Negative and discriminatory attitudes towards people living with HIV are one of the biggest challenges by people suffering from HIV. Public perception has changed little, and these has become a serious threat to the battle against the virus.
Rejected, alienated, scorned
Let us not forget — that amidst Covid-19, we are still at war with the Human Immunodeficiency Virus, commonly known as HIV. Attacking the body’s immune system, HIV is an infection that weakens a person’s immunity against diseases such as tuberculosis and various cancers.
With early testing and consistent antiretroviral treatment, people diagnosed with HIV can have a similar life expectancy to the general population. The treatment may also prevent HIV transmission to others.
However, if a diagnosed person’s immunity is severely compromised, they can be described as having AIDS (Acquired Immunodeficiency Syndrome).
It is said that the disease is the most advanced stage of HIV, which takes between two to 15 years to develop, depending on the individual.
With AIDS, an individual will be more likely to develop infections and cancers which are not likely to cause illness in a healthy person’s immune system. Those who developed AIDS can usually be observed having drastic weight loss, persistent white spots or unusual lesions on the tongue or in the mouth, swollen lymph glands and many other symptoms.
While contracting the virus is not that easy, but through the exchange of bodily fluids with an infected individual such as blood, breast milk, semen and vaginal secretions, HIV can spread.
To be more specific, there are three main ways a person can contract HIV — through unprotected sexual intercourse, sharing of contaminated needles, syringes and others peripherals during the use of drugs, and by birth, when a mother passed on the virus to her unborn baby.
According to the World Health Organisation (WHO), as of 2019, 38 million people lived with HIV while 690,000 died of HIV related illnesses in the same time. In Sarawak, the State Health Department recorded a total of 446 cases in 2019, corresponding to its previous year of 465 cases.
Of the local cases in 2019, 95 percent were contracted through sexual transmission, while the remaining five percent are through the sharing of needles and infections from mother to child. Since 1989, the number of cases reported was 3,779, while the number of deaths caused by HIV was 736.
A bitter pill to swallow
Listed among the number of local cases, Beatrice (name withheld) contracted the virus in 2015. Living with the virus, she admitted that she worries for her life every day, and also the future of her two daughters, aged 20 and 14.
“I hope God let me live until both my daughters are old enough,” she said. According to Beatrice, she contracted the virus from her husband. “While I was pregnant with my second child, my husband suddenly had a high fever. It was then that he admitted that he had contracted the HIV.”
Broken hearted, Beatrice then went for a test at the local hospital and was found to be positive for HIV. As soon as she heard the news, all she could think of was her then five-year-old daughter, and her unborn child.
“When I found out that I was HIV-positive, I thought of it as the end. That this is it for me,” said the 38-year-old in a private interview with New Sarawak Tribune.
Elaborating, Beatrice revealed how back then she had had given up hope due to misconception. Without any knowledge except for the things described on television, patients diagnosed with HIV would often think that their days are numbered.
Years later, she found out that it was merely a misunderstanding on her part. Having learned much about the virus, along with guidance and support from doctors, nurses and the Sarawak AIDS Concern Society (SACS), Beatrice picked herself up and moved on.Thankfully,
the virus was detected early, and it did not affect her baby in 2005. With medications provided by doctors to prevent the virus from spreading inside her womb, Beatrice’s baby grew up to be a beautiful, healthy girl.
Nonetheless, life was not easy on her and her family members as the society still scorned their presence. Those who knew about Beatrice’s condition shunned her, and some even chased her family away in fear of contracting the virus.
Though she admitted being hurt by the alienation, Beatrice persevered. She never retaliated and just accepted the fact that people are scared. She knew that it was only natural for people to fear things that threaten them.
Although she became somewhat of an outcast, Beatrice said that some still accepted her for who she is.
Right now, Beatrice visits her doctor every three months and is under medication to control the virus. Though it is a lifelong treatment, she is determined to keep on going for the sake of her daughters.
“The feeling of being a daughter, a sister, a friend is not as strong as being a mother. I hope that I get to see the day when both my daughters are old enough to live their own lives,” she said with tears down her cheeks.
For the 38-year-old mother, she concluded that this was a test from above.
“As long as God permits me to walk the earth, I will keep on fighting.”
Beatrice now leads an ordinary life, as a jobholder with a stable income.
She is a prime example of a HIV patient that is able to continue with her life after contracting the deadly virus. Beatrice was able to do so because of early detection, which raised her chance of survival significantly higher.
Beatrice urged those who suspects themselves of having the virus to go for immediate checkup and seek early treatment. She ended the interview session with a piece of advice for HIV patients, “Don’t listen to what people say. Live our lives as usual and take our medications. We must maintain our happy self. After all, being able to live normally after a life-changing experience is all that matters.”
Go for early treatment
The Sarawak AIDS Concern Society (SACS) urges members of the public to perform regular check-ups as early detection can prevent further complications. SACS president, Dr Yuwana Podin, said, “The most important thing to remember is that help is available for those who tested positive. There is still hope.”
Working together with the government, Dr Yuwana commended the government’s effort and support in channelling funds to HIV and sexually transmitted infections (STI) prevention programmes. Furthermore, free antiretroviral therapy is available in government clinics and hospitals.
Dr Yuwana added that the government is working closely with SACS to raise public awareness on HIV and AIDS, with more focus on the importance of having a test.
“SACS goes into communities where government agencies could not. As the key affected population is usually afraid to come out, we go in to raise awareness, get them tested and help refer them to clinics for further testing and treatment,” she said.
“Thanks to celebration-worthy advances in medicine, HIV is far from the death sentence it used to be. Treatment can even get the virus down to undetectable levels in people’s blood. In addition to being manageable, there’s another key thing to keep in mind: HIV is preventable, too.”
However, negative perception and stigmatisation are still strong within the community. Therefore, Dr Yuwana hopes the public would understand the need for change.
“Stigmatisation and discrimination have compounded our efforts in helping PLHIV who need care and support. Due to negative public views, many of PLHIV self-stigmatise, causing some to doubt their self-worth and even afraid to seek treatment.”
SACS, a non-governmental organisation (NGO) was formed on May 19, 1998, and has since conduct advocacy work specifically related to HIV/AIDS in Sarawak.
Its mission is to disseminate information on the prevention of HIV/AIDS to the general public and key affected population; to educate the public about the facts and myths regarding HIV/AIDS, to reduce stigma and discrimination associated with HIV/AIDS and to provide peer support to people and families living with HIV/AIDS and protect their rights.