May 19 marked National Asian & Pacific Islander HIV/AIDS Awareness Day (NAPIHAAD). NAPIHAAD is observed annually as a day to raise awareness and promote action to address HIV among Asian and Pacific Islander (API) communities nationwide. According to the latest data from the Centers for Disease Control and Prevention (CDC), Asian people, who comprise 6 percent of the total United States population, represent 2 percent of new HIV diagnoses in the United States (CDC, 2021). A 2021 CDC report indicated that between 2017 and 2021 saw a reported nineteen percent decrease in HIV diagnoses in the United States among Asian people (CDC, 2021).
Unfortunately, data relating to Pacific Islander peoples hasn’t been released by the CDC. Estimated rates of HIV transmission within this community remain unknown. Information assessing self-reported data on the occurrence of HIV-related stigma, overall health, emotional support, trends in food insecurity, unemployment, and unstable housing among people with diagnosed HIV among API communities is also unavailable. While HIV rates among API communities are relatively low compared to other racial and ethnic groups, the lack of comprehensive data among API communities and HIV demand attention (CDC, 2021).
The lack of attention and the effects of HIV-related stigma among API communities presents challenges regarding transmission, testing, and treatment. To address HIV health outcomes for API communities, a significant investment in tailored, culturally humble and accessible treatment meeting the API needs is paramount. While data measuring driving factors is unavailable, API leaders in the HIV field those with lived experience call for a comprehensive approach addressing the compounding factors that may lead API individuals to deprioritize HIV. Such factors include the need to address other pressing challenges, including socioeconomic inequities; cultural customs that present barriers to discussing topics such as sex and gender identity; language barriers; race/ethnicity driven stereotypes contributing to the invisibility in strategies to address HIV among API communities. They also note limited research on HIV among API communities; and data limitations related to race/ethnicity misidentification of API individuals that could lead to underestimating HIV rates.
While AIDS United’s work in addressing the HIV epidemic has a concentrated focus within the United States, it is critical to acknowledge the global effects HIV has among API communities. Dr. Maureen Goodenow, the Director of the Office of AIDS Research for the National Institutes of Health (NIH) wrote in her open letter recognizing NAPIHAAD to NIH partners, “The HIV/AIDS pandemic continues to grow in many parts of the world and remains a challenge in numerous areas of the Asia Pacific, including Indonesia, Myanmar, Papua New Guinea, the Philippines, South Korea, and Thailand. As in the U.S. and other regions, stigma and discrimination are persistent barriers to HIV prevention and treatment and other health-related services in Asia and the Pacific. Expanding the HIV prevention toolkit, including the development of a safe and effective vaccine, will be crucial for addressing this global problem (Maureen M. Goodenow, 2024).” AIDS United had the pleasure of speaking with activist, artist, and humanitarian Niccolò Cosme about their work in addressing HIV in the Philippines and their internationally celebrated HIV stigma reduction campaigns.
Can you tell us about yourself?
Transcript: I am Niccolò Cosme. I am a creative director and photographer. I started photography in 2001. I’ve also been running my own digital advertising agency, which is called Howwwl Digital. I’m also a conceptual photographer. I do a lot of conceptual art that I’ve been able to merge together with my advocacy projects. In 2011, we established The Red Whistle. That’s an organization focusing on sexual health, HIV/AIDS, mental health, and human rights. It was inspired by a project I did, which was Headshot Clinic during World AIDS Day in 2008. It was a project that I had conceptualized upon hearing of a friend’s coming out about his status, about HIV, during that time, and it was very successful in terms of awareness. We were able to tap a lot of contacts from media, and press, and a lot of online traction as well, which made it very successful. We’ve been doing that project yearly ever since. This is why, in 2011, we decided to actually establish an organization because we realized that the number of cases were getting much higher and that there was a need to strengthen the advocacy by amplifying the messages that were needed among the youth.
You mention that your friend’s disclosure of their status played a role in your motivation to begin work in the HIV field. Can you tell us more about your work and the motivation that keeps you going?
Transcript: The motivating factor definitely was that feeling that it was much closer to home. Prior to my friends coming out, we would only hear it in the news as a form of news. Statistics. Numbers. It was an eye-opener having a friend come out because it felt like–it was like what I said–closer to home. It was HIV personified, you know. So, a person living with… a friend with real struggles and stories definitely inspired me. Because, after that, there were more people who came out to me. I’ve also lost several friends as well. Those things were my initial motivations leading toward the year when we decided to come up with the organization.
The youth inspires me, and a lot from my team. We work a lot with the youth. I think it’s that energy, it’s the promise of the possibility of ending AIDS together. I think that’s definitely something that strengthens our energy.
What have you and your team done to engage with youth that has been effective?
Transcript: We were able to successfully come up with ideas that were new and really geared towards the youth. One particular example would be Save Sexy; that’s a summer program for HIV that we started years ago on the beach. We realized that every Labor Day there’s a lot of young adolescents that go to the beach. It’s such a huge miss if you don’t come up with something. We developed this program called Save Sexy, which basically has the idea of saving the concept of “sexy.” The biggest part of that messaging was to make people become more confident about their bodies and become more confident about their HIV status as well. You know, being on the beach, we didn’t want something that would look very boring. So, you know, we made it really engaging for the youth. Summer activities like beach activities as well. We brought several celebrities out on the beach.
We devised a Save Sexy March, where people would walk from one station to another, wearing a Save Sexy t-shirt with placards and banners about HIV/AIDS. It was a three-day event. It was gamified––something similar to Amazing Race. There are three teams, and then they compete among each other; parts of the activities involve repacking condoms and lube and putting them in safety packets that are eventually given away to the public. There were “HIV 101s” going around the beach and in the different areas where there were high volumes of youth. That was very successful. It went to run on for several years. We were also able to replicate it in different––because the initial ones were in Baracki, I’m not sure if you’ve heard of that beach area––we were able to successfully replicate it in different sites in the Philippines. Different cities as well.
So, we have these kinds of engaging activities. We have a lot of different activities that are very art-centric. Photo exhibits. Art exhibits. Art talks. Fashion Shows. Etcetera.
I’m glad you mentioned your art. If I’m not mistaken, you visited the United States about a year ago to showcase your latest anti-stigma photo series, TAGGULAN, in New York City. Can you share more about that project?
Transcript: I was asked to come up with a series to show for World AIDS Day, and that was in partnership with AHF. They asked me to come up with a new series. And I was, you know, conceptualizing about it and thought, “you know, maybe I’ll come up with, like, a warrior series. Because I’m from a very historical background. I grew up in––I was born and raised in Cavite. It’s the cradle, the Philippine independence, and my great-grandfathers were Katipunaneros, which basically were the freedom fighters. And I thought that it would be a great concept to put side by side. The volunteers of HIV/AIDS advocacy work––I think a lot of the the volunteers that we have right now––are warriors, and I thought, to invigorate or to like give like a sort of boost to the HIV workforce. I thought it would be a great way to come up with a theme like that, and, also I think it would be an interesting way to tell stories about people who are working in the workforce, and also people who were struggling or had struggled with it.
We had that series. It was a 14–or 15–piece series. which was very well received here in the Philippines. I had the chance to bring some of the pieces to New York last year and was able to showcase it at the facility in New York.
Transcript: It was a great experience being able to bring my works and the stories that come with it during that time because it sealed the idea that the stories are encompassing because the series and pieces were inspired by real stories of people in the Philippines. And, you know, my personal story is in there as well. What I received was that from the audience that I presented to is that the the stories were very similar. They were able to resonate with the pieces. They were able to resonate with the stories. They were grateful that there is a specific thing like an art form that you know, connects the two worlds. I think that was the main highlight of that evening. I got to talk to a lot of people that evening and share their own personal stories as well; and, a lot of people reaching out to me feeling how moved they are, because you know it validates what they feel. It validates their works as well.
What strategies or approaches have you seen to be most successful in getting people to talk about HIV?
Transcript: I would like to share that in 2011, when we started The Red Whistle, we would hand out whistles on a necklace. That was our way of raising awareness and a way to give way to be able to talk to people. So, we would hand it out in in areas where a lot of LGBTs would hang out and party, and people would ask, “Oh, what is this for?” We would say, “Oh, you know this is for HIV needs awareness…” and I swear to God, during the time, there were a good number of people who would say, “Oh, I don’t! I don’t need it.” or “I don’t want to be associated with it.” or “I don’t have HIV.” That was one of the biggest challenges at that time, because the people didn’t want to be part of it. They didn’t want to be associated with it in any way.
The biggest challenge was how to change the people’s mindset. We realized that through effective media, through more vigorous advertising and rebranding, it could be effective. That’s how we found it very effective in our experience. Engaging celebrities and influencers were very pivotal as well, because then you make it cool. You make it look like it’s something that people would want to be part of, right! So, that was a good way to get people’s attention. We realized that through disruptive messaging and creative messaging, people would change their mindset. And would eventually want to be part of something that they might not understand at first, but, you know, it’s was a great way to get their attention and then to get them involved in the projects, and then, you know, eventually get them the right messaging and lead them to the different programs and access to health care, etc. That’s one thing that we’ve learned and, you know, realized and reapplied over and over again because we believe in it. And we’ve seen how effective it has been for us. Again, mentioning the way art changes people’s perspective as well, and how art can catch people’s attention and give people curiosity as well.
Much of your work uses the visual arts provocatively to entice folks to engage in conversations about HIV, sexual health, and culture. I read somewhere that you utilized a particular technique in the TAGGULAN series that got your audience really talking. Can you tell us about that?
Transcript: There was one time, many years ago, I was engaged by one of our peers, who came up with an idea about a poster. The poster had a drop of blood from him––because he’s living with HIV. I just found that very effective in terms of humanizing HIV. I was also informed by another colleague about an artwork at the UNAIDS Headquarters in Geneva that was that had used blood––HIV positive blood––as part of the paint. So I thought, “Okay, so you know, it’s been done before. So you know, maybe I could give it a try,” so I tried it in one of the I can’t remember which year, but I tried it in one of my artworks that was exhibited at one point in a gallery, and I believe there was just one artwork that had the blood. I wanted to see how people would react when they see it on the caption. I saw a variety of different reactions from people. Some people would step back, and they, you know, they would talk to their peers like, “Hey, did you see?” It really did raise curiosity among, you know, people, and they think there’s that.
Again. I’ve mentioned the word disruption. You disrupt the energy and the vibe, and you get them to talk about it. I tried it once during that time, and I did it again for TAGGULAN, but this time with all of the artworks. It’s still relatively a new concept. So, there’s still a lot of people who, you know, had different reactions towards it, and they would be very curious about how the process was. And how is this not sort of “infectious,” or you know other concerns that they would have in their minds, they would ask, and, we would have that opportunity to educate people about it’s safe, and how it’s already dead, and that most of transmissions are “this, this and this,” and you know we would also highlight the safety protocols done while extracting the blood. And you know all that stuff. So that was very, I know we found it very, effective. I definitely had a good time putting that together.
What are you working on next?
Transcript: Our work was really affected by the pandemic. So a lot of what we do that’s, outside got affected. I’ve mentioned to you about Save Sexy and the other programs, the talks, and other events. So that’s what we’re working on right now, getting back on track. We’ve mounted one Save Sexy last year. It was not in Baracki, we tried a different beach scenario in another area. We didn’t get to do it this year, during May 1st. So I mean, what I’m trying to say is that we’re just trying out all these different programs to get back to where we were.
We are also doing a lot of art-centric projects again. We launched one art festival, like a small art festival, last February. And we’re in the talks right now into coming up with something bigger. We’re currently busy right now, putting together our Pride activities. You know, June is around the corner. So there’s a lot of things going on right now. We’re launching Headshot Clinic for Pride. We are currently discussing with the different partners, how we can make it bigger and more effective. So that’s pretty much what’s going on at the moment.
To infuse life and longevity into the HIV movement, we can learn from projects like Cosme’s TAGGULAN to spotlight the fight against HIV and the power that stories and culture play in bridging the HIV knowledge gaps, promoting HIV prevention, and encouraging HIV testing behaviors. Their work has taken them across the globe, and the insights shared demonstrate the parallels between domestic and international efforts to address the epidemic. To combat the stigma and advocate for comprehensive HIV care it takes all of us working together. Cosme’s work speaks directly to the health care providers, activists, philanthropists, artists, and countless others whose lives are affected by HIV in direct and indirect ways.
To learn more about how you can contribute to the fight to end the epidemic and support incredible activists like Cosme, visit cdc.gov/stophivtogether or email pact@aidsunited.org to connect with a member of AIDS United’s Partnering & Communicating Together team to find ways to increase the impact of your work in the communities you serve.