Interview with Luis Mares, Director of Community Mobilization Programs at the Latino Commission on AIDS
May 15 marks National Hispanic Hepatitis Awareness Day (NHHAD), a collective movement aimed at educating and mobilizing Hispanic/Latinx* communities and their partners throughout the United States, Puerto Rico and the U.S. Virgin Islands to increase their awareness and knowledge of viral hepatitis and its impact on Hispanic/Latinx communities. NHHAD is a national community mobilization and social messaging campaign that unites the Hispanic/Latinx community in efforts to provide education and raise viral hepatitis awareness—including promotion of screening, prevention, care, and the availability of effective therapies for hepatitis B virus (HBV) infection and curative therapies for hepatitis C virus (HCV) infection. This year’s theme is, “Viral Hepatitis: Let’s Solve It.”
According to the CDC’s 2018 Viral Hepatitis Surveillance Report, the most recent year for which data are available, Hispanics comprise 18% of the total United States population yet accounted for nearly 8% of acute HCV cases1. Data from the U.S. Department of Health and Human Services show that despite having lower rates of both acute and chronic HCV, Hispanics were 40% more likely to die from chronic HCV than non-Hispanic whites2. In 2018, Hispanics/Latinx people had the third-highest HCV-related death rate (4.64 deaths per 100,000) among all race/ethnic groups3. While Hispanics have a low HBV-related death rate, they have the third-highest HCV death rate3.
In recognition of National Hispanic Hepatitis Awareness Day, I interviewed Luis Mares, LMSW, Director of Community Mobilization programs at the Latino Commission on AIDS. The Latino Commission on AIDS is a nonprofit organization dedicated to health advocacy for Latinos, promoting HIV and hepatitis C education, developing model prevention programs for high-risk communities, and by building capacity in community organizations. Luis Mares works to plan, develop, and implement National Awareness campaigns: National Latino AIDS Awareness Day (NLAAD) and National Hispanic Hepatitis Awareness Day (NHHAD).
Tell me about how National Hispanic Hepatitis Awareness Day (NHHAD) started. How did this day start? What organizations joined together?
NHAAD was created in 2012 and this year marks its 10th anniversary. NHHAD was created by the Latino Commission on AIDS and the Hispanic Federation as a response to the impact of viral hepatitis in the Latinx community. The Hispanic/Latinx community is often not addressed in viral hepatitis reports because we do not represent a big proportion of people living with viral hepatitis. Even though we do not get viral hepatitis as frequently as other ethnic groups, we progress quicker and die at higher rates than other groups. That is one of the reasons why we created this awareness campaign – so we can deliver education and information about viral hepatitis to the Hispanic/Latinx community, particularly for people living with hepatitis and those vulnerable to it. We chose May 15 because it is right in the middle of Hepatitis Awareness Month.
Partnership building is critical in public health. How has the Latino Commission on AIDS and the Hispanic Federation forged new partnerships and strengthened existing ones?
Partnerships are extremely important and a crucial part of our awareness campaign. Without them we cannot reach the corners of the country we want to reach. We value the power of our partnerships as a magnifier of the voice and message of the campaign. Every year at the end of our campaigns, we research organizations in different states, especially in those where we did not have reach, and we contact them via email. We inform them about NHHAD and invite them to be part of it the following year. NASTAD, for example, always participates in NHHAD. HIV.gov and AIDSVu always participate, and we are very grateful for their help in reaching many communities throughout the country. We have other partners that participate in webinars and share information with their clients. One of our main purposes is to deliver information to clients and the community so they can learn more about viral hepatitis and make better-informed decisions about their health.
How do you mobilize community organizations to create awareness for viral hepatitis?
We mobilize community organizations through our NHHAD campaigns and policy campaigns. We host webinars with topics relevant to viral hepatitis in the Hispanic/Latinx community and invite partners and other community-based organizations so they can learn. For example, this year we will have a representative from HHS talk about the newly released Viral Hepatitis National Strategic Plan. We will also have HepVu discuss the distribution of hepatitis C in the country and how Hispanics are affected by it. We have different posters and themes each year, depending on what we want to focus on. This year, our theme is “Viral Hepatitis: Let’s Solve It!” with the image of a crossword puzzle. The idea behind it is that, like viral hepatitis, crossword puzzles are not easy to solve, but we can solve it. The crossword puzzle includes different words such as, “vaccinate, cure, test, treat” that represent the tools we have available to solve viral hepatitis. We also create infographics and fact sheets that we share with our partners. Everything is written in both English and Spanish, including the website. Since our goal is to reach the Hispanic community, we need to create materials in Spanish from the start; not just translate from English to Spanish because often in the translation we lose the meaning of what we want to convey. Every year we hold a press conference on the steps of City Hall in NYC. Due to COVID-19 restrictions we did not have one in 2020 nor this year. At the press conference, we create linkages and partnerships with organizations that do not necessarily work for the Hispanic community but work with the Black and Asian communities. All of us are working together for minorities in viral hepatitis to create a bigger, louder message for our/these communities.
Our purpose is to mobilize the community so they can make informed decisions about their health. We want the Hispanic/Latinx community to know it is important to get tested for viral hepatitis. Many people think of hepatitis as the acute phase with jaundice, fever, and general malaise, and when symptoms disappear, they think they’re cured. People don’t always know the consequences of chronic hepatitis B and C, like cirrhosis and cancer, and how deadly the disease can be. We need to teach people about these things, so they know the risks and make informed decisions about treatment and getting cured.
Often in public health, we speak of chronic diseases from a place of deficit. What work is the Latino Commission on AIDS and the Hispanic Federation doing to come up with solutions to barriers surrounding viral hepatitis treatment and advocacy?
The Latino Commission on AIDS works together with the Hispanic Federation on awareness campaigns and through coalitions. The Commission has a department that works directly with clients. There, we provide hepatitis testing, patient navigation, and connect people to treatment. We do not provide medical treatment, but we connect them with hospitals or clinics that provide treatment. If clients do not have insurance, staff members work with them to ensure they can access care and services.
We also do advocacy. Every March, the Latino Commission on AIDS goes to Albany to meet with elected officials, senators, assembly members, and representatives from the governor’s office. We educate the representatives about health problems and inequities that affect the Hispanic/Latinx community in New York State, including viral hepatitis, so they can use the information while formulating budgets and policies. Lately, we have been working in coalition with different organizations around the country to create a national agenda of Hispanic/Latinx health that can be used use at the federal, state, or local level. Once it is finished, organizations will be able to use it to advocate for policy changes in their jurisdictions or on the federal level.
What structural factors exist in viral hepatitis inequities in the Hispanic community?
In viral hepatitis, as well as HIV and any chronic condition, social determinants of health are the structural factors that cause health inequities. The system and social structure of this country predisposes Black and Brown communities to be most affected by epidemics and other health issues. There are quite a few structural factors such as lack of health insurance, being an undocumented immigrant, language barriers, access to care, poverty, housing instability, food insecurity, and unemployment. All these factors have a direct effect on the health of the Hispanic/Latinx community.
What does health equity in the Hispanic/Latinx community look like to you?
Health inequities are not new. Health equity in the Hispanic/Latinx community is not only providing access to care to everybody, but also providing higher quality care to communities impacted by health inequities. We need to work on health inequities to build a healthier and more just society. In a perfect world, everybody has access to care and health insurance. We also need to address issues of food security, unemployment, and homelessness because they are all intertwined. Health equity will not be achieved in one year, but we need to continue working to create and implement better programs that provide services to disparately impacted communities.
Can you speak to parallels between the COVID-19 pandemic and hepatitis?
This pandemic showed us that health inequities exist and communities most impacted by this are the same communities that are always most impacted by other diseases (Black and Brown communities). We see with COVID-19, how the Black and Brown communities were affected the most. COVID-19 death and infection rates are higher in Black and Brown communities, similar to hepatitis. Now that COVID-19 vaccines are available, disparately impacted communities should receive more vaccines but that is not happening. We also have learned from COVID-19 that we have to address social determinants of health. We have to address poverty. We have to address education and employment.
What is the takeaway message for NASTAD’s members—health departments—and its partners regarding improved collaboration with Latinx communities and partners that serve the Latinx community?
First, we must advocate for a better surveillance system. We have an amazing HIV surveillance system but unfortunately, the one for viral hepatitis is not the same. There is not much data—in certain states—on racial/ethnic groups and other minority populations. We need to advocate for improved data collection and reporting from CDC. We also need to make sure the community is educated about viral hepatitis through awareness campaigns that provide them with information about treatment, the cure, and how to access it. We need to advocate access to healthcare for all. There are too many people living with viral hepatitis that do not know they are living with it and who need to be identified and treated. Thank you for giving the Commission and NHHAD the opportunity to be featured on your website so people can learn more about who we are, what we do, and be aware that viral hepatitis is a problem that we need to solve.
*Please note that the terms Hispanic, Latino, and Latinx are used interchangeably throughout this blog. According to the American Medical Association’s newly released Organizational Strategic Plan to Embed Racial Justice and Achieve Health Equity 2021-2023, Latinx is used as a gender-neutral/non-binary, inclusive term for people who identify as either Latinx/Latino/Latina or Hispanic. Latinx also includes those who choose to identify with their ethnic or national origin inclusive of the countries in Latin America and of the Caribbean who were colonized by Spain or Portugal. The term Hispanic also refers to a person who is from or has ancestors from a Spanish-speaking territory or country and is inclusive of Spain.