Andrea Thoumi, MPP, MSc
Area Lead, Community Health and Equity and Faculty Director, Health Equity Education at the Duke-Margolis Center for Health Policy
Gabriela Plasencia
Health Equity Policy & Primary Care Fellow
Duke-Margolis and Duke Department of Family Medicine and Community Health
Family medicine, primary care physician and National Clinician Scholar
Duke Family Medicine
LATIN-19 Executive Board Member
Equity can’t be achieved if it’s an afterthought. In March 2020, the emergency room in Durham, North Carolina was filling up with Latinx patients with COVID-19. Physicians and researchers like Gabriela Plasencia, a primary care physician at the Duke Family Medicine Center and health policy researcher, and Andrea Thoumi, a Duke health policy researcher, realized COVID-19 guidance and resources weren’t getting out to Spanish-speaking or Latinx populations. We want to thank community members and the Executive Board of LATIN-19 for their continued leadership to advance health equity among la comunidad Latina in North Carolina. La comunidad Latina is the preferred term identified by LATIN-19-affiliated community members.
Andrea Thoumi: In the early months of the pandemic, over 75% of patients coming into the ER identified as Hispanic, Latino or Latinx/e, even though Latinos represent only about 15 percent of Durham’s population, and 10 (now 11) percent of North Carolina’s state population.
Gabriela Plasencia: Latina physicians at Duke saw how COVID-19 was impacting their own family members, their own friends. We barely had the information on a timely basis in English, and we didn’t have pamphlets, videos, links, or anything to share in Spanish. I can send you clips of me sitting in a hospital room, trying to find a quiet place to translate and re-record the information in Spanish, so that we had something to share from a reputable source with patients.
Working quickly to address the issue, Dr. Viviana Martinez-Bianchi and Dr. Gabriela Maradiaga Panayotti teamed up in March 2020 to launch the LATIN-19 coalition with Duke clinicians and researchers and community-based partners. Envisioned as a way to quickly address the acute needs that la comunidad Latina was experiencing, LATIN-19 has served as a focal point to elevate community voices while coordinating and providing health and social services. Activities include organizing testing and vaccinations sites in collaboration with partners distributing food, as well as helping communities stay abreast of changing guidance and the evolving virus through reliable and culturally-appropriate Spanish language information. The coalition soon began to operate more proactively with an even more important aim: To alert policy makers to flaws in existing policies and, eventually, integrate Latinx community needs into guidance and policies before they were issued.
Ultimately, the organization became a way to rethink how pandemic policies and practices are designed, placing a premium on community organization input from the ground floor, and rapidly and directly linking that input to decision-makers in the North Carolina Department of Health and the Governor’s office. LATIN-19 continues to work on pressing health equity issues today, such as increasing health insurance enrollment, increasing health literacy, and reducing gun violence. Team members are actively engaged in various North Carolina Department of Health and Human Services Working Groups related to Medicaid Expansion and improving Latinx health equity.
Gabriela Plasencia: “LATIN-19 initially started as an organic platform .The core pillar of the work was and remains to create a space for bidirectional dialogue between community members and decision makers directly. This happens via a virtual call every Wednesday at noon. I think we’re now at something like 190 meetings since March of 2020.”
“Initially, we invited all community-based organizations, community health workers, and community members, as well as the North Carolina Department of Health and Human Services (NC DHHS) and Duke leadership. With time, we also started involving people from the University of North Carolina and North Carolina State. These actions elevated the voices of the community, which hadn’t had the opportunity to talk directly to NC DHHS or Duke leadership. This was the first-time leadership was hearing about some of the issues that patients were facing in the community.”
“LATIN-19 was very intentional about putting community members and community-based organization leaders first in the agenda– and then the CEOs, the leadership – that came after so that leaders would have to listen before giving their own presentations.”
Direct linkage to make policy change
The clinicians and researchers involved in LATIN-19 were accustomed to looking for blind spots, and they noticed major gaps in access for la comunidad Latina to COVID-19 appointments, testing, and vaccinations. LATIN-19 has implemented its work through the core values of cultural humility and social justice. Through their regular dialogue with the Department of Health and Human Services, LATIN-19 was able to quickly transmit community concerns to tweak and overcome policies that were barriers for Latinx and other under-served communities to access COVID services.
Gabriela Plasencia: “It took LATIN-19 meetings to get these stories directly from people that were affected and elevate them to policymakers, for them to make changes. For example, providers wanted to have a form of confirmation of someone’s identity after a COVID appointment was made online. But showing your picture ID is not as simple for someone who is undocumented, or who has no driver’s license. Even though, legally, providers were not supposed to ask for identification, pharmacies and clinics were asking for identification just to confirm that the person who made the appointment was actually that person. When we brought this issue to the North Carolina Department of Health and Human Services, it turned on the light bulb… and sparked important work to figure out another way to confirm identity. “
“As another example, for rapid testing …individuals were saying, during our LATIN-19 meetings, “My boss is requiring me to use a rapid test to go back to work,” but the rapid tests were mostly available at pharmacies, or you had to order them online. However, there are very few Spanish-speaking staff at pharmacies. And every test is completely different – they don’t all have the same instructions, which is a huge burden for someone who doesn’t speak English and is trying to use these tests to show that they can go back to work.”
Gabriela Plasencia: Nobody was speaking to the community directly about this issue, and the North Carolina Department of Health and Human Services and others weren’t aware of what was happening. LATIN-19 elevated this issue to the governor’s office, and that resulted in the creation of an official letter that people could take to their employers saying it’s legally not required to have a negative test and, as long as it has been 5 days since symptom onset – or 10 days since symptom onset, back at that time – then they should be allowed to return to work. Those were the kinds of direct policy changes that happened as a result of LATIN-19 meetings.
LATIN-19 also stepped in to help workers advocate for themselves and for workplace safety.
Gabriela Plasencia: With factory workers, again there was this theme of replaceability, people were fearful of reporting public health violations, like situations where they were told they didn’t need masks or could reuse masks for a month. LATIN-19 helped educate them to advocate for themselves and know that, legally, they are entitled to these protections. Similarly, we worked to have NC DHHS provide documentation that community members could bring with them to their work site, both in English and Spanish, so that they could ask for the protection they needed without being fearful of losing their job.
Gathering and presenting data to educate policy makers about the situation on the ground was key to their success.
Andrea Thoumi: “In the first month of the COVID-19 vaccine rollout, vaccination rates among la comunidad Latina was only 2 to 3 percent. NCDHHS had a publicly accessible dashboard on vaccinations, which allowed for rapid analysis. Initially, this dashboard did not include demographics, such as race/ethnicity. Advocacy by members of LATIN-19 and partnership with NCDHHS eventually led to the addition of these data to the dashboard. In response to the initially low statewide vaccination rates among Latinos, LATIN-19 began community-based events in partnership with Duke Health and other coalitions such as the African American Covid Taskforce Plus. Later, we found that these community-based events, organized in partnership with LATIN-19, reached significantly more members of la comunidad Latina than Duke or NCDHHS-sponsored events that were not organized in partnership with LATIN-19. We were able to share these findings to local and national audiences (e.g., findings published in Health Affairs Forefront).”
Building trust into services [Building from where we are, not from where we started]
LATIN-19 became involved in community testing and vaccination, providing information along with services. In the beginning, services provided by public and private entities were built for speed, not for access—a mistake LATIN-19 seeks to avoid in the next health crisis.
Andrea Thoumi: The original vaccination program was implemented to reach as many people as possible, but not necessarily as equitably as possible. Some barriers to vaccinating la comunidad Latina included identification requirements, use of known health networks where community members have experienced discrimination leading to mistrust, and limited bicultural or bilingual providers offering the vaccination. A key lesson learned is to engage community partners early in the process to identify locations and providers that are trustworthy and to create a bidirectional communication pathway to allow the opportunity for change. For example, in North Carolina, policymakers and state leaders were receptive to feedback and regularly attended LATIN-19 meetings.
“Another key lesson was providing information through materials that were created in partnership with community health workers or community-based organizations. It is important to not just translate information from English to Spanish, but to develop materials that are culturally-relevant and accessible. But you also need face to face interaction with people to be able to talk with someone about your concerns, be in that safe space where you feel like you’re able to discuss it and get a response and talk through it.”
“LATIN-19 partnered events occurred in the community. For example, we organized a big vaccination site at the Wheels Fun Park, which is a skating rink in Durham. While folks were waiting for their shot, community members could talk to someone about their concerns or questions. These events were staffed by bilingual and bicultural staff that had gained the trust of community members. We had time to be able to develop relationships, so by the time LATIN-19 was at the forefront of getting vaccinations to la comunidad Latina, LATIN-19 was already a trusted source group. Many lessons from these types of community-based events could be applied to other health equity gaps, such as primary care areas or screenings that could be happening in the community.”
Gabriela Plasencia: We realized there was a huge gap in the areas of the community that needed access to testing the most and where these resources were available, which was often far, not readily accessible via public transportation, and not in trustworthy locations from the perspective of those who needed these resources the most.
Sustaining the Bridge to Latinx and other Systemically Excluded Communities
LATIN-19 garnered critical lessons for current health inequities and the next public health emergency. Chief among them is sustaining bridging organizations that built credibility throughout the pandemic. Such organizations, like LATIN-19, are uniquely positioned to kickstart an effective and equitable response, while serving a critical day-to-day function of focusing on health policies that enable access, which is vital for our health system and crucial during a pandemic response.
As the pandemic has evolved, sustainability is becoming a major issue for LATIN-19—especially access to community health workers focused on Latinx communities. This was a key piece of the LATIN-19 mission, yet this access is now at risk. Without people whose job it is to listen to the communities and learn about barriers, it makes it harder for LATIN-19 and other community-based organizations to identify needs and work with state leaders to overcome them. When Congressional COVID-19 supplemental infusions dried up, community health workers were no longer able to serve in these capacities full-time, making it harder to sustain the work of LATIN-19 and other organizations that are essential for health and health security effectiveness.
Gabriela Plasencia: Community health workers are one of the main bridging factors and solutions to a lot of the issues that we were facing during the pandemic and continue to face. They were a helpful bridge to disseminate information when not everybody had access to a provider or physician that was Spanish speaking…and there are very few Latino physicians. Race concordance in healthcare and race/ethnicity concordance in who’s providing the messages is vital to improving trust and combating misinformation.
“It was also essential to be open and available to community feedback and community voices on a regular basis – every Wednesday there’s a meeting, and you can bring up any concerns you want at these meetings, always. There are no barriers…no one will say you can’t bring that up in this meeting. I think that also became a source of trust, that it was a consistency, the familiarity and the fact that we were always there. What caused a lot of loss of trust, especially with NC DHHS, Duke, the Department of Health, etc., was that these organizations showed up for the pandemic and, as soon as people started to say, “oh, we’re going back to normal”, all the resources disappeared. All the funding disappeared. The pop-up tents and other public forms of engagement between these institutions and la comunidad Latina disappeared.”
Andrea Thoumi: A lot of the community health workers that were part of the original outreach efforts working with the community-based organizations are not able to continue their critical work as community health workers in a full-time capacity due to lack of funding. The end of the Public Health Emergency meant the end of funding that had supported these activities. That is definitely a problem from a sustainability standpoint. These are people who are trusted in the community and who know how to do outreach and how to do education and navigation – all of those functions that are critical to increase uptake of services in communities that experience systemic exclusion. Maintaining gains reached by community health workers in the absence of funding is a big challenge right now.
Because of their work and trust built with communities throughout the height of COVID-19, LATIN-19 and other community-based organizations are instrumental in reaching the state house for Latinx and other under-served populations.
Gabriela Plasencia: As one way to sustain engagement, and because of the work that Viviana and LATIN-19 did with state leadership during the pandemic and in partnership with Mandy Cohen when she was Secretary of the North Carolina Department of Health and Human Services, they trust LATIN-19’s…true authentic engagement with the community and ability to bring community members to the table. As a result of that trust, the Department of Health and Human Services reached out to LATIN-19 about positions on the Governor’s Advisory Council for Latino health affairs and Minority Health Affairs Council.
“I’ve been very involved in those councils and in bringing up the concerns that come up during LATIN-19’s Wednesday meetings, including concerns that come up in research, concerns that come up in community conversations, and a lot of those concerns are around public health, Medicaid expansion, loss of community health workers, and sustainable funding.”
An additional key to sustaining the effort was an emphasis on formalizing health system and academic medical center recognition of the value advocacy work provides to clinic populations to ensure that future social justice and public health-minded physicians can continue to contribute to this work with decreased risk of overwork and burnout.
Gabriela Plasencia: Members of LATIN-19 were able to create a career advancement or promotion pathway for advocacy, so that advocacy work counts toward tenure track or promotion. That was helpful in making it somewhat sustainable from the provider perspective to engage meaningfully in advocacy work during protected work hours.
Continuing support for community-based groups is also the best response against misinformation.
Andrea Thoumi: It is so important to still invest in community-based networks and coalitions that serve as a bridge between different entities and increase trust. These networks have made LATIN-19 so impactful. Before the pandemic, there was no convener for Latinx health equity in North Carolina. Even after four years, we still meet every week on Wednesdays, engaging in conversation with community members, community health workers, community-based organizations, academics and researchers, educators, and public health leaders. You have to remember that many community members have experienced discrimination and racism when engaging with the health care system. The lack of trustworthiness from health systems has led to mistrust. LATIN-19 has become the trusted source of information in response to this mistrust.
Gabriela Plasencia: “Trusted messengers were the number one way to combat misinformation…and messages coming from Latino physicians or providers, Latino community health workers, and Latino community-based organizations. They felt that the message coming from, for example, a white doctor may not be as trustworthy as coming from another Latino because a white doctor wouldn’t understand what they’re going through, wouldn’t understand what their preferences are. A lot of times there’s fear of reporting some of the natural remedies individuals are using at home.”
The Coalition Continues, but Funding is Lacking
Today, LATIN-19 has evolved to become an organization focused on health care advocacy and literacy, and combating health misinformation among la comunidad Latina in North Carolina.
Gabriela Plasencia: During the pandemic, LATIN-19’s work was very focused on acute needs – initially testing and also partnering with community organizations for food distribution given the high level of food insecurity among Latinos in North Carolina. That work transitioned to vaccinations and then to therapeutics. Now, we’re doing a lot of work around health insurance enrollment and getting more focused on structural issues, such as health insurance and health literacy.
“Collaboration with community health partners…has transitioned to rely on our community-based organization partners to conduct direct outreach. Now we LATIN-19 provide our community partners with trusted information and resources to help inform them about what’s happening with COVID, with RSV, with flu…what we’re seeing in the community and which policies are working or not, instead of conducting the outreach ourselves. We recognize that our community-based partners have been doing that work a lot longer and are best suited for that work. Therefore, we help inform and provide resources while they conduct the direct outreach. And if they feel there is a need for a trusted Latinx physician or researcher or representative at outreach events, we are always available to engage more directly. “
“As members and executive board members of LATIN-19, we also have been trying to figure out ways to assess really what came of LATIN-19, how it was able to help, and what are ways to upscale this to other communities, organizations, into other areas, that don’t have coalitions similar to LATIN-19.”
Gabriela Plasencia: “Going forward, number one, it’s vital to have sustainable funding for community health workers, not only for the Latino population, but the African American population and immigrant populations in the community that may not speak English, or may have other barriers to care, and a community health worker workforce that is established and known in the community. So that when a crisis arises, we can easily deploy them.”
“Number two is the importance of sustaining bridge mechanisms like LATIN-19 that connect the community and community-based organizations to State, Federal, and institutional level organizations, so that there is a sustainable connection that is maintained throughout and can also be relied on and called upon when a crisis occurs. LATIN-19 is a good example of that sort of bridge mechanism where the structures are in place, we have those connections, and if another crisis were to occur, which occurred with monkeypox. Now we’re getting a lot of questions about RSV vaccinations for pregnant women, children, and older adults. These are things that come up all the time, and we’re constantly working with the North Carolina Department of Health and with the hospital system to address how best to reach la comunidad Latina about these and other upcoming issues.”