Examining Disparities in Perinatal HIV Transmission (Part Two)
In our last article related to perinatal HIV transmission, Examining Disparities in Perinatal HIV Transmission (Part One), we evaluated the various populations that are disproportionately impacted by the transmission of HIV during gestation, delivery, or through breastfeeding. But what about how these populations were impacted by region?
In the data we reported in February 2024, we relied upon data from the Centers for Disease Control and Prevention (CDC), which included the number of children diagnosed between the ages of birth to 12, rather than specifically focusing on confirmed cases of perinatal transmission. Using that same methodology, PlusInc began to examine whether children living in certain regions of the United States were more likely to be diagnosed with HIV.
In examining HIV incidence data from five years of HIV Surveillance Reports covering 2017-2022, we discovered that states in the South accounted for 226 of the 425 total diagnoses of children aged <13—more than half of all diagnoses (CDC, 2020-2024).
5 of the 10 states with the highest incidence of HIV in children were southern states (FL, TX, GA, AL, & VA). Florida had the highest number of diagnoses, accounting for 62—nearly double next highest state, California, with 32. Texas had 31, Georgia had 27, Alabama had 18, and Virginia had 16 (Figure 1).
Figure 1 - HIV Diagnoses in Persons Aged <13 by State, 2017-2022
This disproportionate burden is unsurprising, as HIV, in general, is more prevalent in the southern United States (Figure 2). In 2022, the South accounted for 52% of all HIV diagnoses in the United States.
Figure 2 - Differences in HIV diagnoses by region, 2022
As we highlighted in our February article, Black children were disproportionately more likely to be diagnosed with HIV before age 13 than any other demographic. The American South has the highest concentration of Black Americans in the United States.
One of the primary concerns going forward is that patients living in southern states—particularly those that are more rural—are likely to face continued barriers to accessing testing, as well as preventative and post-transmission treatment for HIV. These barriers include higher levels of poverty, lack of transportation, lack of health literacy, and the inability to access healthcare services, in general, much less those focused on providing prevention and treatment services.
PlusInc will continue to monitor perinatal HIV transmission data to identify any disproportionate impacts.
Examining Disparities in Perinatal HIV Transmission (Part One)
The transmission of HIV from a pregnant woman to a child is referred to as “perinatal transmission,” but can also be referred to as “vertical transmission” or “mother-to-child transmission.” This mode of transmission can occur during the pregnancy gestation period, during delivery of a child, or through breastfeeding. Without treatment, 25-30% of babies born to a person living with HIV are likely to contract the virus (Minnesota Department of Health, 2022).
Pregnant women can drastically reduce the risk of transmitting HIV to their children by taking antiretroviral (ARV) medications to treat their HIV and achieving viral suppression—when the number of replicating copies of the HIV virus drops below 200 copies per milliliter of blood (Centers for Disease Control and Prevention, 2023c)—during pregnancy and after their children have been delivered. The use of ARV treatments has reduced the rate of perinatal HIV transmission to 1% of less in the United States and Europe (HIV Info, 2023).
Pregnant women living with HIV who have high viral loads—more than 1,000 replicating copies of HIV per milliliter of blood—or those with an unknown viral load can also reduce the risk of perinatal HIV transmission by scheduling a Cesarean delivery (or, “c-section”; HIV Info, 2023)
After birth, babies born to women living with HIV should receive ARV medications to reduce the risk of perinatal transmission. This type of treatment is based upon numerous factors which can be found at the following link: Recommendations for the Use of Antiretroviral Drugs During Pregnancy and Interventions to Reduce Perinatal HIV Transmission in the United States.
Perinatal Transmission by the Numbers:
Overall
When examining the data for perinatal transmission, the incidence is both rare and has been decreasing over time (Table 1), with just 99 cases identified in 2021, the most recent year for reliable reporting (CDC, 2023a). Still, within the overall reporting, we see that a disparity exists: people over the aged 13 or older who were assigned Female as their sex at birth represent 49 (49.5%) of the 99 identified cases—greater than the number of adolescents aged younger than 13, for whom there were 39 identified cases. 2021 marked the first year that this has occurred since 2017 (CDC, 2023a).
Disparities Based on Race
When looking at 2021 data, one disparity becomes glaringly obvious: Black Americans are exponentially more likely than any other racial category to be diagnosed with HIV as a result of perinatal transmission. Among Males aged ≥13 years at the time of diagnosis, Black Males accounted for 8 of the 11 cases identified (72.7%). Among Females aged ≥13 years, Black Females accounted for 35 of the 49 cases identified (71.4%). Among Children aged <13 years, Black Children accounted for 26 of the 39 cases identified (66.7%).
Among Males, the only other racial category in which perinatal transmission was identified in 2021 was in Hispanic Males. Among both Females and Children, transmission occurred in other races, but Hispanic persons still had the second-highest number of transmissions in both categories (Table 2).
Considerations and Discussion: Racial Disparities in HIV Prevention and Treatment
That Black Americans (and Hispanic Americans) are disproportionately impacted by perinatal transmission of HIV is really unsurprising given that Black and Hispanic Americans account for the majority of all new HIV diagnoses, regardless of mode of transmission, with Black Americans accounting for 14,555 of the 35,769 (40.7%) new cases of HIV identified in 2021, and Hispanic Americans accounting for 10,070 (28.2%). Black Americans have a rate of HIV transmission that is exponentially higher than any other racial category, at 34.8 diagnoses per 100,000 Black persons, followed by Hispanic Americans at 16.1 (per 100k).
Data released in 2023 by AIDSVu—the interactive mapping tool that visualizes the impact of the HIV epidemic on communities across the United States (Sullivan et al., 2020)—found that Black and Hispanic Americans accounted for just 14% and 17% of Pre-Exposure Prophylaxis (PrEP) users in 2022, respectively . Additionally, Females accounted for just 8% of PrEP users (AIDSVu, 2023). These utilization data align with what we’re seeing in terms of both overall and perinatal transmission rates—the people most impacted are the least likely to have access to or use PrEP as a preventative tool against HIV transmission.
When it comes to viral suppression, Americans “enjoy” appallingly low rates of viral suppression compared to economically comparable countries, such as the United Kingdom, France, and Australia. In the United States, just 65.9% of Americans living with HIV/AIDS who were engaged in HIV treatment in 2021 were virally suppressed (CDC, 2023b), compared to 89% in the United Kingdom in 2019 (National AIDS Trust, 2022), 90% in France (KPMG, 2019), and 98% in Australia (UNAIDS, 2023). The primary difference between the United States and other members of the Organization for Economic Co-operation and Development (OECD) member states is that we are the only nation that fails to provide universal healthcare as a human right, relying instead on a profit-driven system of private insurance that is highly inefficient, greatly inequitable, and unaffordable for a majority of Americans.
When looking at the racial breakdowns of viral suppression fo HIV in the United States, 61.6% of Black Americans living with HIV/AIDS in 2021 were virally suppressed, compared to 64.3% of Hispanic Americans, and 71.7% of White Americans. The only racial group that surpassed White Americans in terms of viral suppression were Multiracial Americans, at 73.5%. Only Asian Americans (69.9%), White Americans, and Multiracial Americans had suppression rates higher than the national average of 65.9% (CDC, 2023b).
Recommendations and Potential Solutions
It is clear that, while rates of perinatal transmission have declined since 2017, there are still disparities to conquer, particularly among Black Americans and persons who are Female at birth. Significant efforts must be made to increase testing and diagnosis not just in pregnant women, but for the general population, as a whole. This cannot occur without significant pushes by federal, state, and local health agencies and legislative bodies to routinize HIV testing as a part of regular healthcare visits for all patients, regardless of age, race, and sex/gender. Many different types of stakeholders will need to come to various tables to make the routinization of HIV testing and diagnosis a reality, including:
Stakeholders with educational expertise, such as epidemiologists, scientists, and public health professionals;
Stakeholders with practical experience, such as infectious disease specialists, primary care physicians, and nurses;
Stakeholders with lived experience, such as Persons Living with HIV/AIDS (PLWHA), persons in high risk categories for HIV transmission, and patients outside of those high risk categories who recognize the need for this kind of routine health intervention;
Stakeholders who serve as payors of healthcare services and treatments, including public healthcare systems, like Medicaid, Medicare, and the Department of Veterans Affairs, and private insurers, and;
Stakeholders who develop and manufacture the supplies necessary to test and diagnose HIV in a variety of healthcare settings, as well as those who develop and manufacture the medications needed to prevent and treat HIV.
Bringing these stakeholder groups to these tables will allow for the development of reasonable and patient-centric policies and implementation timelines around the delivery and reimbursement of HIV testing as a part of routine healthcare services across numerous healthcare settings and by a broad range of healthcare providers.
The two key policies that need to be in place to make routinization of HIV testing and linkage to care a reality are payment/reimbursement and enforcement mechanisms. We need to develop clear policies that outline who will pay for and reimburse these expanded HIV testing services and how state and federal governments will enforce these requirements. As we have seen with epidemiological reporting requirements, simply requiring things to happen doesn’t actually mean that they will or that the rollouts of those policies will be successful without these mechanisms in place.
While the routinizing of HIV testing in the general population is vital to reducing HIV transmission and increasing prevention and treatment access, concerted efforts must be made to increase and improve access to regular testing of pregnant people for HIV, Viral Hepatitis, and other STIs.
On the treatment side of preventing perinatal transmission, it is clear that barriers exist that prevent certain patient populations from either accessing or affording HIV treatment. These barriers may include (but are not limited to:
Transportation barriers (e.g., lack of access to a personal vehicle or public transportation);
Geographic barriers (e.g., distance to treatment, geographic isolation, or terrain barriers that prevent easy transportation);
Access barriers (e.g., a lack of access to pharmacies or trusted medication providers);
Housing barriers (e.g., a lack of stable housing or a lack of any housing);
Financial barriers (e.g., the inability to afford medications or competing financial obligations that require patients to choose between paying one bill to the exclusion of purchasing medications), and;
Stigma-based barriers (e.g., fears of being discriminated against or facing hostile or poor treatment from medical providers or pharmacists when seeking services).
Another potential barrier to accessing and utilizing HIV treatment is the lack of treatment options that suit the needs of pregnant women. The vast majority of PLWHA who receive treatment currently take daily oral single-pill regimens. However, a newer treatment option exists—Long-Acting Injectables (LAIs) that are delivered on either a monthly or bi-monthly (every other month) basis. Few public data are available, however, about utilization rates of these LAI regimens.
Preliminary data from a short survey of PLWHA conducted by ADAP Advocacy in 2023-2024 found that 54.7% of Black respondents would prefer to receive treatment using either a provider-administered or self-administered LAI regimen, compared to 45.3% who prefer daily pill-based regimens. While self-administered LAI treatment options are not currently available, these preliminary findings indicate that patients are clamoring for treatment options that better fit their lives and lifestyles.
Another barrier exists, however, that may prevent patients from accessing LAIs as a treatment regimen: requirements by the U.S. Food and Drug Administration that patients demonstrate both treatment adherence and a record of viral suppression before beginning treatment with an LAI.
While the statistics about viral suppression indicate that 65.9% of patients who are being treated for their HIV, those data only account for patients who are engaged in care. When looking at the estimated 1.2 million Americans living with HIV/AIDS, research indicates that just 56.8% of PLWHA have achieved viral suppression, meaning that more than 2 out of every 5 PLWHA (43.2%) would be ineligible to even begin an LAI regimen (Pinto et al., 2023). This barrier to accessing LAIs essentially means that they are currently unavailable for use as first-line treatment options.
Despite this current barrier, many advocates are working behind the scenes to change both payor and drug indication policies to make LAIs the first-line treatment options for patient populations that have been deemed “Hard-to-Reach; Hard-to-Treat,” including persons who use or inject drugs, person experiencing homelessness, and persons who live in rural areas. The lack of self-administered delivery also serves as a barrier, particularly for patients living in rural and remote areas.
While the promise of LAIs as a first-line treatment option, additional research indicates that patients would prefer long-term oral pill-based regimens over injectable medications (Graham et al., 2023). While these treatment options are currently unavailable, the desire of patients to have treatment options that are easier to take and require less time and ef
PlusInc is dedicated to research, highlighting, and developing solutions to address disparities in healthcare, and we will continue to examine the perinatal transmission of HIV.