Introduction
This is an ethnographic record
of the founding of Molecular HIV Surveillance (MHS), Rapid Cluster Detection
and Response program of **Department of Health, written as an email
reply to my initial correspondence, which I have also included for reference. The
author happens to be an old friend of mine, whom I did not know was responsible
for the development of this program; but after learning about her integral role
in operationalizing the call to action by CDC, I reached out immediately. Our historical
relationship afforded me an opportunity to be more familiar about the issue and
inquires I have about MHS, which prompted the following narrative.
From the source email:
I did the outreach
to laboratories to try to get them to voluntarily submit the genotypes
to us (since they weren’t legally reportable yet so, technically, they did not
have to send us anything). We had legislation working its way through so
we knew (and hoped) it would just be a matter of time before genotypes would be
legally reportable and that's really what I pushed to the labs -- start the
onboarding process now so you won't be SOL when the legislation passes! I would
work with the labs from that point through the ELR validation process (if they
were able to send via ELR/HL7). We had some labs where their set up was not
able to do that so they sent us csv files through an sFTP.
Eventually the legislation passed and genotypes are now reportable - woo.
Besides getting labs onboard, I also wrote a ton of sas codes to
process, qa, and analyze the genotypes as well as cluster data.
I'm assuming
you're familiar with eHARS (but if not, it's the HIV surveillance
system).
1. We'd get the genos, validate and QA them, link
them to the correct people in eHARS, and have them imported.
2. If
a geno did not match to a person, we'd send it over to the Case
Surveillance team to research (since you can't have a geno and be
HIV-). Besides the surveillance aspect,
3. we did cluster investigations as
well. We were one of maybe 2 jurisdictions who really started this
first. There was a software called HIVTrace at the time that we could submit
genos to and it would compare them to a control strand and link them to each
other if they were similar. This detected clusters and gave us a ton of genetic
information (nothing on a personal level -- genetic info more relating to the cluster
and how similar each genotype was, etc.). It's worth mentioning that when I
was with the program, there was no real guidance yet. We were making it up as
we went, but worked closely with CDC and provided them with
guidance on more than one occasion ;)
Responses from the PH world were generally (but definitely not always!) positive & excited. Responses from the general public were generally concerned, uncomfortable, or even upset.
There was always a
huge misconception that by getting 'molecular data' aka viral
genotypes, we were getting genetic data from the person, which is not the case
at all. We gave presentations at so many different venues, like community
planning groups, conferences, training sessions for DIS, etc., and there were
always the folks who did not understand and were not happy. I think this is
what prompted the program to change it's name from MHS to CDR - no mention of
molecular surveillance or genotypes since they really were trigger
words for folks.
With all of that being
said, I haven't worked on MHS/CDR since 2018. I was on the panel for the new
CDR coordinator and have helped her & the CDR program manager with some of
the sas codes from time to time, but if you want to know more about what
they're doing now-days, I would highly suggest reaching out to them directly.
Her name is **********, and her supervisor is Garret Shields.
We used to have a webpage with some of the posters we'd done and other fact
sheets on it, but I just went to get the link and there's not a link for CDR.
Not sure why, unless it has to do with the push back.
Anyways, I've rambled
enough. I'm happy to answer any questions, but I can only provide answers from
my time with MHS and things may not be the same currently. ***** and ***** are both super awesome and willing to discuss CDR so I definitely encourage you
to reach out to them as well.
Hope you are doing well!
It's been a long time!
Her
Name
My original email:
Dear Her Name,
I hope you are well and finding some peace and joy in these pandemically-precarious times! For reference, this is Clay Porter, cousin of **************, reaching out to inquire about your work at *DH…specifically regarding Molecular HIV Surveillance and Cluster Detection programs; so, I hope you remember me and are willing/free to chat about this here or via phone/zoom. The next few paragraphs will summarize my interests and inquires for you as an employee of the state, as well as individual experienced (and interested?) in the program as a novel health initiative….I will try my best to be concise, but apologize/thank you in advance for taking the time to read the following texts. <3
Summary: My primary reason for reaching out to you is to inquire about the MHS/rapid cluster detection and response program at *DH, your role in its development and implementation, your role as an employee for *DH, and your thoughts-both personally and professionally- about the program at a variety of levels. There is limited information about this novel initiative available to the public and even less enthusiasm about its goings-on from internal staff. As an intern for *DH, Dept. of Epi-Div. of Inf. Disease, I have tried to locate the program within the state health system, with little to no meaningful end. After learning you were responsible for its development and implementation, I was surprised as much as overjoyed—who would have thought you, ****, and I would all end up working in public health!? What an eccentric yet extraordinary world it is indeed.
Ask: Is there a good time for you and I to speak via Zoom or whatever platform in the next few weeks or so? Let me know and I will make my schedule meet your availability.
Briefly: I have been working as an intern for ********** in Disease Prevention for over a year, on a variety of projects; namely, those efforts aimed at HIV/STI health law modernization, prevention, outreach, and advocacy and organization within the general assembly and wider stakeholder-community. My work with *DH in the role began in 2019 and has evolved into a formal partnership between myself, Eastern Virginia Medical School, *DH, and the apparatus of public health professionals invested- or personally involved- in HIV/STI-related health outcomes. However, my interests in your work is not part of my formal project as an intern with *DH…so, feel free to share both your professional and personal insights about this program, as they will only be used in an academic context.
My background: I graduated from VCU in 2012 with a B.S. in Anthropology and a B.A. in Religious Studies. Afterwards, I stayed in Richmond, working for whomever but volunteering for nonprofits, including Health Brigade, Daily Planet, and Minority Health Consortium. After publishing two scholarly works in 2009 and 2011 on HIV among African American and South African men, respectively, my focus has remained on the health of diverse communities and other minorities at-risk of HIV/AIDS, be it personal or professional, in both academic and applied settings. As a graduate student of epidemiology at EVMS, set to graduate in May, 2021, I am wrapping up some scholarship on HIV decriminalization, incident STI increases, and PrEP program uptake and effectiveness in Virginia; but moreover, am interested in expanding my personal/professional portfolio regarding molecular HIV surveillance and other rapid cluster detection systems in several studios- intellectually, professionally and personally. With over a decade of experience working in HIV/STI prevention, peer-reviewed publications, and subjective insight in culture, health, and sexuality, as someone living with HIV, my interests are multifaceted and interconnected.
Thus, I would appreciate your support in helping me learning as much as I can about Molecular HIV Surveillance and Rapid Cluster Detection, including anything you can share with me about its research and development at *DH, contemporary use in epidemiology and disease prevention, or implementational effectiveness in HIV/STI surveillance, is welcomed; as well as any ethical issues, program politics or legal concerns involved in its uptake in Virginia- embracing all biostatistical and cultural ecological topicality traversing this novel initiative.
I will be heading to Richmond soon to pick up me employee ID badge and agency laptop, so I’ll have an opportunity to meet you in person, even if only to say hi*. In the meantime, let me know when you are available to chat about this and other issues of interests, and I will be certain to make myself available.
Thank you for taking the time to review this lengthy letter and consider my request and I sincerely look forward to hearing from you soon.
Take care old*friend !
-Love-
Clay A. Porter, MPH
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