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By: Marcus J. Hopkins
December 1st, 2023
Last year, on #WorldAIDSDay, the Appalachian Learning Initiative (APPLI, pronounced like "apply") highlighted the differences in #HIV transmission modes in different parts of #Appalachia:
The first thing to understand about the HIV epidemic in Appalachia is that the region faces two different epidemics with two separate modes of transmission:
HIV transmissions that occur primarily via sexual modes of transmission.
HIV transmissions that occur as a result of Injection Drug Use (IDU). (Hopkins, 2022)
Rather than rehash what we discussed last year, we're focusing on providing our readers with the latest data and the findings of our most recent research examining the links between #AdultLiteracy and health behaviors and outcomes, including HIV.
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New Data on HIV Transmission in the Appalachian Region
The number of new HIV diagnoses increased in Appalachian jurisdictions in 2021 compared to 2019 (National Center for HIV, Viral Hepatitis, STD, and TB Prevention, 2023). Data from 2020 is largely considered unreliable due to COVID-19-related interruptions in standard testing protocols.
2021 was the first year that relatively normal levels of HIV testing and surveillance resumed after the initial COVID-19 outbreak in 2020. During that time, the number of HIV tests administered nationally decreased by around 15%, or roughly 1.35 million fewer tests. New diagnoses reported to the Centers for Disease Control and Prevention (CDC) decreased by 17% (DiNenno et al., 2022).
This decrease in testing occurred because of COVID-related temporary or longer-term shutdowns that impacted the ability of organizations and providers to reach patient populations. While 2021 saw some improvement, testing administration data for 2021 are either not finalized or insufficiently reported to determine whether or not HIV testing was back to full capacity.
In 2021, Cabell County and Kanawha Counties in #WestVirginia saw continued increases in new HIV diagnoses as the result of two separate and still-uncontained HIV outbreaks among Persons Who Inject Drugs (PWID). Cabell County was one of two Appalachian Counties—the other being Clay County, #Mississippi, in the top twenty counties for rates of HIV diagnoses in the country.
Clay County had the 18th-highest rate, with a rate of 44.7 per 100k residents, and Cabell County had the 20th-highest rate, with a rate of 42.4. Kanawha County ranked 42nd-highest, with a rate of 35.2, and was one of only three Appalachian counties in the United States to fall into the fifty counties with the highest rates of HIV diagnoses.
The Long-Term Impacts of COVID-19 on HIV Testing
During the pandemic-related service interruptions, many HIV advocates argued that HIV testing and outreach would be negatively impacted for several years, even after the pandemic. As a researcher and policy expert on HIV and Viral Hepatitis, I was one of those advocates.
We know that mistrust of the American healthcare system has been rapidly growing over the past three decades. The COVID-19 pandemic hastened that increase, with consumer trust in physicians and hospitals decreasing by 23% and 21%, respectively. (Jain, 2023). This means that, in just two years, less than 50% of Americans trust any source of healthcare information.
Patients are already predisposed to avoiding testing for sexually transmitted infections (STIs) for several reasons, including:
They believe they have no infection, as they experience no symptoms.
They believe STD testing is costly.
They feel embarrassed.
They feel scared to undergo a test and think it will be painful.
The idea of coming positive in [a] test scares them. (STD Express Clinic, 2021).
Additionally, testing for HIV has not, now, nor has it ever been routinized as part of regular healthcare visits. In the American healthcare system, with rare exceptions, HIV testing is either reactive to someone coming in specifically for testing or reactively provided to someone coming in specifically for testing or reactively provided in a specific jurisdiction or to a specific population because of increased risk factors for transmission.
So, what do I mean when I say that?
In Appalachian counties, HIV testing is provided mainly to patients who come in specifically for testing or by targeted testing drives located in places where specific patient populations are likely to gather, such as Black churches and cultural events in Southern Appalachian counties.
In the #AppalachianRegion, HIV testing outside of the few urban and suburban areas is virtually inaccessible for people living in #Rural areas, in part because of the reactive nature of our healthcare system.
For example, in the state of West Virginia, where APPLI is based, the vast majority of HIV testing occurs in Charleston, Huntington, and Morgantown—the state's most populous cities. Testing that occurs outside of those cities is primarily conducted at hospitals in emergency rooms due to a 2019 emergency declaration that mandates all patients admitted to an urgent care clinic or emergency room receive opt-out testing for both HIV and Hepatitis C. Opt-out test delivery has been shown to result in higher participation in testing, making it ideal in healthcare settings to identify more cases of HIV and other diseases, which may reduce the risk of transmission (Soh et al., 2022).
This mandate came to pass in reaction to the two aforementioned outbreaks in Cabell and Kanawha Counties, and at first, it worked well.
And then came the pandemic.
In response to the COVID-related service interruptions, a small handful of Community-Based Organizations—including the Charleston-based WV Health Right and the Morgantown-based MP Health Right (no connection)—stepped up to begin providing the bulk of HIV testing services in collaboration with the state Department of Health and Human Resources (DHHR).
And now, that's where testing begins and ends—with a handful of non-profit organizations doing the work with limited support from the hospitals who have since neglected to follow through on the 2019 mandate.
Even then, testing for HIV in West Virginia, as well as other parts of Central Appalachia, means overcoming the fears of PWID populations who are already less likely than the general population to seek care for fear of mistreatment, of having their healthcare needs ignored, and/or of risking arrest for their drug-related issues.
The decreasing trust in healthcare providers now compounds these additional barriers.
These hurdles may take years to overcome before we, as a nation and region, begin seeing testing levels return to pre-pandemic levels, much less expand their reach.
APPLI's Findings on the Link Between Adult Literacy and HIV Diagnosis
APPLI published its first major research paper, Adult Literacy Proficiency and Public Health in Appalachia, in October of 2023. This research examined the links between #AdultLiteracy proficiency and 25 measures of public health, including both HIV Incidence and Prevalence.
What we found was that, in counties where adult reading proficiency was higher, so too were the rates of new HIV diagnoses.
This finding runs counter to the traditional axiom that, while HIV does not discriminate, people with lower levels of income and education are more likely to contract HIV than persons with higher levels of income and educational attainment.
This finding is intriguing because it could potentially expose a distinct deficiency in the ways in which we collect and report data when testing for HIV:
As I mentioned before, HIV testing in Appalachia is largely accessibly only in urban and suburban areas, where adults are more likely to have higher average levels of educational attainment and higher average incomes.
In addition to this, data collection and reporting for HIV testing (as well as testing for other STIs) is extremely and notoriously incomplete. Reviews of most detailed reports indicates that significant points of data, including race, ethnicity, and city or county of residence, are regularly missing or incomplete. This may be because people who administer HIV tests are trying to keep barriers low in order to increase testing uptake.
It also means that patients who travel to urban and suburban areas to receive medical services and HIV testing are not having any positive test results they may receive associated with their county of residence. This results in a positive test result being logged in Cabell County, for example, when a patient actually lives in Wayne or Mingo County, resulting in HIV diagnosis rates that are artificially high in Cabell County and artifically low in Wayne or Mingo County.
This is a particularly concern when the HIV diagnoses in question are likely the result of transmission via injection drug use. We know that many rural PWID travel to larger cities, like Huntington. in Cabell County, to purchase illicit drugs in addition to going there to access whatever healthcare services they need.
APPLI will likely continue to research this link in 2024.
Where People Living with HIV/AIDS Reside in Appalachia
Another area where reporting is notoriously absent relates to reporting where PLWHA live.
While the Appalachian states of Georgia, Maryland, and Pennsylvania have relatively high numbers of PLWHA living within their borders, most of them live in more urban areas that are not located in Appalachian counties.
For example, a significant percentage of the PLWHA in Georgia live in the city of Atlanta, which borders Appalachia but does not reside therein. The same is true of Baltimore and the District of Columbia in Maryland and Philadelphia in Pennsylvania.
As a result, Appalachian counties report having significantly lower numers of PLWHA, with the exception of Southern Appalachian counties in Alabama, such as Jefferson County (the most populous county in Alabama and home to Birmingham), and Douglas County, Georgia (a county that is technically part of the Atlanta Metropolitan Area, but is at the edge of the Appalachian Mountain Region, rather than in Atlanta proper).
This, again, may be because of insufficient reporting of where people living with HIV acutally live, rather than where they go to receive treatment. This is another area where APPLI will continue to expand our research in the coming years.
The Road Ahead for HIV in the Appalachian Region
There is much work to be done in order to address both the existing and unidentified needs of people living with HIV. In the end, the solutions largely come down to matters of electing people with and creating the political in already elected officials, and securing the funding to make policy decisions that could result in game-changing progress in the fight against HIV.
The most pressing policy change for which APPLI is advocating is the routinization of HIV testing as part of routine healthcare visits. We need to create a landscape where patients are regularly tested once they become sexually active, and the best way to do that is through any and every annual physical, reproductive health examinations (including gynecological and obstetric visits), and any other easy-to-access points of care on an annual basis.
Secondarily, we need to drastically improve data collection and reporting, much of which is lacking because services are contracted out to non-profit organizations who have limited bandwidth and budgets to fully record and report testing encounters. It also requires increasing funding for every step of the testing process (rapid and confirmatory testing, for example), as well as for surveillance.
This #WorldAIDSDay2023, we invite our followers to both get tested for HIV if they have not, and to reach out to their local and state elected officials to get involved in improving HIV and STI testing protocols and policies.
References
DiNenno, E. A., Delaney, K. P., Pitasi, M. A., MacGowan, R., Miles, G., Dailey, A., Courtenay-Quirk, C., Byrd, K., Thomas, D., Brooks, J. T., Daskalakis, D., & Collins, N. (2022, June 24). HIV testing before and during the COVID-19 pandemic — United States, 2019–2020. Morbidity and Mortality Weekly Report, 71(25), 820-824. http://dx.doi.org/10.15585/mmwr.mm7125a2
Hopkins, M. J. (2022, December 01). HIV in Appalachia: A tale of syndemics. Morgantown, WV: Appalachian Learning Initiative: News. https://www.appli.org/post/hiv-in-appalachia-a-tale-of-syndemics
Jain. S. (2023, March 05). The COVID-19 pandemic amplified feelings of mistrust in and frustration with the U.S. healthcare system. Brentwood, TN: Trilliant Health: The Compass. https://www.trillianthealth.com/insights/the-compass/the-covid-19-pandemic-amplified-feelings-of-mistrust-in-and-frustration-with-the-u.s.-healthcare-system
National Center for HIV, Viral Hepatitis, STD, and TB Prevention. (2023, February 21). NCHHSTP AtlasPlus. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV, Viral Hepatitis, STD, and TB Prevention. https://gis.cdc.gov/grasp/nchhstpatlas/tables.html
Soh, Q. R., Oh, L. Y. J., Chow, E. P. F., Johnson, C. C., Jamil, M. S., & Ong, J. J. (2022). HIV testing uptake according to opt-in, opt-out or risk-based testing approaches: A Systematic review and meta-analysis. Current HIV/AIDS Reports, 19(5), 375-383. https://doi.org/10.1007%2Fs11904-022-00614-0
STD Express Clinic. (2021, January 08). 5 top reasons people do not undergo STD testing. Arlington, VA: STD Express Clinic. https://www.stdexpressclinic.com/blog/std-clinic-near-pentagon-city/5-top-reasons-people-do-not-undergo-std-testing/
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