Living +ly: Persons Living with HIV among the Malay/Muslim Community

LIFE-ALTERING, NOT LIFE-LIMITING: BORN WITH HIV

Fida (not her real name) is only 24 but she has been living with HIV since she was born. Fida, who is diagnosed with perinatally acquired HIV, lost her mother to AIDS when she was about 13 years old.

Fida shared, “I was born with HIV but I only found out about it when I was 12 years old. I had followed my parents to one of their medical appointments and I heard the doctor mention my parents’ HIV status. I then learned that, like my parents, I am also HIV-positive. My parents never told me about my condition. All I knew was that, growing up, I had to take medications daily, but I never knew what they were for. So I finally realised the pills and syrups that I’d been taking daily were my HIV medications.”

For Fida, adherence can be more complicated for youths growing up with perinatal HIV, whose lifelong experiences with HIV, stigma, and medications may pose challenges to achieving viral suppression. This is different from those who acquire HIV later in life.

“After losing my mum, I was so affected that I couldn’t attend school for half a year. I was angry initially with everything that had happened to me, so I neglected my treatments and medications. Consequently, I kept falling sick, got admitted into the ICU, and lost so much weight. The hospital was like my second home until I turned 21,” she said.

Today, Fida is better at dealing with the situation and does not let her condition bother her too much. Fida refuses to let HIV define her or limit how she lives her life. She enjoys bowling during her free time, and is currently pursuing a diploma in electrical engineering at a local polytechnic. She is also a mentor to other HIV-positive children.

Fida, who is one of the few PLHIVs in Singapore to have shared their story publicly, wants more people to understand what it is like to live with HIV, and to educate them about the illness. She added that while there are efforts to raise awareness and educate the public about HIV and AIDS, the outreach is still not enough.

PREGNANT AND HIV-POSITIVE

We also talked to Nadia (not her real name), aged 39, a PLHIV and mother of two. She found out she was HIV-positive while she was pregnant. She started her story by tracing back to how she had fallen prey to a Nigerian man more than ten years ago.

“We met at a coffee shop in Bencoolen Street and exchanged contact numbers. It wasn’t long before we went on a date and had a serious, intimate relationship. Subsequently, he made me sleep with other men and gave me an allowance for doing so. I did as I was told because of my genuine feelings for him at that time. He told me that if I want to marry him and have a better future, I had to do it for the money. I eventually got involved in sex work,” she shared.

Nadia shared that sex work was not the only thing she became involved in then. Her partner also made her his drug mule, transporting drugs to other countries such as China and Australia. She was eventually caught in Australia and landed herself in prison there – that was when she learned about her HIV status.

“I was pregnant while I was serving my jail term in Australia in 2005. I found out I was infected with HIV when I had to do the mandatory blood test for pregnant women. I am not sure when I was first infected with HIV. It could have been through sex work or sexual contact with my partner who also had multiple sex partners at that time. But thankfully, my baby wasn’t born with the virus,” Nadia said.

Nadia later got married to another man and had an extremely difficult pregnancy. According to her, she almost lost her life because she had stopped her HIV medication for a period of time.

“I wasn’t receiving treatment for HIV during my second pregnancy because I didn’t know I was pregnant until I was in labour. I had stopped my medication before that because I was sick and tired of swallowing so many pills daily. It was a risky move because I had serious complications after giving birth to my second son. I was in a coma for almost two weeks. The doctor even told my family that I may not survive,” she shared.

Nadia, who is now a befriender for HIV-positive females, shared that she wants women to be more educated about HIV because the virus may cause some problems unique to women, including their gynaecological health and fostering issues.

“I had to stay in a women’s shelter after I was discharged from the hospital because of some issues, and my second son was sent to foster care. Since he was an infant with maternal HIV infection, requiring dedicated resources and commitment from health, education and social work agencies, it was difficult to find a foster family initially. There were only two Malay/Muslim families willing to foster him,” Nadia said.

Nadia also emphasised the importance of getting early detection and seeking proper treatment. She explained that proper HIV treatment, for most, lowers the viral load in their body to a level that renders them effectively non-infectious. In fact, Nadia’s viral load is now undetectable, and her husband and two sons are HIV-negative.

GETTING DIAGNOSED EARLY

We met Adi (not his real name), a 55-year-old pump attendant, living with HIV, who also shared the same thoughts on the importance of early diagnosis and adhering to medical regimes. Like Nadia, Adi also has an undetectable viral load.

“I am not sure how long I have been living with HIV but I was diagnosed about 15 years ago when my late wife fell very ill and was hospitalised. She had a recurrent and persistent fever that did not seem to abate with the prescribed medication by the doctors. A blood test was done and that was when we discovered she was HIV-positive. The doctor advised me to take the same blood test and as expected, I was HIV-positive too. Unfortunately, when we sent our daughter who was then four years old for the HIV test, the result came back positive too,” Adi said.

Adi shared that he lost his wife to AIDS because she stopped her treatment. Her case is emblematic of the perils surrounding challenges that HIV-positive patients face – in particular, the dangers of not adhering strictly to the treatment regime.

“My late wife had a fear of taking medicine, so she often skipped them and eventually stopped treatment altogether. She was in constant pain, always very weak and often vomited. In addition, her skin condition became worse, which led her into depression and made her give up altogether. Furthermore, there was no financial assistance last time. We had to spend more than $1,000 each month just for medication, so she stopped because of that too. Her health deteriorated, and she eventually succumbed to AIDS about ten years ago,” Adi shared.

Adi emphasised the importance of HIV screening and shared that a HIV-infected person looks and feels normal during the early stage of infection, so it is not possible to tell if a person is infected just by looking at them.

“I would like to advise anyone who is unsure to go and get tested for HIV. I didn’t know I had HIV until the test was done. Apparently, many cases of HIV have no early symptoms. Get diagnosed early so you can treat it early too. It is also important to test for HIV so that you will not transmit the virus to others, especially your loved ones. In my case, our daughter had to bear the consequence and live with HIV for the rest of her life,” Adi explained.

Indeed, 57 per cent of the newly reported HIV cases in Singapore were detected in the course of medical care provision and such cases are typically at the advanced stage of HIV infection. Another 22 per cent were detected during routine programmatic HIV screening and 14 per cent were detected through self-initiated HIV screening such as voluntary screening. Cases detected via voluntary screening are more likely to be at the early stage of infection³.

COMMON MISCONCEPTIONS ON HIV/AIDS

According to Adi, what stops people from accepting PLHIVs is probably society’s own presumptions, phobias and prejudices which consequently impede some PLHIVs’ ability to talk about their status and seek the care and support they need. He shared that the stigma attached to HIV/AIDS most negatively impacts children – a demographic that has no control over their HIV status. It is because society stigmatises HIV with such ignorance that he dreaded telling his daughter about her infection initially.

“There are still great misconceptions surrounding HIV/AIDS. Every time you mention HIV, society will automatically link it to casual sex activity but that’s not always true. My daughter, for instance, was born with it. It is not fair to judge anyone with HIV. The stigma linked to HIV has led many to avoid getting themselves checked. Those who need financial assistance also tend to avoid asking for help because they fear being perceived negatively,” Adi said.

Indeed, there is evidence on how stigma and discrimination create barriers to HIV prevention, testing and treatment, which can reduce the impact of the AIDS response. For instance, according to a report by the Joint United Nations Programme on HIV/AIDS (UNAIDS), when people living with, or at risk of, HIV are discriminated against in healthcare settings, they go underground⁴. This seriously undermines the ability of healthcare officers to reach out to people through HIV testing, treatment and prevention services. Often, PLHIVs avoid going to clinics for fear of having their status disclosed or of suffering further stigma and discrimination. Stigma and discrimination are an affront to human rights, which puts the lives of PLHIVs and key populations in danger because when they wait until they are very ill before seeking help, they are less likely to respond well to antiretroviral therapy.

Related to the stigma faced by PLHIV is the extent of equating the contraction of the disease with the notion of being promiscuous.

“People usually associate HIV with something bad. For instance, when I recently declared my medical status to my school, they were judgmental. The officer-in-charge gave me that look, you know, like I’m someone who has casual sex. She also asked if my classmates will get infected if I share my food with them. My teacher even once told me that there are not many choices available for my career path given my condition. We still face stigma and discrimination in Singapore, and this must change,” Fida shared.

Fida’s experiences are not unique. Nadia shared other manifestations of discrimination including being isolated and forced to use separate kitchen utensils.

“Every time my extended family holds a gathering, they will tell me not to cook because they are scared to eat the food I cook. During Hari Raya, they serve me with plastic utensils and even cover the chairs that I sit on with plastic. They will also keep washing the toilet with bleach after I use them. There was once I accidentally fell asleep on my cousin’s bed and my aunt immediately removed the bedding and pillows, placed them in a plastic bag and threw them away. What’s sadder is that they don’t allow my son to play with his cousins despite me reminding them that he is HIV-negative. I am hurt by how they treat us so now I don’t attend family functions unless it’s my immediate family,” Nadia shared.

Such inaccurate beliefs about HIV transmission can lead to more fear and discrimination, which can further stigmatise people living with HIV. According to the MOH, HIV or AIDS is not transmitted through normal day-to-day contact with a HIV infected person⁵. One will not contract it through the respiratory route such as coughs and sneezes, the gastro-intestinal route, or casual person- to-person contact such as handshakes and hugs. HIV also cannot be transmitted via insects, food, water, or shared food.

HIV is most commonly transmitted through the act of unprotected sex with, sharing injection needles or piercing instruments with, receiving infected blood or blood products from a person with HIV, or during pregnancy, childbirth or breastfeeding. In Singapore, sexual intercourse remains the main mode of transmission for new cases in 2018 at 95 per cent with heterosexual transmission accounting for 43 per cent of the cases and homosexual transmission for 42 per cent of them.

Under the Infectious Diseases Act, it is also required for PLHIVs to inform their partners about their condition before having sexual relations. Those who fail to do so can be jailed for up to 10 years and fined up to $50,000⁶.