'It's very traumatic': HIV-positive individuals anxious, frustrated after MOH data leak

'It's very traumatic': HIV-positive individuals anxious, frustrated after MOH data leak

Mr Avin Tan, 33, took three years to gather enough courage to tell his mother that he has human immunodeficiency virus (HIV).

SINGAPORE: Mr Avin Tan, 33, took three years to gather enough courage to tell his mother he has human immunodeficiency virus (HIV).

After being diagnosed in 2009, he started coming out to a few "safe people" in 2012, before leaving his bottles of medication out in the open at home in anticipation of questions from his mother.

"I thought when she would ask me what it was for, I would tell her," he told Channel NewsAsia at the office of advocacy group Action for AIDS (AfA) on Tuesday (Jan 29). "But the first few times she did, I said it’s for work; it’s someone else’s medication. I chickened out."

A few weeks later, Mr Tan entered his mother's room as she was watching television to break the news. She took a while to let it sink in - then she started crying.

"Later, she told me she was crying because she’s just worried. Why did I take so long to tell her? Am I coping well? Is the medication very expensive? How was my health?" Mr Tan said. "She was actually more worried than anything else."

For something as sensitive as coming out with HIV, Mr Tan was able to choose the right time and the right people. But for some 14,200 other HIV-positive individuals, this was snatched away from them.

On Monday, the Ministry of Health (MOH) revealed that the confidential information of these individuals was illegally leaked online by American Mikhy K Farrera Brochez.

READ: The leaking of Singapore’s HIV registry records and the hunt for Mikhy Farrera Brochez: A timeline

Brochez was the boyfriend of Ler Teck Siang, a general practitioner who was formerly the head of the MOH’s National Public Health Unit. Brochez was deported from Singapore last May after serving a 28-month jail sentence for numerous fraud and drug-related offences, and is now under police investigation for his latest offences.

On Jan 22, the ministry was notified that an unauthorised person - later identified as Brochez - had leaked information from the HIV Registry, dating as far back as 1985 up till January 2013. The information includes names, identification and phone numbers, addresses, HIV test results and medical information.

READ: Mikhy Brochez, American wanted in Singapore for HIV data leak, charged in US for trespassing

READ: HIV data leak: What we know about Mikhy Farrera Brochez

MOH said it has been "progressively contacting" people who might have been affected by the leak. As of 1pm on Monday, 900 have been approached.

THE CALL

The call for Mr Tan came on Monday evening, right after the MOH press conference announcing the leak ended. But it was not entirely unexpected.

Friends who were HIV-positive told him MOH had contacted them over the weekend. So Mr Tan - a manager for advocacy and partnerships at AfA - was already in the office, busy putting information out on social media and ensuring those affected had the support they needed.

Avin Tan Action for Aids telephone
Mr Avin Tan said some of those affected were in tears when they called the AfA hotline. (Photo: Aqil Haziq Mahmud)

Still, when the MOH officer on the line asked for his full name and NRIC, Mr Tan said his "heavy heart sank just a little bit". "Cognitively, I knew something was happening, but emotionally, it hadn’t quite connected until the call happened," he added.

Mr Tan immediately felt very anxious, especially for his family, as he was worried that the information would be used against him: Could bad people start calling his family? Disturb them at his home?

"The mind does its own thing despite knowing that the (leaked) information was contained, taken down," he said. "It’s just that nagging thing at the back of the head. I think that for most people, it’s going to be like that for many months to come."

THE REACTION

Mr Tan was right. Some affected individuals were in tears as they dialled in to AfA's hotlines for advice.

"They were so stressed out by the entire situation," he said. "They don’t know how their families are going to react to it if they found out, they don’t know whether they’re going to lose their jobs if their employers found out.

"Will they lose coverage of their insurance, for example? There’re a lot of those questions hovering, and there are just no clear answers around them until much later, I suppose."

Avin Tan Action for Aids office
It took Mr Avin Tan three years to tell his mother he has HIV. (Photo: Aqil Haziq Mahmud)

Another affected individual, who only wanted to be known as Rico, told Channel NewsAsia he was exercising outdoors on Sunday when he got the call. As it was not a working day, he did not believe it was official.

"I thought it was a prank," Rico, 31, said. Only when he established that it was someone from the hospital he goes to for check-ups did he let his guard down. He was asked to find a quiet place.

"My mind just went blank," added Rico, who has been living with HIV for almost a decade. His immediate concern was whether a police report had been made, but since then, his worries have grown bigger.

"I have a nagging fear that the information will be leaked again, and that it will be worse this time," he continued. 

Rico has reason to fear the consequences of his identity being revealed. After he was initially diagnosed, he told someone and was shunned.

"I told someone whom I thought would listen," he said. "But the person outright rejected me. The person broke our friendship based on that."

Fortunately, Mr Tan said he has not received reports of major fallouts from the incident, like people getting fired or losing their insurance coverage.

"I think it’s a mix between being anxious and frustrated," he said of the current sentiment among the HIV-positive community. "The sense of helplessness is there, because there’s nothing else we can do about this at this point."

COMMUNITY TRAUMATISED

The bigger picture, however, is that the incident has destroyed the trust the community had built up over the years to seek help in Singapore, Mr Tan said.

"We have spent so much energy and time trying to build up people’s trust to seek care here, and that trust has just eroded now," he explained. "It’s very traumatic because all the work that has been done over the last 20 years, it’s so easy to lose."

Avin Tan Action for Aids sign
Mr Avin Tan wants the public to show support for those affected: "Put it up as a Facebook status update, tell them that no matter what, I'm going to support you." (Photo: Aqil Haziq Mahmud)

Mr Tan said there is a lot of fear about letting the Government know one has HIV, adding that some in the community have now questioned if it is safe to go to advocacy groups like AfA.

"This incident is just going to drive people underground, it’s just going to cause rifts in relationships," Mr Tan added.

"On a personal level, it’s just the amount things that I’m reading online, it’s so hurtful to read. The misinformation that’s being spread, the bigotry and kind of comments, it’s an onslaught."

READ: HIV data leak a 'criminal act that should be condemned': Action for AIDS

For example, Mr Tan said some netizens had asked how authorities could have allowed so many HIV-positive foreigners into Singapore. Out of the 14,200 affected, 8,800 were foreigners.

"People with HIV are not monsters," Mr Tan stated. "Whether they are locals or foreigners, it has no implication on how they can work. And instead of showing the kind of concern, we are alienating people.

"It’s just very ugly to read them."

READ: 265 new cases of HIV reported between Jan and Oct: MOH

Likewise, Rico worries that the incident would worsen the stigma surrounding those with HIV. Those who are unsure about seeking help might not come forward now, he added.

"It’s not just 14,200 people, it’s not just figures. It’s the number of lives affected," he stated. "Everyone is really angry about what happened. I am as angry as anybody else."

EVERYONE LOSES

Mr Tan is angry too. He was friends with Ler and Brochez, and had looked after their cat at their place a couple of times.

"There’s that very disgusting kind of bitter aftertaste, like I’m actually quite closely linked to this entire thing," he said. "I know it’s nothing to do with me, but it’s just a bit scary that all that was happening while we were friends."

READ: ‘I am sorry’: Gan Kim Yong says health ministry providing support to HIV sufferers affected by data leak

Because of what the two men did, Mr Tan said everybody ended up suffering the consequences.

"I think every single person - MOH, everyone whose info had been leaked, including them - are losers in this entire situation," he added. "So really, it’s not something very nice that he did, but the law will take its own course, and I don’t need to add more to that."

Source: CNA/hz(hm)

Bookmark