IT is no surprise that the stigma around people living with Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) or PLHIV is still going on to this day.
Despite the initiatives and the efforts made by the relevant government authorities in the fight not only to end the spread of the diseases, but also to educate members of the public that PLHIV are also human and want to lead normal lives, the stigma against PLHIV is still strong, especially from the conservative community.
This has caused those who are at risk of HIV/AIDS to not getting proper testing and treatments that they need the most.
Some of the stigma that PLHIV have face up to these days, include being discriminated by their own family members or the community as well due to the fear of them having the potential to spread the disease by human touch despite knowing it otherwise, and other aspects such as the community expressing their negative feeling towards PLHIV and believe that they do not deserve proper health care.
However, through proper education, awareness and most importantly acceptance and openness towards PLHIV, it is possible that they can lead a normal life sooner than later.
DEFINING STIGMA OF HIV/AIDS
According to a website called aidsmap.com, stigma means different things to different people.
One of the most suitable ones to define stigma is “the shame of disgrace attached to something regarded as socially unacceptable”.
When it comes to HIV/AIDS, members of the public have fears, prejudices, or negative attitudes about the disease.
It can result in PLHIV being insulted, rejected, gossiped about, and even excluded from social activities.
There are times, stigma could drive some people to physical violence, and this resulted in the PLHIV being often feeling anxious about telling others about their status due to the fear of being discriminated and ostracised.
This also could lead towards PLHIV being isolated and feeling unsupported by the community, which could have a significant impact on their health and wellbeing.
Ever since the first cases of HIV/AIDS were detected in the 1980s, PLHIV have been immediately stigmatised.
Among the reasons for this is such as members of the public who do not understand how the diseases is transmitted may be afraid of “catching” it through social contact.
This type of stigma leads to PLHIV not being treated with dignity and respect, and it happened not only in the workplace, but even also at higher learning institutions.
THE STIGMA IN MALAYSIA
In Malaysia, the stigma of PLHIV is still there, which causes a major barrier to care for them, thus the late presentation defining them as patients being diagnosed with advanced HIV remains a concern and unfortunately unknown.
An associate professor of infectious diseases at University of Malaya Dr Raja Iskandar Shah Raja Azwa said this as he revealed that in 2020, 41 per cent of all new HIV diagnoses in Malaysia had AIDS or baseline CD4 (a type of white blood cell) below 200.
“Most new HIV diagnoses continue to occur at a later stage through patients presenting unwell at health care facilities with opportunistic infections, rather than through earlier self-initiated voluntary testing.
“The reasons for this are complex, which includes stigma and discrimination, whether perceived or experienced, when accessing health services, low health literacy, and perceived low risk of HIV infection,” he said.
Professor Dr Christopher Lee, who is the former National Advisor for Infectious Diseases in the federal Ministry of Health (MOH) revealed that despite effective therapies becoming readily available, societal attitudes are deterring patients from seeking care they need, thereby impeding the nation’s efforts to combat and eliminate the epidemic by 2030.
“The thing is now that the setting for treatments is available, more accessible and cheaper, but unfortunately, stigma discrimination is the one we have to deal with,” he said during a panel discussion recently.
Chairman of Malaysia AIDS Foundation (MAF) Dr Adeeba Kamarulzaman felt that in some workplaces, AIDS-related discrimination is close to being institutionalised by rejection and unreasonable demands from employers for HIV status disclosures even when the situation is unwarranted.
“We are also hitting a wall when it comes to insurance protection for people living with HIV.
“We must be determined to reform laws, policies and practices to tackle the stigma and exclusion face by PLHIV and the marginalised population so that everyone is shown respect and is welcomed without prejudice,” she said.
As of 2019, a report by Malaysian AIDS Council (MAF) revealed that 67 cases were reported to MAC from January to December of that year.
“Of these reported cases, 31 cases involved workplace issues, 15 from raids/arrests (targeted groups), five from institutions of higher learning, three from healthcare settings and 13 from miscellaneous.
“MAC is also aware that there are more under-reported cases as PLHIV are still hesitant to come forward and seek help.
“Again, the concern with their confidentiality demotivates them to report their concern and some cases were successfully settled by the authorities and not reported back to MAC,” the report said.
CONTINUING BATTLES AGAINST THE STIGMA
Dr Helmy Azmi, lecturer from Faculty of Medicine and Health Sciences Universiti Malaysia Sarawak (UNIMAS) felt that though it may sounds basic, awareness and education are still the key.
He opined that those are the foundation to make the young generations understand how HIV spreads.
“A good knowledge base will help them make better choices when they face high risk situations later in life.
“Also, with a better knowledge base, there will be less stigmatisation, and people can come forward for treatment,” he said.
He then stated that relevant authorities need to look at the need to bridge the gap in the Antiretroviral (ARV) treatment.
“Currently the MAF provides a financing scheme or subsidies to assist lower income patients in getting second line ARV medicine.
“The issue is complex, but we need to enhance it and provide better access to those who need it.
“Although treatment for HIV is free for the first line ARV medicine, it only applies to Malaysians,” he stated.
He explained that an inclusive mechanism to allow accessibility to include patients regardless of their nationality and background, which will cover possible loopholes in the chain of HIV/AIDS infection.
“Most importantly, encouraging empathy, dispelling myths, and fostering open conversations about HIV/AIDS can help break down stereotypes and reduce stigma.
“We need a mature, and open discussion about HIV and AIDS delivered in a matter of factly, particularly among schoolchildren especially teens. The discussion should be informative and straightforward avoiding any mockery or jeering,” he said.
Kuching Division health officer Dr Azlee Ayub said that the people’s acceptance would give the PLHIV the support and confidence in acquiring proper treatment and with that, they could actually lead a normal life.
“We must understand that HIV is not a dirty disease, hence there is no reason to avoid and discriminate the PLHIV,” he said.
Dr Yuwana Podin, who is an exco member of Sarawak AIDS Concern Society (SACS) felt that those who are at risk of HIV are reluctant to get themselves tested because of the stigma that maybe associated with why they want to get themselves tested or otherwise.
“So for us, we are trying to erode that stigma associated with HIV so that people are much more willing to come out and get tested and if they are indeed infected, get treatment which will hopefully stop the virus from being transmitted to others.
“The stigma over the word HIV is also always associated with “How they got it?” However, whenever I speak with PLHIV, I would not ask such questions.
“Because it does not matter, what matter is how that person is going to live his or her life now and move forward,” she said.
She further explained that the people in Kuching most specifically are much more open about the diseases, let alone accepting, despite how there are still some people who still do not understand.
“The stigma is still there, that is why I feel although we have done a lot, there is still much more needed to be done.
“More people know what HIV is and how it is transmitted, thus there is so much more acceptance of PLHIV.
“I could not imagine seeing that say a decade or two decades ago. People would not want to associate themselves with even the words HIV/AIDS, as that time it evoked a different feeling,” she added.
To fight the stigma further, she stressed how important it is to raise awareness, especially among the young generations.
“We need the children to get educated about sexual intercourse and HIV, as we have seen lots of cases happening. It is crucial to get them educated,” she added.
In the third and final part of the series, readers will get an extensive look into some of the initiatives by the state government in the fight against HIV/AIDS.
