After 25 years of caring for patients, Action for Aids finds it is still hard to erase prejudices
By Bryna Singh, The Sunday Times, 1 Dec 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 For four years, the organisation argued that the 24-hour rule was outdated.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."
PROFESSOR ROY CHAN, founder of Action for Aids and director of the National Skin Centre, on Aids patients
MILESTONES
- 1988: Action for Aids is formed.
- 1989: It holds the first nationwide Aids campaign, Aids And Safer Sex Fortnight.
- 1990: The Home & Hospital Care Service is started for Aids patients, who are given nursing care and emotional support. Medication funding is given to needy patients to alleviate the financial burden.
- 1991: The first anonymous HIV/Aids testing centre opens in Kelantan Lane. The first issue of Action for Aid's newsletter, The Act, is launched.
- 1992: The HIV In The Workplace committee is formed to tackle issues arising from HIV at work.
- 1994: Action for Aids is registered as a charity.
- 1997: The Street Walker Project is launched. The first collaborative project between the organisation and the Health Ministry, with volunteers handing out condoms and educational materials to prostitutes in red-light districts.
- 1998: Subsidies for anti-HIV medications for patients are launched. A second anonymous HIV testing site opens in a private clinic in Tanglin Shopping Centre.
- 2001: The Family Support Group is set up by Action for Aids to provide counselling and support to families affected and/or infected by HIV/Aids.
- 2004: The Action for Aids Endowment Fund is set up.
- 2007: Action for Aids holds its first Flag Day.
- 2008: To mark its 20th anniversary, Action for Aids holds an inaugural awards ceremony to thank 21 outstanding volunteers.
- 2010: Action for Aids is awarded the Dr Lee Jong-Wook Memorial Prize for Public Health at the World Health Assembly in Geneva, Switzerland.
- 2011: The Mobile Anonymous HIV Testing and Counselling Service is launched.
An inspiration named Henry
However, one name stands out in his memory: Henry. "Each time I am weary of the work, I remember him and I'm motivated to continue," he says.
Mr Tan, 43, senior deputy director at the Botanic Gardens, started as a volunteer in the programme in 2002.
Every Tuesday after work, he goes to the Communicable Disease Centre with other volunteers to visit HIV patients. There, they encourage the patients and provide companionship. They take snacks and drinks, and give simple massages.
During one such visit 10 years ago, Mr Tan met Henry, a pimp in his late 20s who used to bring prostitutes into Singapore. "He was obnoxious, very loud and no one wanted to go near him."
Grinning, the bachelor adds: "But I decided to 'sacrifice' myself and talk to him since I was the coordinator."
Midway through their conversation, Henry insisted on going to the toilet but fell when making his way there.
Mr Tan rushed to grab him and help him up. That instinctive action sparked something deep in Henry's heart.
He recalls: "Henry told me, 'You are the first person who has dared to touch me without hesitation'."
Mr Tan realised then how much the human touch meant to HIV patients, many of whom may be shunned by friends and loved ones.
Their friendship blossomed. Mr Tan speaks wistfully of the times he arrived at the ward and Henry would be waving enthusiastically, beckoning him over.
But within the year that they met, Henry's health took a turn for the worse and he died at the age of 30.
At the wake, Mr Tan says Henry's mother and sister told him: "Henry spoke of you all the time. He said you were kind to him. Thank you for being his friend."
Mr Tan says those words moved him deeply and still inspire him.
He shares Henry's story with volunteers to spur them to do their best for the patients.
He remains committed to his role and wishes more would join him and says: "So many volunteers have disappeared. Many verbally promised to set aside one evening for the patients but so few are willing to do that."
From fear to empathy
Then a freelance actress, she says part of the role immersion process involved having to go to an anonymous HIV- testing site to get herself tested.
"I didn't want to tell the taxi driver where I was going," she recalls. She alighted nearby and walked to the centre instead.
From her own self-consciousness, she started to understand the fears that HIV/Aids patients experience as they make their way to the site in Kelantan Lane.
When she got there, she met someone she knew who was going to get tested. "That was so disconcerting, to realise that the disease affects people I know," she adds.
After that, she got in touch with Action for Aids volunteers and also wrote an article on Paddy Chew, the first Aids sufferer here who publicly declared his condition.
Before long, she was volunteering in Action for Aids' Buddies Programme. "I was impressed by its efforts to fight stigma and to make others understand," she says.
Now an assistant director at NTUC Enterprise, she started going to the Communicable Disease Centre to visit HIV/Aids patients.
Again, she initially felt extremely uncomfortable telling cabbies her destination. "Thinking back, I feel so ashamed," the singleton says.
She also had fears that she would catch the disease, no matter how unfounded she knew they were. But as she interacted with the patients, encouraging them with words and touch therapy, her worries dissipated.
"I sensed their pain and need for love," she says. "When I saw the doctors and nurses doing so much more for them than what I was doing, the fear went away."
HIV/Aids infection rate 'stabilising'
MOH expects number of new cases this year to be similar to last year's 469
By Salma Khalik, The Straits Times, 30 Nov 2013
MOH expects number of new cases this year to be similar to last year's 469
By Salma Khalik, The Straits Times, 30 Nov 2013
In the first 10 months of this year, 378 people were diagnosed with the disease, leading the Ministry of Health to anticipate that the total for this year would be similar to the 469 of last year.
Since 1985, a total of 6,153 people have been diagnosed with the disease in Singapore.
The human immunodeficiency virus (HIV) which causes acquired immune deficiency syndrome (Aids) is primarily transmitted through sexual intercourse. This accounts for about 95 per cent of all cases diagnosed so far.
Others caught the disease through blood transfusion, kidney transplants overseas, sharing of needles during drug abuse, or infection at birth through their mothers.
A ministry statement yesterday, ahead of Sunday's World Aids Day, said of the 198 diagnosed in the first six months of this year, 95 per cent were men. Out of these, 143 were Chinese, 39 Malay and eight Indian.
About 10 per cent were bisexuals, with the rest split somewhat evenly between homosexuals and heterosexuals.
Two in five discovered their disease at a late stage, compared to previous years when this number was half.
Early treatment with antiretroviral drugs can reduce the damage to the body and allow the person to live an almost-normal life.
The ministry said almost half of the cases here were discovered through blood tests in the course of providing medical care for other problems.
One in three found out they had the disease through the routine offer of HIV tests to inpatients at all public hospitals since 2009, while one in five was diagnosed through voluntary HIV screening.
Professor Roy Chan, president of Action for Aids, said he was "relieved to hear" that the number of new cases had stabilised.
"It could mean that our educational and outreach campaigns have had an impact," he said.
But he cautioned that the number of people diagnosed does not necessarily reflect the actual number with the disease.
Anonymous HIV tests: 3 more sites to open
This brings the total to 10 centres; number of such tests has been rising
By Linette Lai, The Straits Times, 4 Dec 2013
THREE more anonymous HIV testing sites will be opened next year, bringing the total to 10.
In announcing the increase yesterday, Senior Minister of State for Health Amy Khor said: "With early detection and treatment, people with HIV can access care earlier, continue working, and enjoy a relatively normal life."
Dr Khor, however, did not give details of their locations or opening dates.
But the Health Ministry will choose clinics to be HIV test sites based on their experience in conducting rapid HIV tests, location and opening hours, she said at a fund-raiser to commemorate World Aids Day last Sunday.
At these centres, people can get tested for the human immunodeficiency virus (HIV) without disclosing their personal particulars.
It can help in early detection as two in five newly diagnosed cases in the first half of this year were in the late stage of the infection.
The number of anonymous HIV tests has been rising as more sites are opened. Last year, over 11,000 such tests were done compared with about 5,500 in 2005.
The increase follows the addition of four anonymous test sites in 2008, and a mobile testing service set up in 2011.
Action for Aids executive director Donovan Lo expects the increased number of centres to attract more people to take the test and help fight the spread of HIV.
"The primary benefit of anonymous testing is that it reduces the anxiety that at-risk patients feel about getting tested," he said.
Its centre has tested about 6,700 people anonymously this year, up from 6,264 in 2012.
Yesterday's fund-raiser was organised by HIV sufferers for the Singapore Association of Mental Health as a way of giving back to society. Said Ms Ho Lad Pen, a principal medical social worker with the Communicable Disease Centre: "The patients feel that with better treatment now, they can live longer and better lives."
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