Malaysian NGO reps raise concern over lack of HIV shelter homes for patients needing nursing care

Malaysia aims to achieve the target of zero-HIV/AIDS nation by the year 2030. — AFP pic
Malaysia aims to achieve the target of zero-HIV/AIDS nation by the year 2030. — AFP pic

KUALA LUMPUR, Dec 3 — Four years ago, Malaysia announced plans to achieve the target of becoming a zero-HIV/AIDS nation by the year 2030.

Among the many stakeholders is Malaysian AIDS Council — an umbrella body for non-governmental organisations involved in HIV/AIDS work.

Those in MAC have worked hard to make initiatives such as prevention, community screening and antiretroviral therapy successful. 

However, challenges remain. 

One of them was looking to provide people living with HIV (PLHIV) permanent shelter homes across the country for those who require nursing care but have neither a place to live nor a caregiver to look after them.

Although Malaysia has been successful in terms of HIV treatment over the years, there are still several cases each year who need nursing care.

HIV advocate Hisham Hussein — who has been at the forefront of the cause for over three decades as PT foundation chairman —expressed his frustration to Malay Mail after he came across a bedridden PLHIV patient who could not find placement at any shelter home for almost two weeks.

After contacting four shelter homes, Hisham said all of them could not take the 40-year-old male widow as they were full and could not afford to take an additional patient.

The patient is currently warded at Universiti Malaya Medical Centre (UMMC) and is being fed through a nose tube.

According to Hisham, some of the shelter homes he contacted were willing to take bedridden patients and required constant care, but he said the main issue has always been lack of funding to hire a full-time caregiver and cover operating costs.

He also questioned MAC’s efforts when it came to ensuring the shelter homes’ longevity across the country.

“Each year, we only have a handful of PLHIV cases who desperately need a shelter. 

 “So, my question to MAC is: do they have a strategy in place for shelter homes?” 

Hisham Hussein has been at the forefront of HIV prevention initiatives for the past three decades. — Picture by Ham Abu Bakar
Hisham Hussein has been at the forefront of HIV prevention initiatives for the past three decades. — Picture by Ham Abu Bakar

Hisham said the reason he expressed his anger over this case was that there were only a handful of such cases in need of a shelter. 

“If we have too many, it’s understandable not to be able to accommodate. But, we don’t get even five cases a year who desperately need a shelter,” he said.

The former MAC and Malaysian AIDS Foundation (MAF) honorary secretary also said MAC should call the shelter home operators to identify their issues and needs to avoid having a PLHIV patient being stranded when they were in need of help.

Positive Living Community Welfare Organisation Malaysia managing director Sabina Arokiam confirmed with Malay Mail that her centre was one of the five contacted by UMMC to take the bedridden patient.

However, she said her shelter home, which could only accommodate up to 15 patients, was already full and was trying to find a way to take in the patient.

For Sabina, one of the main challenges to expand her shelter’s capacity was the lack of funding.

“The problem is that we don’t have any stable grants to cover our operating cost, that’s why we always tend to hold back when it comes to taking in new patients.

“If we were to take the PLHIV patient currently warded at UMMC, it would cost us between RM1,200 and 1,500 a month.”

She said she was discussing with MAF and MAC to get the necessary grants to accommodate the patient at her shelter home.

“This is not the first time this has happened.

“Sadly, we have seen the same issue occur a few times a year.”

Sabina said she regretted to see that there was still widespread stigma surrounding HIV and AIDS despite years of awareness efforts.

She also said problems arose when the Welfare Department decided to place such cases under the Health Ministry a few years ago, citing that it was a health issue. 

“The department used to support shelter homes like us and we were able to take in more patients.”

“But my question is, how come that’s not the practice for cancer patients who are still under th Welfare Department.”

MAC executive director Parimelazhagan Ellan confirmed with Malay Mail that the council was aware of the UMMC patient and was trying to find a placement at a shelter home.

He said the reason it was taking time was because they had to do an assessment before the patient could be transferred to a shelter home.

Moving forward, Parimelazhagan said it would be better if the government placed such shelter homes under the national welfare framework where hospitals could automatically transfer such patients to the designated homes.

“At the moment, the resources are limited and our funding this year has been lesser due to the Covid-19 pandemic.”

Currently, there are about 14 shelter homes nationwide, out of which 10 are partner organisations of MAC.

Parimelazhagan said the council allocates RM1 million annually for the 10 shelters.

“The fund allocation comes from the RM7 million annual grants given by MOH (Health Ministry) for MAC to run various programmes, including prevention, community empowerment, care and support initiatives for PLHIV patients.”

The council also receives about RM700,000 annually from MAF through fundraising activities.

However, Parimelazhagan hoped MOH would increase the fund to between RM10 million and RM12 million to address other issues such as the funding for shelter homes.

He also called on the government for a more long-term solution to establish permanent centres under the Welfare Department for PLHIV patients.

Parimelazhagan said although the number of bedridden PLHIV cases has dropped significantly due to improved treatment options, he was pushing to convince the government to set up a permanent shelter home in each state.

“We may even have some of the recovered patients with undetectable viral load levels to work as caregivers at these shelter homes.”

According to infectious disease physician Dr Iskandar Azwa the reason they still get ill and bedridden PLHIV patients was because some of them refused to come forward and get tested at an early stage.

“Because of the stigma associated with HIV testing, most don’t get tested until they have been infected for many years and become sick from the disease.

“When patients present in an advanced stage of HIV, they often have several underlying infections due to a weakened immune system,” said Dr Iskandar, who is also MAC honorary secretary.

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