AIDS Candlelight Memorial Day: Filipino HIV advocates share their stories of loss
John Herrera sits by his favorite spot in his studio. It is a bookshelf filled with stories, photos and knick-knacks — a place filled with inspiration, meaning and memories. On one shelf sits a framed magazine clipping about him and his twin brother Paul. As the young designers behind the House of Herrera brand, they were emerging talents in the Philippine fashion industry.
“My twin brother Paul passed away from HIV/AIDS complications in 2014,” John shares. “It completely changed my life. It shattered my world. I’ve never seen my life without him. I’ve never imagined my future without him. We were all in the dark — me, my friends, my family. We had no clue, no idea that the symptoms were all there,” he said.
By the time Paul had gotten tested for HIV, it was already too late. Paul started getting sick three months before he died. When John accompanied his brother to San Lazaro hospital to get antiretroviral medicines, an AIDS candlelight memorial was being held there.
“It would be the beginning of the most painful time in my life,” John said.
Losing one’s family
In an office in Quezon City, NGO worker Anna* shares her own story. “When my husband died, I thought it was the end,” she said, clasping her hands and trying to hold back her tears.
Anna was infected with HIV by her husband. The virus was transmitted to their child upon birth. She didn’t know anything about HIV then. “It was hard because I was totally blind,” she said. “After my husband passed away, I thought that my child and I wouldn’t have HIV anymore.”
Anna has been living with HIV for 20 years but still finds it hard to talk about what her family had to go through. “We experienced a lot of stigma and discrimination, even from doctors,” she said.
In 2002, Anna went to a hospital to seek treatment for herself and her child. When she disclosed her situation at the emergency room, the hospital staff panicked. The attending pediatrician ran to the head office out of fear. “They announced on the loudspeaker: ‘The mother and child with AIDS — whoever their guardian is, can you please go to the director’s office?’,” Anna painfully recalls. “Everyone panicked. The hospital was in chaos. Doctors cursed at me. They called the Department of Health. They called the radio station. They called the police.” she said.
Antiretroviral drugs for infants was not yet available then. Anna’s child died of HIV/AIDS complications at 4 years old. “All I wanted was to save my child’s life. As a mother, that was my priority. We both had HIV but I didn’t think of myself,” she said.
Keeping it together
After they learned that Paul had HIV, John pretended to be brave for his twin brother. “I would come with him all the time to all his tests and I would show him that I’m strong. I never cried in front of him. And when he was about to cry I would tell him, ‘No. That’s why we’re getting help. That’s why you’re going to get better.’,” John said.
Waking up every day was the most difficult thing to do for John. “When I open my eyes, it’s another day of battle, another day of putting on a fake, strong face when I just wanted to be scared. I just wanted crawl under the sheets and be scared. But I had to be strong for my little brother,” he said.
Paul passed away in June 2014, three months after being diagnosed with HIV.
“Paul was a trooper. He fought it with everything. I’m very proud of him,” John said. “He knew he was going to die. He never talked to me about it, but Paul would always tell me, ‘When you’re strong and you’re ready, you will tell my story. And you will save more lives.’ ”
Fighting the good fight
John was appointed as an ambassador of The Red Whistle, a non-profit organization in the Philippines that works to increase awareness about HIV. In December 2016, he became a council member of the organization, taking on a more active role in planning and managing its programs.
John uses his influence to get support from government officials, celebrities, personalities and volunteers to put together projects of The Red Whistle like Save Sexy, a series of information and testing campaigns held in different locations in the Philippines. In John’s hometown of Marikina City, more than 600 individuals got tested for HIV, the highest among the campaign sites so far.
“It is quite an accomplishment,” John said. “I had to beg from a lot of people to make it happen, knock on people’s doors and hearts to help us with the funding. There are times when I feel that I’m more of an HIV advocate than a fashion designer, because I really drop everything when something has to be done for the advocacy,” he said.
Anna shares the same advocacy. After losing her husband and child, she decided to do what she could to make things better for people living with HIV, so that others will not experience what happened to her and her family.
Anna started by volunteering as a peer counselor. She worked her way up and is now a project officer for an organization working on the national HIV response in the Philippines. She coordinates prevention, treatment, care and support programs for people living with HIV and people at risk of contracting the virus.
“I want those who are newly diagnosed with HIV to receive the services they need and not be cursed at, thrown out, or reported to the police — all of which I experienced,” Anna said.
In their work as advocates, Anna and John have met many people and formed meaningful connections with people affected by HIV. As a peer counselor, Anna shared her experiences with patients. “Talking to someone who’s also living with HIV helps them cope better,” she said.
“People come to you to get a sense of peace, a sense of assurance that things are going to be okay,” John said. “They want information, but they need to hear it from someone who has a heartbeat, from someone who can hear or listen. I think that’s the point of being an advocate,” he said.
The work ahead
The Philippines has one of the fastest-growing rates of HIV infection in the world. According to the Department of Health Epidemiology Bureau, as of March 2017 there are now 30 newly diagnosed cases of HIV per day in the country — a significant increase from 9 cases per day in 2012.
Anna thinks that, despite the availability of HIV services now in the Philippines, much more needs to be done to raise awareness about HIV in the country. “It would really help if people can receive the right information more frequently, whether on TV or on the Internet,” she said.
John supports the proposal to lower the age limit for getting tested for HIV. Thirty-one per cent of newly diagnosed HIV cases in the Philippines in 2017 to date are among 15- to 24-year-olds. Philippine law requires those below 18 years old to get written parental consent before they can access HIV testing and treatment services.
“Most people tend to think that they’re immune from HIV. Even if you keep trying to educate them, they won’t believe you until they get infected themselves,” Anna said. “HIV is not about promiscuity. It’s not about the lack of morals. And it’s not about bad people getting what they deserve,” John said. “It’s about people being victimized by a resilient virus. And the only way to end it is through information.”
“This is my motivation. This is why I’m still working in the HIV program. I give my time, my passion, my everything. This is not just for myself anymore,” Anna said.
John sees his brother Paul in everyone who approaches him in his work as an HIV advocate. “Even the person I’m just convincing on the street to be tested, some random young person, I see Paul in them. I see his face. And I think to myself, ‘That’s another Paul I saved.’,” John said.
“This is now life for me, until the end.”
*Name has been changed to protect the individual.
In the Philippines, UNICEF is helping in the HIV response through gathering of data and strategic information, advocating for laws that are responsive to the needs of children and young people, giving adolescents life skills and leadership training and helping the government, NGOs and youth networks improve service delivery to respond to the crisis.
To learn more, visit www.unicef.ph.