The First Indonesian National Congress of PLHAs recently closed after
five days of meetings in Lembang, West Java. The Congress was attended by 124
people from 25 provinces, the majority of them infected by HIV, and the
remainder those directly affected by HIV/AIDS (family, partners, etc.).
Participants unanimously agreed the following statement (unofficial translation
from Indonesian original), which will be presented to the Coordinating Minister
of Peoples' Welfare/Chair of the National AIDS Commission this week:

"Lembang" Statement

Asserted by the Participants at the First Indonesian Congress of PLHAs - 2005

In the "Tretes" Statement, asserted at the Fourth National Meeting of
people living with HIV/AIDS (PLHAs) in Indonesia in February 2004,
participants at that meeting noted that, although antiretroviral
therapy (ART) was becoming more accessible, there were still many PLHAs who were
dying without receiving this treatment. Participants pledged to strengthen their
efforts to reduce the number of those dying.

Have we fulfilled this pledge? Actually the developments over the last 18 months
exceeded our hopes and expectations. In September 2004, the Indonesian
government started to provide ART free-of-charge, in sufficient quantity to meet
all the current needs. This was done in connection with the Sentani Commitment,
in which the government pledged that 10,000 PLHAs would be able to access ART in
2005. To support this commitment, the Ministry of Health (MoH) designated 25
hospitals in 17 provinces as AIDS referral hospitals, and started training
doctors and other health care workers in management of ART.

In the name of all people living with and affected by HIV/AIDS in
Indonesia, we, participants at this National Congress of PLHAs, firstly wish to
express our very sincere thanks to the Indonesian government and to the several
donor agencies who have supported this provision of ART. It has indeed become
abundantly clear that our friends are surviving longer with greater quality of
life as a result of this effort.

There have also been a number of unmistakable developments that have
resulted from the efforts of members of the network of PLHAs throughout
Indonesia. We particularly note a number of activities and initiatives,
including:

The formation of an increasing number of peer support groups for
people living with and affected by HIV/AIDS, including five groups
involving parents of young PLHAs, and several groups specifically for
women with HIV. Greater efforts are needed to set up support groups
in every town throughout the country, as well as to strengthen and
empower the existing groups.

More PLHAs have been given the opportunity for skills training,
including on management of peer support groups, and public speaking.
More than 100 PLHAs and community members have also been trained as
treatment educators, to be able to support PLHAs starting ART to
achieve high levels of adherence to their therapy.

Most of the PLHAs who are involved with the National PLHAs Network
have agreed to support the "HIV Stops Here" initiative, which is
directed to break the chain of transmission of HIV by urging all
PLHAs to avoid infecting others.

The principle of Greater Involvement of PLHAs (GIPA) in the response
to HIV/AIDS has been increasingly respected by members of government,
particularly the AIDS Commissions in a number of provinces, and by a
number of other agencies at the national level.

More people living with and affected by HIV/AIDS are speaking openly,
including on TV and radio. This is proven effective in raising the
awareness of the public to the dangers of HIV/AIDS, to encourage them
to consider volunteering for an HIV test.

However, much remains to be done:

Although the number of AIDS Referral Hospitals is being increased to
75, most PLHAs living outside the main towns still find it difficult
to access ART. While there is a mechanism for community health
centres to be designated as satellites of referral hospitals, the
implementation procedure is not yet clear, and currently less than
five community health centres are able to offer ART.

Currently less than 10 per cent of those who are thought to be
infected by HIV in Indonesia know their status. Only those who know
that they are HIV-infected can obtain the benefits of ART. VCT
services must be expanded and promoted so that those who have been at
risk can be encouraged and facilitated to be tested.

MoH admits that "Stigmatization by health care workers...towards
PLHAs has not yet been addressed and even [in several AIDS referral
hospitals], stigma remains strong." More determined and clear efforts
are needed to address stigma and discrimination, as well as loss of
confidentiality. These together have been proved to be barriers for
people considering VCT as well as for PLHAs in seeking health
services including ART.

Provision of antiretrovirals (including for babies and children, plus
second line drugs) and medicines for opportunistic infections must be
guaranteed. Since the start of ART services by the MoH, several times
there has been panic among PLHAs taking ART because of lack of stock
of several of the drugs. Efforts to ensure adherence to therapy are
meaningless if the drugs suddenly become unavailable.

An increasing number of PLHAs are also infected by viral hepatitis.
Co-infection with hepatitis and HIV greatly complicates management of
ART, and hepatitis treatment is unaffordable. Internists, especially
those specializing in liver infection, must be encouraged to become
more involved in treating PLHAs, and efforts must be made to ease
access to hepatitis treatment.

The cause of death of most PLHAs globally is tuberculosis (TB), and
it is clear that the situation in Indonesia is similar. Health care
workers who handle TB, especially in community health centres, must
take a more critical approach in considering whether TB patients
might also be infected with HIV.

An increasing number of active injecting drugs users (IDUs) are now
infected with HIV. Adherence to ART among these PLHAs always raises
challenges. One solution is the provision of methadone for such
people as substitution therapy. However, currently there are only 2 3
methadone clinics in Indonesia; dozens of such clinics are required
in almost every town in Indonesia.

We urge:

The community, especially peer support groups, be involved fully and
meaningfully as equal partners in planning and implementing all
programs directed to provision of health and welfare services for
PLHAs.

VCT programs must be expanded and promoted, with quality services
provided in accordance with procedures, that is with comprehensive
counselling, together with informed consent, and with confidentiality
guaranteed.

Health service programs for PLHAs, including ART and for all
HIV-related infections, must be comprehensively monitored and
evaluated through a process that involves PLHAs as recipients of the
services. The results of this monitoring and evaluation must be
reported openly, and actions required to address the problems found
must also be implemented.

Harm reduction services, including treatment for addiction, needle
exchange and methadone substitution, must be implemented and made
much more accessible in all parts of Indonesia facing an HIV epidemic
as a result of injecting drug use.

The problems of HIV infection in prisons must be addressed more
forcefully. Programs to reduce the risk of infection to those
incarcerated must be put in place, and health services for those who
fall sick must be improved, with consideration for more cooperation
between prisons and police hospitals.

Prevention of mother-to-child transmission of HIV (PMTCT) must
receive more serious attention, including special training for
community health centre doctors and for midwives, to reduce the
number of babies born with HIV. PMTCT services must be made more
affordable, so that they are accessible to all.

Government budget for ART subsidy must be continued, to assure
provision for 2006 and subsequent years.

AIDS Commissions at district and municipality levels must be
strengthened so that the can play an optimal role in HIV/AIDS control
efforts in their areas, including care, support and treatment for
PLHAs. AIDS Commissions at every level must include existing peer
support groups in their areas as members, with PLHAs provided with
employment in the commission secretariat at every level.

Guidelines and regulations related to health services must be
implemented, enforced and evaluated.

The system to reduce payment for health for poor families must be
improved. The government must address much greater attention to the
problems experienced by the poor in obtaining these reductions.

Cross posted:ITPC
Forwarded by :
-------------------------
A.SANKAR, Executive Director
EMPOWER. 107J / 133E, Millerpuram
TUTICORIN-628 008 INDIA