Stigma, discrimination remains for HIV/AIDS

by Luh De Suriyani on 2013-11-06

Stigma and obvious discrimination against people with HIV/AIDS continues to thrive, making it hard to cut the vicious cycle of the growing spread of the disease.

I Made Suarnayasa, coordinator of Jalak Putih peer group in Jembrana, told Bali Daily in Jembrana on Monday that officials from the Public Order Agency (Satpol PP) frequently raided the regency’s traditional red light locations to check commercial sex workers.

“The reality in the field is that commercial sex workers are now operating their business at home and may spread HIV/AIDS anywhere outside the red light districts,” Suarnayasa said, adding the raids to check and see if sex workers were using condoms were useless.

“These commercial sex workers can do their business in hotels, motels, rental rooms, many places unreachable by Satpol PP, or even volunteers working with them,” he said.

Suarnayasa said the Jalak Putih peer group was currently supporting 80 people with HIV/AIDS, many of whom were housewives and children infected by a parent.

The peer group was established to support and accompany people living with HIV/AIDS. The group can consist of people with HIV/AIDS and people helping those with HIV/AIDS, or a combination of both.

Jembrana has the fourth largest number of people with HIV/AIDS in Bali, after Buleleng, Badung and Denpasar.

Despite ongoing education programs and providing information on HIV/AIDS, reaching out to families who have relatives with the disease remains a daunting job for many volunteers.

“At the present time, with so much information and development in HIV/AIDS medication and treatments, a large number of families keep discriminating against their relatives who suffer from the disease. Many of them still feed these HIV/AIDS patients from outside the window, fearing that they could get the disease,” he said.

In many cases, peer group volunteers take over the role of families in dealing with people suffering from HIV/AIDS.

“A lot of HIV/AIDS patients die in their own homes due to a lack of family care and medical treatment,” he added.

Many times, peer group volunteers have to take care of the bodies of the deceased HIV/AIDS patients since their families refuse to do so.

Gek Arum, another volunteer in a peer group in Bangli, shared a similar experience.

“HIV/AIDS in Bangli is like an iceberg phenomenon. The official numbers are still very limited. In reality, many people have died of HIV/AIDS without their families’ knowledge or hidden from the neighbors,” Arum said.

In her banjar (traditional hamlet), a man had died of HIV/AIDS and his family refused to take care of the body and to perform rituals for the dead. “I could not do it alone,” she said.

The presence of peer groups has opened the eyes of many people, families and society, on how to deal with people with HIV/AIDS. Volunteers in the peer groups have tried to gradually reduce various forms of discrimination against people with HIV/AIDS that are so entangled within Balinese society.

More importantly, peer groups also educate people with HIV/AIDS on how to make a living and how to move on with their lives.

Jalak Putih peer group in Jembrana and Kosala peer group in Buleleng have established centers producing chicken food and producing animal-based fertilizers. According to Yayasan Spirit Paramacitta (YSP), there are several peer groups in Denpasar and six regencies — Badung, Bangli, Karangasem, Buleleng, Tabanan and Jembrana.

Putu Utami Dewi, YSP director, said there were 8,100 people living with HIV/AIDS across Bali. The peer groups accompanied 400 people in 2012, particularly heterosexual groups, injecting drug users (IDUs) and women infected with HIV/AIDS during the pre-natal and post-natal period.

“Peer group volunteers need to provide people with HIV/AIDS with comprehensive information on treatments and the spread of the disease, but it should be communicated in simple and clear language,” Utami said.

Many people with HIV/AIDS, particularly those living in remote villages and with poor education, do not understand what HIV/AIDS is, how they became infected and how to treat it properly.

Currently, access to medication, treatment and counseling for people with HIV/AIDS is centered in Denpasar, Singaraja and Badung.

“The role of peer groups is extremely important in accompanying and reaching out to people with HIV/AIDS and their families living outside these three areas,” Utami said

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