‘Better to die’: A teenager’s long trip from interior to city for HIV treatment

Every two months, Ryan and his grandmother prepare for a gruelling four-hour journey from their home in Lubok Antu, a rural district in Sri Aman, Sarawak, to the capital city of Kuching.

It’s a long and tiring trip for the 13-year-old, who must reach the hospital in the city in order to receive treatment.

Ryan, who was born with human immunodeficiency virus or HIV, is one of many patients whose already difficult lives have been further complicated by the outbreak of Covid-19 in the state.

In Sarawak, the pandemic has killed 145 so far with over 25,500 recorded infections since the virus was first detected in the country last year.

Over the past week, it has remained among the states with the highest number of new daily infections, reaching a high of 960 on April 16.

With much of the attention on the virus and how to keep it from further spreading into the community, those like Ryan are in danger of slipping through the cracks.

As a young child, Ryan received treatment at the hospital in Bintulu as his mother worked in the town.

But he lost both his parents at the age of seven. After their deaths, he went to live with his grandmother, Mary, in Lubok Antu.

Now, the problem of how to continue his treatment is a constant source of concern for her.

“Ryan has been under my care since his parents passed away,” she told MalaysiaNow. “After their deaths, his case was referred to Kuching.

“Basically, he has to visit his doctor every two months for further treatment and check-ups.”

But to do this costs money that she often does not have.

While there is no charge for treatment at government hospitals, expenses mount up in various other forms, chief among which is transport.

“Even though people say public health is free, to travel to the big place needs money.”

For Ryan to reach the hospital in Kuching, he and his grandmother must travel four hours by land.

“We don’t have any transport. We depend on public transportation like buses and ‘van sapu’,” Mary said, referring to illegal or unlicensed vehicles.

If they travel by bus, they must first make their way to Sri Aman in order to buy their tickets. The bus will then stop at Kuching Central, which is still far away from the hospital. In order to reach the hospital, they must take another bus. Sometimes, they might call a Grab car instead – but only if they have a little extra money that day.

“You cannot access healthcare for free,” Mary said. “Even though people say public health is free, to travel to the big place” – her term for the city of Kuching – “needs money.”

“Since Covid, this has troubled us,” she added. “The cost is big.”

Such stories are nothing out of the ordinary for HIV patients who live in rural Sarawak.

Dr Yuwana Podin, an activist from the Sarawak AIDS Concern Society, said many HIV patients have been deprived of treatment due to the distribution of doctors and medical experts.

The situation is compounded by a lack of amenities which has raised the cost of healthcare facilities.

Speaking to MalaysiaNow, she said the various travel restrictions imposed since March last year have also complicated matters for patients like Ryan, who must make their way through roadblocks and police check points in order to reach the hospital.

They must also apply for permits ahead of time, which is difficult for those who live in rural areas.

“Their health check-ups might be delayed due to Covid-19,” Yuwana said.

“Whether it is temporary or not, stopping their medication could lead to a rebound of the virus, making it more difficult to control the disease.

“It is important for them to have regular follow-up treatment, check-ups and medication to keep the HIV virus suppressed and to ensure that their immune systems remain strong.”

She also urged HIV patients to register for vaccination, saying the Covid-19 virus could be “unforgiving” for such people.

But in any case, staying strong is hard for Ryan, who although still young has had to endure much since the onset of Covid-19 in the country.

“He often tells me, ‘It is better if I die’,” Mary said.