CHAMPIONS

OF PEOPLE
LIVING WITH
IN TIMOR-LESTE

Ines Lopes found out that she was HIV positive when she fell ill with a variety of u-like symptoms in 2006.
When she was diagnosed, she was pregnant with her second child. Realising there were no real support
groups for people with HIV, she founded Estrela+ in 2009 with a group of young women living with HIV. Today,
30-year-old Ines is the organisations Executive Director.
Estrela+ is a membership-based organisation that consists of individuals living with HIV. Most of the Estrela+ staff is also HIV posi-
tive. We feel that it is extremely important to ensure that day-to-day decisions are made by people living with HIV or those closely
affected by HIV, says Ines. Estrela+ runs peer-support groups so people living with HIV can provide knowledge as well as social,
emotional and practical help to each other.
Getting an HIV test is important. After
her diagnosis, Ines asked the rest of
her family to get tested so, if they
were found to have HIV, they could go
on a treatment plan, and stay healthy.
Free HIV testing and counselling ser-
vices are available at the National
Hospital, some district hospitals and
some Marie Stopes Clinics, where
testing can occur as part of other
reproductive health care. Marie
Stopes information hotline 800 1001
also provides information on testing,
as well as other reproductive health
issues.
Iness husband, who had received HIV-awareness training as a local police ofcer, vowed to support her and her work. However,
she did not receive the same support from her extended family. A big part of her work today consists of counselling family members
of people living with HIV. There are a lot of misunderstandings about HIV. If we open up to people about our condition, it will
decrease misperceptions in the community, she says.
There are other groups that offer support services to people living with HIV. Missionary Sisters Servants of the Holy Spirits run the
Becora Rest Home in the outskirts of the capital, Dili, where they provide accommodation, transport support and palliative care to
people living with HIV. If you dont have family, if you get problem at home or if you feel like you need some rest, you can come
and stay with us, says Sister Christina of the Becora Rest Home.

The sisters at the Becora Rest Home organise training sessions on nutrition and other topics for those staying
with them. The formal and informal sessions are designed to improve day-to-day management of their health
and overall wellbeing. Estrela+ and the Becora Rest Home regularly collaborate on training sessions, teach-
ing people the value of nutrition using traditional food widely available in the country.
People living with HIV have unique sexual and reproductive health-care needs. Those in heterosexual relationships wanting to avoid
a pregnancy need access to modern methods of contraception so they can manage their fertility, says Nicola Morgan, Country
Director of Marie Stopes Timor-Leste. Equally, women and men need non-judgmental information from health-care providers so
they can have children and prevent passing the virus onto future generations. Marie Stopes midwives ensure all clients are treated
with respect, regardless of their HIV status.

Timor-Lestes HIV infection rate remains low but there are higher
rates for some groups and some districts. There are also risk factors
in the country that could increase rates. There are misperceptions
about the disease, protection and prevention methods, says Inacio
Vaconselos, the program manager at Esperana, another peer-
support group in Timor-Leste. HIV is considered a foreigners dis-
ease, something that only other people have. I think it is important for
people to take an interest in nding out more about the disease and
learning about how to protect yourself.
People are surprised to hear that I
am HIV positive because they think if
you have HIV positive, you must be
really sick, says Ines. They think
HIV-positive people cannot have a
healthy life. Ines follows antiretrovi-
ral treatment, which is available for
free from the government at selected
hospital and clinics. I take two pills
in the morning and three at night. I
am very conscious about remember-
ing to take the medicine every day.
Otherwise, my body will get resistant
to it, and my health could suffer, she
says.

When I was rst diagnosed with HIV, some of my family asked me to leave the house. They said I had a bad
disease, says Ines. Now my family respects me. Even if they dont know what my job is, they see me always
ghting for the rights of other people. When there is some problem in the neighbourhood, people come to me.
I want to see stigma and discrimination gone for all people. I want all HIV-positive people to feel respected.
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