A Practical Field Guide
VocesLatinas.
Strains and Strategies from the Front Lines of Latino/a/x HIV Care in the United States.
Cover photograph · Katie Moum
Strains and Strategies from the Front Lines of Latino/a/x HIV Care in the United States.
Strains and Strategies from the Front Lines of Latino/a/x HIV Care in the United States. A practical field guide for clinicians, community leaders, researchers, and advocates working in the field of HIV.
Drawn from twenty in-depth interviews conducted in 2025 with attendees of the September 2024 ¡Adelante! Summit: A White House Convening to Accelerate Our Nation's HIV Response in Hispanic/Latino Communities, this field guide shares frontline perspectives on the rapidly shifting challenges shaping HIV prevention, care, outreach, and advocacy within Latino/a/x communities during the 2025–2026 sociopolitical changes in the United States.
Saldana CS, Serrano PA, Mena LA, Patino-Mateus JD, Ramon S, Moscovich T, Ordoñez C. VOCES LATINAS: A Practical Field Guide for Clinicians, Community Leaders, Researchers, and Advocates. Emory University; 2026. Accessed [DATE] URL: voceslatinasguide.org
This guide was developed by a multidisciplinary research team based at Emory University and led by Dr. Carlos Saldana. The project was supported by the Chicago Queer Latine Collaborative (CQLC NFP) and created in partnership with leaders working across HIV care, public health, research, advocacy, and Latino/a/x community health.
We are deeply grateful to the 20 participants who shared their experiences, insights, and hopes during an extraordinarily difficult period. Their voices, leadership, and lived experiences are the foundations of this guide.
To understand how 2025 federal policy changes are affecting Latino/a/x HIV care, prevention, mental health, and social services on the ground, we conducted semi-structured qualitative interviews with 20 participants between September and December 2025. All participants attended the September 2024 White House ¡Adelante! Summit on Latino/a/x HIV.
Participants represented a range of roles across the HIV continuum of care: clinicians and pharmacists in federally qualified health centers and Ryan White clinics; researchers at academic institutions; leaders of community-based organizations and national nonprofits; community health workers and program supervisors; and founders of grassroots organizations serving trans Latino/a/x communities. Participants worked across four regions of the United States — Northeast, South, Midwest, and West — including Puerto Rico.
Interviews lasted 45 to 75 minutes and were conducted virtually. Transcripts were analyzed using a rapid thematic analysis approach. Themes were identified inductively and synthesized into five major strains affecting communities, five categories of cost, and twenty response strategies organizations and communities are leveraging to move forward under four domains.
Limitations: These findings reflect the experiences of 20 providers and community leaders who attended a single national summit. They are not intended to be statistically representative of all Latino/a/x-serving organizations. What this approach offers is depth: insight into the "why" and "how" behind shifts that quantitative data are only beginning to capture.
This guide comes from the field. It is based on what we heard from clinicians, pharmacists, researchers, and community leaders who are responding to these changes in real time.
This is not a research review or a top-down set of rules, nor is it a comprehensive account of every challenge or strategy shaping our communities. Instead, it is a practical field guide grounded in the experiences of organizations that were once brought together to help map the U.S. HIV response in 2024, and what they are actually doing now, months after that summit, to sustain care, outreach, advocacy, and community support amid rapidly changing conditions.
Finally, we hope to reignite the collective passion, urgency, and vision that emerged from ¡Adelante! 2024 — and carry that momentum forward through a far more challenging moment for our communities.
· Highlight the growing challenges affecting Latino/a/x HIV care.
· Share what 20 frontline leaders told us in late 2025, who also attended the White House ¡Adelante! Summit (September 2024).
· Focus on real-world strategies organizations are using right now.
· Include practical resources to support implementation, advocacy, funding, legal preparedness, and community education.
This guide is for anyone working to support Latino/a/x communities, including: Latino/a/x community members; clinicians and healthcare providers; community-based organizations (CBOs); community health workers and peer navigators; and researchers, advocates, and policy leaders.
Adapt strategies. Start conversations. Share resources. Act across clinical, research, public health, and community-based settings.
Latino/a/x communities in the United States are facing a moment without precedent. Federal funding for HIV care and prevention has been cut at a scale and speed that no organization can absorb without harm.
Immigration enforcement is operating in clinics, neighborhoods, and workplaces in ways that block access to care for documented and undocumented people alike. Medicaid and other coverage pathways are being dismantled. The language used to name our communities has been banned from federal grants. And the public health infrastructure that once supported the response is being weakened and dismantled from the inside.
Five Strains · In Brief
Five Domains of Response · Twenty Strategies
| Domain | Response area | Strategies |
|---|---|---|
| I | Innovate to bring and keep patients in care |
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| II | 'Future-proof' and sustain your organization |
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| III | Build coalitions and peer support |
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| IV | Advocacy and community education |
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The strategies in this guide will not reverse federal funding cuts. They will not end immigration enforcement on their own. What they can do is keep organizations afloat and people engaged in care and connected to trusted relationships through this period. They are acts of continuity in a moment defined by disruption, and they are already working.
Latino/a/x communities in the United States have been disproportionately affected by HIV for decades. In 2023, Hispanic/Latino people accounted for more than one-third of new HIV diagnoses nationally, despite representing approximately 18% of the U.S. population. CDC data documented a 17% increase in HIV diagnoses among Hispanic/Latino people between 2018 and 2022. That is the starting point — even before the policy and funding shifts of 2025.
"Latinos have not been a priority. Infection rates amongst other groups and ethnicities are going down. Latinos are the only group that's going up."
Since early 2025, federal funding for HIV care and prevention has been cut in ways no organization can absorb without harm. The pattern is the same across regions: cuts came suddenly, with no phase-out or transition plan, and at a scale that forced immediate layoffs, service reductions, and program closures.
"We are a $12 million organization, and on March 16th we lost a third of our funding. From one day to the next, about $4 million was cut. We had to reduce services and lay off staff across centers."
"A $5 million grant was completely eliminated. That funding supported sexual health services, community health workers, PrEP navigation, and testing for uninsured and underinsured patients."
"At the beginning of 2025, I was affiliated with nine HIV-related research projects. Five of them were terminated."
Immigration enforcement is unfolding in Latino/a/x communities at a scale and intensity many participants described as unprecedented. It is no longer confined to specific individuals or formal legal processes — it is a visible and pervasive presence in public spaces, workplaces, near schools, and around the clinics and community organizations that provide care.
"We used to have a 15–19% no-show rate. That increased to almost 50%. It's not just undocumented immigrants — permanent residents and U.S. citizens are afraid to go out because of indiscriminate raids."
"Our families are being torn apart. Most Latino people feel there is a risk just going to the supermarket, speaking with an accent, or gathering in places where there are a lot of Latinos. There is a constant fear of being targeted."
"You can walk three or four blocks in the city and see the police or the National Guard. It feels like living under military occupation."
The infrastructure that connects low-income Latino/a/x communities to ongoing care — Medicaid, state-run insurance for undocumented residents, sliding fee scales, and ACA coverage — is being dismantled through several changes happening at once. Any of these alone would matter. Together, they are stripping coverage from hundreds of thousands of people across the country.
"The governor and legislature decided to stop enrolling undocumented people in Medicaid starting January 1st. On top of that, people now have to pay co-pays. A $40 co-pay is a major obstacle when someone is living paycheck to paycheck."
"Medicaid has been significantly reduced here. Sliding fee scales have been pushed to their minimum. A lot of people will lose their health insurance or have to pay a huge co-pay just to see a doctor."
Federal directives are doing two things at once: banning the words used to name specific communities in grants, reports, websites, and clinical research, and restricting the services those same communities can receive. Together, they amount to a deliberate and systemic erasure of entire communities from the institutions, protections, services, and systems meant to recognize, support, and safeguard their wellbeing.
"They want to eliminate us as a population. They want to make believe that we don't exist. By beginning to do that, they can limit the resources and access to comprehensive services we've had access to."
"We cannot use 'Latino,' we cannot use 'LGBTQ,' we cannot use 'Latinx,' we cannot use 'underserved communities.' They're saying yes, you can continue to provide services, but you cannot use any of this language."
The public health system itself — the workforce that runs it, the data systems that inform it, and the institutions that give it credibility — is being dismantled through coordinated moves happening at the same time. The workforce is being purged at federal, state, and local levels.
"Civil servants are being fired left and right. They're being told from one day to the next that you no longer have a job because you said something or your job is considered DEI."
"This administration feels like they want to erase a lot of patient populations by not collecting data. This whole 2025 move seems like one not to track any HIV information. If you don't have the data, you can just pretend it doesn't exist."
"It is purposeful to intentionally remove the trust from what we knew as trusted scientific agencies — the CDC, the FDA, the ACIP."
We had twenty conversations with people who have spent their careers in this work. They were specific. They named dollar amounts. They told us stories. Independently, across four regions, they painted the same picture. The full cost is likely larger than the data can show. But what the data does show is bad enough.
No-show rates have doubled or tripled in clinics serving our communities. Fear is reaching far past undocumented patients — permanent residents, U.S. citizens, and anyone who looks Latino/a/x is staying away from care.
"Our high no-show rate has increased a lot since the change. People are withdrawing from treatment because of fear, because of the phobia of leaving their homes."
Patients on HIV treatment are missing doses. People who were stable are disappearing from care. Patients on long-acting injectable antiretrovirals, which must be taken on schedule to prevent drug resistance, are being detained without their medication.
"We've had a handful of patients detained by ICE. Two of them were on long-acting antiretrovirals. We had to help them figure out what they would be on in the meantime."
The same picture appears in every region: a community-wide mental health crisis that is not being measured and not being funded.
"It is a mental health pandemic. It started a long, long time ago, and now it's in full moon, because people are so afraid."
"We get calls every day from people who need help with mental health because they cannot cope. Suicide has increased. In Puerto Rico, in less than two weeks, 10 people have lost their lives."
Organizations are closing or shrinking in real time. Sister organizations with thirty-plus years of history have closed permanently. Every staff member laid off represents years of trust built with patients who were already hard to reach. That trust cannot be rebuilt by restoring a budget line.
"Sister organizations that had been in existence for 30-plus years, serving trans and Latino people, have closed their doors."
Federal grant restrictions are forcing organizations to remove the very words that name the communities they serve. Anything labeled Diversity, Equity, and Inclusion (DEI) has become a liability. Trans communities, already underrepresented, are being explicitly removed from research and care records.
"We had to completely eliminate trans communities from all the research we did. In a Southern city that needs it so much — where they are about 50% of HIV cases per year."
If you cannot name the community you serve, you cannot raise money for them, you cannot recruit staff for them, and eventually you cannot find them. That is the design.
This is different from burnout, and it deserves to be named separately. It is not simply the result of overwork or lack of rest. Moral injury occurs when people are forced, through law, funding, or policy, to act against the very values that brought them to this work. It is the wound of being turned into a participant in the harm you dedicated your life to preventing.
"I haven't been coping. There is so much to process that I often dissociate from the world to protect myself. And then when I can, I sleep."
No one enters HIV care to choose which patients to abandon. No one becomes a community health worker to tell someone they are not allowed to use words for who they are. No one trains as a researcher to erase their own history. Yet that is what the work requires right now.
These strategies will not reverse federal funding cuts. They will not end immigration enforcement. What they can do is keep people engaged in care and connected to trusted relationships through this period.
"It is a promise we have made as an agency — not to abandon them, and to let them know they have us as a support."
When people stop coming to appointments, organizations are not waiting for them to return. They are reaching out, calling, arranging transportation, doing home visits, and locating patients in detention when needed. Re-engagement is urgent clinical work. Telehealth, mobile testing, and home visits are forming the backbone of care under current enforcement conditions.
"If people can't come in person, we call them. If they answer, we do a phone or Zoom visit."
When official institutions have lost credibility, the people patients listen to are the ones who already know them: promotores, community health workers, peer navigators, and outreach staff who come from the same community as the patient.
"I adore community health workers. They are fantastic leaders of change. The most important piece is that they are a trusted source of information in communities that need this information right now."
Safety is being rebuilt through the signals people encounter the moment they approach care: the clinic entrance, waiting room, intake process, staff identification, and the organizations visibly associated with the clinic.
"If patients come in and we know they're undocumented, or they tell us at triage, they go directly back to a secure patient care area. They don't have to wait in the public waiting room."
The fear people are feeling is not a misunderstanding to be corrected. It is a rational response to an environment that is, in fact, dangerous. The work is not to talk people out of being afraid. It is to acknowledge the fear, share clear and accurate information about rights and options, surround people with trusted relationships, and refuse to let them face the fear alone.
"Talking to each other, building strong relationships, following up, checking in — that's the one thing that is ultimately going to save us. Making sure we are not alone through all of it."
"…Many people are feeling afraid right now, and you are not alone in that. We want you to know that your health and safety matter to us. We can talk through options together, including phone or video visits, transportation support, medication refills, or other ways to help you stay in care. You do not have to do this alone. If coming to clinic feels unsafe, tell us what would help you feel more comfortable, and we will work with you…"
Every patient-facing strategy is being carried out under intense pressure: defunded, surveilled, threatened with loss of nonprofit status, and staffed by people who are themselves part of the affected community.
Organizations are changing their public language to meet federal restrictions while continuing the same work. The work has not changed. What has changed is how safely it can be named.
"We had to pivot. We removed the language related to gender and sexual minorities and communities of color so we could keep doing the work without explicitly naming those communities. It has driven everything more underground and covert."
GrantOtter — AI-powered grant discovery for faculty and research teams
Federal Grant Trigger Words Replacement Workbook — guidance on adapting grant language
Hemingway Editor — free tool to analyze drafts for readability, passive voice, and complex sentence structures
Organizations whose budgets relied on federal grants are moving quickly to find funding that does not carry federal restrictions. For many, this is no longer about growth or resilience. It is about immediate survival.
"We can no longer rely on NIH. We need to look at other funding sources — philanthropy, the private sector, you name it. As long as it's legal, we should accept it and invest in our communities."
Candid (Foundation Directory) — Foundation Directory and nonprofit funding
Robert Wood Johnson Foundation (RWJF) — active funding related to health equity and access
W.K. Kellogg Foundation (WKKF) — health research funding
Many federal directives are being issued without clear instructions on how to comply. Some organizations are choosing to wait, allowing bureaucratic time to move at its usual pace rather than accelerating compliance through proactive inquiry.
"Rather than reaching out and asking how to implement this, our strategy is to slow the process down. Don't ask for directions. Don't ask for guidelines. If they're not telling you, just wait it out. That alone slows the process by a few months."
Organizations are preparing not only for program audits, but for investigation, litigation, public scrutiny, and threats to their nonprofit status. Legal preparedness is no longer a back-office function. It is part of day-to-day organizational survival.
"A medical-legal partnership model — having an attorney involved — can help inform providers on how to create a safe space, equip them with legal information, and at the same time provide patients with information, as well as referrals and linkage to legal services."
Partono et al. describe how medical-legal partnerships can support organizations navigating policy change, patient advocacy, compliance concerns, and legal threats affecting HIV care delivery.
The people doing the work inside these organizations are themselves part of the communities being targeted. Leadership goes first. Leadership names openly that staff are part of the affected community. Leadership models care. Caring for staff is not separate from sustaining services. It is the condition that makes sustained care possible.
"As a direct supervisor, first they are my staff. I need to know they are well. I offer to help. I go with them. I want to go in front of them, so I know they are okay."
Harris et al. describe opportunities for healthcare leaders to address workforce trauma while sustaining care delivery in high-stress environments.
The same problem is emerging across regions: this moment is designed, in part, to isolate. Funding cuts eliminate the shared programs that once brought organizations together. Layoffs empty the tables where collaboration used to happen. Language restrictions make it harder to name common ground publicly. The fear in communities reaches leaders too.
This isolation is not incidental. It is operating as a policy instrument. The response taking shape is a refusal to accept it.
"It's isolating, with purpose, what this administration is doing. But if we can just say, 'Hey, I'm here. Did you hear that? That's crazy. I'm not listening to that' — that is incredibly impactful."
Leaders at different organizations are calling each other, texting each other, checking in regularly. This is not networking. It is peer support.
"Constant communication helps. We have a network. 'I got this — have you received this? What do you have there?' That exchange of resources and information is so much more important now."
Bringing people together, in person whenever possible, has become urgent at a moment when isolation is the dominant condition. The form varies, from informal charlas to structured regional summits. The content is secondary to the act itself.
"I'm going to start informally having charlas, because there is a huge need to talk, to share, to cry together. Most of us don't have money — but convening people in person, like the summit last year, was so empowering."
The threat is not specific to HIV. It is legal, political, economic, and cultural. A response limited to one sector cannot meet it at scale.
"The path forward is having coalitions not just within the medical field, not just within the HIV field, but including government and private industry."
Under conditions of scarcity and fear, organizations serving the same communities can end up competing. Intentional solidarity is the refusal of that dynamic.
"What I always do is collaboration and intentional solidarity. If an agency comes to me with $5,000 or $1,000 to organize a Latino event, I'm not going to be selfish. I'm going to share it. There are ways to be intentional about collaborating."
When people lack accurate information about their rights, their coverage, and what services still exist, they disengage — not because they do not care about their health, but because the information they are navigating has been deliberately degraded.
When official public-health channels are degraded or distrusted, the organization that stays present in the community with accurate, trusted information is functioning as a lifeline. Education is not upstream of care. It is care.
"They need to push on educating people that no matter what their legal status is, they have access to medication and treatment. Make it more accessible. Spread the word to these communities, because they probably don't know."
National Immigration Law Center (NILC) — Know Your Rights
Immigrant Legal Resource Center (ILRC) — community education materials, legal training, multilingual Red Cards
Informed Immigrant — multilingual immigration information and practical guidance
When institutions long relied upon for accurate public-health guidance can no longer be trusted, organizations that remain credible in their communities take on a distinct role: identifying, translating, and distributing reliable science through channels that have not been compromised.
"Evidence-based information does exist. It is coming out through different avenues — the American Academy of Family Physicians, the American College of Physicians, ACOG. These medical societies are putting out great information that is useful for our communities."
For the moment, federal advocacy is no longer a productive path for many organizations. The response taking shape is to redirect advocacy capacity to the state level, where federal directives are still interpreted and implemented, and where meaningful wins remain possible.
"Our focus has to be on the states and working with state partners to fill those gaps and create mitigation strategies, so the impact is not as heavy in our states."
Common Cause: Find Your Representatives
USA.gov: Elected Officials Directory
5 Calls — app that helps users quickly contact elected representatives about current policy issues
Participants described how Latino and LGBTQ+ communities are often portrayed as threats rather than as families, neighbors, workers, and community members. In this environment, sharing real stories through social media, community spaces, and public conversations becomes an important form of advocacy.
"People have to mobilize. It starts small. It starts with using your platforms and social media to share uplifting stories of trans people and Latino people. We are not these monsters. We are people who come from the families we live among."
Define American is a nonprofit focused on immigrant storytelling, media representation, and narrative change. Their 'Immigrants Belong Toolkit' is available at defineamerican.com/research/immigrants-belong-toolkit.
For 501(c)(3) organizations, electoral preparation is not the same as electoral activity, and the legal limits are real. But within those limits, there is substantial work organizations can do to ensure their communities are informed, registered, and prepared to participate.
"Getting ready for midterm elections — how are we going to show up? It is very important that there is a clear line of communication with communities, and a clear plan. Hopefully we will win a couple of seats. I am optimistic, despite the mess."
Nonprofit VOTE provides practical guidance, toolkits, and legal resources to help nonprofits support voter registration, education, and community participation within 501(c)(3) guidelines.
"We need a united front and a unifying message — not 'me against you.' The message has to be: what is being dismantled in our country is not just going to affect me. It may affect me right now, but eventually, when they're done with me, they're coming after you."
Organizations such as Defend Public Health have been garnering recognition for grassroots organizing efforts on national public health priorities. Visit their site to see upcoming and past legislative actions that need your support.
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Community members praying the rosary outside an ICE facility in Atlanta — advocacy as an act of faith and presence.
Photograph: Carlos SaldanaThis guide began with a promise made at ¡Adelante! 2024 — to re-ignite the passion and vision we shared at that gathering, and to carry it forward through a much harder moment.
The strategies described here will not, on their own, restore federal funding, end immigration enforcement, or rebuild Medicaid coverage. What they do is keep people's voices alive and patients engaged in care through this period. They keep organizations functioning. They keep relationships intact. They keep the field connected to itself.
There is a path forward. It runs through community health workers and promotores who know their neighborhoods. It runs through clinic protocols that protect patients at the door. It runs through legal counsel that affirms the work rather than retreats from it. It runs through state-level coalitions that include partners outside of HIV. And it runs through every act of solidarity, from an outreach event in a rural neighborhood to a coordinated grant decision between two organizations who would once have competed.
"We cannot allow them to keep us in the margins of society because of fear. We have to organize, strategize, and you know, the work will continue. We need to use that fear to strategize and figure ways to fight back."
Organized by the kind of support they offer. Inclusion does not imply endorsement, and links or eligibility requirements should be verified before sharing with patients, staff, or community members.
Downloadable figures and visual materials from the Voces Latinas field guide. Click any card to download.
