PETALING JAYA, October 6 — Sabahan couple Juni and Tahir (not their real names) live in a poverty-stricken home in a village in Sandakan.
There is no furniture in their living room and an old sewing machine has been upcycled to be a motor for a ceiling fan while their kitchen only consists of a stove and some old pots and pans.
To get to their home, one needs to park their car at the side of the main road and walk up to the village for 300 metres before arriving at their house.
The husband Tahir, 55, works as a fisherman and occasionally heads to an island nearby their home to catch fish.
Juni, 44, a housewife sometimes helps her husband at sea during school holidays, especially when his income is not enough to keep the family afloat.
Due to their dire situation, they do not have enough money to buy a boat and they borrow one from their nephew to head to the sea.
But the couple also have a secret that they have kept from their neighbours and their children for the past 12 years.
Both of them have been living with HIV since 2010.
However, their status is now ‘undetectable’ (this means that there are so few copies of the virus in their blood, that they can now live a normal life and will not be able to transmit the virus to anyone else).
“It was devastating news for us — we hardly went out because we were so embarrassed by the fact and kept it a secret from our children, who are now both 11 and 21.
“Not just that, my wife has cervical cancer Stage 2A so it was such heartbreaking news when we knew that we were both positive.
“Despite having cancer, she would sometimes sell kuih by the roadside when times were desperate,” Tahir said, breaking into tears while narrating his plight.
Tahir added that despite their situation, the duo is always constantly motivating each other to take their medication (antiretroviral medications) on time.
“It’s not easy for us at times as we need to travel for our medications, but we have been diligent in making sure that we take that on time.
Juni added that the couple needed to be strong for their second daughter, 11, who is still studying.
“Our eldest daughter, 21, is already married and is staying with us — but she doesn’t have a clue that we’re HIV-positive.
“But what we can do, we do — like reminding each other to take our medication and being hopeful that each new day would be better than the previous one,” Tahir said.
Single mother who needs to be strong for her children
One has to commute by boat to reach the home of Siti (not her real name), middle-aged woman who is also living with HIV.
She is a single mum who discovered that she was HIV-positive in 2015 after realising that she had been having fever and persistent cough.
Siti who was shocked after finding out about her HIV-status was comforted by doctors that she would feel better if she took her medications. — Picture via Ahmad Zamzahuri
Staying with her elderly mother and her three children — all aged between 19 and 22 — none of her family members know that she is HIV-positive.
Like Juni and Tahir, she too has reached undetectable levels.
“Initially, I was shocked and afraid to see the doctor when I first discovered my condition.
“But after being motivated by the matron (nurse) that I’m still at the early stage of my HIV, I was comforted and that through anti-retroviral medication (ART), my HIV can be under control.
“Although I stay with my children and mother, no one knows about my HIV-status. My oral medications are all kept safely in a cupboard in my home.”
She explained that her second daughter knows that she is unwell, but doesn’t know that it’s because of HIV.
To get to the clinic, she needs to travel via boat out of the island and if there are no taxis available, she needs to catch the bus to the clinic.
“The boat ride would cost me RM3 while the taxi fare would cost me RM10. If I can’t get the taxi, I would need to pay RM2 for the bus ride.
“But I’m feeling much better now as I’ve been diligently taking the medication and I feel much better,” she said.
Offering hope to HIV-patients to seek proper treatment
Fortunately for patients like the couple and the middle-aged woman, non-governmental organisation Sabah Aids Awareness Group Association (Saga) founded by Dr Zaiton Yahya has been helping poor rural folk in parts of Sabah get their HIV treatment.
Saga was established in 2007 and the NGO later introduced SHAPE (Sabah Health Access Programme) in 2018 where it mainly operates in Sandakan and also covers other areas in Sabah such as Tawau, Semporna, Lahad Datu and Kunak.
SHAPE provides travel subsidies based on patients’ location to healthcare facilities and logistical costs to help patients from rural Sandakan to get access to clinics.
Since its inception, about 600 beneficiaries from B40 communities have benefitted from the mission of the programme with 146 out of the total beneficiaries being HIV-patients.
Family medicine specialist Dr Zaiton hopes that when SHAPE has more manpower, more aid can be given to patients in other parts of Sabah. — Picture via Ahmad Zamzahuri
Some of SHAPE’s partner hospitals and clinics include Sandakan’s Duchess of Kent Hospital, Klinik Kesihatan Sandakan, Klinik Kesihatan Kubota Tawau and Hospital Semporna.
The treatment includes prescribing oral medication, Highly Active Antiretroviral Therapy (HAART) to patients and to call them to attend their check-ups.
Speaking to Malay Mail, Dr Zaiton noted that a total of 150 HIV-patients from Sabah including Sandakan have benefited from SHAPE’s programme till date.
“Most of the HIV patients are all taking the first-line ART and we need to make sure that they would often go for check-ups or take their medication on time.
“My nurse and I also need to make sure that patients take their medications regularly — so my nurse would often call and check on them and would also visit their homes.
“Our main hope is to offer them a second chance to get better through medications,” she said.
As for the future of SHAPE, Dr Zaiton hoped that when there is more manpower, her team and her can reach out to HIV-infected patients in other districts of Sabah.
“There are some districts in Sabah (excluding town areas) that are still rural — and we hope to help more people in these areas one day,” she said.
Dr Zaiton, who bagged the prestigious Malaysian AIDS Foundation Tun Dr Siti Hasmah Award 2021 for her contribution to AIDS and HIV also said that grants from Yayasan Petronas and Malaysian Aviation Group (MAG) were crucial so that travel allowance and medication can be given to patients.
MAG is also the latest member of the Malaysian Business Consortium on HIV/AIDS — a coalition of Malaysian companies dedicated to eradicate AIDS-related stigma and discrimination in workplace.
Among the other diseases that SHAPE also assists other patients such as those with thalassemia, children with malnutrition, and those who are having renal failures