The ordeal of living with HIV

SHE is HIV-positive and has lost two husbands – one died, the other left.

But life must go on for Sofia (name has been changed), for her own sake and her children’s.

She has a son, 10, and a daughter, 3.

The 30-year-old single mother is happy her son has been tested HIV-free but worries for her daughter, who will go for the third test next month after two prior negative tests. She is praying her little girl, like her brother, will be HIV-free.

Despite the niggling suspense, Sofia was calm and composed when thesundaypost met her in the Teratak Kasih Tok Nan Kuching One-Stop Support Centre at Jalan Crookshank.

The centre, set up in 2017, is a community project of the Malaysian AIDS Foundation (MAF) and the Malaysia AIDS Council (MAC) under the care of the Sarawak AIDS Concern Society (SACS).

Shy and soft-spoken, Sofia said she has been a single mum for three years and works part-time, serving food and drinks. That is how she supports herself and her two children apart from some financial help from family members and her former husband, who sends money once a month for the children.

After some light conversation, Sofia, a bit reserved and tense at first, gradually relaxed and opened up to share her story.

She first discovered she had HIV after her first husband died from full-blown AIDS (Acquired Immune Deficiency Syndrome) in 2012. She said she got infected by him and has since been on anti-retroviral drugs.

Sofia revealed her late husband was a drug addict and had shared needles – a common HIV transmission mode – with other addicts. She never knew he was a user until a doctor found out he had AIDS and advised him to come clean.

“When I learned the truth, my world came crashing down,” Sofia said, her eyes welling up.

She suffered another blow when she was found to have contracted HIV.

“I was a housewife then and already had a son with him. It was the darkest time of my life and the only light was that my son had been tested negative,” she recalled.

Sofia said before passing away, her husband often had chills, bad coughing and headaches, adding, “It was amazing he still could drag himself to work. When he first sought treatment, he was suspected of having only a lung infection.”

Her husband’s health deteriorated quickly and he was in and out of the hospital. Finally, the doctor gave him a complete test, which showed his HIV infection had reached an advanced stage. About half a year later, he died.

It was during the subsequent compulsory blood tests Sofia and her son went through that she was found to have HIV.

She said for the sake of her children, she has to be brave in going through life with HIV posing a constant threat.

Fear of rejection

Besides dealing with the depression from losing her husband and testing HIV-positive, Sofia said she also had to grapple with the fear of rejection, lamenting that, at times, she felt as if she had been given the death sentence.

For her, the most difficult thing was telling her mother and sister about her condition and hiding the truth from her ailing elderly father.

“I just couldn’t break the heart of an old frail man. Besides, what good would do it to tell him,” she confessed.

Sofia said she shared her anguish with her mother and sister because she needed their moral support. She believed they were the only people who understood and empathised with her most.

“Of course, my mum was devastated but where else in the world is true love as true as a mother’s love. I didn’t want to break my mother’s heart but in whose arms could I hide my face and cry other than hers … like I did when I was small.”

Several years after her husband’s death, Sofia unexpectedly found love. She was upfront about her condition with her new suitor, saying he accepted her as she was and wanted to marry her.

Before getting married, they went through several counselling sessions together, discussing, and agreeing to a range of prevention, treatment, and support options with the backing of the counsellor. They were told they could still lead normal lives like other married couples as long as they practised safe sex.

Not long after the marriage, Sofia started to miss her period and this went on for several months.

The thing she wanted most to avoid had happened – she was pregnant.

“What to do?” she asked, resigned to her fate.

Sofia knew she needed medical care and counselling throughout her pregnancy. In 2017, her second child was born. Fifteen days after the birth, her marriage fell apart. Her husband left and later sought a divorce.

For Sofia, her children’s welfare comes first despite her predicament.

She said even now, she was not sure whether her daughter is HIV positive or negative as some more tests were needed. The little girl already had a test after delivery and another one at 15 months old. One more test is scheduled next month.

Sofia said her second husband is HIV-negative.

 

AIDS knowledge

She let on that she learned a lot about AIDS through her ordeal.

“If one knows how HIV is spread, one needs not be fearful of people living with HIV (PLHIV). Fear is a knee-jerk reaction as people generally don’t know HIV can only be transmitted through some specific ways. So it isn’t easy to spread HIV except through certain activities. You can get flu if a person with flu next to you sneezes or coughs, but you cannot get HIV if a person with HIV next to you sneezes and coughs.”

Sofia recalled in the beginning, her mother and sister were afraid to share utensils with her, thinking HIV could be spread through sharing cups, plates, spoons, or forks. But they were at ease after Sofia brought them to one of her counselling sessions. Now they have a better understanding of HIV and its mode of transmission.

Sofia felt she could lead a normal life as long as she takes her medication.

“Unlike the past when HIV was considered a terminal illness, there is now hope for PLHIV as long as they stick strictly to their treatment regime,” she said.

She is also getting a lot of support from the SACS and the Teratak Kasih Tok Nan Kuching One-Stop Support Centre and has this advice to offer, “HIV-positive people who need support must not hesitate to ask for it.”

Mental health

Victoria Antai Belayong, the coordinator of the One-stop Support Centre, noted that mental health issues such as depression still loomed large for HIV-positive individuals as stigmatisation, misinformation and trauma remained largely resolved.

She said HIV-positive people struggled with disclosing their status to their partners and family members, adding that isolation, feelings of worthlessness and low self-esteem were affecting those dealing with this fallout from families and friends.

Sofia suggested the One-stop Support Centre consider providing community-based HIV testing, counselling, treatment literacy, legal and welfare service referrals, life skills training, and other social reintegration support.

“The centre also can serve as a halfway home for people who have to travel long distances for treatment at the Sarawak General Hospital. It can accommodate 13 people.”

How can SACS help Malaysia achieve its AIDS-Free target by 2030?

SACS president Dr Yuwana Podin said they had been working with the grassroots through awareness campaigns and community-based HIV testing under the Harm Reduction Programme.

“Through these efforts, we hope to have a better awareness of HIV/AIDS among those at risk while encouraging HIV-positive people to get immediate treatment,” she added.

 

Reaching out

According to her, two outreach teams are presently covering Kuching and Miri but they cannot serve other places yet due to limited funding and human resources.

“Although the Health Ministry provides a grant through the Malaysian AIDS Council, it’s still quite limited to sustain the programme,” she pointed out.

Dr Yuwana said the outreach workers were targeting the high-risk group through social media now that sex workers and one-night standers were looking for potential clients online.

“We are also trying very hard to address the stigmatisation and discrimination. The subject of AIDS is still taboo today,” she said.

Dr Yuwana noted that apart from the lack of understanding, prejudices, and self-shaming, failure or refusal to stick to treatment was among the problems facing PLHIV.

“They need to adhere strictly to their treatment regime. The drugs used in ART may have side effects but it’s important to stick to the prescription with very accurate timing to ensure the virus does not mutate and the drugs continue to work.

“The first line of therapy drugs is fully subsidised by the government for treatment in public hospitals. Sometimes, they may not be effective for some people due to mutating viruses and poor drug adherence.

“ART drug resistance is normally seen in cases where patients do not adhere to treatment or when the virus mutates and becomes drug-resistant. In such cases, there is the next line of drugs which is more expensive – about RM1,000 a month – and not subsidised.”

Dr Yuwana said although it was generally thought HIV or sexually transmitted infections only affected promiscuous people, the fact is anyone could be infected through these main modes – sexual transmission, shared needles, contaminated blood, vertical transmission from mother to child during pregnancy, and breastfeeding.

“People need to know HIV is not transmitted through touch, mosquito bites, canned food, and sharing of cutlery or food, and that HIV infection is not a death sentence. If detected early, it’s possible to stay healthy and live like any AIDS-free person.”

She added that HIV in Sarawak was transmitted mainly through unprotected sex while noting a gradual increase of HIV-positives among intravenous (IV) drug users.

Has there been a rising trend of new HIV infections in recent years?

Dr Yuwana said based on Health Ministry data, the rate for HIV notification had dropped nationally but in Sarawak, new HIV cases were on “a steady increase”.

This could be attributed to higher awareness and greater effort in detecting HIV-positives, she added.

“It remains to be seen whether the increase reflects a rising trend of HIV transmissions in Sarawak or a better awareness and detection programme. What’s more important is public awareness of preventing transmission and accessing treatment for HIV-positives.”

Is it true PLHIV cannot transmit HIV sexually to their partners?

According to Dr Yuwana, HIV is transmitted mostly by people unaware they have been infected.

“There’s a higher transmission risk from someone newly infected – often well before a test is done. HIV transmission also occurs when someone with the virus is not treated or is treated but not virally suppressed. In such a case, they have not been on ART long enough or just sub-optimally. Also, the treatment may not be producing the desired results due to factors such as drug resistance.

“But with a strict treatment regime, it’s possible to reduce the viral load of PLHIV so that they won’t transmit the virus to their partners during unprotected sex. But this has to be closely monitored under consultation with doctors and specialists,” she stressed.

Asked whether HIV transmission from mother to child during pregnancy could be prevented, Dr Yuwana said it was possible, adding, “That’s why early detection, treatment and regular consultation with the doctor is very important. Although mother-to-child HIV transmission is always dangerous and risky, it’s necessary to know HIV does not spread from infected mother to child in all cases.”

The Sarawak AIDS Concern Society and the Kuching Divisional Health Office will be co-organising the ‘Stand By Me Charity Run’ on Dec 1 in conjunction with World AIDS Day. There are two events – 3km and 7km. Those interested can sign up at Revolution Run at Green Heights Mall or online at https://tinyurl.com/standbymerun2019.

The theme is ‘Communities Make The Difference,’ aimed at raising HIV/AIDS awareness and encouraging the community in Kuching to be part of the effort in reducing HIV transmission.

Many activities are planned, including Zumba and health screenings.

Shine Pharmacy will provide on-site foot profiling and body composition analysis. For further information, contact [email protected].