July 2024

From left to right: Alex Bautista, Daniel G. Garza, Aldonza Milian

July is National HIV Awareness Month. Here are some key things to know.

HIV stands for human immunodeficiency virus. It attacks cells in the immune system that usually help fight infection. That makes a person more vulnerable to diseases. HIV is commonly passed on via bodily fluids. Unprotected sex or sharing a needle to inject drugs are the main ways it spreads.

Human bodies can’t get rid of HIV. There’s still no cure for it. If you have it, you have it for life. Untreated HIV can lead to AIDS.

AIDS stands for acquired immunodeficiency syndrome. It’s the final stage of HIV infection.

People with AIDS have very low white blood cell counts. If they don’t take HIV medicine, they may not live more than a few years.

Fortunately, there’s an effective treatment. An HIV medicine called antiretroviral therapy, or ART, can reduce HIV in the blood to a level so low it can’t be detected. People with HIV whose virus particles are suppressed can live long, healthy lives.

But many people don’t know about these new advances. That’s why raising awareness about HIV and AIDS is so important—and why the All of Us Research Program is doing its part. We’re helping to increase knowledge, which in time can improve preventive care and make treatment more inclusive.

And we have some help. Our participant partners, called Participant Ambassadors, support the program. They represent All of Us and sit on committees, boards, and task forces. They provide input on privacy, security, and research priorities.

We recently sat down with three Participant Ambassadors who work in the HIV/AIDS field:

• Aldonza Milian is an associate vice president at Sun River Health, an organization that provides health care in New York City, Long Island, and the Hudson Valley. She oversees HIV case management and programs and medications aimed at reducing the risk of getting HIV. She also does community health education, outreach, and HIV counseling and testing.
• Alexander Bautista is a program manager at AIDS Alabama, where he works to create a safe space for all LGBTQI+ Hispanic/Latino community members. He’s also a coordinator for Hispanic/Latino college students and an advocate for the Hispanic/Latino community throughout the state.
• Daniel G. Garza is a patient advocate who uses social media to produce content about HIV, cancer, and mental health for LGBTQI+ communities. He is a certified life coach, an actor, a stand-up comic, and an author.

How did you first become interested in HIV and AIDS issues?

Aldonza: I was born in the Dominican Republic and moved to New York at age 5. I grew up in the south Bronx. In the early 1990s, the news was broadcasting stories about people dying of AIDS. I learned about the death of Ryan White—one of the first children with AIDS—and the HIV diagnosis of Magic Johnson. I also saw people in my neighborhood dying of AIDS. The high impact in my community made me want to learn more about it.

Alex: I was born and raised in Tabasco, Mexico. My family moved to Alabama in 2009, when I was 14. In 2019, when I was in grad school, I was recruited by Hispanic/Latino outreach coordinator Jean Hernandez at AIDS Alabama. Jean’s passion for making a difference was why I became interested in HIV issues.

Daniel: I was born in Monterrey, Mexico, and moved to Dallas in 1973. In September 2000, I was diagnosed with HIV. In June 2001, when I was living in south Texas, I was interviewed by Univision, during a segment on National HIV Testing Day. I spoke about the importance of Hispanics/Latinos getting tested—and that’s when my life as an advocate started.

How, when, and why did you become a Participant Ambassador with All of Us?

Aldonza: I’ve been a Participant Ambassador for more than 2 years. When an All of Us recruiter came to Sun River Health and told us about the program, I wanted to learn more. So I signed up as a study participant. Then, a few months later, the recruiter talked to me about becoming a Participant Ambassador. And I’ve been doing it ever since.

I believe that because of my lived experience and my experience as an All of Us participant, I have valuable feedback to share. And it’s a great opportunity to provide input on specific aspects of the program.

Alex: A big part of our job at AIDS Alabama is community outreach. I work closely with those who identify as part of the LGBTQI+ Hispanic/Latino community. At one of our events, I met an All of Us recruiter and learned there was a lack of LGBTQI+ Hispanic/Latino representation. That’s why I joined the Participant and Community Advisory Board in Alabama. In 2022, I took a seat on the National Participant Advisory Board.

Daniel: I first learned about All of Us at a conference called “Advancing the Science of Cancer in Latinos” in 2022. I was a guest speaker; I found All of Us during the poster session. I said to the person presenting, “This can’t be ‘all of us,’ because I don’t know about it.” I soon signed up to be a participant and asked, “What can I do?” The response was, “Become an ambassador.” And here I am!

What’s a typical day like for you, and what are your longer-term goals?

Aldonza: In my current role as the associate vice president of grant-funded clinical care, I develop and implement Sun River’s HIV care management program. I work with a team to make sure that support services are in place. I also oversee recruitment, hiring, and personnel management for the Genesis (HIV) Program.

My journey in the field of HIV/AIDS is just beginning. But I know I want to help us get to a place where we have lifesaving treatments and HIV prevention interventions that allow people with HIV to live longer and healthier lives.

Alex: Centro de Acceso para Latinos en Alabama (CALA) is a program at AIDS Alabama. CALA serves two populations: 1) those living with HIV and 2) LGBTQI+ Hispanic/Latino people, through a group called REAL (Revolution. Evolution. of Latinx in Alabama)—the only group in Alabama that serves LGBTQI+ Hispanic/Latino people.

Every day here is different, which I love. We provide linguistic services to our clients and participants. We make sure they have their medications and keep up with their doctor appointments. We also host support groups focused on mental health and issues around HIV and LGBTQI+ Hispanics/Latinos in the South. Community members can receive free testing on site anytime.

As I advance in my career, I want to start publishing scholarly articles and conduct a qualitative study of Hispanics/Latinos in Alabama living with HIV. My goal is to increase visibility in the state and in academia.

Daniel: A Day in the Life of Daniel G is anything but typical. I produce and host a livestream show with my partner, called The Christian & Daniel Show. I record videos for my series, called Daniel’s Day. And I’m always working on my main causes: HIV, anal cancer, and mental health.

I also visit clients to do coaching sessions. And I travel for work too—attending conferences, facilitating trainings, and emceeing events. I try to sneak in a nap when I can!

On my vision board are the words “Travel Around the World.” And my three main passions are advocacy, spirituality, and entertainment. I want to tell my story, coach people, and collaborate with other advocates in other countries. I want to show folks that nothing—not HIV, not anal cancer, not even an ostomy—can stop me from reaching my goals or making my dreams come true.

What are your favorite parts of being a Participant Ambassador? What are the biggest challenges?

Aldonza: My favorite part is the experience of connecting with people and sharing different points of view. The biggest challenge is not being able to engage with the community in person. Our meetings are virtual.

Alex: The most rewarding aspect is learning how we are advancing and prioritizing minority communities across the country. As a Chicano in Alabama, I feel seen and heard by this program and its initiatives. The biggest challenge is seeing that there’s still lack of representation for many LGBTQI+ Hispanics/Latinos living with HIV—especially here in the Deep South.

Daniel: Being part of the national board and the chair of the Participant Ambassador Committee is a pleasure. Getting to know folks from different walks of life and different diagnoses is the fun part of this job. I also love being interviewed. I’m a ham for attention! 

The challenge is making sure that I’m always respectful of everyone’s personalities and that my comments, suggestions, and opinions are moving the conversation forward. I never want my ego to get in the way of who matters and what matters.

What else do you want newsletter readers to know about HIV/AIDS and All of Us?

Aldonza: Over the years, we have learned a lot about HIV/AIDS. And today, a lot of people living with HIV are thriving. But we have to continue those efforts. We still need to address stigma and social determinants of health. And more research is needed to help end the HIV epidemic.

The All of Us Research Program is part of that effort. It’s helping to raise awareness and increase knowledge in marginalized communities.

Alex: The number of Hispanics/Latinos in Alabama is on the rise; the number of new HIV cases is too. Hispanics/Latinos living with HIV here are still an underrepresented community that faces multiple challenges. Extreme stigma is one of them. That’s why we have to keep advocating, creating awareness, and fighting against stigma.

We also need to address the lack of literature for this community. I want to encourage readers, academics, and researchers to expand their horizons on our work. The All of Us Research Program is doing a phenomenal job, but we need to further empower our communities, and we need to tell everyone’s story.

Daniel: For anyone reading this interview and wondering how a transmittable infection like HIV can be affected by genes, there are three factors at play: 1) susceptibility, 2) progression, and 3) treatment. Your DNA can increase your risk of contracting HIV. It can affect how quickly HIV progresses to AIDS. And it can determine how treatment works for you.

Immigrants need to know their DNA. I often say, “Immigrants leave their medical history at the border.” They forget how important it will be once they move to the U.S. Or maybe you’re like me, and your parents didn’t talk about medical history. Regardless, doing research about your DNA is one of the most important things you can do.

That and remembering to take naps! 

All of Us is designed to bring together people from different communities to advance precision medicine. Already, more than 11,000 researchers are using the data to expand what we know about health and disease. We stand to learn even more.

Later this month, the program will allow commercial companies to apply for access to the Researcher Workbench. This will allow researchers at those companies to register to use it. These companies fund most of the medical research in the United States. And they could further therapies that benefit our communities. These companies and researchers will be held to the same strict rules that have helped researchers use the data responsibly for the past four years.

Our vision for broad data access has been a core value since the program’s launch. It is supported through our participants’ ongoing partnership with the program and contributions of data.

We have been intentional as we have increased the number and types of researchers who can use All of Us data. We have done this over time to make sure our security and monitoring could support researchers’ use. This update will bring more researchers from different backgrounds into the Researcher Workbench. This will help spur new ideas for using the data to drive research forward.

Commercial Companies Further New Drugs and Therapies

Commercial organizations, like drug companies, have a unique role that makes them vital partners in translating research findings into products people use. With access to data from sources like All of Us, these organizations may be able to develop new drugs or tools that are tailored to each person. This is only possible with access to diverse datasets. 

Diverse Participant Data Can Help Develop Treatments that Work for More People

All of Us data will be an important tool for these companies. That’s because of the diversity of our program participants. People from different backgrounds may have different things that affect their health. These may be things like their environment, behaviors, or DNA. For example, researchers have found more than 275 million new DNA variants in the All of Us dataset. They were able to find these new variants because a lot of the data came from participants from communities that were left out of research in the past.  

A better understanding of the things that affect health gives researchers new areas to study. And that may lead to new medicines. Researchers could also find ways to predict and prevent disease risk to help more people.

Data Security and Privacy

Our plans for this update started with a focus on data privacy and security. We make participant data available to researchers through a secure computer system. This is the cloud-based Researcher Workbench platform. Researchers have to conduct their projects on this platform. They are not allowed to download individual participant data to their own computers to do their work. Doing the research on our platform also lets us review projects. And we can instantly disable data access, too. The data we let researchers access does not include names or other information that directly identifies participants. We also encrypt the data. That means we scramble it so the information can’t be understood unless it is accessed by people who have permission.

Rules for Using the Data

We also have rules that researchers and their companies must follow. For example, researchers are not allowed to try to identify any participant. They must use the data only for health research. And they cannot use the data in any way that may cause harm to a person or group.

Companies that want their researchers to access the Researcher Workbench must first sign a contract agreeing to make sure their researchers follow our rules. This is called a Data Use and Registration Agreement.

Researchers also have to sign a contract that says they will follow our rules. This contract is called the Data User Code of Conduct. Researchers must re-sign this contract every year if they want to continue using All of Us data.

Companies and researchers can face legal or financial penalties if they break our rules.

Helping Researchers Use the Data Well

Researchers who use All of Us data come from all over the world. They use it for many types of health research. As part of the steps researchers take for data access, they must take an online training. They must also pass a test on ethical and responsible research. This helps us make sure they fully understand our rules. Researchers also need to tell us how they plan to use the data. Researchers must repeat this training every year. You can see their plans in our Research Projects Directory. 

Our Resource Access Board (RAB) is a group of participants and experts from All of Us. This group does regular reviews of researchers’ projects. Participants and members of the public may request that the RAB review a specific project. The RAB reviews projects randomly and when researchers ask for help. The RAB has reviewed more than 600 projects so far. They often find ways to strengthen projects, instead of stopping them.

Building Momentum of Scientific Discovery

Science requires data and teamwork on a massive scale. All of Us can support even more impactful studies and partnerships. We can do this by inviting researchers from across the entire health research community to use our data.

Thank you for your participation. Because of you, we’ve created one of the largest and most diverse datasets in the world. Your data makes discovery possible that can improve the health of people in the United States and beyond.

Billy A. Caceres knows what it’s like to feel like an outsider.

Throughout childhood, Billy moved back and forth between the Dominican Republic, where he was born, and the United States, where he was raised and educated. As a result, he felt disconnected from both countries and cultures. Adding to his discomfort was a growing awareness that he was gay, a difficult fact for him to acknowledge in his culturally conservative homeland.

Today, he credits his early experiences for propelling him to a research career in which he can advocate for others who have been marginalized. He currently serves as an assistant professor at the Center for Sexual and Gender Minority Health Research at Columbia University School of Nursing. There, he uses All of Us data to gain insights into minority health disparities and find ways to improve long-term outcomes.

“Much of the research that’s been done with LGBTQ people has been around mental health, sexual health, and substance use disparities,” Billy said. “What we know is that depression, anxiety, alcohol, and tobacco use are all risk factors for chronic diseases, like cardiovascular disease,” he added. “The work that I’m trying to do is move the needle forward and to see, further down the line, if people continue to have these risk factors as they age, will they eventually develop chronic conditions like heart disease or cancer at higher rates?”

Curiosity and Determination Cultivated in Childhood

In 1985, when he was 6 months old, Billy’s parents immigrated to the United States and settled in the Bronx. Billy attended preschool and the first few years of elementary school in New York, learning to read and write in English. His parents decided to move back to the Dominican Republic when Billy started third grade. Though his parents spoke Spanish at home, he didn’t read or write the language of his peers at his new school.

“I would pick up my mom’s Cosmo magazines in Spanish to try to teach myself how to read in Spanish,” Billy recalled. He relied on his mom for homework help. “That’s when I learned that the ‘h’ is silent in Spanish.” For example, the word for hello in Spanish, “hola,” is pronounced “oh-la.” “In my little brain, I thought I needed to know all these things because the kids at school already did.” He felt that he didn’t fit in.

Billy faced another tough transition in middle school, when his parents divorced and his mother moved him and his younger sister back to New York. The three shared a bedroom in his aunt’s house in Baldwin, on Long Island, a suburban and, at the time, mostly White middle-class community 27 miles from the Bronx.

“I was the foreign kid when I was in the Dominican Republic, and then I became the foreign kid here, even though I spoke English fluently,” Billy said. Making his transition more difficult was being targeted as a gay teen. He was frequently disciplined for using what he called his “smart mouth” to defend himself.

“When people attempted to bully me for being gay, I stood up for myself. I was a queer kid, who was also a person of color, who was also now an immigrant,” Billy said. “Most of the kids around me were more affluent, their parents weren’t divorced. We had very different experiences.”

Billy turned to his studies, immersing himself in honors classes throughout high school and becoming active with volunteer community service opportunities. He visited the elderly at nursing homes and senior centers, cleaned up trash along his town’s beaches, and planted marigolds around the town center. He also participated in the student human rights council at Baldwin Senior High School, which renewed his interest in issues of equity and inclusion.

Compassion and Caring for Community Sparks Interest in Health Research

Throughout his childhood, Billy was keenly aware of people in his community who had been disadvantaged, and he wanted to help. Whenever he saw a person experiencing homelessness, he would cry. “From very early on, I was a sensitive child,” Billy said. His mother was concerned when he decided to move to New York City for college. “She didn’t think I was strong enough to make it, and I guess she was pleasantly surprised. I realized along the way that I’m actually a very resilient person.”

As a first-generation college student, Billy worked and trained as a peer health educator, informing students about smoking cessation, drinking in moderation, and sexual assault awareness. These interactions with students and his trainings influenced his decision to pursue nursing and public health.

“Being a peer educator was one of the best experiences I had in college,” Billy says. “Not only did we learn about the psychosocial aspects of alcohol and drug use, but we also learned about the biology behind it, how our body metabolizes drugs, which I found really fascinating.”

Billy combined his interests in biology and societal inequities and completed his bachelor’s degree in political science and his advanced degrees in nursing and nursing research. The field of nursing allowed him to translate political theory into health practice. At NYU’s Rory Meyers College of Nursing, he worked as a research assistant on a National Institute on Aging grant examining elder mistreatment in primary care and dental clinics. His bilingual skills enabled him to interview Spanish-speaking patients at New York health clinics.

NYU is also where he met his longtime partner, Mike. They met as juniors when they were both resident assistants and peer educators at NYU residence halls. Mike is now a New York school teacher for children of deaf adults. Billy and Mike married at City Hall in March 2022.

Early Researcher of All of Us

Billy finished his Ph.D. in 2017 and joined Columbia University. Meanwhile, NIH’s All of Us Research Program was launching its effort to build a unique database of health information from more than one million people across the United States from diverse backgrounds. Billy was eager to leverage the data for his research and registered for access to the program’s data platform, the Researcher Workbench.

“The All of Us Research Program is right up my alley, integrating psychosocial, behavioral, and biological data to better understand health disparities,” he said.

Billy is enthusiastic about the program’s launch of its initial set of genomic data, available to registered researchers through a “Controlled Tier.” This heightened level of access to the Workbench, which also includes more granular demographic data and electronic health record data, is available to researchers who have taken additional steps and training.

Billy was one of the early researchers in the Controlled Tier, which is critical to his work and provides more detailed data on health conditions among sexual and gender minorities (SGM). He is currently building a study examining the baseline cardiovascular health disparities among participants who are SGM, compared with non-SGM adults.

“That’s what is so valuable about All of Us,” Billy said. “This program is longitudinal, so over the next 10 or 20 years, we can monitor the prevalence of participants’ chronic disease risk, like cardiovascular disease.” The All of Us genomic data, survey responses, and electronic health records all are valuable resources in providing insights into factors that may contribute to health disparities, he said.

“It’s important to study whether the disparities observed in sexual and gender minority people widen or narrow as they age,” Billy said. Ultimately, he hopes his research can lead to strategies for early prevention and diagnosis.

All of Us has given Billy the opportunity to collaborate with a community of scholars who share his deep commitment to documenting and analyzing health disparities. The goal of improving inclusion and diversity remains a work in progress, but it’s one that Billy fully intends to advance.

All of Us Seeks Input on Future Dataset Expansion

Our goal is to have the most diverse set of health data in the world. Which is why we want to add more data to our platform. In the past, we've asked you questions about your health and background. The information you've shared with us provides insights into health research. More info will make our research even more robust—and eventually improve the health of all of us. Read more in the recent announcement.

New Research Highlights Explore Risk Scores, COVID-19

Check out our most recent Research Highlights!

The June Research Highlight explores polygenic risk scores and how All of Us data is making them more accurate for everyone. Health care providers use these scores to measure your risk for certain health conditions, based on changes in multiple genes. Historically, polygenic risk scores have been more accurate for people of European ancestry than for those from other backgrounds. That’s because people from other backgrounds have often been left out of research in the past. In time, All of Us hopes to make risk scores equally accurate for everyone.

Also this month, scientists are still learning how COVID-19 affects people. Why, for example, do some people have to go to the hospital while others have mild or no symptoms? Researchers are now using diverse genetic data from All of Us to learn more about why there’s so much variance. What they learn could deepen our understanding of human health.

Visit the Research Highlights homepage for other studies fueled by All of Us.

All of Us Journey Covers Multiple Regions Throughout the Summer

Wondering where the All of Us Journey is headed? Our fleet visits different communities all over the country. When we arrive where you are, you'll see firsthand how much fun a health research study can be—and what a big difference you can help make in the future of precision medicine! 

See where we're headed next:

• July 16–19 (1 p.m. to 6 p.m.): Springfield, MA (Springfield City Library Mason Square Branch)
• July 18–19 (10 a.m. to 4 p.m.): Henderson, NV (Gibson Library)
• July 23–26 (10 a.m. to 4 p.m.): Mesquite, NV (Las Vegas Clark County Library)
• July 23–27 (10 a.m. to 4 p.m.): Colorado Spring, CO (Korean American United Methodist Church)
• July 25–28 (10 a.m. to 4 p.m.): Roswell, NM (Monterey Shopping Center)
• July 30–Aug 2 (9 a.m. to 2 p.m.): Salt Lake City, UT (Mexican Consulate in Salt Lake City)
• July 30–August 2 (10 a.m. to 4 p.m.): Denver, CO (Atlantis Community Inc)
• July 30–August 2 (10 a.m. to 4 p.m.): Hartford, CT (Hartford Public Library)
• August 6–9 (9 a.m. to 3 p.m.): Wheaton, MD (Marian Fryer Town Center)
• August 6–9 (9 a.m. to 3 p.m.): Silver Spring, MD (CASA de Maryland)
• August 6–9 (10 a.m. to 4 p.m.): Commerce City, CO (Our Lady Mother of the Church)
• August 8–10 (4 p.m. to 10 p.m.): Salt Lake City, UT (Friendly Island Tongan Festival–Jordan Park)
• August 13–16 (10 a.m. to 4 p.m.): Aurora, CO (H Mart)
• August 13–16 (10 a.m. to 4 p.m.): Star, ID (Star Branch Library)
• August 13–16 (10 a.m. to 4 p.m.): Washington, DC (Mary’s Center)
• August 20–23 (10 a.m. to 4 p.m.): Boise, ID (Living Independence Network)
• August 20–23 (10 a.m. to 4 p.m.): Cheyenne, WY (Laramie County Library)
• August 27–30 (10 a.m. to 4 p.m.): Washington, DC (Whitman-Walker at 1525)
• September 3–6 (10 a.m. to 4 p.m.): Washington, DC (Whitman-Walker at 1525)
• September 6 (9 a.m. to 2 p.m.): Coeur D’Alene, ID (McEuan Park)
• September 10–11 (10 a.m. to 4 p.m.): Spokane, WA (Washington State University)
• September 17–20 (10 a.m. to 4 p.m.): Butte, MT (Butte Silver-Bow Public Library)
• September 17–20 (10 a.m. to 4 p.m.): Council Bluffs, IA (All Care Health Center)