Youth in Action: They fight stigma surrounding HIV through science and stories

As part of a series to highlight youth activism, TODAY speaks to young people in Singapore who are not only passionate and vocal about social issues, but are driving positive change through their actions. In this instalment, Ms Caitlin Fernandez and Ms Nurafiqah share how they are trying to dismantle societal stigma surrounding HIV through their Instagram account.

• Ms Caitlin Fernandez had to face stigmatising comments from others about her fiance who has HIV
• She set up the Instagram page UequalsU_SG last year to dispel misconceptions about the condition
• Her page inspired a reader, Ms Nurafiqah to publicly share her experience living with HIV
• Both women now run the page, which features a collection of scientific facts and personal stories about people living with HIV

SINGAPORE ꟷ When Ms Caitlin Fernandez, 23, visited her German fiancé, then her boyfriend, in Berlin last July, she was surprised by how he and others with the Human Immunodeficiency Virus (HIV) could live so openly there.

Not only were these HIV patients open about their condition, they were positively represented in the media. She watched, for example, interviews in German media that focused more on how they were coping with their condition, rather than how they contracted HIV, a virus which damages the body’s immune system.

It was a stark contrast to her own experience dealing with stigmatising comments from her friends and family when they learnt that her boyfriend had HIV.

“Sometimes, my family members would ask if he’s gay. I think they associate HIV with gay men.

A former friend would also tell me to keep safe or get away from him,” Ms Fernandez told TODAY.

Although there is no effective cure for the condition, which can be transmitted through certain body fluids such as blood, semen or breast milk, it can be controlled with medical treatment.

Her experiences prompted Ms Fernandez to set up the Instagram page UequalsU_SG last November with the aim of increasing awareness about the condition.

"There are so many negative comments on the internet about HIV so I wanted to create a safe and inclusive space," said Ms Fernandez.

The account’s name is based on the “Undetectable = Untransmittable” global campaign, which raises awareness on how people living with HIV cannot transmit the virus to their partners sexually if they are on effective antiretroviral therapy and have an undetectable viral load.

An undetectable viral load means that the viral load is below 50 copies of HIV per ml of blood for at least six months and cannot be detected through blood tests.

The Instagram account, which has over 700 followers, features a collection of scientific facts and personal stories about people living with HIV, in a bid to counter HIV-related stigma that is based on false and discriminatory information.

Its impact has been immediate, with one follower, Ms Nurafiqah, a 24-year-old polytechnic student, stepping forward to share her condition publicly on the page in January this year. She believes she is the only woman in Singapore to live openly with HIV.  

Having a platform to clear up misconceptions about the condition was especially important to Ms Nurafiqah, who has had to endure insensitive questions. For example, during the admission process into her polytechnic, which she declined to name, she was asked whether she could transmit HIV to her schoolmates through the sharing of food.

"I just want people to know that people living with HIV can have normal lives. They can go to school and have families just like anyone else," she said.

Ms Nurafiqah subsequently joined Ms Fernandez to run the page as she wanted to play a part in letting others with HIV feel less alone.

Ms Nurafiqah proposes topics for the Instagram posts, while Ms Fernandez designs and writes them.

Ms Fernandez said that having Ms Nurafiqah on board has educated her on the experiences of people living with HIV in Singapore. For example, Ms Fernandez learnt that those who take the medication from young may take a break from medication, due to the stress of having to consume multiple pills throughout their lives.

Ms Fernandez said that she is heartened when people send her messages to say that they are inspired by the experiences of others living with HIV or for educating them on issues not typically publicised on social media.

Even her father shares the page’s posts to educate his friends about HIV, despite his initial apprehension about her dating someone with the virus, said Ms Fernandez.

Ms Fernandez said sharing accurate information, such as how HIV is transmitted and the effectiveness of medication, is the first important step to raising awareness about the condition.

Doing so would encourage people to get tested for HIV and seek treatment. This would help Singapore end HIV transmission and Aids-related illnesses by 2030 ꟷ a goal set by non-governmental organisation Action for Aids, said Ms Fernandez.

She also hopes that awareness raised through the platform will eventually be able to change policies, which she believes disadvantage those living with HIV in Singapore.

For example, foreign nationals living with HIV are not allowed to work in Singapore and anyone who has the condition must declare it to sexual partners, regardless of whether they can actually transmit HIV.

Nevertheless, Ms Fernandez acknowledged that such changes will take time.

"We know that there will not be a national campaign about Undetectable = Untransmittable anytime soon, so we just have to do the grassroots work first," Ms Fernandez said.

"The ultimate goal would be to change institutions in order to have a more inclusive society."