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AIDSTAR-One | CASE STUDY SERIES                                                                                                        August 2011

STIGMA Foundation
Empowering Drug Users to Prevent HIV in Indonesia



                                                     T
                                                            he taxi twists and turns its way through progressively
                                                            narrowing streets and alleys in South Jakarta. It finally
                                                            arrives—after several stops to ask directions and a
                                                     couple of wrong turns—in front a six-foot high, unmarked, solid
                                                     metal green gate. From the outside, it looks just like any other
                                                     residential compound in the lower middle class neighborhood
                                                     where houses, laundries, beauty salons, small restaurants, and
                                        Kai Spratt




                                                     kiosks selling sundries and cell phones take up every square
A stone in the front yard of the                     inch of space along the street. Beyond the anonymous gate lies
STIGMA office.                                       a small garden where, among the grass and a few flowers, there
                                                     is a large brown stone painted in bright yellow with the words
                                                     “STIGMA Garden.” Inside the compound is a small one-story
                                                     yellow house; a bulletin board nailed onto one of the compound
                                                     walls displays posters on the rights of people who inject drugs
                                                     (PWID)—basic human rights and the right to HIV prevention
                                                     services. Shoes, sandals, and flip-flops are lined up neatly at the
                                                     front door, and from within, rock music beckons visitors.

                                                     Welcome to the STIGMA Foundation (SF). This nongovernmental
                                                     organization (NGO), staffed by former injecting drug users and people
                                                     living with HIV (PLHIV), focuses on helping PWID—both men and
                                                     women—live safer, healthier, more productive lives through community
                                                     organizing, advocacy, and networking. The foundation’s staff and
                                                     volunteer educators visit neighborhoods where male and female PWID
                                                     congregate to offer information on preventing HIV and a needle and
                                                     syringe exchange service, and to provide referrals for health care.
                                                     STIGMA also works with local police and health care workers, and
By Kai Spratt
                                                     consults with government organizations, to ensure that PWID receive
                                                     adequate services, participate in decisions that affect them, and are
                                                     accorded their basic human rights.

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AIDSTAR-One | CASE STUDY SERIES



  PEPFAR GENDER
                                    Background
  STRATEGIES                        While the overall national prevalence among adults 15 to 49 years of
  ADDRESSED BY THE                  age remains quite low at 0.2 percent, the prevalence of HIV among
  STIGMA FOUNDATION                 most-at-risk populations, such as PWID, sex workers, transgender
                                    persons (waria), and men who have sex with men are disturbingly
  •	 Increasing gender equity in    high (Joint U.N. Programme on HIV/AIDS [UNAIDS] 2009b). Of the
     HIV programs and services      estimated 333,200 PLHIV in Indonesia, 42.2 percent are PWID (Needle
                                    and Zhao 2010). According to a 2010 unpublished report by AusAID,
  •	 Reducing violence and          HIV prevalence in Indonesia among all PWID (male and female) is
     coercion                       40 percent and 20 percent among female sex workers in Bali (Block
  •	 Increasing legal protection.
                                    2010). One factor contributing to the high HIV prevalence among
                                    these vulnerable populations is inconsistent condom use among
                                    male PWID, especially with sex workers and with long-term partners.
                                    Because PWID often have multiple paid and unpaid sex partners, the
                                    potential for HIV transmission to spread rapidly within social and sexual
                                    networks of PWID is very high (Iskandar et al. 2010).

                                    Indonesia’s national response to HIV has focused on the most-at-
                                    risk populations. The government has scaled up programs to reach
                                    PWID to address the preponderance of HIV infections in this group.
                                    An important, though controversial, element of the national response
                                    is the harm reduction approach, which includes access to accurate
                                    information; distribution of clean needles, syringes, and male condoms;
                                    access to primary health care; and access to voluntary counseling and
                                    testing. By the end of 2009, harm reduction programs were available
                                    around the country in 120 sites including public health centers,
                                    correctional institutions, and NGOs. PWID who use heroin and want
                                    methadone maintenance therapy or other oral substation therapies
                                    such as buprenorphine alone or in combination with naloxone can
                                    receive services in designated health centers, hospitals, and prisons
                                    in each province (National AIDS Commission Republic of Indonesia
                                    2009). However, new efforts are needed to include the intimate
                                    partners of high-risk individuals as partners represent a growing
                                    proportion of newly infected individuals (UNAIDS 2009a).



                                    Gender Norms in Indonesia
                                    The Indonesian Constitution gives equality to all citizens, and
                                    legislation protects women’s civil liberty and freedom of movement.
                                    Local systems of adat, or traditional law, dictate gender-specific rights
                                    and obligations. In practice, gender norms in Indonesia vary by region,

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location (urban or rural), religion, socioeconomic            between traditional and religious interpretations of
status, and ethnic group, as does the prevalence of           the laws, which seek to further restrict women’s
early marriage, polygamy, female genital mutilation           and men’s roles, and the influences of rapid
(though this was banned in 2006), and contract                modernization and globalization, especially in the
marriages (Jacubowski 2008).                                  large urban areas, has sparked intense public
                                                              debate on the role of the state in the areas of
During the Suharto “New Order” era (1965 to                   sexuality and morality (Blackwood 2007; Rinaldo
1998) the state played a large role in defining               2008).
the appropriate roles and responsibilities of men
and women of all classes. The main elements of                Indonesia’s 2004 Domestic Violence Law (Law No.
this gender ideology are “housewifization” which              23/2004) prohibits physical, sexual, or psychological
promoted women’s “natural” roles as wives and                 violence and neglect or abandonment within a
mothers. “The bapak (father, man) is considered               household occurring among legally married couples
as the elementary source of power, whereas the                but does not protect cohabiting or unmarried
ibu (wife) was one of the mediums of this power”              couples. Domestic violence, though believed to be
(Jacubowski 2008, 90). A man is expected to                   fairly common, is considered a private matter, and
be the primary breadwinner, providing financial               incidents are rarely reported.
support for his wife and children and making
decisions in the interest of his family’s welfare.

Indonesia has no national laws proscribing
                                                              The Policy Environment
homosexuality, transgender behavior, or sex
                                                              Indonesia is a major route for drug trafficking
acts between adults of the same sex. However,
                                                              in Asia, and drug use has increased steadily in
discrimination against sexual minorities is pervasive
                                                              Indonesia, especially in large urban areas like
and some local governments, citing religious
                                                              Jakarta and Bandung, and in West Java and Bali.
doctrine, have instigated local laws (perdahs) that
                                                              Policies related to drug use in Indonesia have
punish same-sex sexual relationships and sexual
                                                              traditionally been framed as a war on drugs with a
contact between unmarried persons (Blackwood
                                                              “zero tolerance” approach. Drug use is criminalized
2007). A few local governments require that all
                                                              and in some cases punishable by death. Male and
women, Muslim or not, wear a jilbab (a long and
                                                              female drug users are subject to harassment by
loose-fit coat or garment) to receive the services
                                                              police and to arrest and imprisonment in extremely
of the village government. There are indications,
                                                              harsh conditions.
however, that while piety and religiosity is
increasing in Indonesia, a populist movement to               As a country dealing with a dual epidemic—HIV
formalize these religious laws within the legal               and drug abuse—Indonesian policymakers and
system peaked around 2004 and is waning in                    program implementers have had to walk a fine
appeal (Bush 2008).                                           line between undermining drug enforcement
                                                              authorities, who view any support to drug users as
Recent government investment in infrastructure has            criminal and encouraging drug use, and the public
increased girls’ access to education and women’s              health community, which sees harm reduction as
participation in the political and public spheres,            a strategy to slow the escalating HIV prevalence
as well as in the economy, albeit in lower-paying             among PWID. In 2003, the government instituted
and lower-status occupations than men. Tensions               the Harm Reduction Strategy, which seeks to

                                                        STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia   3
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reduce transmission of HIV among PWID, and from
PWID to the general public, by providing clean
drug injecting equipment and access to health care
and HIV testing and counseling. A law passed in
2009 sought to mitigate the risks of drug addiction
and HIV by stipulating that identified drug users
be sent to rehabilitation centers during the pretrial
period, which can last for three to six months; if
found guilty, the drug user may be sent to prison or
remain in the center for a year or more for further
rehabilitation (National AIDS Commission Republic




                                                                                                               Kai Spratt
of Indonesia 2009). However, the implementation
of the Harm Reduction Strategy remains limited
and PWID continue to be arrested and sometimes          Nongovernmental organization and public health staff
                                                        doing joint work planning. Jakarta, July 2010.
charged with trafficking; as for the 2009 law, there
are no regulations, standards for treatment or care,
or support programs for “rehabilitated” PWID when
they return to their communities.                       activities, both among PWID and government and
                                                        nongovernment stakeholders.

Reaching PWID with HIV programs remains a               SF grew out of a support group for PWID living
challenge as these individuals fear being arrested if   with or affected by HIV set up in 2001 at the
they interact with NGO outreach workers.                Fatmawati Hospital in Jakarta. Initially, SF
                                                        developed informational material about HIV and
                                                        other health issues for use by support group
Program Description                                     members. In 2004, SF was officially recognized
                                                        as an NGO and was funded by the Australian
SF is a community-based organization located            Agency for International Development to begin
in Jakarta whose workers are former drug users          harm reduction activities in South Jakarta. In
and PLHIV. The main goal is to empower male             subsequent years, SF received funding from the
and female drug users through community                 Hivos Foundation (the Netherlands) and the U.S.-
organizing, advocacy, and networking (Wulandari         based Open Society Institute to expand outreach
2010). The foundation’s ultimate vision is to           in HIV prevention and harm reduction.
empower drug users through 1) a dependable
livelihood, 2) access to harm reduction resources       SF began with a staff of six and a small number of
and health services, 3) a critical awareness of         member volunteers, working out of a small house
human and legal rights for PWID, 4) participation       that functioned as an office and drop-in center.
in decision making at the community, district,          Beginning in 2005, SF trained outreach workers
and higher levels, and 5) providing input and           to visit “hot spots,” or places where PWID meet
influence on decisions at all government levels         to obtain or use drugs, and provide information
that affect PWID. To that end, SF conducts              about HIV prevention, offer needle and syringe
outreach, advocacy, networking, and educational         exchange programs (NSPs), and give referrals to



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health services. By mid-2010, SF had 22 full-time         •	 	ntervention in cases where a person who injects
                                                             I
staff members.                                               drugs is harassed or harmed

Over time, outreach on legal and human rights             •	 	 outine meetings with health care workers
                                                             R
of PWID became an increasingly important                     and police staff to resolve instances of stigma,
component of SF’s work. PWID endure widespread               discrimination, or abuse in the clinic and in the
stigma, discrimination, harassment, and violence             community
from communities, the police, and prison
authorities. Most PWID know little about available        •	 	 dvocacy when a person who injects drugs is
                                                             A
legal protection or how to address and prevent               arrested. When a person who injects drugs is
violence. SF collaborates with the Community Legal           detained, a network of former PWID contact SF.
Aid Organization in Jakarta, which provides lawyers          SF staff then contact the family of the person
and staff pro bono to help PWID who have been                arrested to find out where the person is being
arrested and detained.                                       detained and whether he or she is living with
                                                             HIV and on antiretroviral therapy (ART). If so, SF
SF’s advocacy activities include the following:              will advocate with the police to ensure ART is
                                                             available during the pretrial detention, which can
•	 Training and outreach to change community                 last as long as six months.
   perceptions of PWID as criminals and increase
   understanding of the injustice that PWID               Collaboration with government and
   experience                                             international agencies: The Indonesian
                                                          Government has invited SF to participate in
     The idea of human rights of                          consultations, including those on revising the
                                                          2009 Narcotics Law, which includes, among other
     drug users is not well accepted
                                                          provisions, an option for sentencing PWID to a
     by some people in the                                rehabilitation center. However, SF staff feel that their
     communities where we work                            participation in events with government, international
     and live because they refuse                         agencies, and other NGOs is often not meaningful.
                                                          One staff member said, “We are treated like dolls.
     to admit they have [PWID].                           We have no real control over decision making on
     People in the community say                          issues related to our lives.” SF’s position is that
     “when [PWID] begin to behave                         PWID must demand their rights and demand greater
                                                          involvement of people living with or affected by HIV.
     in the community, then we can
                                                          This rights-based approach is not always welcomed
     discuss human rights. Right                          by government staff who are not accustomed
     now [we] don’t talk about                            to working in partnership with marginalized
     human rights; right now we                           communities, or by other NGOs whose approach to
                                                          government is less confrontational.
     have to worry about eating
     tomorrow.”                                           Networking: SF collaborates with other
                                                          NGOs that provide programs and services for
                       –STIGMA Director
                                                          people at risk of exposure to or affected by



                                                    STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia   5
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HIV. For example, SF works with the Ikatan               issues, HIV, laws, human rights, gender rights, and
Perempuan Positif Indonesia (IPPI; National              citizen’s rights (SF n.d.).
Positive Women’s Network) on policy advocacy for
women, particularly women living with HIV. IPPI          Collaboration with health center staff:
builds leadership skills among women advocates           With decentralization, lower-level (provincial,
who are living with HIV to push for changes in           district, and municipal) governments have taken
policies that are detrimental to women. Such laws        more responsibility for budgeting, implementing,
include the Law on Population, which allows only         and managing health services. Rather than NGOs
married women to obtain services for sexual and          providing outreach, NSP, and harm reduction
reproductive health, and the Law on Domestic             services, local health clinic staff are expected
Violence, which protects married women but not           to take on these services. This means that
unmarried, cohabiting women. SF also has strong          government health workers must provide the
ties to the Community Legal Aid Organization,            majority of services for HIV prevention, care, and
which provides legal services for arrested and           treatment.
incarcerated PWID. This assistance, which begins
following arrest and continues throughout the trial,     In 2005, when SF began its NSP and harm
is an important collaboration because SF has no          reduction programs, the foundation worked with
funds for providing legal services to its members.       health care staff to increase their awareness of the

Raising awareness: SF recognizes that drug
users are mainly passive recipients of services              I’m not sure if the law requires
provided by harm reduction organizations and                 I tell a woman if her husband
are not expected to think critically or participate in       is HIV-positive. Men won’t tell
discussion about the challenges they face or the
services they receive. SF leads several workshops
                                                             their wives or fiancées they
every month for PWID so as to introduce them to              are HIV-positive. Some [PWID]
social analysis, including discussion on gender              find it difficult to find a wife.
norms, Indonesia’s narcotics policies, and human
                                                             It’s hard because he is a drug
rights. SF staff also note that harm reduction
programs are designed for men, who constitute the            user; if she knew he was HIV-
majority of PWID, but the program fails to address           positive she wouldn’t agree to
the concerns of women who inject drugs, such as              the marriage. So the families
family planning, gender-based violence (GBV), and
reproductive health. SF is planning to invite other
                                                             don’t tell the brides. Being a
NGOs to discussion sessions about human rights               [person who injects drugs]
and gender perspectives as a way to increase                 and being HIV-positive and
awareness of the needs of women who inject drugs.
                                                             not being married—it’s a triple
                                                             stigma men want to avoid.
Since 2005, SF has published a newsletter, Lingua,
that is a forum for delivering information in simple                        –A doctor at a health
language for the PWID community, as well as
for health care centers and other NGOs on drug
                                                                                     care center


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health issues affecting PWID and the benefits of               have heard stories about women having to agree
the NSP program. In 2010, SF began collaborating               to sterilization when they try to obtain ART, or that
with a number of health centers as part of a                   staff in programs for prevention of mother-to-child
pilot program to integrate NSP with methadone                  transmission (PMTCT) will tell women not to have
maintenance therapy. In the near future, NSP                   any more children.
programs will operate mainly under the supervision
of local health centers; the role of NGOs like SF will         Recruiting women’s participation: To
be to monitor the quality of these services and to             increase recruitment of women who inject drugs,
continue referring or accompanying PWID who are                SF outreach workers spend one day per week
seeking these services. SF currently collaborates              looking only for these women, including waiting
very closely with health centers in its catchment              in networking spots to identify new or unknown
area and meets regularly with center directors                 women or girls. The workers ask male and female
to coordinate referrals and activities identified in           PWID to invite female friends who inject drugs to
each year’s workplan. This long experience with                the SF outreach programs or office, and encourage
partnerships may ease SF’s transition from an                  men who inject drugs to send their partners to SF
NGO that provides services to one that provides                or other NGOs for support or referral to services.
outreach, referrals, and monitoring.                           If a female partner is reluctant to seek services,
                                                               an SF worker tries to visit her at home, sometimes
                                                               talking with in-laws or family to persuade them to

Gender-Related Work                                            allow the woman to talk to an outreach worker or to
                                                               allow someone from the SF team to accompany her
                                                               to obtain services.
SF outreach workers realized very early that while
their work mainly reached men who inject drugs,                Conducting research: Research on women,
women who inject drugs also existed; many of                   especially those who inject drugs, is very limited
the staff and volunteers were women. As of 2009,               in Indonesia. There is little information about the
only 200 of the 3,000 PWID that SF had worked                  constraints that affect women’s access to services
with were women and not all of these women were                for needle exchange, drug substitution therapy, or
accessing harm reduction programs or health                    rehabilitation services—national data about use of
services. This was for a variety of reasons, many              these services are not disaggregated by gender.
having to do with cultural norms that restrict women           There is no information on GBV against women who
to the household-based roles of wife and mother.               inject drugs and little information on the physical
Women also have less education than men, and                   effects associated with ART, the ability of women
therefore less access to information about HIV                 who inject drugs to pay for ART services, or ways to
and reproductive health, or about such services                address negative perceptions against women who
as NSP or methadone maintenance for PWID.                      inject drugs among some health care providers.
Women’s fear of stigma, family disapproval, or                 In 2009, SF began a small qualitative study to
lack of confidentiality may also keep them from                understand the health service and information
seeking services. Many women who inject drugs                  needs of women who inject drugs. SF plans to
have experienced sexual harassment or violence                 use the study, which is still underway, to advocate
from police and thus may not seek NGO services                 with stakeholder and donor agencies on ways
for fear that police will arrest both the NGO workers          to incorporate a gender perspective within harm
and their clients who inject drugs. Some PWID                  reduction programs.


                                                         STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia   7
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                                                                will refer women to one of several NGOs that provide
                                                                services for them; the government does not provide
                                                                services for survivors of violence, including those
                                                                who face violence during detention.

                                                                SF is also concerned that women who inject drugs
                                                                may be at risk of GBV when they are arrested.
                                                                They may be frisked by male police and may be
                                                                forced to have sex in prison, or during arrest, on
                                                                the promise of being released from jail. Though
                                                                informants suspected that GBV against women might
                                                   Kai Spratt
                                                                be common, they added that women were reluctant
                                                                to share their stories because of fear or shame, or
STIGMA Foundation office. July 2010.                            because they worry about being victimized again if
                                                                they press charges and the case is investigated. It is
SF has also started a new newsletter, Angels,                   less well-known to what extent men who inject drugs
that focuses on women who inject drugs and their                experience GBV. SF informants reported that men
concerns. In addition, SF produces leaflets on                  had told them about severe physical abuse—even
specific topics such as PMTCT, the impact of ART                torture—while in detention or prison.
on women, legal rights during arrest and detention,
and actions that women can take if they are facing or
experiencing violence.                                          What Worked Well
Institutionalizing gender considerations                        Introducing the concept of human rights
within the organization: SF is seeking                          for PWID: SF’s advocacy work is breaking
to build gender equity into its organizational                  new ground by promoting the basic rights of this
framework, but has yet to benefit from ongoing                  marginalized group and developing approaches for
and focused technical assistance on this issue.                 helping PWID protect themselves and their sexual
Some staff participated in four training sessions               partners from HIV. SF is helping to bridge the
on organizational capacity building, provided by an             “justice gap” by educating communities about PWID
international consultant, that included a gender and            while building the capacity of PWID to advocate for
rights component, but the training has not been                 themselves.
repeated. SF’s internal policies support equitable
employment through maternity policies that specify              Recognizing the importance of gender
the rights of pregnant women and their husbands, as             equality: While the donors who support SF
well as recruitment of female staff.                            promote gender equality and equity, none have
                                                                required that SF integrate gender equality into its
Referring cases of violence: Women who                          work or provide ongoing capacity building to do so.
inject drugs commonly experience GBV. Though                    SF learned from its experience in the community
GBV is illegal, communities where SF works see it               that harm reduction programs were too male-
as a “normal part of being a woman,” and informants             focused and the data collected by these programs
from SF felt that few people in the community would             were too general to provide insight into the reasons
intervene to address violence. In cases of GBV, SF              why female and male PWID were not accessing


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services provided by NGOs or by the local health              a focus on distributing needles and syringes driven
centers. With very few resources and little technical         by the requirement to “hit targets—numbers not
assistance, SF has recognized and is trying to meet           quality.” SF expressed that other NGOs deliver what
some of the needs of women who inject drugs.                  donors want, not based on the NGO’s own vision,
Where many programs focusing on PWID are                      or what is needed by the community of PWID.
gender-blind, SF is “gender-aware” and is trying              SF staff members recognize that their advocacy
to integrate gender strategies such as equity and             on behalf of PWID has caused some friction with
access to programs and services and increasing                other NGOs working with PWID and with some
legal rights and protections of all PWID.                     in the government. Others think that SF “is too
                                                              vocal.” In addition, SF has few partnerships with
                                                              non-HIV-related women’s organizations because of
                                                              stigma against PWID. As a result, SF’s network of
Challenges                                                    collaborating and partnering NGOs is limited.

Aligning funding with strategic planning:                     Need for increased focus on gender: When
SF is eager to expand its programming beyond                  SF staff discuss gender issues, they generally
Jakarta and continue its organizational capacity              mean issues that affect women. That gender norms
building and staff development, but its limited               also influence the vulnerability of men who inject
funding base has hindered this growth. Most donors            drugs to HIV infection was a new concept. SF’s
fund SF on a year-to-year basis. Longer funding               training in social and critical analysis on PWID
cycles would make strategic planning and internal             and human rights does not specifically include
capacity building goals easier to implement and               gender analysis. Yet a gender analysis, which
achieve. The challenge for SF (and many other                 could examine how being male or female affects
NGOs) is to identify donors willing to commit to              the experience of PWID, might be a way to further
longer term funding.                                          empower all PWID. For example, understanding
                                                              how GBV influences service uptake by women who
Policy changes: The policy-related shift of                   inject drugs might enhance the effectiveness of
services for PWID from NGOs to health centers                 SF’s outreach strategies and activities.
may have a negative impact on SF’s mission and
funding. SF will evolve from a role as service                Limited research capacity: SF staff
provider for PWID to a focus on referring PWID                have little experience in either qualitative or
to health centers for treatment, and monitoring               quantitative research. Their initiative to conduct
the care PWID receive. It may be difficult to                 qualitative research with women who inject drugs
identify donors to support this new role. SF staff            is commendable, but there is a possibility that
are considering strategies to generate their own              the results may not be of sufficient quality to
funding, from launching business ventures to                  significantly inform their program approaches.
serving as expert consultants on the needs of
PWID.                                                         Hard-to-reach groups: SF staff recognize that
                                                              some groups of PWID remain beyond the reach
Limited partnerships: SF is committed to                      of HIV prevention programs by SF, other NGOs,
addressing the cultural and structural barriers that          and health center staff. SF staff report that more
PWID face. Its primary roles are advocacy and                 men who have sex with men and sex workers are
activism on the issue of harm reduction far beyond            becoming injecting drug users. Positive prevention


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programs to help people who inject drugs and are        supported by dedicated funding—to make gender
living with HIV prevent transmission to their sexual    integration meaningful and measureable are
partners are almost non-existent. The foundation’s      lacking. Gender technical assistance that builds
limited funding makes it difficult to develop           the capacity of the donors and especially program
programs with these populations.                        implementers—and goes beyond a one-off
                                                        “gender training”—is greatly needed. The senior
                                                        leadership within SF is sensitive to gender norms
Recommendations                                         and how access to services is impacted by those
                                                        norms. The entire staff would benefit from gender
Seek organization capacity building                     sensitivity training and ongoing technical assistance
assistance: SF would greatly benefit from               to integrate gender throughout their program goals
technical assistance in organizational capacity         and activities.
building, gender integration, and business
development; staff are very motivated and cohesive,
and investing in SF may substantially strengthen        Future Programming
the long-term prospects for the organization and the
PWID to whom it is most profoundly committed. SF        In the last year, SF has initiated a series of
should consider support from groups such as the         organizational capacity building activities.
U.K.’s Voluntary Service Overseas, the Asia/U.S.        Managers identified data collection as an area for
Exchange Programs, or local universities for no-        improvement. SF’s data collection systems, while
cost technical assistance in areas related to health,   fulfilling the requirements of its donors (essentially,
HIV, participation and governance, and secure           the number of contacts, disaggregated by sex), are
livelihoods, or seek support directly from its donors   inadequate for documenting and monitoring the
for capacity building in areas beyond HIV-related       results of its activities. SF’s strategic plan includes
harm reduction.                                         developing a monitoring and evaluation framework,
                                                        and it has hired a staff person for this role. SF is
Strengthen advocacy and policy                          also improving and expanding its communication
development skills: SF plays an important               products, such as improving and updating its
role in holding the government accountable for          website and newsletter, to increase SF’s credibility
providing the services and protections included in      and outreach to PWID and the larger community.
policies and laws. However, SF would benefit from
training and mentoring on how to more effectively       By developing strategies to reach women who inject
challenge, and more effectively collaborate with,       drugs, conducting research to determine the health
government and other NGOs.                              and information needs of these women in Jakarta,
                                                        and trying to bring more awareness about gender
Conduct dedicated gender capacity                       issues into its work with PWID and its staff, SF is
building: Despite stated commitments to gender          charting an important direction for programs for
equality and equity, it is surprising that none of      PWID in Indonesia and beyond. But SF has not yet
the major funders and donors in Indonesia require       made the connection between the human rights
their programs to integrate gender sensitivity or       abuse of PWID and women’s equality and equity
strategies into their HIV program approaches—           more generally. GBV against PWID is so pervasive
beyond general support of “gender mainstreaming”        that integrating GBV strategies and training into
and sex disaggregated data. Defined activities—         staff and volunteer development and community


10	AIDSTAR-One | August 2011
AIDSTAR-One | CASE STUDY SERIES


outreach programs would provide an opportunity                   http://csis.org/files/attachments/100610_Rich_Needle_
to find common ground with the larger community.                 Presentation.pdf (accessed August 2010)
Introducing the link between human rights and
                                                                 Rinaldo, R. 2008. Muslim Women, Middle Class Habitus,
gender norms to larger structural barriers, such as
                                                                 and Modernity in Indonesia. Contemporary Islam 2:23–
poverty, lack of economic opportunity, and lack of               39.
accountability by government, would benefit not
only PWID but also the communities in which they                 STIGMA Foundation. n.d. Newsletter Lingua dan Bidadari.
live. g                                                          http://stigma-foundation.blogspot.com/2010/05/newsletter-
                                                                 lingua-dan-bidadari.html (accessed February 2011)

                                                                 UNAIDS. 2009a. HIV Transmission in Intimate Partner
REFERENCES                                                       Relationships in Asia. Geneva: UNAIDS.
Blackwood, E. 2007. Regulation of Sexuality in Indonesian
                                                                 UNAIDS. 2009b. “Indonesia.” Available at www.unaids.
Discourse: Normative Gender, Criminal Law and Shifting
                                                                 org/en/CountryResponses/Countries/indonesia.asp
Strategies of Control. Culture, Health & Sexuality
                                                                 (accessed August 2010)
9(3):293–307.
                                                                 Wulandari, S. (STIGMA Foundation Founder and
Block, J. (IDU Advisor, HIV Cooperation Project
                                                                 Director). Interview. July 2010.
for Indonesia/Australian Agency for International
Development). Interview. July 2010.
                                                                 ACKNOWLEDGMENTS
Bush, R. 2008. “Regional Sharia Regulations in
Indonesia: Anomaly or Symptom?” Expressing Islam:                AIDSTAR-One would like to thank the staff and volunteers
Religious Life and Politics in Indonesia. Edited by G. Fealy     at the STIGMA Foundation for their willingness to share
and S. White. Singapore: Institute of Southeast Asian            their stories, insights, and dreams. Thanks to Dr. James
Studies, 174-191.                                                Block, Injecting Drug Use Advisor to the AusAID funded
                                                                 HIV Cooperation Program for Indonesia (HCP), for sharing
Iskandar, S., D. Basar, T. Hidayat, I. M. P. Siregar, L.         his extensive knowledge of and data on the injecting
Pinxten, R. van Creve, et al. 2010. High Risk Behavior for       drug use and HIV situation in Indonesia. Thanks also
HIV Transmission Among Former Injecting Drug Users: A            to the USAID/Indonesia team, especially Irene Koek,
Survey from Indonesia. BMC Public Health 10:472.                 Director, Office of Health, and Ratna Kurniawati, HIV/
                                                                 AIDS Program Advisor, for permission to conduct the
Jacubowski, N. 2008. Marriage is Not a Safe Place:               case study. AIDSTAR-One would also like to acknowledge
Heterosexual Marriage and HIV-related Vulnerability in           the PEPFAR Gender Technical Working Group for their
Indonesia. Culture, Health & Sexuality 10(1):87–97.              support and careful review of this case study.

National AIDS Commission Republic of Indonesia. 2009.
Republic of Indonesia Country Report on the Follow up to         RECOMMENDED CITATION
the Declaration of Commitment On HIV/AIDS (UNGASS).
Reporting Period 2008 – 2009. Available at www.icaso.            Spratt, Kai. 2010. STIGMA Foundation: Empowering Drug
org/resources/2010_indonesia_2010_country_progress_              Users to Prevent HIV in Indonesia. Case Study Series.
report_en.pdf (accessed November 2010)                           Arlington, VA: USAID’s AIDS Support and Technical
                                                                 Assistance Resources, AIDSTAR-One, Task Order 1.
Needle R. H., and L. Zhao. 2010. “HIV Prevention Among
Injecting Drug Users: Strengthening U.S. Support for             Please visit www.AIDSTAR-One.com for
Core Interventions.” Presentation at CSIS Africa Program         additional AIDSTAR-One case studies and other
Roundtable, June 10, Washington, DC. Available at                HIV- and AIDS-related resources.



                                                          STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia   11
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AIDSTAR-One STIGMA Foundation in Indonesia

  • 1. AIDSTAR-One | CASE STUDY SERIES August 2011 STIGMA Foundation Empowering Drug Users to Prevent HIV in Indonesia T he taxi twists and turns its way through progressively narrowing streets and alleys in South Jakarta. It finally arrives—after several stops to ask directions and a couple of wrong turns—in front a six-foot high, unmarked, solid metal green gate. From the outside, it looks just like any other residential compound in the lower middle class neighborhood where houses, laundries, beauty salons, small restaurants, and Kai Spratt kiosks selling sundries and cell phones take up every square A stone in the front yard of the inch of space along the street. Beyond the anonymous gate lies STIGMA office. a small garden where, among the grass and a few flowers, there is a large brown stone painted in bright yellow with the words “STIGMA Garden.” Inside the compound is a small one-story yellow house; a bulletin board nailed onto one of the compound walls displays posters on the rights of people who inject drugs (PWID)—basic human rights and the right to HIV prevention services. Shoes, sandals, and flip-flops are lined up neatly at the front door, and from within, rock music beckons visitors. Welcome to the STIGMA Foundation (SF). This nongovernmental organization (NGO), staffed by former injecting drug users and people living with HIV (PLHIV), focuses on helping PWID—both men and women—live safer, healthier, more productive lives through community organizing, advocacy, and networking. The foundation’s staff and volunteer educators visit neighborhoods where male and female PWID congregate to offer information on preventing HIV and a needle and syringe exchange service, and to provide referrals for health care. STIGMA also works with local police and health care workers, and By Kai Spratt consults with government organizations, to ensure that PWID receive adequate services, participate in decisions that affect them, and are accorded their basic human rights. AIDSTAR-One John Snow, Inc. 1616 North Ft. Myer Drive, 11th Floor This publication was produced by the AIDS Support and Technical Assistance Resources Arlington, VA 22209 USA (AIDSTAR-One) Project, Sector 1, Task Order 1. Tel.: +1 703-528-7474 USAID Contract # GHH-I-00-07-00059-00, funded January 31, 2008. Fax: +1 703-528-7480 Disclaimer: The author’s views expressed in this publication do not necessarily reflect the views of the United States www.aidstar-one.com Agency for International Development or the United States Government.
  • 2. AIDSTAR-One | CASE STUDY SERIES PEPFAR GENDER Background STRATEGIES While the overall national prevalence among adults 15 to 49 years of ADDRESSED BY THE age remains quite low at 0.2 percent, the prevalence of HIV among STIGMA FOUNDATION most-at-risk populations, such as PWID, sex workers, transgender persons (waria), and men who have sex with men are disturbingly • Increasing gender equity in high (Joint U.N. Programme on HIV/AIDS [UNAIDS] 2009b). Of the HIV programs and services estimated 333,200 PLHIV in Indonesia, 42.2 percent are PWID (Needle and Zhao 2010). According to a 2010 unpublished report by AusAID, • Reducing violence and HIV prevalence in Indonesia among all PWID (male and female) is coercion 40 percent and 20 percent among female sex workers in Bali (Block • Increasing legal protection. 2010). One factor contributing to the high HIV prevalence among these vulnerable populations is inconsistent condom use among male PWID, especially with sex workers and with long-term partners. Because PWID often have multiple paid and unpaid sex partners, the potential for HIV transmission to spread rapidly within social and sexual networks of PWID is very high (Iskandar et al. 2010). Indonesia’s national response to HIV has focused on the most-at- risk populations. The government has scaled up programs to reach PWID to address the preponderance of HIV infections in this group. An important, though controversial, element of the national response is the harm reduction approach, which includes access to accurate information; distribution of clean needles, syringes, and male condoms; access to primary health care; and access to voluntary counseling and testing. By the end of 2009, harm reduction programs were available around the country in 120 sites including public health centers, correctional institutions, and NGOs. PWID who use heroin and want methadone maintenance therapy or other oral substation therapies such as buprenorphine alone or in combination with naloxone can receive services in designated health centers, hospitals, and prisons in each province (National AIDS Commission Republic of Indonesia 2009). However, new efforts are needed to include the intimate partners of high-risk individuals as partners represent a growing proportion of newly infected individuals (UNAIDS 2009a). Gender Norms in Indonesia The Indonesian Constitution gives equality to all citizens, and legislation protects women’s civil liberty and freedom of movement. Local systems of adat, or traditional law, dictate gender-specific rights and obligations. In practice, gender norms in Indonesia vary by region, 2 AIDSTAR-One | August 2011
  • 3. AIDSTAR-One | CASE STUDY SERIES location (urban or rural), religion, socioeconomic between traditional and religious interpretations of status, and ethnic group, as does the prevalence of the laws, which seek to further restrict women’s early marriage, polygamy, female genital mutilation and men’s roles, and the influences of rapid (though this was banned in 2006), and contract modernization and globalization, especially in the marriages (Jacubowski 2008). large urban areas, has sparked intense public debate on the role of the state in the areas of During the Suharto “New Order” era (1965 to sexuality and morality (Blackwood 2007; Rinaldo 1998) the state played a large role in defining 2008). the appropriate roles and responsibilities of men and women of all classes. The main elements of Indonesia’s 2004 Domestic Violence Law (Law No. this gender ideology are “housewifization” which 23/2004) prohibits physical, sexual, or psychological promoted women’s “natural” roles as wives and violence and neglect or abandonment within a mothers. “The bapak (father, man) is considered household occurring among legally married couples as the elementary source of power, whereas the but does not protect cohabiting or unmarried ibu (wife) was one of the mediums of this power” couples. Domestic violence, though believed to be (Jacubowski 2008, 90). A man is expected to fairly common, is considered a private matter, and be the primary breadwinner, providing financial incidents are rarely reported. support for his wife and children and making decisions in the interest of his family’s welfare. Indonesia has no national laws proscribing The Policy Environment homosexuality, transgender behavior, or sex Indonesia is a major route for drug trafficking acts between adults of the same sex. However, in Asia, and drug use has increased steadily in discrimination against sexual minorities is pervasive Indonesia, especially in large urban areas like and some local governments, citing religious Jakarta and Bandung, and in West Java and Bali. doctrine, have instigated local laws (perdahs) that Policies related to drug use in Indonesia have punish same-sex sexual relationships and sexual traditionally been framed as a war on drugs with a contact between unmarried persons (Blackwood “zero tolerance” approach. Drug use is criminalized 2007). A few local governments require that all and in some cases punishable by death. Male and women, Muslim or not, wear a jilbab (a long and female drug users are subject to harassment by loose-fit coat or garment) to receive the services police and to arrest and imprisonment in extremely of the village government. There are indications, harsh conditions. however, that while piety and religiosity is increasing in Indonesia, a populist movement to As a country dealing with a dual epidemic—HIV formalize these religious laws within the legal and drug abuse—Indonesian policymakers and system peaked around 2004 and is waning in program implementers have had to walk a fine appeal (Bush 2008). line between undermining drug enforcement authorities, who view any support to drug users as Recent government investment in infrastructure has criminal and encouraging drug use, and the public increased girls’ access to education and women’s health community, which sees harm reduction as participation in the political and public spheres, a strategy to slow the escalating HIV prevalence as well as in the economy, albeit in lower-paying among PWID. In 2003, the government instituted and lower-status occupations than men. Tensions the Harm Reduction Strategy, which seeks to STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia 3
  • 4. AIDSTAR-One | CASE STUDY SERIES reduce transmission of HIV among PWID, and from PWID to the general public, by providing clean drug injecting equipment and access to health care and HIV testing and counseling. A law passed in 2009 sought to mitigate the risks of drug addiction and HIV by stipulating that identified drug users be sent to rehabilitation centers during the pretrial period, which can last for three to six months; if found guilty, the drug user may be sent to prison or remain in the center for a year or more for further rehabilitation (National AIDS Commission Republic Kai Spratt of Indonesia 2009). However, the implementation of the Harm Reduction Strategy remains limited and PWID continue to be arrested and sometimes Nongovernmental organization and public health staff doing joint work planning. Jakarta, July 2010. charged with trafficking; as for the 2009 law, there are no regulations, standards for treatment or care, or support programs for “rehabilitated” PWID when they return to their communities. activities, both among PWID and government and nongovernment stakeholders. Reaching PWID with HIV programs remains a SF grew out of a support group for PWID living challenge as these individuals fear being arrested if with or affected by HIV set up in 2001 at the they interact with NGO outreach workers. Fatmawati Hospital in Jakarta. Initially, SF developed informational material about HIV and other health issues for use by support group Program Description members. In 2004, SF was officially recognized as an NGO and was funded by the Australian SF is a community-based organization located Agency for International Development to begin in Jakarta whose workers are former drug users harm reduction activities in South Jakarta. In and PLHIV. The main goal is to empower male subsequent years, SF received funding from the and female drug users through community Hivos Foundation (the Netherlands) and the U.S.- organizing, advocacy, and networking (Wulandari based Open Society Institute to expand outreach 2010). The foundation’s ultimate vision is to in HIV prevention and harm reduction. empower drug users through 1) a dependable livelihood, 2) access to harm reduction resources SF began with a staff of six and a small number of and health services, 3) a critical awareness of member volunteers, working out of a small house human and legal rights for PWID, 4) participation that functioned as an office and drop-in center. in decision making at the community, district, Beginning in 2005, SF trained outreach workers and higher levels, and 5) providing input and to visit “hot spots,” or places where PWID meet influence on decisions at all government levels to obtain or use drugs, and provide information that affect PWID. To that end, SF conducts about HIV prevention, offer needle and syringe outreach, advocacy, networking, and educational exchange programs (NSPs), and give referrals to 4 AIDSTAR-One | August 2011
  • 5. AIDSTAR-One | CASE STUDY SERIES health services. By mid-2010, SF had 22 full-time • ntervention in cases where a person who injects I staff members. drugs is harassed or harmed Over time, outreach on legal and human rights • outine meetings with health care workers R of PWID became an increasingly important and police staff to resolve instances of stigma, component of SF’s work. PWID endure widespread discrimination, or abuse in the clinic and in the stigma, discrimination, harassment, and violence community from communities, the police, and prison authorities. Most PWID know little about available • dvocacy when a person who injects drugs is A legal protection or how to address and prevent arrested. When a person who injects drugs is violence. SF collaborates with the Community Legal detained, a network of former PWID contact SF. Aid Organization in Jakarta, which provides lawyers SF staff then contact the family of the person and staff pro bono to help PWID who have been arrested to find out where the person is being arrested and detained. detained and whether he or she is living with HIV and on antiretroviral therapy (ART). If so, SF SF’s advocacy activities include the following: will advocate with the police to ensure ART is available during the pretrial detention, which can • Training and outreach to change community last as long as six months. perceptions of PWID as criminals and increase understanding of the injustice that PWID Collaboration with government and experience international agencies: The Indonesian Government has invited SF to participate in The idea of human rights of consultations, including those on revising the 2009 Narcotics Law, which includes, among other drug users is not well accepted provisions, an option for sentencing PWID to a by some people in the rehabilitation center. However, SF staff feel that their communities where we work participation in events with government, international and live because they refuse agencies, and other NGOs is often not meaningful. One staff member said, “We are treated like dolls. to admit they have [PWID]. We have no real control over decision making on People in the community say issues related to our lives.” SF’s position is that “when [PWID] begin to behave PWID must demand their rights and demand greater involvement of people living with or affected by HIV. in the community, then we can This rights-based approach is not always welcomed discuss human rights. Right by government staff who are not accustomed now [we] don’t talk about to working in partnership with marginalized human rights; right now we communities, or by other NGOs whose approach to government is less confrontational. have to worry about eating tomorrow.” Networking: SF collaborates with other NGOs that provide programs and services for –STIGMA Director people at risk of exposure to or affected by STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia 5
  • 6. AIDSTAR-One | CASE STUDY SERIES HIV. For example, SF works with the Ikatan issues, HIV, laws, human rights, gender rights, and Perempuan Positif Indonesia (IPPI; National citizen’s rights (SF n.d.). Positive Women’s Network) on policy advocacy for women, particularly women living with HIV. IPPI Collaboration with health center staff: builds leadership skills among women advocates With decentralization, lower-level (provincial, who are living with HIV to push for changes in district, and municipal) governments have taken policies that are detrimental to women. Such laws more responsibility for budgeting, implementing, include the Law on Population, which allows only and managing health services. Rather than NGOs married women to obtain services for sexual and providing outreach, NSP, and harm reduction reproductive health, and the Law on Domestic services, local health clinic staff are expected Violence, which protects married women but not to take on these services. This means that unmarried, cohabiting women. SF also has strong government health workers must provide the ties to the Community Legal Aid Organization, majority of services for HIV prevention, care, and which provides legal services for arrested and treatment. incarcerated PWID. This assistance, which begins following arrest and continues throughout the trial, In 2005, when SF began its NSP and harm is an important collaboration because SF has no reduction programs, the foundation worked with funds for providing legal services to its members. health care staff to increase their awareness of the Raising awareness: SF recognizes that drug users are mainly passive recipients of services I’m not sure if the law requires provided by harm reduction organizations and I tell a woman if her husband are not expected to think critically or participate in is HIV-positive. Men won’t tell discussion about the challenges they face or the services they receive. SF leads several workshops their wives or fiancées they every month for PWID so as to introduce them to are HIV-positive. Some [PWID] social analysis, including discussion on gender find it difficult to find a wife. norms, Indonesia’s narcotics policies, and human It’s hard because he is a drug rights. SF staff also note that harm reduction programs are designed for men, who constitute the user; if she knew he was HIV- majority of PWID, but the program fails to address positive she wouldn’t agree to the concerns of women who inject drugs, such as the marriage. So the families family planning, gender-based violence (GBV), and reproductive health. SF is planning to invite other don’t tell the brides. Being a NGOs to discussion sessions about human rights [person who injects drugs] and gender perspectives as a way to increase and being HIV-positive and awareness of the needs of women who inject drugs. not being married—it’s a triple stigma men want to avoid. Since 2005, SF has published a newsletter, Lingua, that is a forum for delivering information in simple –A doctor at a health language for the PWID community, as well as for health care centers and other NGOs on drug care center 6 AIDSTAR-One | August 2011
  • 7. AIDSTAR-One | CASE STUDY SERIES health issues affecting PWID and the benefits of have heard stories about women having to agree the NSP program. In 2010, SF began collaborating to sterilization when they try to obtain ART, or that with a number of health centers as part of a staff in programs for prevention of mother-to-child pilot program to integrate NSP with methadone transmission (PMTCT) will tell women not to have maintenance therapy. In the near future, NSP any more children. programs will operate mainly under the supervision of local health centers; the role of NGOs like SF will Recruiting women’s participation: To be to monitor the quality of these services and to increase recruitment of women who inject drugs, continue referring or accompanying PWID who are SF outreach workers spend one day per week seeking these services. SF currently collaborates looking only for these women, including waiting very closely with health centers in its catchment in networking spots to identify new or unknown area and meets regularly with center directors women or girls. The workers ask male and female to coordinate referrals and activities identified in PWID to invite female friends who inject drugs to each year’s workplan. This long experience with the SF outreach programs or office, and encourage partnerships may ease SF’s transition from an men who inject drugs to send their partners to SF NGO that provides services to one that provides or other NGOs for support or referral to services. outreach, referrals, and monitoring. If a female partner is reluctant to seek services, an SF worker tries to visit her at home, sometimes talking with in-laws or family to persuade them to Gender-Related Work allow the woman to talk to an outreach worker or to allow someone from the SF team to accompany her to obtain services. SF outreach workers realized very early that while their work mainly reached men who inject drugs, Conducting research: Research on women, women who inject drugs also existed; many of especially those who inject drugs, is very limited the staff and volunteers were women. As of 2009, in Indonesia. There is little information about the only 200 of the 3,000 PWID that SF had worked constraints that affect women’s access to services with were women and not all of these women were for needle exchange, drug substitution therapy, or accessing harm reduction programs or health rehabilitation services—national data about use of services. This was for a variety of reasons, many these services are not disaggregated by gender. having to do with cultural norms that restrict women There is no information on GBV against women who to the household-based roles of wife and mother. inject drugs and little information on the physical Women also have less education than men, and effects associated with ART, the ability of women therefore less access to information about HIV who inject drugs to pay for ART services, or ways to and reproductive health, or about such services address negative perceptions against women who as NSP or methadone maintenance for PWID. inject drugs among some health care providers. Women’s fear of stigma, family disapproval, or In 2009, SF began a small qualitative study to lack of confidentiality may also keep them from understand the health service and information seeking services. Many women who inject drugs needs of women who inject drugs. SF plans to have experienced sexual harassment or violence use the study, which is still underway, to advocate from police and thus may not seek NGO services with stakeholder and donor agencies on ways for fear that police will arrest both the NGO workers to incorporate a gender perspective within harm and their clients who inject drugs. Some PWID reduction programs. STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia 7
  • 8. AIDSTAR-One | CASE STUDY SERIES will refer women to one of several NGOs that provide services for them; the government does not provide services for survivors of violence, including those who face violence during detention. SF is also concerned that women who inject drugs may be at risk of GBV when they are arrested. They may be frisked by male police and may be forced to have sex in prison, or during arrest, on the promise of being released from jail. Though informants suspected that GBV against women might Kai Spratt be common, they added that women were reluctant to share their stories because of fear or shame, or STIGMA Foundation office. July 2010. because they worry about being victimized again if they press charges and the case is investigated. It is SF has also started a new newsletter, Angels, less well-known to what extent men who inject drugs that focuses on women who inject drugs and their experience GBV. SF informants reported that men concerns. In addition, SF produces leaflets on had told them about severe physical abuse—even specific topics such as PMTCT, the impact of ART torture—while in detention or prison. on women, legal rights during arrest and detention, and actions that women can take if they are facing or experiencing violence. What Worked Well Institutionalizing gender considerations Introducing the concept of human rights within the organization: SF is seeking for PWID: SF’s advocacy work is breaking to build gender equity into its organizational new ground by promoting the basic rights of this framework, but has yet to benefit from ongoing marginalized group and developing approaches for and focused technical assistance on this issue. helping PWID protect themselves and their sexual Some staff participated in four training sessions partners from HIV. SF is helping to bridge the on organizational capacity building, provided by an “justice gap” by educating communities about PWID international consultant, that included a gender and while building the capacity of PWID to advocate for rights component, but the training has not been themselves. repeated. SF’s internal policies support equitable employment through maternity policies that specify Recognizing the importance of gender the rights of pregnant women and their husbands, as equality: While the donors who support SF well as recruitment of female staff. promote gender equality and equity, none have required that SF integrate gender equality into its Referring cases of violence: Women who work or provide ongoing capacity building to do so. inject drugs commonly experience GBV. Though SF learned from its experience in the community GBV is illegal, communities where SF works see it that harm reduction programs were too male- as a “normal part of being a woman,” and informants focused and the data collected by these programs from SF felt that few people in the community would were too general to provide insight into the reasons intervene to address violence. In cases of GBV, SF why female and male PWID were not accessing 8 AIDSTAR-One | August 2011
  • 9. AIDSTAR-One | CASE STUDY SERIES services provided by NGOs or by the local health a focus on distributing needles and syringes driven centers. With very few resources and little technical by the requirement to “hit targets—numbers not assistance, SF has recognized and is trying to meet quality.” SF expressed that other NGOs deliver what some of the needs of women who inject drugs. donors want, not based on the NGO’s own vision, Where many programs focusing on PWID are or what is needed by the community of PWID. gender-blind, SF is “gender-aware” and is trying SF staff members recognize that their advocacy to integrate gender strategies such as equity and on behalf of PWID has caused some friction with access to programs and services and increasing other NGOs working with PWID and with some legal rights and protections of all PWID. in the government. Others think that SF “is too vocal.” In addition, SF has few partnerships with non-HIV-related women’s organizations because of stigma against PWID. As a result, SF’s network of Challenges collaborating and partnering NGOs is limited. Aligning funding with strategic planning: Need for increased focus on gender: When SF is eager to expand its programming beyond SF staff discuss gender issues, they generally Jakarta and continue its organizational capacity mean issues that affect women. That gender norms building and staff development, but its limited also influence the vulnerability of men who inject funding base has hindered this growth. Most donors drugs to HIV infection was a new concept. SF’s fund SF on a year-to-year basis. Longer funding training in social and critical analysis on PWID cycles would make strategic planning and internal and human rights does not specifically include capacity building goals easier to implement and gender analysis. Yet a gender analysis, which achieve. The challenge for SF (and many other could examine how being male or female affects NGOs) is to identify donors willing to commit to the experience of PWID, might be a way to further longer term funding. empower all PWID. For example, understanding how GBV influences service uptake by women who Policy changes: The policy-related shift of inject drugs might enhance the effectiveness of services for PWID from NGOs to health centers SF’s outreach strategies and activities. may have a negative impact on SF’s mission and funding. SF will evolve from a role as service Limited research capacity: SF staff provider for PWID to a focus on referring PWID have little experience in either qualitative or to health centers for treatment, and monitoring quantitative research. Their initiative to conduct the care PWID receive. It may be difficult to qualitative research with women who inject drugs identify donors to support this new role. SF staff is commendable, but there is a possibility that are considering strategies to generate their own the results may not be of sufficient quality to funding, from launching business ventures to significantly inform their program approaches. serving as expert consultants on the needs of PWID. Hard-to-reach groups: SF staff recognize that some groups of PWID remain beyond the reach Limited partnerships: SF is committed to of HIV prevention programs by SF, other NGOs, addressing the cultural and structural barriers that and health center staff. SF staff report that more PWID face. Its primary roles are advocacy and men who have sex with men and sex workers are activism on the issue of harm reduction far beyond becoming injecting drug users. Positive prevention STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia 9
  • 10. AIDSTAR-One | CASE STUDY SERIES programs to help people who inject drugs and are supported by dedicated funding—to make gender living with HIV prevent transmission to their sexual integration meaningful and measureable are partners are almost non-existent. The foundation’s lacking. Gender technical assistance that builds limited funding makes it difficult to develop the capacity of the donors and especially program programs with these populations. implementers—and goes beyond a one-off “gender training”—is greatly needed. The senior leadership within SF is sensitive to gender norms Recommendations and how access to services is impacted by those norms. The entire staff would benefit from gender Seek organization capacity building sensitivity training and ongoing technical assistance assistance: SF would greatly benefit from to integrate gender throughout their program goals technical assistance in organizational capacity and activities. building, gender integration, and business development; staff are very motivated and cohesive, and investing in SF may substantially strengthen Future Programming the long-term prospects for the organization and the PWID to whom it is most profoundly committed. SF In the last year, SF has initiated a series of should consider support from groups such as the organizational capacity building activities. U.K.’s Voluntary Service Overseas, the Asia/U.S. Managers identified data collection as an area for Exchange Programs, or local universities for no- improvement. SF’s data collection systems, while cost technical assistance in areas related to health, fulfilling the requirements of its donors (essentially, HIV, participation and governance, and secure the number of contacts, disaggregated by sex), are livelihoods, or seek support directly from its donors inadequate for documenting and monitoring the for capacity building in areas beyond HIV-related results of its activities. SF’s strategic plan includes harm reduction. developing a monitoring and evaluation framework, and it has hired a staff person for this role. SF is Strengthen advocacy and policy also improving and expanding its communication development skills: SF plays an important products, such as improving and updating its role in holding the government accountable for website and newsletter, to increase SF’s credibility providing the services and protections included in and outreach to PWID and the larger community. policies and laws. However, SF would benefit from training and mentoring on how to more effectively By developing strategies to reach women who inject challenge, and more effectively collaborate with, drugs, conducting research to determine the health government and other NGOs. and information needs of these women in Jakarta, and trying to bring more awareness about gender Conduct dedicated gender capacity issues into its work with PWID and its staff, SF is building: Despite stated commitments to gender charting an important direction for programs for equality and equity, it is surprising that none of PWID in Indonesia and beyond. But SF has not yet the major funders and donors in Indonesia require made the connection between the human rights their programs to integrate gender sensitivity or abuse of PWID and women’s equality and equity strategies into their HIV program approaches— more generally. GBV against PWID is so pervasive beyond general support of “gender mainstreaming” that integrating GBV strategies and training into and sex disaggregated data. Defined activities— staff and volunteer development and community 10 AIDSTAR-One | August 2011
  • 11. AIDSTAR-One | CASE STUDY SERIES outreach programs would provide an opportunity http://csis.org/files/attachments/100610_Rich_Needle_ to find common ground with the larger community. Presentation.pdf (accessed August 2010) Introducing the link between human rights and Rinaldo, R. 2008. Muslim Women, Middle Class Habitus, gender norms to larger structural barriers, such as and Modernity in Indonesia. Contemporary Islam 2:23– poverty, lack of economic opportunity, and lack of 39. accountability by government, would benefit not only PWID but also the communities in which they STIGMA Foundation. n.d. Newsletter Lingua dan Bidadari. live. g http://stigma-foundation.blogspot.com/2010/05/newsletter- lingua-dan-bidadari.html (accessed February 2011) UNAIDS. 2009a. HIV Transmission in Intimate Partner REFERENCES Relationships in Asia. Geneva: UNAIDS. Blackwood, E. 2007. Regulation of Sexuality in Indonesian UNAIDS. 2009b. “Indonesia.” Available at www.unaids. Discourse: Normative Gender, Criminal Law and Shifting org/en/CountryResponses/Countries/indonesia.asp Strategies of Control. Culture, Health & Sexuality (accessed August 2010) 9(3):293–307. Wulandari, S. (STIGMA Foundation Founder and Block, J. (IDU Advisor, HIV Cooperation Project Director). Interview. July 2010. for Indonesia/Australian Agency for International Development). Interview. July 2010. ACKNOWLEDGMENTS Bush, R. 2008. “Regional Sharia Regulations in Indonesia: Anomaly or Symptom?” Expressing Islam: AIDSTAR-One would like to thank the staff and volunteers Religious Life and Politics in Indonesia. Edited by G. Fealy at the STIGMA Foundation for their willingness to share and S. White. Singapore: Institute of Southeast Asian their stories, insights, and dreams. Thanks to Dr. James Studies, 174-191. Block, Injecting Drug Use Advisor to the AusAID funded HIV Cooperation Program for Indonesia (HCP), for sharing Iskandar, S., D. Basar, T. Hidayat, I. M. P. Siregar, L. his extensive knowledge of and data on the injecting Pinxten, R. van Creve, et al. 2010. High Risk Behavior for drug use and HIV situation in Indonesia. Thanks also HIV Transmission Among Former Injecting Drug Users: A to the USAID/Indonesia team, especially Irene Koek, Survey from Indonesia. BMC Public Health 10:472. Director, Office of Health, and Ratna Kurniawati, HIV/ AIDS Program Advisor, for permission to conduct the Jacubowski, N. 2008. Marriage is Not a Safe Place: case study. AIDSTAR-One would also like to acknowledge Heterosexual Marriage and HIV-related Vulnerability in the PEPFAR Gender Technical Working Group for their Indonesia. Culture, Health & Sexuality 10(1):87–97. support and careful review of this case study. National AIDS Commission Republic of Indonesia. 2009. Republic of Indonesia Country Report on the Follow up to RECOMMENDED CITATION the Declaration of Commitment On HIV/AIDS (UNGASS). Reporting Period 2008 – 2009. Available at www.icaso. Spratt, Kai. 2010. STIGMA Foundation: Empowering Drug org/resources/2010_indonesia_2010_country_progress_ Users to Prevent HIV in Indonesia. Case Study Series. report_en.pdf (accessed November 2010) Arlington, VA: USAID’s AIDS Support and Technical Assistance Resources, AIDSTAR-One, Task Order 1. Needle R. H., and L. Zhao. 2010. “HIV Prevention Among Injecting Drug Users: Strengthening U.S. Support for Please visit www.AIDSTAR-One.com for Core Interventions.” Presentation at CSIS Africa Program additional AIDSTAR-One case studies and other Roundtable, June 10, Washington, DC. Available at HIV- and AIDS-related resources. STIGMA Foundation: Empowering Drug Users to Prevent HIV in Indonesia 11
  • 12. AIDSTAR-One’s Case Studies provide insight into innovative HIV programs and approaches around the world. These engaging case studies are designed for HIV program planners and implementers, documenting the steps from idea to intervention and from research to practice. Please sign up at www.AIDSTAR-One.com to receive notification of HIV-related resources, including additional case studies focused on emerging issues in HIV prevention, treatment, testing and counseling, care and support, gender integration and more.