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May 25, 2020

Infectious Disease Testing in Rural America

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Marcus J. Hopkins
Policy Coordinator
Community Education Group

By: Marcus J. Hopkins

When I first tested HIV-positive, I was living in Atlanta, GA.  It was April 12th, 2005, and I was 23 and unready to face my diagnosis.  I ignored it, for two years, in part of that unpreparedness, and in part because, at the time, the treatment recommendation was to not initiate treatment until patients were diagnosed as having AIDS, the qualification for which is having one’s CD4 cell count drop below 200 cells per mm3

On October 17th, 2007, after being admitted to Broward General in Ft. Lauderdale, FL, I had them run my numbers, after ignoring them for over two years, and that CD4 count came back at 67.

It was official – I had AIDS.

Once I got a doctor and got prescribed my medications, I went to a Rite Aid with my supposedly full-coverage employer-provided insurance, only to be told that, after filling the scrip for one of my three medications, my insurance was maxed out, and I wouldn’t be able to get the drugs I desperately needed.  I’m not really a big “crier,” but at that time, I wept in a pharmacy.

Luckily, my then-partner lived with a man who would later form the ADAP Advocacy Association (aaa+) who told me about the Ryan White Act and how to get coverage for my medications.  After jumping through several hurdles, including gathering tax documents, paycheck stubs, a birth certificate, two forms of photo identification, and selling a kidney (that last one isn’t a thing), I was able to get an appointment and get approved for the AIDS Drug Assistance Program (ADAP).

I began taking meds on November 19th, 2007, and by Valentine’s Day, 2008, my viral load (the number of actively replicating HIV virus in my blood) was undetectable, where I have remained, with the exception of two months, for over 13 years.

During that time, I have moved from Florida to Tennessee, from Tennessee to California, and from California to West Virginia, and during those moves, I encountered a unique phenomenon: HIV testing has largely failed to reach rural America.

I know, right?  It’s 2020 – nearly forty years after the Centers for Disease Control and Prevention (CDC) published the first article directly related to what was then called GRID (Gay-Related Immune Deficiency) in the June 5th, 1981 Morbidity and Mortality Weekly Report (MMWR) - Pneumocystis Pneumonia – Los Angeles (CDC, 1981).  One would think that, after four decades, rural America would have its collective "stuff" together and be testing its population, right?

Unfortunately, no.

Both in Tennessee (specifically, Northeast Tennessee in the Appalachian Mountains), and in West Virginia, outside of the few metro areas, HIV testing has not been a priority.  For the very same reason that doctors in this part of the country told patients not to worry about getting vaccinated for Hepatitis B (HBV), people living in rural America – particularly in the geographically isolated Appalachian Mountain region – have been living under the shared illusion that their isolation has served as a good enough preventative measure against infectious diseases.  Worse, still, is that these Americans have been told that this is the case, not only by physicians who should know better, but by the people whom they elect into office.

This has been a common refrain about every epidemic in human history:

“This is a big city problem!  We don’t have to worry about heroin/meth/HBV/HCV/HIV/STDs/STIs/COVID-19, here!  Our folks are better than that!”

This prevailing theme has been proven false not just in the recent past, but over the course of millennia.  The people who believed that the rich, the politically empowered, and the men of the cloth (e.g. – priests) would never contract the plague in 14th Century Europe are the very same people who have claimed that those of us who live in rural America don’t have to worry about the ills of urban society, because our “goodness” protects us.

Perhaps, they should go and reread accounts from the 14th Century that depict entire monasteries filled with the bodies of the dead.  If that’s too far back for them to look, they might simply look at the recently discovered rural Plague Pit found in Lincolnshire, England on the site of a 14th Century monastery filled with 48 bodies, including more than two-dozen children (Sharman, 2020).

Dr. Hugh Willmott, one of the workers at the Thornton Abbey archaeology dig site in rural England said this:

"The finding of a previously unknown and completely unexpected mass burial dating to this period in a quiet corner of rural Lincolnshire is thus far unique, and sheds light into the real difficulties faced by a small community ill-prepared to face such a devastating threat." (Sharman)

This assessment of past preparedness should serve as a dark portent of things to come, not only as they related to the burgeoning rates of new HIV diagnoses directly linked to Injection Drug Use (IDU), such as West Virginia has seen in the past three years), but as it relates to another, more pressing concern: COVID-19.

Having lived in West Virginia, again, for seven years, and carrying the banner that reads: “We must begin offering opt-out testing for Viral Hepatitis and HIV to every single person at every single medical appointment, regardless of specialty” (a long, unwieldy banner to carry, to be certain), I, along with others who work in the Infectious Disease space, have been sounding the alarm about COVID-19, as well.  Sadly – and yet, unsurprisingly – I have encountered much the same mindset about COVID-19 as I did when waving the HIV testing flag: “It can’t happen, here.”

Once COVID-19 really hits rural America – particularly the geographically isolated Appalachian Mountain region (I know…I keep hammering this description home) – rural America is not ready to respond.  We do not have in place the kind of rural public health infrastructure that is necessary to effectively respond to an outbreak in rural regions.

People who travel from rural areas to the suburbs or urban areas of their state for work will contract COVID-19.  They will carry that virus back to their loved ones, at home, as well as to every person they encounter, along the way.

Once they begin to shed virus, every single point of contact becomes a potential point of infection.

Once they begin to show symptoms, they will have to travel back into the suburban and urban medical facilities for diagnosis, treatment, and, potentially, intensive care, and each person they encounter along the way has the potential to contract the virus.

This has been the course of every viral pandemic outbreak in human history.  It isn’t just a random prediction; it’s a pattern that repeats itself, every single time.  Sadly, Americans don’t seem to learn these lessons for ourselves, until someone we personally know and love dies.

Photo of the state of West Virginia outline with counties shaded red where confirmed cases of COVID-19 have been identified.  Counties without diagnoses are colored in grey.
Only four counties in West Virginia have no confirmed COVID-19 diagnoses

WBOY 12 in Clarksburg, WV has a running tally on new cases and deaths in the state of West Virginia (here) that reported an increase of 42 cases in the state since May 23rd, 2020 at 5:00 PM.  To most people, “42 new cases” doesn’t sound like a lot, compared to the overall population of the state.

When you think about the fact that those 42 patients will likely come into contact with at least three people (potentially creating 126 new diagnoses), and those three people will likely come into contact with at least another three people (378 more diagnoses, on top of the original 168)…like a 1980s Fabergé Organics shampoo commercial, only without the benefit of “…super fresh-smelling hair”.

Disclaimer: Blog posts on CEG’s Community Perspectives blog do not necessarily reflect the views of the Community Education Group, its grantors, its corporate sponsors, or its organizational partners, but rather they provide a neutral platform whereby each author serves to promote open, honest discussion about issues specific to their personal expertise, lived experience, and perspective. Please note that some of the content on Community Perspectives may be graphic due to the nature of the issues being addressed by the author.

It was these thoughts I was thinking, this morning, as I ventured to a Walmart in Grafton, West Virginia, to pick up something my mother had ordered, and saw only store employees and a handful of shoppers wearing facemasks (myself, included).

There was no social distancing; no facemasks to be found.  As I waiting to pick up my mother’s item, I listened to the haunting strains of Naked Eyes’ “Always Something There to Remind Me” and thought to myself, “I wonder if these people will remember this day as the day they contracted COVID-19.

References

Centers for Disease Control and Prevention. (1981, June 05). Pneumocystis Pneumonia --- Los Angeles. Morbidity and Mortality Weekly Report, 30(21), 1-3. Retrieved from: https://www.cdc.gov/mmwr/preview/mmwrhtml/june_5.htm

Sharman, J. (2020, February 19). Medieval Black Death burial site in Lincolnshire uproots previous theories about plague. London, United Kingdom: Independent Digital News & Media Limited: The Independent: News: Science: Archaeology. Retrieved from: https://www.independent.co.uk/news/science/archaeology/black-death-mass-grave-uk-lincolnshire-thornton-abbey-plague-a9344091.html

CEG is a national organization that offers local programs and policy solutions.

We serving diverse populations, prioritizing indigenous populations and populations in need

CEG's work includes Direct Service programs, Policy work, and Capacity Building

Disclaimer: Blog posts on CEG’s Community Perspectives blog do not necessarily reflect the views of the Community Education Group, its grantors, its corporate sponsors, or its organizational partners, but rather they provide a neutral platform whereby each author serves to promote open, honest discussion about issues specific to their personal expertise, lived experience, and perspective. Please note that some of the content on Community Perspectives may be graphic due to the nature of the issues being addressed by the author.

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