HIV in Appalachia—Combating Stigma Amid Growing Backlashes
By: Marcus J. Hopkins
July 21st, 2023
As a Person Living with HIV/AIDS (PLWHA) myself, the issue of HIV transmission in #Appalachia is incredibly personal. As an HIV policy expert and patient advocate, much of my work over the past two decades has been spent educating and increasing awareness of HIV in central Appalachia. This has included delivering lectures, serving on advisory boards and panels, and conducting research about the spread of HIV in the region. And as an expert in the field, I feel there is growing cause for concern.
While the rest of the United States spent the 1990s and 2000s bolstering its HIV testing and care infrastructures through the creation of AIDS Service Organizations (ASOs), many parts of Appalachia saw no such growth. This was largely a result of a handful of factors, including geographic isolation, low numbers of new HIV diagnoses outside of urban centers, and a perceived sense of safety from a disease that was ravaging the rest of the country.
Those circumstances have changed or are likely to change in the coming decade.
The vast majority of new HIV diagnoses in the United States occur as a result of sexual transmission. But counties in central Appalachia—particularly in Kentucky, southwestern Virginia, northeastern Tennesse, and West Virginia—are facing an increase in new HIV diagnoses among populations of Persons Who Inject Drugs (PWIDs).
In 2015, the United States was shocked by an HIV outbreak in Scott County, Indiana, among PWIDs that sparked a renewed interest in and acceptance of #HarmReduction Programs (HRPs) in states traditionally opposed to them. HRPs provide PWIDs with a variety of services, including #SyringeServicesPrograms (SSPs), infectious disease testing, wound care, and linkage to substance abuse treatment programs and counseling. #SSPs are a vital tool in preventing the spread of HIV, and have decades of research demonstrating their efficacy (Broz, et al., 2021).
The Scott County outbreak saw 235 people diagnosed with HIV related to Injection Drug Use (IDU), and served as a wake-up call for states that were disproportionately impacted by the #OpioidEpidemic, including Indiana, Ohio, Kentucky, West Virginia, Pennsylvania, Virginia, Tennessee, and North Carolina. In the immediate aftermath of the outbreak, states began legalizing and establishing sanctioned SSPs where none operated legally.
Ohio, Kentucky, and North Carolina began instituting state-sanctioned SSPs, while West Virginia allowed independent organizations and counties to open them. Governors, mayors, sheriffs, and public health officials across the region were, for the first time, moved by the following sentiment: "We don't want to become the next Scott County."
And then, the pendulum began to swing back.
The 2016 election of Donald J. Trump began a sea change in some Appalachian states that resulted in the composition of state legislatures becoming significantly more #Conservative and less willing to listen to scientific evidence when creating public policies or implementing public health measures. This change was exacerbated by the #COVID19 pandemic, when Conservative state legislators balked at scientifically valid and effective public health precautions, such as mandatory quarantines, mask mandates, and vaccine mandates. As a result of what many of these legislators deemed "government overreach" and "violations of American freedoms," the tide also began to turn against SSPs.
Since 2020, SSPs have closed in Indiana (including the one opened to respond to the Scott County HIV outbreak), Kentucky, Ohio, and West Virginia.
West Virginia's backlash against SSPs occurred at the worst possible time:
Prior to 2018, West Virginia saw an annual average of just 67 new HIV diagnoses. Beginning in 2018, the state began seeing significant increases in new diagnoses, more than half of which were directly related to Injection Drug Use. This outbreak of new diagnoses among PWIDs was further exacerbated by the state’s increasing hostility toward comprehensive harm reduction measures, specifically Syringe Services Programs (SSPs). Even in 2020, when COVID-19-related shutdowns led to a 2/3 reduction in the number of HIV tests administered in the state of West Virginia, the state identified 135 new HIV infections, of which 108 (80%) were directly related to IDU.
Since 2020, the state has struggled significantly with increasing provider buy-in for proactive HIV testing, leaving the bulk of HIV testing to be done in hospital emergency rooms during overdose events (using an opt-out delivery method that requires informed denial of testing) and by a mere handful of non-profit agencies and the state’s overworked, but extremely dedicated, Director of HIV Care and Prevention. This Director is one of the very few in the United States who regularly goes into communities to conduct testing events. His efforts are, however, hampered by inadequate levels of state and federal funding and increased scrutiny from a state legislature that continues to grow more hostile to HIV testing and prevention efforts.
According to the most recent report, West Virginia identified 140 new cases of HIV in 2022, of which 98 (70%) were directly attributed to IDU. 2023 is likely to be an equally devastating year, with 25 of the 48 cases identified to date (52.1%) being directly related to IDU (Hopkins, 2023).
In 2021, West Virginia significantly increased regulatory hurdles that required all existing SSPs to reapply for certification to open, implemented a requirement that both County Commissions and local legislatures approve of an SSPs establishment and allowed those entities to rescind approval and shutter the SSP at any time, and imposed operating restrictions that countermand best practices for operating an SSP.
HIV Surveillance in Appalachia
One of the most frustrating aspects of measuring HIV incidence in Appalachia is the fact that, of Appalachia's 423 counties and 8 independent Virginia cities, 204 jurisdictions have HIV incidence rates that are suppressed to protect the identities of patients. This usually occurs because there are very few new diagnoses in a county, which would make identifying people who were newly diagnosed much easier than in areas where the incidence is higher.
But there are still serious concerns: Two Appalachian counties—Clay County, Mississippi, and Cabell County, West Virginia—rank in the twenty counties with the highest incidence rates in the United States (18th and 20th, respectively). Kanawha County, West Virginia, ranks 42nd in the nation. And in these three counties, we see the distinct differences between transmission modalities: in Mississippi, HIV transmission is driven by sexual contact, whereas 97% of new HIV diagnoses in Cabell County were IDU-related, and 83.6% of HIV diagnoses in Kanawha County.
In addition to concerns about new HIV diagnoses, the prevalence of PLWHA has increased over time. Southern Appalachia—Mississippi, Alabama, Georgia, and South Carolina, in particular—have significantly higher numbers of PLWHA per 100k residents compared to Central and Northern Appalachian counties. In addition, 28 counties in Kentucky, New York, North Carolina, Ohio, Pennsylvania, Tennessee, Virginia, and West Virginia, have prevalence rates that are suppressed to protect patient identities.
Combating HIV Stigma in Appalachia
The primary drivers behind HIV stigma are entrenched beliefs that contracting HIV results from a moral failing on the part of the patient. Whether a PLWHA acquired HIV via sexual transmission or through IDU, many people living in Appalachia believe that, had people simply not "sinned" by having sex or using drugs, they would not be "punished" with the disease.
These types of stigma are challenging to combat, primarily because they require the people who hold those beliefs to question long-held prejudices and teachings from parents, family members, and community and religious leaders. There are, however, significant strides being made to eradicate stigma related to both the modalities of transmission and living with the disease.
The opioid epidemic has touched almost every part of Appalachia, particularly in the hardest-hit states of West Virginia and Kentucky. There is hardly a family in Central Appalachia that doesn't have a member impacted by addiction. This allows people to more easily see the struggles faced by people living with addiction and to empathize.
Meanwhile, three decades of awareness campaigns about HIV and PLWHA have resulted in increased acceptance of PLWHA and understanding of the disease itself. There is, of course, more work to do, particularly in Central Appalachia, where HIV stigma is deeply tied stigma against PWID.
APPLI is working tirelessly to improve awareness among local, state, and federal elected officials and administrators of the circumstances on the ground in Appalachian counties. The hurdles we face in combating the spread of HIV are made more difficult by numerous barriers to care and treatment, including lower educational attainment, low health literacy, higher levels of endemic and generational poverty, and geographic barriers that significantly increase transportation and isolation barriers.
Broz, D., Carnes, N., Chapin-Bardales, J., Des Jarlais, D.C.., Handangic, S., Jones, C.M., McClung, R.P., & Asher, A.K. (2021, November). Syringe services programs’ role in Ending the HIV Epidemic in the U.S.: Why we cannot do it without them. American Journal of Preventive Medicine, 61(5), S118-S129. https://doi.org/10.1016/j.amepre.2021.05.044
Hopkins, M.J. (2023, July 20th). The state of long-acting injectable Medicaid coverage. Washington, DC: ADAP Advocacy Association: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2023/07/the-state-of-long-acting-injectable.html