Jamra primary scholl for children affected by HIV/AIDS, drugs or poverty, Senegal (c) Nell Freeman/Alliance Participants in the Photovioce project, Ecuador © Marcela Nievas for the Alliance

ICAAP: Community voices


Zar Ni Aung (left) and Ranny (right) (c) the Alliance

Members of two community based organisations tell us about the challenges they and the people they work with face, and what they hope to get out of attending the 10th International Congress on AIDS in Asia and the Pacific (ICAAP).

Ranny is one of the founders of Female Plus, a peer support group for women living with HIV in Bandung in Indonesia, which also provides support to women whose partners are living with HIV, as well as their children.

Zar Ni Aung is a member of Myanmar Positive Group, a self help group-network for people living with HIV which boasts over 12,000 members. The group focuses on capacity building, greater involvement of people living with HIV, access to treatment and reducing stigma and discrimination. They run workshops on prevention, literacy, counselling and advocacy.

What are the main issues around HIV for the key populations that you work with in your region?

Ranny: For women living with HIV, the main problems we face are mainly economic, namely trying to find stable employment to support ourselves and our families, without facing discrimination due to our HIV status.

Indonesia is an exceptional country in the sense that we are a Muslim-majority nation with a conservative culture that extends even into the medical field.  Many care providers still hesitate, or refuse, to give reproductive health care, including HIV testing, to unmarried women. Because of this stigma and discrimination, many unmarried women do not seek this care.  Female Plus works with the medical system and clients alike to change these attitudes to make sure that women are offered friendly and quality health services to protect their health.

All women in Indonesia have higher barriers to entry in the workplace, but women living with HIV struggle with a greater financial burden and thus a greater need for work. The reason for this burden is that women with HIV have higher costs; they must pay for necessary medical and psycho-social support services as well as nutrition and education.

Many of the women who we work with must support themselves financially as they have been widowed, have divorced or been abandoned by their partners. We find that this is often caused by problems relating to drug use.

Many women in my network are still hiding their HIV status from their parents and families, because it is so difficult to disclose, and this creates an additional psychological burden of stress. Women with HIV in Indonesia often must fulfil their own needs and the needs of their children alone, and this is why I saw the need to found Female Plus.

Zar Ni Aung: The greatest problem faced by the people living with HIV who I work with is the lack of universal access to antiretroviral therapy (ART).

Those who have been deemed ineligible for free ART (because they live outside of project areas) often face great financial problems in funding ART themselves. Some have even sold their properties, or given up their business to buy ART, causing disproportionate poverty among people living with HIV.

Some buy a few tablets at a time when they can afford them, while others borrow drugs from their peers. This is risky as it can cause drug resistance.

Those who live in the project areas also have problems. They face intense stigma and discrimination and many are afraid to seek help and treatment. People living with HIV often also have opportunistic infections (like TB and pneumonia) which means they are too unwell to stand in long queues to receive treatment at clinics.

Also, many live in rural areas very far from health centres. For that reason they will have additional costs for travel, food and accommodation if they visit a health centre. They also have to use their working hours to do this.

They should all have equal access to free ART.

What are you hoping to gain from attending The 10th International Congress on AIDS in Asia and the Pacific this year?

Ranny: I am attending the Congress with the hope of learning from others in my situation, and from other women's groups like mine.  I am sure there are best practices and valuable stories that can help me to make my network stronger and more useful.  Additionally, I will be presenting a poster called, "Empowered Community, Empowered People Living with HIV", about our Female Plus co-operative small loan system that has helped our members sustain their economic livelihoods.  I will provide an analysis on how psycho-social support - though difficult to measure - is an absolutely crucial need for women living with HIV, and how peer support groups like Female Plus can change lives through true empowerment.

Zar Ni Aung: At ICAAP10 I hope to share my experience and to learn from others. I also aim to establish networks with other people in the region. I enjoy taking all the opportunities I can to enhance my skills by participating in discussion and listening to other people.

I look forward to being able to share the knowledge and experience I will gain at ICAAP with my peers when I return.