Inside the second wave of the HIV epidemic in the Philippines

Travel to the frontlines of the health crisis and meet a generation of young people trying to build a better future


In the Philippines, the HIV epidemic is not part of a distant past; it’s an ongoing reality that affects Filipinos today.

I was born in the country and lived there until 2009. At the time, there was little information about sexually transmitted infections and HIV/AIDS. In high school, our sex education involved naming organs in the reproductive system, and conversations among peers about sex were met with silence. Whispered discussions about HIV/AIDS were veiled with fear and stigma: It was a gay disease, a punishment from God.

In the time since I left the Philippines and moved to Canada, the whispers have become louder as HIV cases in the country steadily rise. Unlike other parts of the world where transmission rates are decreasing and new treatments have turned HIV into a manageable disease, the Philippines has seen a massive increase in infections.

According to a recent report by the Joint United Nations Programme on HIV/AIDS (UNAIDS), the Philippines has had the highest number of new HIV infections in Asia and the Pacific over the past decade: The country reported a 203 percent increase in new cases, tailed by Pakistan with 57 percent. Experts attribute the increase in cases to a lack of condom use and continued stigma surrounding homosexuality and HIV/AIDS. Most of the new cases involve men who have sex with men, a key demographic whose average age gets younger and younger as the epidemic progresses.

Earlier this year, I went back to the Philippines to meet the people on the frontlines of the epidemic. Over the two weeks I spent in the country, I spoke to the young Filipinos of my generation about living with HIV—people who were forced to grow up too soon.

This story is about them, the young Filipinos living with HIV who have been both embraced and shunned. The young people who disclosed their HIV status on national television, who lost lovers and who chose advocacy over shame, giving back to their community despite not always being accepted by it.

This is a story of hypocrisy and hope, of hiding and emerging, of death and life in the second wave of the HIV epidemic in the Philippines.

Part 1: The Diagnosis | Part 2: The Cause | Part 3: The Advocacy | Part 4: The Future

 

Part 1: The Diagnosis
“Do everything you need to do, I’m going to die anyway”

Billy Santo woke up gasping for breath. He looked around and tried to make sense of his environment. He was inside a moving vehicle. An ambulance, he reckoned. The voice of his landlord and the beeping of various medical equipment was muffled in the background; he was dazed, too weak to move. Then, fragments started to come back: He’d been alone at home, unable to eat. His breathing became laboured and each step felt like a punishment. Then, darkness.

Inside the ambulance, 23-year-old Santo realized he wasn’t dreaming. He finally had to confront the nightmare he’d been running from for months.

It was near the end of summer 2015 in Manila. Weeks before, he had received a phone call from his ex-boyfriend’s sister. It had been two years since Santo and Francis—Santo’s former partner and first love—broke up due to Francis’ infidelity. Yet Francis’ sister and Santo had kept in touch. She used to call him frequently—sometimes just to say hi, other times to convince him to get back with her Kuya (Filipino for older brother, or a term of respect used to refer to an older man). But this time, her call wasn’t about either of those things. In fact, it was the first time she’d called him in months.

“Kuya,” the sister started when he answered the phone. “Kuya Francis is dead.”

Santo felt everything slow down. “What’s the cause?” he uttered.

“Just get tested, okay?” she said.

“What test?” he asked.

“In his clouded brain, he thought: Should I mourn my ex-lover or should I be concerned about my health?”

“HIV,” she answered quietly.

He didn’t know what to do. He had never considered the possibility of contracting HIV. When he and Francis were still together, they never used condoms because they were in a monogamous relationship that was based on trust. He was silent as he processed what Francis’ sister said. Fear slowly crept in. What if he had it, too? He didn’t know what to say. In his clouded brain, he thought: Should I mourn my ex-lover or should I be concerned about my health?

Santo had already been feeling ill for days prior to speaking with Francis’ sister. The memory of the call haunted him. He avoided everything and everyone—work, his family and his friends. He was living with a roommate at the time; needing space to figure out what was wrong with him, he moved out so no one could see how sick he felt. He had no appetite and was in constant pain. Months later, while he was alone at home, he felt weak and suddenly collapsed. That was the last thing he remembered when he woke up in the ambulance.

The vehicle stopped and Santo was rushed into the emergency room. His landlady stayed with him as the hospital staff put him in a wheelchair and placed an oxygen mask over his mouth and nose to help him breathe. He was too weak to move.

The doctor assessed Santo’s symptoms and said, “Are you gay?”

He panicked. “No,” he replied. The room was packed and it seemed that everyone was listening.

“How many sex partners have you had?” the doctor asked.

“Two, three…” He lied.

The doctor looked at him and said he could tell the truth.

“Five…10…15…20?” he said. “I’ve lost count.”

The doctor paused for a bit, then something seemed to click. He said the words Santo dreaded to hear—the ones he had been running from: “I think you’re HIV-positive.”

His landlady rushed out of the hospital upon hearing what the doctor said—Santo would never see her again. The doctor explained they would conduct a confirmatory HIV test. He was also screened for pneumonia, then for tuberculosis. Santo felt nothing. He was losing hope. He let the doctor do all the tests.

“Do everything you need to do,” Santo said. “I’m going to die anyway.”

Two days later, Santo was holding a tiny envelope containing his test results. He didn’t want to open it.

He had heard about other cases, often in murmurs. But the possibility of being part of the statistics? He bargained with God: Was everything he had already been through not enough? Were the years struggling to find a place to belong and a person to love not enough? Was it really that hard to spare him from this fate?

Santo quietly opened the envelope. His worst nightmare had come true.

In the early 1980s, when acquired immune deficiency syndrome, or AIDS, began claiming lives around the world—from the United States to Canada to parts of Europe and Africa—not a lot of Filipinos knew about it. In fact, it wasn’t until 1984, after more than 3,600 Americans had died, that the Philippines recorded its first reported case of HIV.

For those who were aware, though, AIDS was a death sentence, a plague that was killing people—mostly gay men. But HIV/AIDS remained rare and faceless in the Southeast Asian country. At least until everything changed in the early 1990s.

In 1992, Dolzura Cortez, a straight woman, was thrust into the limelight after she responded to a newspaper advertisement looking for a person with AIDS to talk about their experiences. Cortez agreed to share her story, which was later developed into the 1993 movie, Dahil Mahal Kita (Because I Love You: The Dolzura Cortez Story). It was the country’s first film to document the experiences of a person living with AIDS. It was also the first time that many Filipinos heard from someone who had the disease. By the time that Cortez publicly revealed her HIV status, the virus had already claimed 50 lives in the Philippines.

Two years later, in 1994, a second woman, 19-year-old Sarah Jane Salazar went public. Salazar was introduced through a press conference organized by the Philippines’ Department of Health. Salazar was the pseudonym of Marissa Reynon, a sex worker thought to have contracted HIV from a client while working abroad.

At the time, no gay or bisexual Filipino men had yet come forward to say they were HIV-positive, leading to the false belief that HIV only affected women. Salazar’s visibility as an AIDS activist led health officials to focus on heterosexual sex as the primary source of transmission, particularly among men and women employed outside the country—officially known as Overseas Filipino Workers, or OFWs. Meanwhile, HIV/AIDS was stigmatized as a “gay disease” and AIDS activism was largely embedded in LGBTQ2 communities in Canada, the U.S. and Europe.

With the known demographic in mind, the Filipino government focused its HIV intervention on women, OFWs and heterosexual sex workers. There was very little information about the relation between men who have sex with men (MSM) and HIV/AIDS in the country. And although stories of the HIV/AIDS epidemic affecting MSM in North America were prevalent in the media, the Philippines’ data showed a different affected demographic.

Anastacio “Tacing” Marasigan Jr. has been with the non-profit organization TLF Sexuality, Health and Rights Educators Collective (TLF Share) since the early 1990s—first as a volunteer, and now as its executive director.

Marasigan first heard of AIDS when he was in high school in the mid-1980s in Manila. He was walking with friends, and they were laughing, teasing each other. Then, a man on the street yelled at them: “Mga baklang may AIDS!” (“Gay men with AIDS”). Like many Filipinos at the time, Marasigan didn’t have any idea what AIDS was.

Years later, sometime between 1991 and 1992 while in Malate (what used to be Manila’s gay district), his friend recruited him to join a workshop about gender and sexuality at a nearby restaurant, The Library Pub. It was run by an organization called The Library Foundation (TLF), a precursor to TLF Share, in honour of the venue where most of the group’s meetings were held. At the time, TLF was mainly made up of gay and bisexual men who got together to talk about sex and sexuality.

Lured by free food and promised activities like swimming, Marasigan agreed to join. He had just finished university and was unemployed; joining a three-day workshop felt like a low stakes commitment. At the time, as far as the members knew, TLF was one of the pioneering groups that talked about issues unique to MSM and trans Filipinos.

This changed in the late 1990s when the Philippines’ Department of Health started programs to address HIV/AIDS in the country and emphasized HIV prevention projects that included MSM. In response, TLF shifted its focus toward community mobilization and HIV peer education and outreach.

Marasigan recalls that accurate data was scarce during the early years of HIV/AIDS in the Philippines. He says that sometimes it would take four-to-five months before TLF would receive reports from the government about the status of the virus in the country. When they finally did receive the data, the rate of infection was suspiciously low.

Thanks to efforts from the country’s Department of Health, the spread of HIV seemed to be under control in the years after Cortez and Salazar came out. By the late 1990s, the government established social hygiene clinics, places that provide basic prevention, care and treatment services to people living with HIV (PLHIV) and key populations at the time, like women, sex workers and OFWs, who were affected.

Dr. Louie Ocampo, the Philippines’ country director of the Joint United Nations Programme on HIV/AIDS (UNAIDS) says the ’90s social hygiene clinics issued a card known as a “pink sheet” that people could show as proof they had been tested for STIs. If they were sex workers, this pink card meant they were cleared for work.

The country saw a decrease in new HIV cases among sex workers and heterosexuals after social hygiene clinics came into effect. Marasigan described it as the period when HIV/AIDS cases and transmission in the country were “low and slow.”

But as the cases involving women and sex workers declined, the country lost sight of other groups that required more targeted service.

Sometime in the late aughts, the number of new HIV cases rose—from two reported cases in 1984 to more than 800 by 2009. Between 2010 and 2018, the number of HIV cases increased by 203 percent—the highest in Asia and the Pacific—with 69 percent among youth aged 15 to 24.

The Philippines’ overall HIV rate has developed rapidly since—in comparison, Pakistan, which ranks second highest in the number of cases, saw a 57 percent increase. In July 2019, more than 1,000 Filipinos tested positive for HIV, and more than 30 test positive for the virus every day. Now, the Philippines has more than 70,000 reported cases, a number expected to double by the end of the year.

Dr. Ocampo says the Philippines is experiencing “a second wave of the HIV epidemic.”

And this time, the demographic has changed: If women and sex workers were the main drivers of HIV transmission through heterosexual sex during the first wave, young men and homosexual transmission are the focus of the second. Decades after the first HIV/AIDS epidemic, the face of the virus in the Philippines went from Dolzura Cortez and Sarah Jane Salazar, to young queer people like Billy Santo.

Part 1: The Diagnosis | Part 2: The Cause | Part 3: The Advocacy | Part 4: The Future | Back to the top

Part 2: The Cause
“It became fast and furious”

I lived in the Philippines until I was 18 years old. Around 2008, when I was 17, there was a surge in television shows and documentaries about HIV/AIDS, as rates of infection began to grow after years of remaining low. I remember watching one with a creeping sense of dread. Most of the people shown living with HIV identified as gay. Hearing that felt too close to home. Growing up Catholic, I had struggled to reconcile my identity as a gay man with my religion. I knew there was nothing wrong with me, however, I had heard often enough that HIV was God’s way of punishing homosexuality. I turned off the TV and prayed.

As a predominantly Catholic country, the Philippines has a complex relationship with its LGBTQ community. On the surface, it seems to have accepted queer people: Homosexuality is not criminalized, gay and bisexual men and women are allowed to serve in the military, some cities have passed anti-discrimination ordinances and some of the Philippines’ most famous celebrities are members of the queer community.

In 1987, the Philippine government, headed by then-president Corazon Aquino, signed the International Covenant on Economic, Social and Cultural Rights and the International Covenant on Civil and Political Rights with a commitment to uphold the dignity and equality of all people. However, these agreements did not entirely translate into practice, as LGBTQ-related killings are still reported in the country. To this day, the future of the country’s Sexual Orientation Gender Identity and Expression (SOGIE) equality bill is still in limbo. Ging Cristobal, an LGBTQ activist based in Manila, said in a 2014 interview with the Huffington Post: “There is high tolerance here, there’s not real acceptance.”

From the outside, the TLF Share office looks like a house partially hidden by tropical plants. Back in Canada, it’s officially winter; in the Philippines, February is the beginning of summer. This morning in Quezon City, a municipality north of Metro Manila, I walk to the office located on a street called Masikap, which translates to “hard work.” Inside, executive director Anastacio Marasigan Jr. offers me a beverage before we squeeze into a tiny room to talk about how difficult it was for HIV-positive gay and bisexual men in the Philipines to discuss their lives in the 1990s.

“I remember a friend of mine saying, ‘You know what? It’s easier for me to disclose I’m HIV positive than to disclose that I’m gay,” Marasigan tells me.

“He said, ‘because I can always say that I got HIV/AIDS from a female sex worker. It’s less judgemental. But when you say that you’re gay, it’s more problematic.’”

When Billy Santo was young, he dreamt of becoming a nurse. He wanted to care for others because no one had really taken care of him. He was an only child, the offspring of his father’s third marriage. His mother took her own life when he was three and his dad died from a heart attack caused by a drug overdose when he was nine. He was passed from one relative to another, and some of them mistreated and abused him.

Still, if Santo knew two things, it was how to fight and not give up. When he was 16, he lived on his own and worked as a student assistant at university. His wage only covered half of his tuition; he couldn’t afford food or pay rent. He couldn’t even buy laundry detergent to wash his school uniform.

Sensing his desperation, a schoolmate suggested to Santo a type of work that would earn him real money.

“Are you interested in becoming a callboy?” his friend asked.

“Sure,” Santo replied. “There’s nothing to lose.”

Santo didn’t have a problem servicing gay men (he tells me, at the time, he never thought about his sexuality or who he was sexually attracted to). “I wouldn’t get them pregnant, anyway,” he thought.

After school, Santo would look for prospective clients at the mall, outside hair salons or on the seaside boulevard in his hometown of Zamboanga City, in the southern part of the Philippines. He would stand and wait for men to approach him. Sometimes, he’d go home empty-handed, other days—the good days—he would make 500 PHP (Philippine Peso) or CAD $14. He never complained—that money guaranteed him another meal.

At school, he joined clubs, got good grades and felt that he was closer to fulfilling his dream of becoming a nurse. Everything was going well, he thought, until something unusual started happening to his body.

He first noticed a greenish discharge in his urine. Then the green fluid turned yellow. Yellow turned to blood. He panicked. He had heard of sexually transmitted infections (STIs) before, but he never thought he would get one.

At 17, like most students in the predominantly Catholic Philippines, Santo had never discussed STIs openly. He thought if he contracted an infection, he’d die. He became withdrawn. He lacked interest at school. On top of his fear of dying, Santo was also trying to reconcile the questions he had about his sexuality, which were now beginning to confuse him.

He started to develop an attraction to some of his patrons, especially the older ones who gave him financial and emotional support. These men wanted to see him after work; they talked to him and listened as he vented. Sometimes, they would bring him groceries.

When he discovered the discharge, he worried about his job, his only source of income. But on top of this, he thought about the men who he had started to develop real connections with.

Santo told his schoolmate, the one who recruited him to be a callboy, and he suggested various remedies.

“You should drink plenty of coconut water,” the schoolmate told Santo. “Or try wrapping raw meat around your penis.”

Santo tried both. Neither worked. He became more desperate for help.

He travelled by land—three days and two nights, from Zamboanga to Manila—to find a half-sister he’d never met before in a place he’d never been. While there, Santo’s sister and stepmom helped him get back on his feet—they paid for him to go to the doctor to treat his STI, and they also paid for his education.

Santo’s life seemed to make a turn for the better. Manila offered a fresh start. It was also where he met Francis.

I had still never seen a condom by the time I got to high school in the early 2000s—and I wasn’t the only one. For my classmates and I—as it was for most Filipino youth—talking openly about sex was taboo, and those who dared were met with looks of horror and judgment from their peers, as if they had committed a heinous crime.

Sex was only ever mentioned using the “library voice”—a careful and soft hush, one that wouldn’t disturb the silence or order of things. It was always assumed that my generation would abstain from (presumably heterosexual) sex until marriage. As history tells us, that was never going to be the case. And despite knowing this, the continued lack of proper sex education has had dire consequences.

Dr. Louie Ocampo, the country director of UNAIDS, says the bulk of overall new cases of HIV in the Philippines are caused by low condom use.

According to the 2019 survey conducted by the Epidemiology Bureau, a part of the country’s Department of Health, only 35 percent of Filipinos use condoms. The reasons cited include both a lack of access to free condoms and the poor quality of condoms that are available. While name-brand condoms are available for purchase in stores and pharmacies, most have to be requested from behind the counter, making buying condoms less discreet in a country that’s relatively silent about sex.

Very few local governments purchase condoms to distribute for free. This means most local centres are reliant on the national government for the supply of condoms they make available in places like health clinics, non-profit organizations and hospitals. This has led to shortages, Dr. Ocampo says, as well as distribution challenges.

“Can you imagine the national government distributing condoms in all facilities across the country?” he says. “That’s a very challenging process.”

Dr. Ocampo tells me that people don’t like the condoms that the Philippines government buys because they are cheaply made and thick. He says UNAIDS is trying to make the case for purchasing thinner ones to incentivize condom use, as well as the development of a pattern of behaviour—especially for young people—starting from the first time they have sex.

One of the biggest obstacles is Filipinos’ social attitudes towards contraceptives. Since the early 1990s, the Catholic Bishops Conference of the Philippines (CBCP) has issued official statements vilifying condoms and campaigning against legislation that would expand condom access. It also attacked public health officials who promoted condom use in the country, calling them “agents of Satan.” For years, the Catholic Church taught Filipinos that advocating for condom use for heterosexual sex condones “promiscuous and immoral” behaviour. The Church instead encouraged people to simply abstain from sex.

In fact, it took years for the Responsible Parenthood and Reproductive Health (RH) Bill—which looks at ways to educate Filipinos about sexual health and family planning measures—to be passed into law. The RH Bill was eventually passed in 2012, but was suspended by the country’s Supreme Court after religious groups alleged the law violated their rights to religion and free speech and that it promoted immorality.

The Catholic Church’s view on sex had always been questioned by proponents of safer sex. TLF Share’s Anastacio Marasigan says that “Filipinos are not conservative, we are just hypocrites when it comes to sex.” And that hypocrisy—or, perhaps, that shame—means that people will continue to have sex, they just won’t receive health information that would allow and empower them to protect themselves from pregnancy and/or STIs.

In January 2017, Philippine President Rodrigo Duterte signed an executive order calling for universal access to modern family planning methods and the accelerated implementation of the country’s RH law. This move surprised his critics: At the time, Human Rights Watch—often critical of the administration—said, “This action is a bright spot in the administration’s otherwise horrendous human rights record via its abusive ‘war on drugs.’”

An added layer to Filipinos’ complicated relationship to condoms, Dr. Ocampo says, is that the contraceptive has been primarily seen as a family planning commodity. Family planning (or lack thereof) is a major issue in the country. In 2016, the Philippines had the highest rate of teenage pregnancy in Asia, and remains one of the countries with the highest rates of teenage pregnancy in the world.

“If you look at the data for teenage pregnancy, we’re number one,” Anastacio Marasigan Jr. tells me. “So you keep on telling the world that our young people don’t have sex when, in fact, Filipinos are having sex at a very young age.”

When I was 16, one of my closest friends mysteriously moved to a different city after high school. We didn’t hear from her for months. It was so unlike her to detach herself from the people she loved. One day, she texted me and said she’d visit me at university.

“I gained weight,” she said defensively when I met her. “I’m just eating well.”

I shrugged. I was just happy to have my friend back. We hung out until evening and caught up. When I asked why she had disappeared, she said she had moved in with her boyfriend. We hugged tightly when we parted ways that night. Days later, I received a message from her.

“I gave birth!” she said. “You’ll be the godfather.”

I was surprised. I hadn’t known she was pregnant, and part of me was hurt because I realized that maybe she felt her secret wasn’t safe with me. We never discussed anything about sex—it’s taboo. But the fact that she gave birth at 16 made me reassess the way we talk about sex and our bodies.

I lived what Marasigan was talking about. We’re a society that whispers about anything sex-related. As for men who have sex with men? Well, that’s even more taboo.

“We’re a society that whispers about anything sex-related. As for men who have sex with men? Well, that’s even more taboo.”

As the rate of HIV cases increases and awareness programs become more ubiquitous in the Philippines, UNAIDS and other organizations are trying to rebrand condoms as not just a barrier against pregnancy, but also as a way to prevent the spread of STIs—including among men who have sex with men.

For MSM, trans people and youth—the key populations caught in the middle of the second wave of the HIV epidemic in the Philippines—there’s just one dilemma: How do you get condoms in a society where you’re not fully allowed to be queer?

In 2013, when Billy Santo was 21 and living in Manila—and just two years before he was diagnosed with HIV—he earned his associate degree. His half-sister and stepmom, who had taken him in after he left Zamboanga City, supported him and pushed him to finish his studies. Their selflessness had given him a chance to thrive in life, and he wanted to repay them. He found a job at a call centre and gave them almost 80 percent of his salary.

Santo was content with his job; he felt like he was finally doing something right. Then one day while at work, a handsome guy, a little older than him, approached him and said that Santo was sitting at his desk.

“So, you’re the one who replaced me?” the man asked.

“I’m sorry I didn’t know this was your spot,” Santo responded.

The man just looked at him.

Later that day, when Santo accompanied his friend outside during a smoke break, he saw the man again. He introduced himself: “I’m Francis.” He told Santo he was back from a three-month medical leave. They chatted. Then Francis asked, “Would you like to go and get coffee sometime?”

There was something about Francis, Santo thought. He was well-liked by their co-workers and he was sure of himself. The two hit it off, and started spending time together outside of work.

But Santo felt uneasy. Only his half-sister knew he was gay (although she also thought he was trying to be straight at the time); the rest of his family thought he had a girlfriend. But for Francis, he was willing to take the risk of being seen in public. A week later, he had fallen in love—and Francis said he loved him back.

Later on, Francis suggested they live together. Santo was conflicted. If he did move in, he would need to come out to the rest of his family. But he was in love, so he told his stepmom and his mom’s Australian partner.

“Maybe it’s about time I tell you that I’m gay,” Santo started. “I’m so curious about the world and I’d like to live independently.”

Santo stressed that he was still going to continue supporting them financially. The family—after some discussion with his stepmom’s partner—understood. Santo credits the influence of the Australian partner’s culture with how smoothly they accepted his coming out and decision to move out.

After Santo moved in with Francis, every day felt like a romantic dream come true—until he came home from work and found Francis with another man.

Santo confronted Francis, but he said the man was just a friend. Santo chose to believe him, but deep down he had a nagging feeling that something wasn’t right about their relationship. Then one day, a friend told Santo that he spotted Francis on a dating website. Santo created an account to see for himself. When he logged in, he saw Francis’ photo.

Santo broke up with Francis and moved out. He grieved the end of his relationship and turned to partying to drown out the feeling of a broken heart.

Two years later, in 2015, Santo received the call from Francis’ sister. Weeks after, he tried to find a distraction from what he thought was the very real possibility of having HIV. He had already felt ill for a few days before he spoke to her, but wasn’t sure what it was.

It wasn’t long before people started noticing changes to his physical appearance, and before Santo was finding ways to dodge their questions. Weight loss? The gym. Rashes? Allergies.

He wanted to be alone. After he moved out of the house he was sharing with a roommate, he lived by himself in an apartment owned by his friend’s mom. He spent days reading about HIV/AIDS on the internet, his health slowly deteriorating. He couldn’t eat and became so weak that he had to crawl to the bathroom.

His friend’s mom—the landlady who would eventually take him to the hospital—started leaving food outside his door. It was during one of those visits that she found him passed out and called the ambulance.

In the late 1990s, Marasigan says, the staff at TLF Share predicted that one day the key population at risk of HIV/AIDS would change—it would no longer be straight men and women at greatest risk, as it had been during the country’s first wave, but instead gay men, trans women and young MSM. They just didn’t know exactly when the tipping point would be.

“When you work in the [queer and trans] community, you know the culture, you know what’s going on,” he tells me. “A lot of them don’t use condoms.”

Then, in 2008, the rates of HIV infection changed. “From low and slow,” Marasigan says. “It became fast and furious.”

Part 1: The Diagnosis | Part 2: The Cause | Part 3: The Advocacy | Part 4: The Future | Back to the top

Part 3: The Advocacy
“I’ve lost a lot already”

On a warm evening last February in Manila, I arrive inside a lecture hall at the Ateneo de Manila University School of Medicine and Public Health. More than 100 student doctors are waiting for a talk to kick off their celebration of Know Your Status (KYS)—a yearly event where student doctors and community partners offer free HIV/AIDS education and testing on campus. It’s also an event where people living with HIV and their advocates share their stories.

I sit in the front row with JF Escobañez, executive vice-president of The Red Whistle, one of the organizations promoting HIV awareness and education in the Philippines. The Red Whistle doesn’t administer HIV testing; it connects people to resources, like the aforementioned social hygiene clinics, as well as other places that provide basic prevention, care and treatment services, as well as support groups, to people living with HIV. Escobañez has invited me to the university to hear him talk about the HIV epidemic in the country.

The Red Whistle is named after the iconic lifeguard whistle, an item chosen by the group to symbolize how they’re “sounding the alarm on HIV and blowing it hard.” The group was founded in 2011 by conceptual photographer Niccolo Cosme and his friends after they noticed people around them were contracting the virus at an alarming rate. A general HIV awareness group, The Red Whistle decided to use arts and social media to influence people’s opinions and spread awareness about HIV, an approach that is still part of the organization’s mandate today.

Escobañez says The Red Whistle is also known for their “strange” campaigns, which range from opulent photoshoots to lavish parties. He says that after conducting a study to find out what kinds of campaigns Filipino youth wanted, the group learned that young people valued information that is upfront and honest. This resulted in campaigns like #ScrewAIDS, a school-based HIV education and promotion campaign that aims to reduce HIV-related stigma by bringing knowledge and testing to universities and colleges.

Days before the KYS event, the organization launched the #FeelsLikeChallenge on TikTok to celebrate International Condom Day. Escobañez says they use social media because that’s where young people (one of the key populations currently affected by HIV in the country) are right now.

The use of social media and other online platforms to disseminate information about the virus is not unique to The Red Whistle. Filipinos are some of the top social media users in the world: In 2020, the Philippines topped the daily social media usage charts, spending an average of more than nine hours a day online. In 2014, the Philippines’ Research Institute for Tropical Medicine (RITM) created online awareness campaigns after conducting a survey about youth online engagement.

And UNAIDS recently hired a social media manager to create “finger-stopping” campaigns in the country. Dr. Louie Ocampo says they’re trying to integrate online platforms in their regular programs, a new strategy that they’ll be working on this and the coming years.

Anecdotally, Escobañez says that social media has proven to be an effective way to spread information about HIV and reach young Filipinos outside Metro Manila and beyond. After years of silence and stigma, young people are eager to sidestep official channels to find out about sex, HIV and contraceptive in a way that speaks to them: TikTok, YouTube, fashion, parties.

Escobañez himself was first drawn to the organization and its mission because of its eye-catching shirts and open-minded campaigns. In 2016, during the popular Labour Day Weekend (dubbed “Laboracay” by locals) at Boracay—an island south of Manila—Escobañez saw the popular The Red Whistle shirt, a red lifeguard shirt with “Save Sexy” and a cross printed in front. He wanted one of his own, so he and his friends decided to attend one of the organization’s events. But something clicked for Escobañez after attending. He wanted more than the shirt; he realized he needed to be part of the organization. Now, four years later, 26-year-old Escobañez is its executive vice-president.

Staying with The Red Whistle, Escobañez tells me, is his way of giving back to his community, even if there’s no financial compensation. Like most advocacy groups in the Philippines, the government does not fund The Red Whistle. Most people involved, including Escobañez, are volunteers. They raise money through fundraisers and the help of organizations like Rotary International, the Global Fund and the AIDS Healthcare Foundation.

Escobañez says he juggles his full-time job working at a Canadian telecommunication company’s office in the Philippines and his role with The Red Whistle because HIV advocacy is personal to him. He says he lost a lot of friends to AIDS, and many are still living with HIV. Working with the community is his way of honouring them.

“I’ve lost a lot already,” he says. “More than the fingers I have.”

Escobañez wants Filipinos to understand that HIV is not a death sentence, and contracting it is preventable. He talks about pre-exposure prophylaxis, or PrEP—a daily medicine used to prevent HIV. Last year, the Philippines had a pilot program that provided PrEP to 250 people, but that ends this year. Dr. Ocampo of UNAIDS says his organization is in the process of applying for grants to include PrEP in the country’s national program around HIV/AIDS.

Escobañez tells me his goal is for people to see HIV as a manageable illness like diabetes. He says some of the friends he lost were diagnosed late because of the stigma surrounding the virus. He aims to change that through awareness and education.

“Knowledge,” he says, “is power.”

In 2014, Jaime Michael “Kael” Mata came home to kiss his family goodbye.

The 22-year-old entered the home he shared with his mom and two siblings. The space was so tiny that when he opened the door, he could touch his mom and brothers in the bed they shared from arm’s length. He watched them sleep; their life was simple but they were surviving—no, they were thriving.

He gently kissed his mom on the forehead. Then his 11-year-old brother. Then the younger one, who was eight.

“Kuya is dying,” he whispered. “I love you.”

Earlier that evening, his friends had convinced him to go with them to watch a gay beauty pageant, a yearly event where gay men and trans women compete in a localized version of better known pageants like Miss Universe. At the event, Mata and his friends saw community volunteers conducting rapid HIV tests—the screening that tells you the result within minutes. They decided to get tested.

After Mata’s turn, one of the volunteers asked to speak with him in private. They stood beside the stage, away from the crowd.

“What would you do if you test positive?” the volunteer asked.

Mata didn’t know how to react. What would he do if he tested positive?

He hesitated, then answered: “I’d kill myself.”

Mata, like Escobañez, is at the KYS event to spread awareness and understanding about HIV. Escobañez introduces us. Mata, who seems reserved, quietly nods in response to my greeting.

When he was young, Mata later tells me, he once dreamt of becoming a journalist. In elementary school, he competed in a photojournalism contest in his hometown of Pasig City. He placed first and brought home a trophy half his height. When he opened the door and announced his victory, his mom ignored the trophy and instead scolded him for leaving home when she told him not to. In her rage, his mom broke the trophy—and her son’s heart.

At that point, Mata and his mother already had a rocky relationship, and this incident solidified the gap between them. He began to rebel. He had his first sexual encounter when he was in Grade 6 when he lost his virginity to a male college student. From there, he says he became addicted to sex—mostly neglecting safer sex measures. He sought it everywhere, from public washrooms to classrooms, with taxi drivers to the car mechanic across the street.

Years later, he discovered dating apps. He found hook-up partners. He lined them up, making plans for a meet-up with one guy even if he was still with another. He was caught in this cycle until his diagnosis in 2014—which, at the time, he thought was a death sentence.

He spent the ensuing weeks grieving; he didn’t have the motivation to live. His mom called him out, urging him to be more useful around the house. One day, he decided to google HIV/AIDS. Aside from what the community counsellor told him, he didn’t know anything about it. He slowly read each symptom and compared them to what he was experiencing. Dry skin? He didn’t have that. Rashes? None. Weight loss? No.

Mata then came to a conclusion: He didn’t have HIV. He thought that maybe because he got tested during a public event with a lot of queer people, the blood sample might have gotten mixed up. He found refuge in the thought. Mata decided to put his life back together—he needed this false diagnosis as a wake-up call. He enrolled in college, found a well-paying job and provided for himself and his family. He even found a partner.

He was wary of all the good things happening. Maybe there’s a catch, he thought. Then, in 2016, Mata was asked to emcee a party. During the event, the organizer told him to convince the guests—mostly LGBTQ people—to get an HIV test.

Mata jokingly announced, “Hoy mga bakla magpa-HIV test kayo! Baka may Aida na kayo!” (“Hey gays, get tested for HIV! Maybe you have AIDS!”)

One of the guests shouted back, “You’re convincing us to get tested, yet you won’t even get it yourself!”

Mata was shaken. The memories of 2014 flashed back: The counsellor asking him what he’d do if he was diagnosed with HIV. Him answering, “I’m gonna kill myself.” Kissing his mom and siblings goodbye.

He decided to get tested again.

Before his test, he told the practitioner that he had a preliminary positive in 2014, though he didn’t undergo a confirmatory test to verify it. The practitioner told him they’d test to confirm.

Positive.

This time, he didn’t cry.

“What are the next steps?” he asked.

The day after his second diagnosis, Mata started medication. His partner at the time was supportive and promised Mata he would stay. Mata sought help and guidance, and became part of Positibong Pasigueño—a local organization that supports people living with HIV in Pasig City. He helped out providing lectures, conducting testing and spreading awareness about HIV/AIDS.

Shortly after, he and his partner broke up and Mata returned home to live with his mom. One day, while she was on the phone talking to a friend who works in Europe, Mata jokingly told her to ask her friend to help him apply to go to a foreign country.

His mother looked at Mata and said, “Di ka na pwede, nak.” (“I don’t think you qualify anymore, child.”)

Mata was dumbfounded. He knew his mom was referring to him not passing the medical exam required to go abroad because of his HIV status. He was confused. How did she know?

His mom hugged him. They never talked about HIV nor his status. Instead, they just cried. It was as if their broken bond was fixed and their relationship renewed.

At the Know Your Status event, I watch as Mata walks up a few steps to the centre of the room. He assesses the crowd, then introduces himself. Mata identifies as a trans woman but uses he/him pronouns. He says he presents as masculine because he wants to honour his family, but Mata has proudly known he is a woman since he was a child. Mata is articulate, speaking passionately and eloquently. During his speech, he plays a seven-minute video clip from the Filipino noontime variety show, Eat Bulaga.

In the video, Mata has blue hair. He is wearing a patterned jacket, a light blue shirt and white pants. The camera zooms in. In Mata’s hands is a sign that says, “2019, I confessed to my family.”

Mata had received an invitation to appear on Eat Bulaga to talk about his HIV status last year. He was hesitant—not because he didn’t want to talk about it, but because he was scared how doing so would affect his family.

He talked to his mom first. They finally had a conversation about his HIV status. She looked at him and said: “Are you ready?”

He was. He knew he was. His mom suggested he call his family members. He did. They were all supportive.

One of his cousins told him to not be afraid. As long as Mata knows who he is, the cousin said, what other people think does not matter.

For the first time in his life, Mata felt he had family to lean on. After years of feeling estranged from them, they had all showed up when he needed them the most.

He thought it was time for him to show up for other Filipinos living with HIV, too. With the support of his family, Mata agreed to be on the show.

At the 2020 KYS event, I watch as Mata clears his throat and shares how ironic it is for him to try to inspire people while nursing a broken heart: His partner, who supported Mata’s diagnosis, broke up with him because of his activism.

“It’s hard wanting to fight when you’re heartbroken,” he tells the audience.

But this is Mata’s calling.

“He has already lost a lot of friends, and the people he sees getting positive diagnoses are getting younger and younger.”

He tells the crowd he can’t stop his advocacy work; he has already lost a lot of friends, and the people he sees getting positive diagnoses are getting younger and younger. Mata shares the story of his friend who he marched with during Manila Pride in June 2018—he got his HIV diagnosis that October and passed away that December.

He shares the story of a 17-year-old kid who couldn’t access antiretroviral (ART) drugs and asked his father for help. The father responded: “You don’t need medication. You’re dirty, drink detergent.”

The crowd’s attention is fixed on Mata. He tells them to treat people with HIV like normal people—some audience members nod. Mata finishes his testimonial with the same declaration he shared on Eat Bulaga: “HIV is not a disability. It can kill our immunity but never our humanity.”

Applause.

That night after the event, Mata tells me he’s heading home to prepare for a fundraising event the next day. Inside his bag are metal pins, a collection of rainbows and red ribbons. He sells them for $2 each; he says the funds will help people like him.

Mata sighs as he acknowledges how hard advocacy work is. But, he tells me, it’s harder to just sit and do nothing. People with HIV still fight stigma and discrimination, but, Mata says, he can face it all now because, unlike before, he knows he has his family’s support.

“When I go home tonight,” he says. “I know I’ll be welcomed with my mom’s embrace.”

Part 1: The Diagnosis | Part 2: The Cause | Part 3: The Advocacy | Part 4: The Future | Back to the top

Part 4: The Future
“If we could handle it, so can you”

It was almost Christmas in 2016 when John Robert “Rob” Mortel sat in one of the rooms of the family home he shares with his lola (grandmother), siblings and about 20 other extended family members.

He had just got back from visiting the doctor. He had a rash on his face that wouldn’t go away. The doctor checked it, and asked if Mortel wanted to get tested for HIV.

“It’s free,” she said.

Mortel said no at first. He knew he had had unsafe sex in the past, but he felt invincible. He was only 19—way too young, he’d never have HIV. He thought about it again and changed his mind. He had been tested twice in the past and both turned out fine. Health-conscious, he agreed.

“I think we need to extract more blood,” the doctor said.

His heart pounded fast. This one was unlike his first two tests.

The doctor looked at him and said, “Your preliminary result is positive, let’s do a confirmatory test to make sure.”

He didn’t know what to do. He’d heard of HIV and AIDS, but he never thought he’d be diagnosed with it—he was young, healthy, invincible. What is going on?

“What do I do?” he asked the doctor. “Am I going to die?”

“No,” the doctor said. She told Mortel about treatment options and suppressants. “Beyond medication, you need a strong support system—from yourself, your family and God,” she said.

Mortel left the clinic and reflected on the irony of being diagnosed with HIV in December— Christmas season—the most festive time of the year in the predominantly Catholic Philippines. What a twisted gift, he thought.

When he got home, he asked his lola if they could talk. She’d always been his confidante and his best friend: She raised Mortel and his siblings when their mom, her daughter, left the Philippines to work abroad. Mortel always told his lola everything—his dreams, his crushes, his secrets. But that day in 2016, Mortel dreaded what he was about to say.

“I’m HIV-positive,” he told his lola.

He looked at her reaction and realized that hearing his HIV diagnosis was hard—but seeing his grandma cry was harder.

Growing up in the Philippines, I was told repeatedly—by my teachers and the shows I watched—“Ang Kabataan ang pag-asa ng bayan” (“The youth is the hope of the nation”). It was a statement popularized by the Philippines’ national hero, Jose Rizal.

When I went back to the country earlier this year, I met young people like Billy Santo, Jaime Michael “Kael” Mata and John Robert “Rob” Mortel who are all fighting for a better future—a better Philippines—for them and their peers. Against the backdrop of the second wave of the country’s HIV epidemic, their voices are also some of the loudest to demand change.

Mortel tells me he wants to go to law school and eventually become a lawyer, but he’s put his dreams of a legal career on hold to serve his community.

When he was diagnosed with HIV four years ago, he was left to fend for himself. At the time of his diagnosis at 19, he didn’t know a lot about HIV. He says the physician who tested him is a pediatrician, not an infectious disease specialist. Yet Mortel says she is the most sympathetic doctor he’s ever met. After his diagnosis, she pointed him to Positively Empowered People of Antipolo (PEPA), an organization that connects HIV awareness campaigns and support groups to people living with HIV in Antipolo and the province of Rizal in the Philippines.

The group meets every second Saturday of the month to catch-up and chat about life. Mortel remembers how older members were empathetic about the challenges of living with the virus—especially when it came to the young teens in the group (one of them was only 16). Today, they continue to preach what they told Mortel almost four years ago: “If we could handle it, so can you.”

It was through PEPA that Mortel realized life doesn’t end with HIV; it was where he found the family he longed to have.

His experience with the organization motivated him to become a community outreach worker at the same social hygiene clinic in Antipolo that helped him. Mortel says that when he was asked to choose which key population he wanted to focus on—men who have sex with men (MSM), trans people or youth under 19—he knew he had to serve youth.

He was familiar with the unique struggles that young people with HIV face: The lack of independence to seek HIV tests and medication, financial restraints and the challenge of growing up under the shadow of a virus that has killed millions.

“When I was diagnosed, I felt like my innocence was gone, it felt like someone robbed me of my youth,” Mortel tells me. “I felt like I had to grow up and try to survive because that was the only way I could stay alive.”

In December 2018, Republic Act 11166 (RA 11166) was signed into law, two decades after the implementation of the first HIV/AIDS law, Republic Act 8504 (also known as the Philippine AIDS Prevention and Control Act of 1998). This new law attempts to address the discrepancies of its predecessor: It defines HIV and AIDS education as a right, and also ensures free treatment is provided and stricter policies are enacted against discrimination.

RA 11166 was adopted by the Philippine National AIDS Council in July 2019. It allows minors from 15 to 17 years old to undergo HIV testing without parental consent—those 15 or younger who are pregnant or have engaged in high-risk behaviours can get tested with the assistance of licenced health or social worker.

Mortel tells me that the new law’s emphasis on human rights and upholding human dignity is a big step forward—it means that when someone like him is seeking treatment, they are also asserting their right to live. He wants other young people to have access to the same treatment that saved his life, and he hopes more adults understand the unique needs of young people living with HIV.

When Mortel started taking antiretroviral (ART) medications to treat HIV, he suffered from side effects. Some days, he still experiences grogginess.

“It was scary at first,” he says. “I have to maintain that medicine from a young age, for the rest of my life.”

“When I was diagnosed, I felt like my innocence was gone, it felt like someone robbed me of my youth.”

Now, Mortel is undetectable, meaning his viral load is low (he has fewer copies of the virus in his blood), something that he considers an achievement. Being undetectable was the result of years of religiously taking his HIV medications, even on days when he felt like giving up on everything.

It’s been almost four years since Mortel was diagnosed with HIV. But each day, he realizes—and preaches—one thing: Life doesn’t end with the diagnosis.

This is the message that most people I spoke with also want to convey; people like Billy Santo and Kael Mata, who were between the ages of 15 and 24 when they were diagnosed—the same age range that is increasingly being affected by the second wave of the epidemic.

But the growing rate of young Filipinos living with HIV also signifies a future challenge to the country’s health care system, says TLF Share executive director Anastacio Marasigan Jr.

“We don’t have programs for ageing people living with HIV because the focus right now is on the very young population,” Marasigan says. “But you cannot remain young forever. We have to prepare for this coming generation of ageing people living with HIV—and it’s not a small population.”

In February, Billy Santo, now 28, and I sit in a café in Quezon City. Santo arrives to our meeting wearing a green T-shirt and grey sweatpants. He apologizes for being selfish, for considering his time and availability over mine. But Santo, I eventually learn, is far from selfish: He has provided for his stepmom and his half-sister. He strives hard to be the best employee at work and he gives love—the all-consuming kind—to friends and lovers who have wasted it. Santo isn’t selfish. In fact, he is so selfless that he often ends up depleted.

Under the huge ceiling fans buzzing furiously in the quiet area outside the café, Santo opens up about his diagnosis, his family’s reaction when they found out about his status and his journey of survival.

He speaks to me with certainty. He tells his story void of melodrama and with shocking nonchalance. He still isn’t exactly sure how he contracted HIV, but it is clear he doesn’t want pity. All that Billy Santo wants is for me—for people—to treat him and his story with normalcy.

Normalcy.

This is what Jaime Michael “Kael” Mata wants, too. He doesn’t want people to think he is less of the person because of his HIV status.

This is also what John Robert “Rob” Mortel strives for when he encourages people to look past the diagnosis and realize that, underneath the cloud of HIV, is a young person with a bright life ahead of him.

Normalcy.

This is what Anastacio “Tacing” Marasigan Jr. has been fighting since the 1990s, when his organization, TLF Share, noticed the changing face of HIV/AIDS in the country. It’s what they’re trying to achieve as they plan for the country’s ageing HIV-positive population, and help the young people currently living with HIV as they age.

Normalcy.

This is what JF Escobañez wants in his advocacy, The Red Whistle, where he has worked toward improving HIV awareness for years.

They are the people who rise up and talk about the second wave of the HIV/AIDS epidemic in the country for those who aren’t ready and for those who can’t. As the number of new HIV cases in the Philippines increase, people like Santo, Mata, Mortel, Marasigan and Escobañez are making Filipinos talk about sex and an epidemic they’re too ashamed to address.

At the café, Santo tells me he doesn’t want to be celebrated—for his advocacy work, for speaking out, for giving a face to a disease that has killed millions yet remains misunderstood.

That night, like Mata and Mortel, Billy Santo just wants one thing: He wants to be treated as human.


Some interviews for this story were conducted in Filipino and translated into English by Arvin Joaquin. The handling editor was Eternity Martis, with additional editing by Gordon Bowness and Rachel Giese; copy editing and fact-checking by Allison Baker.

Arvin Joaquin is a journalist and editor. He was previously an associate editor at Xtra.

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