The price of invisibility: a cascading disaster in the US Latino HIV epidemic

Under the Trump administration, national HIV prevention efforts are being scaled back. As a result, the US Latino HIV epidemic has shifted from a longstanding invisible crisis, which we have continuously documented [1,2], into a cascading disaster, an escalating crisis that amplifies existing Latino HIV inequities and worsens their negative impacts on national efforts to end the HIV epidemic for everyone. Cascading disasters are complex and involve interconnected system failures that diminish the chances of effective response and recovery. Here, we examine the cascading disaster through four key areas that have driven past national progress in reducing new HIV infections but have now worsened for Latinos.

A cascading disaster

The first Trump administration set a national goal to end the HIV epidemic by 2030. Progress over the previous decade in four key areas made this ambitious target achievable. First, new HIV infections showed a downward trend. Second, effective HIV prevention and treatment tools, including preexposure prophylaxis (PrEP) and antiretroviral therapies for treatment as prevention, became widely available. Third, barriers to accessing HIV prevention and treatment services generally decreased, reflecting higher insurance coverage rates from the Affordable Care Act, more states expanding Medicaid, and a slow decline in HIV-related stigma. Fourth, the federal government made a historic commitment to ending the US HIV epidemic, from President Obama's comprehensive National HIV/AIDS Strategy to the Trump administration's Ending the HIV Epidemic (EHE) initiative.

However, in all four areas, these positive trends have reversed course. This is especially true for Latinos, for whom new federal priorities are worsening existing HIV inequities. Annual new HIV infections have risen among Latinos, particularly Latino MSM [2,3]. Longstanding inequities in HIV prevention and treatment access for Latinos persist [1,2], with barriers to access growing rather than decreasing [4,5], in part because of federal disinvestment in Latino-specific HIV programs and research initiatives.

Worsening HIV incidence inequities

We examine two streams of HIV surveillance data: historical data highlighting the longstanding nature of Latino HIV inequities and recent data indicating that the situation is deteriorating. HIV incidence estimates from the Centers for Disease Control and Prevention (CDC) reveal that Latinos have lagged behind in national HIV prevention efforts for over a decade. Although the latest annual CDC HIV incidence estimates, which were scheduled for release in April 2025, have not yet been published (the CDC website attributes the delays to staff reductions at the Division of HIV Prevention) [6], data are available for 2010 through 2022. We previously discussed concerning inequities for Latinos in these data [2]: Estimated new HIV infections annually from 2010 to 2022 decreased by 19% overall in the US, but increased by 12% among Latinos [2,3]. Among Latino MSM, estimated annual HIV infections grew by 24%, compared to a 15% decrease among MSM nationwide [2,3]. For Latino MSM aged 25–34 years, the increase between 2010 and 2022 was 95% [2,3]. By 2022, Latino MSM accounted for the highest number of new HIV infections across all groups defined by transmission risk and race/ethnicity in CDC data [3]. Furthermore, the latest data indicate that Latino inequities continue to expand. CDC surveillance data for HIV diagnoses – available through 2023 – showed an 8% increase in new HIV diagnoses among Latinos in 2023 compared to 2022, representing the largest rise among all racial and ethnic groups during this period [6].

These longstanding and worsening inequities in HIV incidence have grown amid persistent Latino invisibility in the nation's HIV response, reflected in insufficient Latino-focused policies and programs, and further compounded by false societal narratives. Latino HIV inequities have long received insufficient attention. Accordingly, we introduced the term “invisible Latino HIV crisis” more than 5 years ago [1]. Since then, we have – together with others [7,8] – highlighted ongoing Latino HIV inequities in public health literature [1,2], and through community-led advocacy, partnerships with HIV pharmaceutical companies, and media efforts (see a short video contextualizing the Latino HIV cascading disaster). The invisibility of Latino HIV inequities is demonstrated by the federal government's consistent positive messaging about overall progress in reducing new HIV infections nationwide, without emphasizing the worsening conditions for Latinos, which surveillance data clearly show [1,2]. Additionally, for many years, Latino leaders have been largely excluded from the decision-making roles that shape national HIV policy and federal agency initiatives, constraining agenda-setting, weakening accountability, and limiting the ability to mobilize and direct resources at the scale needed to address the Latino HIV crisis.

More broadly, the importance of Latino health for improving overall US population health also remains largely overlooked, despite Latinos being the largest and youngest racial/ethnic minority in the United States [9]. As a result of this lack of recognition, Latinos’ needs continue to be de-prioritized in US health policy and programming. For example, although they have the highest labor force participation rate of any group [10], Latinos are also most likely to be either un- or underinsured [11]. Additionally, Latinos remain underrepresented in key healthcare workforces, including nurses, nurse practitioners, physician assistants, and physicians [12], despite the benefits of patient-provider racial/ethnic concordance [13–16]. At the same time, inadequate linguistic accommodations for Latino patients with limited English proficiency remain a common barrier to care engagement and quality [16].

Lastly, false societal narratives and perceptions about Latinos in the United States remain widespread. For example, the misconceptions that most Latinos in the United States are undocumented immigrants, even though 79% are US citizens [17]; and the belief that Latinos are a net financial burden on US healthcare and social welfare systems, even though US Latino households and businesses generate about $4 trillion in economic output annually [18], and undocumented immigrants pay a surplus of more than $50 billion each year in health insurance premiums and taxes into the US healthcare system, offsetting costs incurred by US citizens [19]. These narratives are not only inaccurate and stigmatizing, but also hinder efforts to build consensus and political will to address widespread Latino inequities. Overall, for more than a decade, intersecting structural barriers have constrained Latino access to HIV prevention and treatment, and to healthcare more broadly, fueling worsening HIV incidence inequities in Latino communities.

Persistent prevention and treatment inequities

Our discussion centers on inequities in PrEP coverage, HIV testing, access to HIV care, and viral suppression. PrEP access and use have consistently been lower among Latinos with PrEP indications compared with the overall US population who could benefit from PrEP. This widespread inequity among Latinos has persisted since PrEP became available in 2012. In light of longstanding inequity, we highlight a recent and concerning decline in PrEP access for Latinos. Sullivan et al. [20] introduced the PrEP equity ratio (PER) as a metric to measure how well one population group's PrEP needs are met relative to another's. The PER compares two groups’ PrEP-to-need ratios (PnRs), calculated as the number of PrEP users in a specific group and year divided by the number of new HIV diagnoses in that same group and year. We obtained PnRs for Latinos and the overall US population from AIDSVu (https://aidsvu.org/resources/#/datasets) for the years 2012–2024 and calculated the PERs accordingly, as

$$\frac{LatinaPn{R}_t}{OverallUSPn{R}_t}$$

where t indexes the year. A PER of 1 indicates equity in Latino PrEP coverage, and lower values indicate greater inequity for Latinos relative to the overall US population.

Figure 1 shows a PER well below 1 for all years. Significant progress was made before the COVID-19 pandemic in reducing Latino PrEP inequity; from 2014 to 2019, the Latino PER increased from 0.51 to 0.61. However, since the pandemic, this progress has declined, nearly halving the previous reduction in Latino PrEP inequity, with little recovery afterward. Additionally, enthusiasm about PrEP innovations like the newly approved long-acting lenacapavir is diminished by ongoing structural access barriers, such as the refusal of the nation's largest pharmacy benefits manager to reimburse the over $28 000 annual cost of lenacapavir [21].

Fig. 1.

Preexposure prophylaxis equity ratio (Latinos vs. overall US population), 2012–2024.

Regarding HIV testing, care, and viral suppression, there are persistent inequities among Latinos. Each year from 2010 to 2022, Latinos living with HIV were more likely to be unaware of their status than the overall US population with HIV [3]. In 2022, about one in six Latinos with HIV remained unaware of their status [3]. During each year with available national surveillance data on HIV care outcomes on CDC AtlasPlus (2017–2023), Latinos with diagnosed HIV were less likely to receive any HIV care and to achieve viral suppression than the general US population with diagnosed HIV [3]. In 2023, over a quarter of Latinos with diagnosed HIV did not receive any HIV care, and more than a third did not have a suppressed viral load at their last test [3].

Taken together, the persistence and – even in some cases – worsening of these HIV prevention and treatment inequities are highly concerning, especially since population-level improvements in PrEP use and viral suppression fully explain the declines in new HIV diagnoses in the United States since 2012 [22]. The extent to which Latinos have been left behind in access to PrEP and HIV treatment therefore serves as a key factor in explaining preventable excess HIV incidence.

Increasing barriers to HIV service access

Although HIV prevention and treatment inequities for Latinos have been longstanding, new access barriers threaten to worsen the situation. Notably, the Trump administration's antiimmigrant policies and upcoming Medicaid cuts disproportionately affect Latinos at risk of or living with HIV.

Antiimmigrant policies impact Latinos in various ways, largely depending on their immigration status. The most immediate effect is on undocumented Latino migrants, who already encounter increased barriers to accessing HIV services due largely to language challenges, limited knowledge of the US healthcare system, and lack of health insurance. New barriers are also emerging, including federal guidance to share Medicaid enrollee data with immigration enforcement [4]. A recent rise in high-profile deportation enforcement has created fear among undocumented migrants, leading to reluctance to engage with healthcare for fear of deportation.

The rise in antiimmigrant policies also negatively affects US-born Latinos and Latinos with legal immigration status. For example, reports of US citizens being temporarily detained during immigration raids based on racial profiling of Latinos are increasing [5], indicating a rise in discrimination against Latinos overall.

Furthermore, the recently enacted One Big Beautiful Bill reduces about $1 trillion from Medicaid and is projected to eliminate health insurance coverage for nearly 12 million people in the United States. The effects will be particularly severe for people living with HIV. Medicaid is the main source of health insurance for people with HIV and the largest funder of HIV services in the US [23]. Harms may be especially severe for Latinos, as two-thirds of all Latinos with HIV either depend on public health insurance, such as Medicaid, Medicare, or Veterans Affairs benefits, or have no insurance at all, relying solely on the Ryan White HIV/AIDS Program [24].

Federal cuts to Latino-specific HIV research and programs

Lastly, despite documented need, federal and state governments have cut funding for Latino-specific HIV research and programs. The initial implementation of the EHE initiative identified Latino communities – particularly Latino MSM – as a priority population for expanding the reach and improving the outcomes of HIV prevention and treatment. Despite this, less than half of EHE priority jurisdictions explicitly outlined strategies for engaging Latino MSM in HIV services in their local implementation plans [7], and the Trump administration has signaled disinvestment in research and programs specifically tailored to the needs of Latinos. Furthermore, although Congress ultimately rejected it [25], the House Appropriations Committee proposed nearly $2 billion reduction in HIV funding for fiscal year 2026 that would have eliminated all funding for CDC's HIV prevention efforts in the United States and reduced the Ryan White HIV/AIDS Care and Treatment Program by more than $500 million, moves that would have effectively upended the EHE initiative and gone beyond even the president's proposed HIV prevention cuts [26]. In Florida – which represents a major geographic hotspot in the Latino HIV epidemic, alone accounting for more than 1 in 10 new diagnoses among Latinos nationally [3] – the state's AIDS Drug Assistance Program announced a lower income-eligibility threshold, putting an estimated 16 000 people living with HIV at risk of losing access to antiretroviral therapy [27]. In California, Illinois, Colorado, and Minnesota – which collectively account for more than one in four new diagnoses among Latinos nationally [3] – the administration is attempting to cut $600 million from CDC funding primarily allocated to HIV and sexually transmitted infection programming [28]. These developments are clear indicators that the political will to end the US HIV epidemic is wavering.

The price of invisibility

The Latino HIV response has been constrained by an “invisibility equals inaction” dynamic, enabling an ongoing cascading disaster and remaining a primary obstacle to ending HIV among Latinos [1,2]. Today, efforts to counter Latino invisibility have crucially been possible because surveillance data documenting Latino inequities, data that are largely collected, maintained, and publicly reported by the US federal government. However, the continued availability of comparable high-quality, high-frequency HIV surveillance data is increasingly uncertain. In addition to delayed reporting of HIV incidence estimates, the current administration has attempted to pull HIV data from the CDC website – an effort thwarted only by a judicial ruling – and a federal budget that eliminates all funding for HIV surveillance at the CDC has been proposed [26]. Furthermore, recently published research has raised serious concerns regarding changes made to existing national data sources [29], calling into question the accuracy of forthcoming HIV surveillance data.

Without accurate, publicly available HIV surveillance data, efforts to make the invisible Latino HIV epidemic visible, and to drive an effective response, will be severely hindered. When data are missing, accountability erodes and inequities are easier to ignore. Meanwhile, in Latino communities and families, and in the lives of Latinos affected by HIV, the crisis persists, becoming more widespread, more costly, and harder to resolve over time.

Conclusion

Taken together, the worsening HIV epidemic in US Latino communities over the past decade, the accelerating trajectory reflected in the most recent data, and the projected negative impacts of recent HIV policy shifts indicate that a cascading disaster is unfolding. Even as national HIV prevention efforts are being scaled back, there are clear opportunities to make Latino communities visible in the nation's HIV response and, in doing so, strengthen accountability and action: expand Latino-focused HIV services, address harmful structural drivers, and advance Latino-focused HIV research. Table 1 highlights actionable opportunities for policymakers, public health officials, healthcare organizations, the private sector, and researchers to strengthen the response to the escalating Latino HIV crisis, particularly amid regressive actions by the current administration and growing anti-Latino sentiment, especially toward Latino immigrants, across the United States.

Table 1.

Opportunities for responding to HIV in Latino communities by stakeholder.

Stakeholder	Possible responses to HIV in Latino communities
Policymakers	• Protect funding for HIV surveillance and prevention and treatment programs in Latino communities • Avert broader healthcare and public health funding cuts, including to Medicaid and HIV prevention, and restore funding where needed • Repeal policies that decrease access to HIV prevention and treatment or weaken the public health response to HIV • Protect due process and human rights, including the right to healthcare, for undocumented migrants • Work to strengthen the political will to commit to an end to the US HIV epidemic by 2030 • Increase Latino representation among elected officials, including leadership at all levels • Ensure funding mechanisms for long-acting PrEP (lenacapavir) are available for Latinos, including those with inadequate or no insurance coverage
Public health officials	• Continue the collection and reporting of HIV surveillance data and improve data on inequity metrics, and reestablish such workforce, collection, and reporting where needed • Develop Latino-specific local response plans in Ending the HIV Epidemic (EHE) priority jurisdictions • Tailor public health communication campaigns culturally and linguistically to the Latino community • Engage the grassroots Latino community in the development of Latino-tailored programs and messaging • Increase Latino public health workforce representation, including leadership at all levels
Healthcare sector	• Strengthen HIV testing, prevention, and treatment programs tailored to Latinos • Ensure close collaboration with local social welfare service systems, including community-based organizations, to deliver integrated clinical–social care • Ensure culturally and linguistically appropriate HIV services • Increase Latino healthcare workforce representation, including leadership at all levels • Ensure new CDC guidelines that include long-acting PrEP (lenacapavir) are used and scaled in in Latino communities
Private and nonprofit sector	• Media: Elevate the visibility of the Latino HIV crisis and strategies to address it • Pharma: Invest in Latino-specific scale-up of existing and novel biomedical prevention and treatment interventions (e.g., lenacapavir for long-acting PrEP and ARV) • Pharmacy benefits managers: provide coverage for lenacapavir for long-acting PrEP to ensure accessibility • National Latino nonprofits and advocacy agencies: Elevate the invisible HIV crisis and prioritize mounting a response
Researchers and funders	• Develop tailored behavioral interventions to enhance engagement, retention, and outcomes in HIV prevention and treatment among Latinos • Increase Latino scientific workforce representation, including leadership at all levels • Increase—and where needed, restore—Latino-specific HIV research funding

If the national HIV response does not prioritize efforts to eliminate HIV inequities affecting Latino communities, the consequences will harm both Latinos and the nation's broader goal of ending the HIV epidemic. Ending HIV is not a zero-sum proposition: closing the widening gaps in Latino communities will accelerate progress for everyone, while inaction jeopardizes national progress in fighting HIV.

Acknowledgements

Conceptualization: V.G.R., M.T.K.

Methodology: V.G.R., M.T.K.

Investigation: V.G.R., M.T.K., A.B., S.R.S.

Visualization: M.T.K.

Project administration and supervision: V.G.R.

Writing - original draft: V.G.R., M.T.K.

Writing - review & editing: V.G.R., M.T.K., A.B., S.R.S.

Conflicts of interest

V.G.R. declares advisory fees from ViiV Healthcare and serves as part of the National Institute of Nursing Research's National Advisory Council for Nursing Research and on the boards of directors for the Latino Commission on AIDS, the Power to Decide, and UnidosUS. The other authors declare that they have no competing interests.