Being HIV Positive (+) is not the end of the world but it
does bring with it some serious challenges. One HIV+ woman
in Denpasar explained, “Some of the things we need to
share with each other are how to tell your partner you are
positive, and how to approach important life milestones and
desires such as career or having a child, for example”.
Issues such as how to deal with ill-informed health workers,
stigma and discrimination from family and community members
are other topics of discussion amongst HIV+ people in Bali,
who find that many medical professionals have limited knowledge
of the virus and do not know how to manage opportunistic infections
that HIV+ people experience. For People Living with HIV or
AIDS (PLWA), and for family and friends who are affected,
“Bali Plus” provides much-needed support.
Bali Plus started as a group of 5 HIV+ people who came together
in 2001 to share experiences and support one another. At that
time, Mr. Mertha Ada provided space at the Bali Ushada Meditation
centre and also offered them guidance on using mediation to
help self-acceptance and build mental, physical and emotional
balance. Meditation practice continues to be an important
part of the Bali Plus team’s practice, however the group
of 5 has grown to become a registered non-profit organization
with more than 10 staff and a range of support activities.
Bali Plus hosts separate support groups for HIV + women, drug
addicts, former addicts, transgender persons, and gay people.
Each of these groups has different issues and needs, although
there challenges common to them all. Bali Plus has developed
a buddy system for PLWA, who particularly need support at
times when they are sick. They are training 15 volunteers
from local universities and a group of selected PLWA to work
as buddies and to lead support groups for others. A referral
book has also been developed for use by PLWA, as well as by
the buddies and by family. Many family members, like the general
community, have minimal knowledge of the virus and tend to
treat a person with HIV or AIDS in ways that are unnecessary
– for example, separating their clothes and eating utensils
from the rest of the family. Bali Plus offers information
and support, including counseling to families and others affected
by HIV/AIDS, and is particularly concerned about encouraging
partners of HIV+ persons to get tested. In many cases, people
are only learning of their own HIV+ status after their spouse
or partner becomes sick or dies of AIDS or and AIDS-related
illness.
Currently 203 PLWA have personal support directly through
Bali Plus, and many others in areas such as Singaraja, Negara
and Gianyar are supported by local groups that get financial
and material support from Bali Plus. A mobile phone hotline
was established in 2005, primarily for emergency support to
PLWA. Linked to this was a “Positive Fund” that
eligible people could access to have the first 3 days of hospitalization
paid for. Criteria for this are people with no family and/or
no ID cards, who are thus very vulnerable and in need of special
attention. The hotline has recently been discontinued due
to a lack of funding, however the “Positive Fund”
still exists but is dependent upon donations from caring individuals.
Putu at Bali Plus explained that many of the people Bali Plus
helps, for example through the “Positive Fund”
are from outside Bali, for example from Java, Kalimantan or
Lombok. “They come here but have no family and when
they become sick, there is no-one to help them. If they have
no ID card they cannot be admitted to hospital, but if they
are admitted, when released they are sent back to their place
of origin, where they have no support, and they end up back
here”.
The difficulty of responding to such cycles, from a humanitarian
and administrative perspective, continues to plague Bali Plus.
They have held numerous meetings with the Department of Health
and the Department of Social Affairs, for example, but generally
they do not see eye-to-eye on the needs of PLWA. Nevertheless,
recent efforts advocating increased attention to HIV and AIDS
in Bali through the local parliament has raised awareness
to some extent, and for the past few years anti-retroviral
medication has been available for free thanks to international
programs working with the Government of Indonesia through
local hospitals. At the community level, Bali Plus has been
invited by some banjar/community governance organizations
to attend their meetings and give information on HIV and AIDS.
This willingness to accept both Bali Plus in the neighbourhood
and to accept PLWA more generally, and to find out more about
HIV and AIDS, gives the team great hope. “We were really
surprised when the ibu-ibu warisan asked us to talk to them
about HIV. Our vision or dream is for equal rights and treatment
for PLWA, and to empower PLWA and those affected, so this
kind of pro-active invitation from the community is really
important. I hope more klian banjar will be open to learning
and accepting PLWA”, said Putu.
Bali Plus makes itself known through brochures in medical
laboratories, ports and so forth. The organization has some
financial support from the Australian government and people
(AusAID) and from individual donors. They require cash donations
for the Positive Fund, and also welcome donations of nappies/diapers,
vitamin supplements, plastic gloves and surgical face masks,
for example. There is also scope for readers to support Bali
Plus by offering something to help them motivate and retain
their volunteers, for example through a team outing or dinner.
Bali Plus is located in Sidakarya, south Denpasar, and can
be reached by phone on 710001, or email bpf@dps.centrin.net.id
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