The US has laid out ambitious goals to end HIV domestically through the National HIV Strategy and Ending the HIV Epidemic Initiative. These goals will not be achieved without intentional efforts to address health inequities faced by racial and ethnic minorities.
In 2018, Black people accounted for 43% of new HIV diagnoses, despite representing only 13% of the population. Hispanic people accounted for 18% of the U.S. population and 26% of new HIV diagnoses the same year.
Inequities are exacerbated among those with multiple marginalised identities, such as gender and sexual minorities. Between 2010 and 2018, HIV incidence in the US declined overall. But new diagnoses among Hispanic people rose by 30% during the same period, driven by a 68% increase among Hispanic gay and bisexual men aged 25-34.
If current trends continue, Black gay and bisexual men face a 50% lifetime risk for acquiring HIV. Those who do will live 6.3 years shorter on average than White gay and bisexual men, according to research Katherine Rich and colleagues from Harvard Medical School presented at IDWeek 2022.
These inequities are not driven by individual behaviour. Black people are more likely to acquire HIV through sex and sharing syringes compared to White people despite engaging in similar or fewer behaviours that pose a risk for HIV transmission.
Rather, the disparities are fueled through the cumulative effect of racism within US social and political systems. This is often referred to by the closely related concepts of systemic racism and structural racism. Both terms refer to the effect that systems, laws, policies, attitudes, and beliefs have on fostering racial discrimination and inequitable distribution of wealth and resources for minoritised people.
According to some scholars, systemic racism emphasises the role of mutually reinforcing systems – political, legal, economic, criminal justice, etc. – while structural racism emphasises the role of structures within the larger systems, such as laws, policies, norms.
The terms are often used interchangeably in the literature. This article will use systemic racism throughout, aligning with the language used in the covered studies.
Systemic racism a key barrier
Systemic racism is repeatedly raised as a key barrier in efforts to address HIV, according to research published this summer in the Journal of Acquired Immune Deficiency Syndromes by Dr Sayward Harrison and colleagues from the University of South Carolina.
They synthesised results of three qualitative studies done in 2021 that engaged local stakeholders to inform PrEP implementation as part of the Ending the HIV Epidemic initiative in California, North Carolina, and South Carolina. The studies focused on different populations, including transgender people of colour, young gay and bisexual men, and young transgender women, in urban, suburban, and rural areas.
While not the aim of the studies, persistent systemic racism emerged as a key barrier in all three. Participants described the insidious nature of systemic racism:
“You're talking about HIV information, access to information, healthcare systems, we cannot not talk about racism. You just can't leave [racism] out of the conversation.”
Participants reflected on inequitable access to quality care:
“The quality of care is not the same in South Sacramento (as) in the better-off areas. So, personally, you know, even though I have a hospital that is literally, like, 5 minutes away from my house, I do not go there because I know I'm not going to get the… quality of care that I need.”
Interviewees reported that healthcare providers did not listen to them. They described having their concerns and symptoms dismissed, with dire consequences:
“Black and Brown folks, folks who don't speak English… their experiences (of being) just left in the hallway, turned away, not given medicine, treated like they're med seeking when they're not. One of them, there was a Black trans woman… died in the waiting room at a hospital because the doctors would not treat her.”
Staff at multiple levels were not seen as representative of the communities they served:
“People that are part of leadership and people that are part of the leadership and making decisions for the community that they're serving, although they're not in the community, are White people, and that's across the board.”
Participants shared the potentiating effect of intersecting marginalised identities:
“Okay, poverty. Just that. You start adding other things that create intersectionality. Like race. Okay. It's not just poverty, now it's an impoverished Black person. Not just an impoverished Black person, it's an impoverished Black Trans woman… any one of those issues is difficult to deal with by itself. Just being Trans, just being Trans women, just being Black persons, just being poor persons—when you combine those factors, yeah, that's much more difficult. That increases stress, depression, poor health, suicide. So many things.”
Across the studies, participants described the all-encompassing, insidious nature of systemic racism, noting that “systemic racism is built into how we combat these issues”. However, there was a disconnect between the root cause of health disparities and the ideas suggested to address them. The strategies participants recommended to overcome inequities largely focused on the interpersonal and individual levels.
Interventions focusing on health care providers
In these studies, the most common race-related recommendation was to increase the cultural competency of staff and providers through ongoing efforts to understand and address bias and stigma towards racial and ethnic minorities.
The importance of the relationship and communication between healthcare providers and their patients is well documented. For example, one study found that provider communication greatly influenced the health outcomes of Black and Hispanic women living with HIV.
In a separate qualitative study, Black and Hispanic women living with HIV identified having a provider who knew and respected them as a person and used clear communication as a key facilitator helping them stay in care and on treatment.
“Race isn’t a risk factor for HIV. Racism is.”
Addressing biases in provider communication is clearly an unmet need. A series of studies that looked at communication during HIV clinic appointments found stark racial disparities in how providers responded to the emotions of patients, which were most often conveyed implicitly through both verbal and non-verbal cues.
The researchers found that there were cultural differences in how people expressed their emotions, and that providers were more likely to block communication from their Black patients and less likely to respond in a way that invited further dialogue or elaboration, compared to with White patients.
The authors called for more training for providers to improve their cross-cultural communication and to bring awareness to blind spots and implicit biases, sentiments echoed by those participating in the qualitative studies.
But, just as inequities cannot be attributed to individual behaviour, neither can systemic racism be attributed to racism and bias among individual providers.
Interventions focusing on racial and ethnic minorities
Participants from the qualitative studies also suggested a range of strategies to improve outcomes that focused on individuals experiencing the inequities. These included providing financial incentives, improving outreach in settings such as churches, and greater involvement of the priority population in intervention and programme development.
These types of interventions can be effective, especially when designed to increase cultural relevance, appeal, and responsiveness. A 2021 review identified 14 interventions that were effective at improving one or more HIV care continuum outcomes among Black gay and bisexual men living with HIV.
Most focused on an individual level (personal factors such as health literacy), interpersonal level (social factors such as a person’s support system), or a combination of both. Several used strategies suggested in the qualitative studies.
When inclusivity becomes oversaturation
However, honing in on the population that is experiencing inequities is not without risk. Participants from the qualitative studies urged decision makers to consider whether the advertising and programme materials being used could further stigmatise marginalised groups.
Their concerns are warranted. A study by Joseph Rosen published in Culture, Health, and Sexuality reviewed US PrEP campaigns and advertisements from 2012 to 2021 that included cisgender women, transgender women, and/or femme presenting people.
They found that 93% of the campaigns featured racial or ethnic minorities, including Black cisgender women (49%), Black transgender women (27%), Hispanic cisgender women (17%), and Hispanic transgender women (16%).
The researchers cautioned that however well-intentioned, attempts to be inclusive and appeal to those more often impacted by HIV can have the opposite effect. Oversaturation of a group or community can lead to inaccurate and harmful representations that reinforces stigma, cause confusion about who PrEP is for, and as one campaign viewer put it, lead to “racialisation of HIV risk”.
Race isn’t a risk factor. Racism is. So how are we to effectively address it in the US?
Interventions focusing on systemic factors
Empirical evidence on how to effectively counteract systemic racism is scant considering that such pervasive inequality is a defining feature of US society. Instead, much of the research and interventions related to health inequities focus instead on individual-level strategies.
But no amount of marketing or individually focused interventions can overcome the failures of systems that don’t reach or serve the people who are most marginalised, and therefore most vulnerable, in US society.
“If current trends continue, gay and bisexual Black men in the US will have a 50% chance of acquiring HIV in their lifetime.”
The systems themselves also need intervention.
Often called structural interventions, these types of interventions do not focus on individuals. Instead, they seek to address the broader environmental, social, and economic factors that influence health.
Three of the 14 interventions for Black gay and bisexual men with HIV covered in the 2021 review mentioned above included a focus on system level barriers.
Two were multi-level, focusing on both system and individual factors. One of these was IN-CARE, which addressed systemic factors to get men into HIV care through improved coordination among social and medical services.
Once in care, the men received additional support through an individual intervention focused on retention. Linkage to care for Black gay and bisexual men increased from 0% to 90% during the study, and retention increased from 0% to 73%.
Another effective intervention – REACH – focused only on system factors by improving administrative protocols and removing bureaucratic barriers to HIV treatment initiation. Over a six-month period, median time to viral suppression decreased from 77 to 57 days, time to first provider appointment decreased from 17 to 5 days, and time to ART initiation decreased from 21 to 7 days among the study population, which was 90% Black.
It is important to note that many of these interventions that improved HIV-related outcomes for Black men were not specifically designed for this population, although a handful were. Many had a broader focus, such as all gay and bisexual men with HIV.
The authors of the review do call for more interventions that are specifically designed for and with Black men, a recommendation that can be applied more broadly to other impacted minorities. At present, structural interventions are rarely tailored for a specific racial or ethnic group, and even less frequently are they specifically designed to counter the impacts of systemic racism.
Towards equity in funding
A promising area of focus with potential to help “undo” HIV-related health inequities stemming from systemic racism is to change how funding is allocated for HIV prevention and care services.
A 2021 cost effectiveness model paints a compelling picture. It suggests that targeting the impacts of systemic racism is actually the most effective way to prevent HIV and improve health for the entire community, across all racial and ethnic groups.
The researchers set out to compare the effectiveness of different strategies for investing funding to scale up HIV prevention and care services.
“No amount of marketing or individually focused interventions can overcome the failures of systems that don’t reach or serve marginalised people.”
The first approach tested was to increase funding and scale up HIV services in proportion to existing service levels, meaning that groups already receiving a higher level of services would benefit most. The second approach was to use the racial and ethnic distribution of new HIV diagnoses to direct allocation of HIV prevention and care funding.
The model showed that the second approach would drastically reduce HIV-related health inequities experienced by racial and ethnic minorities. This equity approach would also prevent more new HIV infections and lead to greater quality of life improvements for all racial and ethnic groups and put national goals to end HIV within reach.
Further, the model predicted that it was the most effective and efficient use of resources. Equity in funding was predicted to have a lower incremental cost than scaling up services from existing levels across the board.
In some cases, equitable investments in service expansion represented cost savings even compared to the status quo of no service expansion. Overall, predicted cost savings in six different cities ranged from $23 to $245 million over a 10-year period.
Systemic racism is larger than any single person, policy, or institution. Tackling this root cause of health inequities in and beyond HIV can feel daunting. Rather than being overwhelmed by the totality of the issues, health officials, policymakers, and other decision makers can direct attention and resources towards improving the systemic factors that they can influence.
Quality improvement efforts to increase coordination among health and social service providers or improve administrative policies are structural interventions that can and do make statistically significant improvements to the health and wellbeing of Black and Latino people living with HIV.
Even interventions that are not tailored to improve health in specific groups can help reduce racial and ethnic health disparities. Whether tailored or broad, all interventions should be developed with the meaningful involvement of the population of focus, and particular care should be taken to ensure that no group is underrepresented.
Using data to direct the allocation of funding for HIV prevention, care, and related services proportionate to the racial and ethnic distribution of HIV diagnoses is a structural approach that should reduce health inequities and new HIV diagnoses. There will be greater public health improvements for the whole community than if we maintain the status quo of service levels and funding proportions.
One thing is clear. Inaction by decision makers carries a dire price. If current trends continue, gay and bisexual Black men in the US will have a 50% chance of acquiring HIV in their lifetime, and those who do will have a life expectancy over six years shorter than their White peers.
Harrison S et al. Addressing racism's role in the US HIV epidemic: qualitative findings from three Ending the HIV Epidemic prevention projects. Journal of Acquired Immune Deficiency Syndromes 90: S46-S55, July 2022 (open access).
Rosen J et al. Communicative appeals and messaging frames in visual media for HIV pre-exposure prophylaxis promotion to cisgender and transgender women. Culture, Health & Sexuality. Published online ahead of print, 8 September 2022.
Goldhammer H et al. HIV care continuum interventions for Black men who have sex with men in the USA. The Lancet HIV 8: e776-e786, 2021.
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