While there is still no effective cure, major medical advancements in antiretroviral therapy have made living with the human immunodeficiency virus (HIV) much more manageable. While it’s no longer the death sentence it once was, social stigma still exists. The Straits Times speaks to eight people in Singapore living with HIV about what life is like since their diagnosis.
In 1985, Singapore reported its first case of human immunodeficiency virus (HIV) infection. At that point in time, little was known about the virus or how to manage it. It was widely seen as a precursor to Aids and, without a cure, a certain death sentence.
It did not help that it was spreading disproportionately among already marginalised groups: men who had sex with men, sex workers and drug users. In Singapore, as in many parts of the world, fear of contagion and the unknown led to widespread discrimination against and stigmatisation of people living with HIV (PLHIV).
“There was no information, we didn’t know how it spread and everybody was so scared,” recalls retired Singaporean nurse Iris Verghese, 78, who counselled Singapore’s first HIV patient as a health adviser.
Nurses and doctors were resigning because they were scared of getting infected, she says. Taxi drivers refused to ferry passengers to and from the old Communicable Disease Centre in Moulmein Road, where patients with HIV and Aids were treated.
“In those days (the late 80s and 90s), people with HIV had a poor prognosis,” says Professor Roy Chan, the founding president of Action for Aids (Singapore), or AfA. Founded in 1988, the charity was the first support group for PLHIV in Singapore, advocating their welfare, rights and access to treatment.
According to the latest statistics released by the Ministry of Health (MOH) in July 2024, there have been 2,457 HIV-related deaths in Singapore since 1985.
The few patients who survived those early years were the ones who managed to obtain the first generations of anti-HIV medication, and those with resilient immune systems.
“They were the fortunate ones,” adds Prof Chan, a doctor specialising in skin diseases and sexually transmitted diseases.
Fast forward four decades. While there is still no definitive cure for HIV, major medical advancements in antiretroviral therapy have revolutionised its management. In the US, more than 30 such types of medication have been approved by the Food and Drug Administration.
Treatment can reduce the amount of virus so much that it is undetectable in blood tests. PLHIV with undetectable viral loads will not infect their sexual partners even if they have unprotected sex, and can have children without passing on the virus.
Gone are the days when they needed up to 36 pills a day that caused severe side effects such as nausea, diarrhoea and insomnia. Today’s medication is more effective in suppressing the virus, can be delivered in just one or two pills a day and has fewer side effects, allowing a better quality of life.
These developments mean HIV is no longer a death sentence, but a manageable chronic condition – one whose treatment has become more financially accessible as well.
For decades, HIV patients in Singapore had to fork out more than $1,000 a month for patented drugs.
“Due to the cost of the medication, quite a number (of patients) underwent suboptimal treatment – taking only part of the drug regimen, or taking the medication on and off to save money,” says Dr Ho Lai Peng, a medical social worker who has been working with PLHIV for 30 years. Even when treatment was available, she saw patients die from HIV-related complications.
Many turned to Thailand or India for generic antiretroviral medication, either travelling themselves or getting “couriers” to bring the medicine home. A month’s supply cost just over $100, and was not always guaranteed.
Deductions through MediSave to pay for some HIV antiretroviral medications were gradually increased over the years, from $200 a month in 1992 to the current limit of $550 a month today. The scope of coverage has also been enhanced to cover all HIV antiretroviral drugs registered in Singapore.
Between 2006 and 2009, the cost of HIV medication here fell by about 10 per cent to 40 per cent, in line with global trends.
Subsidies were also introduced. In 2010, the Government extended the use of MediFund to help needy Singaporeans pay for HIV treatment.
In 2014, under the Medication Assistance Fund, subsidies of up to 75 per cent were given on a case-by-case basis to patients who required HIV antiretroviral drugs.
In September 2020, after years of advocacy efforts, 16 antiretroviral drugs were included in MOH’s list of subsidised drugs. This meant that Singaporeans and permanent residents can get between 50 per cent and 75 per cent subsidies for their HIV prescriptions.
“Now, patients on initial HIV medications pay between $100 and $200 after subsidies. They can also use their MediSave to pay for the medication,” says Dr Ho.
Despite these positive breakthroughs, social stigma and misunderstandings remain a big challenge for PLHIV, and most choose to keep their condition secret.
Of the eight individuals living with HIV whom The Straits Times spoke to, only one is publicly living with it. Two of them, who shared their stories with ST back in 2008 and 2011, say that despite growing awareness that has improved things since, they still live with the fear that their identities will be exposed.
From the shock of diagnosis to managing the virus, and their hopes for a more inclusive future, here are their stories.
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