing people to undergo medical procedures we are criminalizing them for the results.
The first HIV criminalization law in the United States was passed in the late 80s largely in response to the provision of Ryan White care act which require states in order to qualify for funding to demonstrate an ability to prosecute what was then labeled intentional transmission. These laws were created out of fear, a lack of understanding, government, denial, and hatred for Black people migrating from Haiti and other parts of the world to the United States, homosexual, reclaiming their rights and coming out of the closet, post sexual revolution, and a desire to remove the degenerate that were using needle face drugs during this time. Investment once the virus was able to be managed by antiretroviral therapy in the mid 90s the perception that people living with HIV were a pitiful group doomed to die shifted to a group who’s living longer and are now viral vectors potential infectors.
Living longer people living with HIV would be around longer to infect others according to this logic. And both the Criminal justice system, and the public health system began to define and treat people living with HIV is a dangerous population. One that needed to be sold out track down tested reported listed tag monitored regulated, increasingly criminalized through widespread surveillance.
This is the primary reason why when I was working on the HIV decriminalization laws in Virginia that I was trying to get the groups to understand the medical legal context from which this information came in the first place so we could address it properly through the perspective of history and public health Risk management.
The laws punish those who know their status and privileges the ignorance of not knowing your status; because you can only be prosecuted if you knew you had HIV and didn't disclose it with proof.
Epidemiology shows us that new cases of HIV transmitted disproportionally by people who do not know their status and have not received an HIV test. Individuals who know their HIV status are significantly less likely to transmit HIV to others who do not have it. So the laws are having a reverse effect on the prevention of HIV.
A survey conducted by SERO Project in 2012 show 25% of respondent we’re afraid to get tested out of fear of criminalization.People who test positive for HIV also fear disease prevention measures like partner notification programs, and are less likely to be adherent to their treatment plan if the state has criminal laws that are HIV specific.
To EHE we need to repeal HIV criminalization statues to protect the rights of people with HIV and to reduce the transmission of HIV we do not need to continue building additional surveillance systems that increase the capacity for incarceration and criminalization. Anyone who demonstrates a premeditated, malicious intent to harm another person like intentionally giving someone HIV can be prosecuted under existing assault statues. There is absolutely no point in having HIV specific laws which are documented to stigmatize people and discourage access to services worsening the epidemic and feeding the blood lust for punishment.
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