PEOPLE living with human immunodeficiency virus (HIV) in Sarawak will attest to the road to get treatment being arduous and long, both in terms of dealing with the social stigma it brings and literally spending long hours on the road.
Many, especially those from the hinterland, however, find some respite at the Teratak Kasih Tok Nan facility in Kuching, which is more than just a shelter for them, as it also offers dignity, compassion and a chance to live normally.
Teratak Kasih Tok Nan, which operates under the Malaysian AIDS Council (MAC) and supported by the Malaysian AIDS Foundation (MAF), is a transit home for HIV-positive individuals.
These individuals often travel from rural areas in Sarawak to the cities to get their treatment that they need.
Dr Zaiton Yahaya of MAC and MAF said the transit home is for the less fortunate coming from very far away.
“For some of them, this is their only option. They come from deep rural areas, and they don’t have any other place to stay while they get treatment,” she explained.
Therefore, the shelter helps with essential logistical needs such as transport and food, and also supports HIV patients emotionally.
Teratak Kasih Tok Nan Chairwoman, Dr Ruziana Miss, highlighted that many clients are referred to the shelter through infectious disease or family medicine specialists.
“The medical professionals help fill out financial aid forms for people from the B40 income group or those without jobs or transport.
“Once it’s submitted, our team at MAC and MAF assesses the application, and we’ll forward it to MAF for approval,” she explained
After approval, the shelter will offer assistance of up to RM300 for patients traversing long distances, thus covering transport and lodging costs.
Not only that, there’s also food and emotional support, especially for those without families to accompany them.
“We do all we can to make sure they can get the treatment they need,” Dr Zaiton added.
Apart from the logistical support, Teratak Kasih Tok Nan also helps address the critical medical needs of its residents and patients.
For some, second-line treatment is necessary when the initial antiretroviral therapy (ART) is not effective.
“Second-line treatment can be a crucial lifeline for many. If a patient is resistant to the first-line treatment, we transition them to a more specialised regimen,” she explained.
However, the second-line treatment is more costly and requires careful monitoring as well as maintaining the patient’s health.
“Our team works closely with patients, adjusting their treatment plans, and providing the best possible care to ensure they’re managing their health effectively,” she added.
Even with support, communication and follow up with rural patients remain a challenge as well.
With mobile line and Internet accessibility still an issue at rural areas, it is difficult to keep tracking the patients regarding their aid.
“There are some areas with no phone signal. We can’t always inform them about their aid approval,” Dr Zaiton said.
Despite this challenges, Teratak Kasih Tok Nan continues to find ways to reach their patients.
“We offer walk-in testing; we want to make it as easy as possible for people to get tested without any barriers,” she said.
Despite medical advancements that make it possible for people with HIV to live normal lives through treatment, stigma continues to be a major barrier.
Dr Ruziana said social stigma makes it difficult for patients to lead a normal life.
“We had patients who hide their condition from their family members because they’re afraid of being rejected,” she added.
Not only that, this stigma also reaches the workplace, with patients unable to get jobs because of their condition.
“Even today, some employers are hesitant to hire people with HIV. It’s still a struggle,” she said.
Dr Ruziana stresses that HIV can be kept under control with medication if the patient continues to take the medication regularly and follows the regimen.
“Undetectable means untransmittable. If you take your medication, the viral load becomes undetectable, and it’s no longer possible to transmit the virus,” she explained
Because of this, both Dr Zaiton and Dr Ruziana emphasised that there is need for understanding about HIV among the public.
“People need to know that HIV is not a death sentence. With the right treatment, people living with HIV can live full lives. We’re working to change perceptions and help reduce the stigma,” said Dr Ruziana.
“There’s nothing to fear. People living with HIV can sit next to us, they can work with us and nothing happens to you or to me,” Dr Zaiton added.
Those who wish to take a HIV test can head to Teratak Kasih Tok Nan.
Free self-test kits are also available via www.testnow.com.my, with collection points at selected non-governmental organisations (NGOs) under the MAF in Sarawak.