IN CASE YOU MISSED IT

HIV stigma pervasive

This story was first published in The Straits Times on Dec 1, 2013

For 25 years, Action for Aids has been fighting stigma and caring for those with HIV/Aids. But president Roy Chan says some things have not changed.

"We've not been able to change prejudice. Stigma is still pervasive," he says.

Employers still fire staff when they find out the employees have the disease and even the patients stigmatise themselves, he says.

"Some tell our volunteers not to touch them or they clam up and refuse to speak. Some try not to show their friends or loved ones that they are on medication, for fear of them finding out."

The organisation held its anniversary celebrations last night at W Singapore - Sentosa Cove, with a poolside gala and fundraising event. It also launched a music video entitled Doin' It Better, a collaboration between the organsation and pan-Asian girl group Blush.

"Doing It Better" is Action for Aids' newly adopted tagline too.

Says Prof Chan, the group's founder and director of the National Skin Centre, who is in his 50s: "It's a bit cheeky but it's motivational. It's a rallying call for us all to do things better."

Back in 1988, he and nine other like- minded people started the organisation. They felt then that the HIV/Aids problem needed a proper "community response and programme".

The organisation has a three- pronged approach - education, care and advocacy.

In the first few years, it focused on promoting condom use and keeping patients alive. "We used to ask volunteers and friends to hand-carry medication here from Australia," Prof Chan recalls of the limited range of medication available in Singapore in the 1980s.

Then, educational and outreach programmes were launched. "We talked about gay men and sex workers and transgender issues when no one did," he says.

The outfit also lobbied against certain rules and laws. One of these was the rule that the bodies of Aids sufferers had to be disposed of within 24 hours after death. For four years, the organisation argued that the 24-hour rule was outdated. It was drawn up in the mid-1980s when little was known about how the virus spread after death.

In November 2000, the Health Ministry allowed bereaved families up to three days to hold a proper funeral.

Another issue the organisation spoke out against was the plight of foreign spouses of Singaporeans, who had been repatriated because they were HIV- infected. On May 27, 2000, the Ministry of Home Affairs announced that these families' appeals would be treated "sympathetically, bearing in mind the family". Several of these families were reunited as a result.

Those little victories, says Prof Chan, were the result of many "quiet discussions" and written letters. "I'm not the violently pushy sort," he says.

Today, Action for Aids has six members on its Board of Trustees, 10 committee members, 11 full-time staff and 285 active volunteers. It needs about $2 million to sustain its programmes and meet operating costs.

While Prof Chan is thankful that there have been more people coming in to contribute time and money, he says change comes at "glacial speed" and old issues - such as stigma - persist even as new ones arise.

One of his latest challenges is complacent behaviour. "People are not scared of Aids anymore because medication has improved. People now think they can afford to be more careless, have more sex and more sexual partners. They don't care."

He also laments: "It's becoming a gay disease again. Infection rates from men-to-men sex have been increasing."

In the years ahead, he says the organisation will seek to target these issues via social media because that is "where eyeballs are".

One person who has benefited from the programmes is 28-year-old Avin Tan. He is HIV-positive and the second person here to publicly declare his condition, the first being Mr Paddy Chew, who did so in 1998. He died of the disease in 1999 when he was 39.

Mr Tan says that as an Action for Aids member at the time of his diagnosis in 2009, he was given counselling and medical help, and started his treatment quickly. He says he is now in good health and works full-time in the organisation.

"I used to question, 'Who am I with HIV?' But Action for Aids staff reassured me about my identity, that I could still be me. I am also assured that I would never be fired from this organisation," he says.

People like Mr Tan keep Prof Chan going, even after 25 years.

"The ultimate reward for me is when I see success in the form of zero deaths, zero new infections and zero discrimination here."

brynasim@sph.com.sg

This story was first published in The Straits Times on Dec 1, 2013

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