India chasing numbers-betraying-people-eng-final

Sexual minority communities in India have long faced challenges in accessing public services.
Healthcare is no exception. Given that HIV places a significant burden on male-born sexual
minorities around the world; the range of HIV-related services are supposedly one of the
interventions that specially targets them. However questions abound on the nature of these
interventions. These questions are spotlighted in this report. The document draws largely from a
series of focus group discussions with male-born sexual minorities conducted by sexual minority
activists themselves in eleven districts in Karnataka. The report sketches the barriers
encounteredinreceivingorseekingcareintermsofaccessandavailabilityofservices.Giventhat
universal health care is a human right; the lapses and violations that occur due to the lack of
access and availability are also dealt with.Attention is particularly paid to reported violations that
occur in the name of providing health services.As with all rights, ensuring non-discrimination is at
the heart of the 'right to health' as is the notion of 'agency' in this case the right to participate in
decisionmakingaroundhealthissues.Thisissueisalsoscrutinisedinthisreport.Thereportends
withasetofrecommendationsthathaveemergedfromthesexualminoritycommunitiesforpolicy
makers,health-workersandactivists.
Relooking at HIV Related Services
in Karnataka
Relooking at HIV Related Services in Karnataka
Chasing Numbers
Betraying People
Chasing Numbers
Betraying People
Chasing Numbers Betraying People
Published by
And
Karnataka Sexual Minorities Forum (KSMF)
SPT Complex, New Cotton Market
Hubli - 580 029
E-mail: ksmforum@gmail.com
www.ksmf.in

Chasing Numbers Betraying People - Relooking at HIV Related Services in Karnataka
Chasing Numbers
Betraying People
Relooking at HIV Related Services
in Karnataka

i
Acknowledgements
This report is a product of collaborative effort – with people
contributing ideas, analysis and working to bring alive the voices from
the ground. The idea of this study emerged from conversations we have
had with members of the sexual minority community, activists and
supporters at various times. The overarching concern that resonated
through these discussions was the desire to see improved HIV services,
with increase coverage and establishing equitable and quality health
services for all including male-born sexual minorities.
For these sharing and prodding I am grateful to all of them. [The
study took shape due to the groundwork of all my colleagues at Aneka
– Gurukiran Kamath, Jayalakshmi K and Elavarthi Manohar. Gurukiran
and Jayalakshmi were instrumental in painstakingly putting together
the responses that emerged from the focus group discussions. Sangama
(www.sangama.org) supported this initiative in an extremely generous
manner. They willingly prioritised this research in terms of support –
organisational and financial. To all of them a big thank you. Without
their timely help it would have been near impossible to finish this study.
Karnataka Sexual Minorities Forum (KSMF – www.ksmf.in)
played a pivotal role in connecting us to sexual minority community
members in various districts. Besides taking over all the organising and
coordination tasks involved in setting up the meetings in the various
districts; they also owned the study and are committed to following
through on the findings. I owe them a debt of gratitude for these key
findings contributions.
Many community members who embarked on this study,
becoming co-researchers and picking up skills in an amazingly short
time, need to be especially noted. They were able to conduct valuable
and interesting Focus Group Discussions (FGD) and elicit responses
Chasing Numbers Betraying People
Relooking at HIV Related Services in Karnataka
© Copyright 2011,
Published by
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ii iii
from the community members and staff. They were the ones who literally
carried out the study. My heartfelt gratitude, to each one of them.
The NGOs and Community Based Organisations (CBOs) who
openly agreed to our meeting with them, thereby facilitating the process
should be acknowledged and I am indebted to them for agreeing to
partner with us on this process. The biggest inputs were from the
respondents who revealed so many details of their lives and experiences.
This rather heavy document was translated from English to
Kannada so ably by Usha BN. It deserves a special mention as it was
this contribution that made the report accessible to many more
community members and also helped it become a tool for social action.
Gurukiran carefully read the Kannada translation, incorporated the
various changes that were made and ensured that the integrity of the
document was maintained. A job no one could have done with his
dedication. I drew on friendships old and new - Shobha Viswanathan,
read the document and gave me an encouraging response,. Vaishali
Chandra undertook the job of painstakingly proofing the document and
adding to its readability. The evocative photograph on the cover is by
Nishant Ratnakar. To all of them a big, big Thank You..
Bharthi BH willingly shared her Antiretroviral therapy (ART)
(ART) registration document which we have reproduced in this
document. We salute her courage to be open about her HIV status.
It is all these contributions that have helped shape this report.
All errors are due to my oversight.
Shubha Chacko
Aneka
Aneka (which means plural or diverse in Kannada, the local
language) fosters social justice for Sexual Minorities, Sex workers,
People Living with HIV (PLHIV) and Dalits; works on gender, health
and human rights issues; through dialogues, action research, capacity-
building, advocacy, collectivisation and alliance-building with a specific
class, gender, caste perspective.Aneka was conceptualised in July 2007
and was formally registered in January 2008.
Karnataka Sexual Minorities Forum (KSMF) is a state level
political or activist forum of sexual minorities formed in the year 2008
and registered in the year 2010 under the Karnataka Societies
Registration Act 1960. The community members from all sexual
minority identities such as kothis, hijras, double-dekkers, gays, lesbians,
bisexuals, female-to-male (FtM) and male-to-female(MtF) transgenders
and jogappas are part of the forum. The forum works for the equality,
justice and fights for the human rights of sexual minorities. Forum
advocates with NGOs, community organisation, social movements,
political organisations and government institutions. KSMF has a
presence in 22 districts of Karnataka.

iv v
Acronyms:
ICTC – Integrated Counselling and Testing Centre
ART – Antiretroviral therapy
ARVs – Antiretro Virals
FGD – Focus Group Discussion
HIV – Human Immuno Deficiency Virus
AIDS – Acquired Immuno Deficiency Syndrome
NACO – National AIDS Control Organisation
IDU – Injecting Drug User
MSM – Men who have Sex with Men
FSW – Female Sex Worker
TG – Transgender
NACP – National AIDS Control Programme
WHO – World Health Organisation
UNAIDS – Joint United Nations Programme on HIV-AIDS
NRHM – National Rural Health Mission
NGO – Non Governmental Organisation
CBO – Community Based Organisation
SM – Sexual Minority
KHPT – Karnataka Health Promotion Trust
KSAPS – Karnataka State AIDS Prevention Society
STI – Sexually Transmitted Infections
DLN – District Level Network
SACS – State Aids Control Society
SLN – State Level Network
Kothi – Kothis are feminine homosexual/bisexual men. They
are from an economically disadvantagd background.
Hijras – Hijras are members of a traditional male-to-female
(MtF) transsexual community. They are mostly from an economically
disadvantagd background.
Double Decker – Homosexual/Bisexual men who do not have
either feminine (Kothi) or macho (Panthi) gender identity. They are
from socio-economically disadvantagd class.
Jogappa – One of the lesser known transgender communities in
India the Jogappa are connected with the worship of Goddess
Yellamma (“mother of all”). Many women and men also dedicate
themselves, their spouses, or their children to the service of Goddess
Yellamma. While some boys are dedicated to Yellamma and then are
considered “sacred women”, many male-to-female (MtF)transgenders
“choose” the goddess.
FtM – female-to-male
MtF – male-to-female
KSMF – Karnataka Sexual Minorities Forum
PLHIV - People Living with HIV

1
Defining the Issues
The adage ‘AIDS has no boundaries’ was used to highlight
the fact that it can strike all people irrespective of gender, religion,
country, age, and that it is global in nature. While this is an accurate
description from a strictly biomedical standpoint; the transmission
of HIV is a social phenomenon. Boundaries, other social
determinants and inequalities play an important role in the manner
in which the virus spreads. (Evan S Lieberman: Boundaries of
Contagion 2009)
The initial fear that permeated policy and programme
approaches to HIV gave way to a blame game to point fingers to
those spreading the disease (The Panos Institute Blaming Others:
Prejudice, Race, and Worldwide AIDS 1988) Certain subpopulations
(based on race, sexual orientation, occupation, etc) were seen as
“vectors of the disease’. This was based on the fact that HIV
disproportionately affected people who were marginalised,
stigmatised, and discriminated against; thereby heightening the
existing prejudice. This and the transmission routes allow citizens
MovingTargets?
Re-lookingattheHIVServices:from
theviewpointofmale-bornsexualminorities
Human rights violations are not accidents; they are not random in distribution or effect.
Rights violations are rather symptoms of deeper pathologies of power and linked
intimately to the social conditions that so often determine who will suffer abuse and
who will be shielded from harm.
–Paul Farmer, Pathologies of Power (2003: 7)

2 3
Treatment Issues
and political leaders to imagine the infection as a ‘choice’ one makes
or the ‘price’ one pays for a particular way of life by dividing those
infected into “innocent victims” and ‘high risk groups’.
HIV prevalence among certain groups (sex workers, injecting
drug users (IDUs), truck drivers, migrant workers, men who have
sex with men (MSMs), transgenders) remains high and is currently
14 to 15 times that of the general population; according to NACOs
2009–figures for. The current national response has particularly
focused on them in its intervention.
This report is an attempt to articulate and bring into centre
stage the experience of sexual minorities, vis-à-vis two primary
components — testing and treatment — of the NationalAIDS Control
Programme, India [NACP III] (2007–2012). Testing and treatment
are seen as integral parts of the programme (along with prevention)
to move towards the overall goal of halting and reversing the epidemic
in India. Testing is increasingly viewed as the “critical gateway” to
HIV treatment and prevention. For more patients to receive treatment,
more people need to be tested for HIV: very many more.
The reason for stressing on testing is to accrue the gains of
early testing. HIV testing assumed an important role in
epidemiological surveillance and — as treatment became available
— on individual testing for clinical purposes.
Testing, diagnosis and medical care before developing
opportunistic infections,AIDS defining illness and clinicalAIDS and
after HIV infection can prevent illness and improve survival. It can
also reduce onward transmission to sexual partners and to infants of
infected mothers. The main thrust of testing, however, remains to
gather a statistical picture of the epidemic and to prevent HIV infected
individuals from transmitting the virus to others and to get them on to
ART. The lack of identity of those afflicted with HIV reduces them to
mere statistics, thus decreasing their economic and political clout.
HIV counselling and testing services started in India in 1997;
and currently there are more than 4,000 Counselling and Testing
Centres – (http://www.nacoonline.org/National_AIDS_Control
_Program/Services_for_Prevention/Integrated_Counselling_
and_Testing__ICT/), mainly located in the government hospitals.
According to NACO, the ‘Integrated Counselling and Testing Centre’
(ICTC) was to provide services to all clients under one roof. NACO
envisages the main functions of an ICTC to be:
● Conducting HIV diagnostic tests.
● Providing basic information on the modes of HIV transmission,
and promoting behavioural change to reduce vulnerability.
● Link people with other HIV prevention, care and treatment services.
IDUs with 8.71 %, MSM with 5.69% and female sex workers
(FSWs) are the most vulnerable sections of the population given
the higher prevalence of HIV amongst them. They are however,
regarded as high-risk groups. The efforts to halt and reverse the
HIV have especially been targeted at them. (http://nacoonline.org/
Quick_Links/HIV_Data/)
Treatment Issues
While treatment was not a component in Phase II of the National
AIDS Control Programme (NACP), it changed in PhaseIII with 12.5%
of the total funds allocated to ART – 11.5% on adult ART and 1.0%
on paediatric ART. A policy-cum-programme commitment for
providing free ART was put into place from April, 2004. ART is a
combination of at least 3ARVdrugs given to HIVinfected individuals,
once they reach a stage of advanced immuno-suppression.
India has been home to extraordinary manufacturing base for
generic drugs, which have been exported at low costs to African
and other countries for their programmes. Given this, it is an irony

that providing of free ART at government hospitals to PLHIV came
in as late as 2004. India is among the furthest away from the WHO/
UNAIDS goal of ‘3 by 5’ ie to provide antiretroviral therapy to 3
million people in developing countries by the end of 2005.
Even as India moves to widen the availability of antiretroviral
therapy and integrate that into the National Rural Health Mission
(NRHM), there is hardly any discussion about the reasons for the
fragile state of national and local health systems. The national and
the local health systems are meant to manage health in general but
have weakened for at least two decades owing to political choices.
The 1990s ushered in the era of liberalisation, privatisation and
globalisation. This paradigm shift, lead to discarding of the ‘free of
cost’ concept of health services and in the face of dwindling public
health expenditures at all government levels the poorest of poor
particularly in the low income states and regions of India are
particularly hard-hit.
An estimated 300,000 adults (aged 15 and above) were
receiving free ARVs (Antiretro Virals) till April 2010. This figure
represents less than half the adults estimated to be in need of ART
in India. While the coverage of treatment remains unacceptably low,
improvements are being made. The government has started to expand
access toARVs in several areas.At present, there are 197ART centres
in the country (http://www.nacoonline.org/Quick_Links/Publication/
Treatment_Care__Support/Others/List_of_127_ART_centres
_with_addresses) and 33 ART centres (http://www.nacoonline.org/
upload/Care & Treatment/ART centres March-2010.pdf) in the state
of Karnataka. The policy is aimed at making ART accessible to
everyone who requires it. Along with access to these drugs, other
services such as drugs for opportunistic infections, CD4 testing,
other diagnostic tests were also to be provided at the centres.
Here again, the situation of marginalised groups merits special
focus. They are particularly vulnerable in terms of being infected
with HIV and also because they face barriers to accessing healthcare
services. The fundamental egalitarian ethos that informs the
designing of health services should be a ‘universal access’. The
understanding of equality has to necessarily move beyond a
mechanical understanding of equality to appreciate that the inequality
between groups are sustained by government inaction as well as by
government action.
About This Study
This study on the ICTC and ART centres stemmed from the
experiences of some of the members of KSMF ( please see the box
for details of KSMF). These ranged from positive ones of a caring
counsellor to incidents of discrimination and even violation of their
rights. These became the trigger to explore the structures and the
services in a systematic manner.
Given the centrality of the interventions by government
agencies, NGOs and CBOs in the prevention and treatment of HIV
which has a direct impact on morbidity and mortality; examining
the experiences and insights of the male-born sexual minority
communities will shed light on a range of issues regarding
entitlements of this population.
The third phase of the National AIDS Control Programme
(NACP III) has prioritised the components of testing and then linked
those who test positive for HIV care, support and treatment. This
has also translated into programmatic thrust and activities.
This study, therefore, focuses on twin aspects of testing and
treatment ie the experience of male born sexual minorities (hijras,
jogappas, kothis, double-dekkers among other SM from here on),
who are the targets of the programmes as well as staff (from the SM
About This Study
4 5

communities as well as others) who are directly involved in
implementing the programmes to achieve the goals set and also
interact closely with the communities.
Purpose of the Study:To unpack the in-built barriers and biases
in the HIV services for sexual minorities and to understand the human
rights violations, if any, in the process of delivering these services.
Specific Objectives:
– To learn how sexual minorities experience the HIV service
delivery mechanisms and systems as clients of the services and
as staff promoting the services.
– To advocate for changes in the existing policies and programmes
based on the suggestions that emerge.
The points of departure of this study are
● While most studies are conducted from the perspective of
increasing the demand for the services; this study focuses on the
experience of the SM communities and draws recommendations
from them on the kind of programme that would be helpful.
● It places at the centre principles of human rights and equity.
● Rather than treat members of the SM communities as objects of
study; this study has them as actors, as subjects. They are co-
researchers who helped with the designing and conducting the
research. The results have been vetted by them.
● This study focuses on issues of availability, access and human
rights.
● This study seeks to offer a ‘worm’s eye view” meaning views
from the ground of realities as they happen.
Method
This study was conducted by activists and leaders of the SM
communities; with support from the staff of Aneka.
The following process steps were followed:
● The idea and objectives of the study was discussed with the
investigators.
● The districts were selected by them. They were chosen keeping
in mind the HIV prevention interventions that were in place (some
supported by Karnataka Health Promotion Trust KHPT and others
by Karnataka State Aids Prevention Society – KSAPS), the size
of the SM population as revealed by mapping exercises, districts
that reflect cultural diversity and where KSMF has substantial
support. The study was conducted in the following districts –
Bangalore Rural, Bangalore Urban, Bagalkot, Belgaum,
Dakshina Kannada, Udupi, Ramanagaram, Gulbarga, Koppal,
Raichur, Dharwad and Chamrajnagar.
● The issues that were identified to be studied clustered around
three broad heads – availability, accessibility, and human
rights issues.
● Detailed guides for focus group discussions were prepared along
with the investigators.
● The investigators (15) were trained in the basics on researching
techniques.
● Five teams of three members each were formed, dates fixed for
the visits to the districts and background coordination with the
NGOs and CBOs were done that were involved in HIV prevention
of the districts. The support of these organisations is especially
acknowledged.
6 7
Method

● Focus group discussions were held with at least three sets of
people in each of the districts chosen for the study. The three
groups included – community members, community staff
members (i.e. of NGOs or CBOs) and non-community staff
members. In 11 FGDs (one in each district) were held with sexual
minorities LHIV. Some of them are members of Sadhane (an
organisation of PLHIV, sex workers and sexual minorities aimed
at providing support and helping them access care services).
● The number of people in each FGD varied from 10 to 15 and the
average time for each of these sessions were 60 min to 80 min
(depending upon the participation).
Recruitment was conducted by volunteers from these
community-based organisations by word-of-mouth only to avoid
potential risks to participants being identified as SM or PLHIV.
Participants were also selected based on the ability to articulate their
own and their peers’ experiences. All focus groups were conducted
in a private room at organisations that work with SM.
Limitations to this study include the small sample size of
purposively sampled from community organisations. While caution
should be exercised in generalising the results; as a qualitative study,
it points to the various biases, barriers and inequity within the various
subpopulations of MSM or TG in Karnataka. Since the recruitment
of study participants was done through community based
organisations working with MSM and TG, the level of knowledge
and community support may be higher than among those who are
not associated with NGOs; it is possible that the latter may experience
even greater barriers.
Karnataka Districts
8 9
Method

Areas covered
1. Availability of the ICTC and ART centres (i.e. in terms of the
presence of the centres, timing, personnel, services, etc.)
2. Accessibility of the ICTC and ART centres (i.e. in terms of
transportation, financial barriers, acceptance issues, social and
cultural barriers, etc.)
3. Human rights issues (in terms of non-discrimination/equality,
rights to education and health, right to privacy, right to dignity,
right to participate in public life).
This report attempts to capture the concerns and experiences
of the respondents. No individual’s names or district names are
mentioned in the report to protect the confidentiality of the
respondents. Many of them did fear a backlash – from the staff, the
NGO, and the funding agency if their names or the name of their
organisation was mentioned. This fear that disclosure of the name
of the person or the organisation will result in punitive action of
some kind reflects the general lack of openness in the area of HIV
interventions. This general cloak of secrecy and non-transparency
is in our opinion, the result of a lack of feeling of partnership among
the various stakeholders. This attitude is at the core of some of the
issues that have risen.
The main issues that emerged vis-à-vis testing are
1. The presence of the ICTCs in their districts is known to all the
staff and most community members.Afew did say that they were
not exactly sure of where the ICTC was. They comprised a
minority though. There was also a fairly good knowledge among
the staff about most of the services provided at ICTC. Some
community members though only had a partial idea of the same.
On the whole, this aspect of disseminating information about
the existence of such a service seems to be fairly wide-spread.
2. Some of the barriers that did not permit them to avail of the
services included issues of
a. Timings: In nine districts it was reported that the ICTC were
opened for a limited time and often when it was not suitable
for the community members working elsewhere or who lived
far away. There was also an issue of the time spent in waiting.
Many factors contributed to the waiting time viz the long
queues and the fact that often the medical personnel were
away for long stretches of time. Sometimes, a patient is not
tested despite him/her her travelling all the way owing to
key staff members being away, resulting in the patient not
being tested. The absence of the personnel and the fact that
they often did not work even for the hours prescribed puts a
strain on the people, who visit the ICTC.
b. Lack of information and proper services: Even as the
services were available, some of the key components like
testing kits were in short supply. While three districts recorded
frequent shortage, the other six recorded an occasional
shortage. An observation universally made was that
counselling services were of poor quality. The respondents
narrated how in one particular district they reported that there
really was no pre-test counselling. Post-test counselling is
reported to be almost non-existent if a person tests negative.
This is a serious issue because the opportunity to reiterate
the message of safer sex and the need to return to testing
after a period of six months or so is lost. Counselling was
more about giving some information rather than encouraging
the client to decide and learn and make behavioural changes.
The primary focus during the counselling sessions was on
preparation of results (i.e. in case the person status is HIV
10 11
Method

positive). There is insufficient attention and lack of sharing
of information regarding busting myths or misconceptions,
and dealing with some of psychosocial aspects as well as
practical consideration after the person knows about her or
his HIV positive status. There seems to be a common failure
in most districts.Also, the information on treatment, received
at the ICTC seems inadequate. The discomfort and lack of
knowledge about the SM population means generally no
discussion on sexual transmission to their female partners.
In two districts we found that the counsellors were not familiar
with the language or the dialect of the region, thereby making
it difficult to communicate with the community members.
c. In as many as four districts it was reported that vacancies
that exist in the ICTCs are not filled up in time. This again is
detrimental to the programme. Counselling was seriously
compromised in terms of time spent, skills of the counsellor,
etc in 7 of the 11 districts on a regular basis. In the latter
case, it is during health camps, etc where many people are
tested within a short time span (a day or a few hours).
d. Range of services offered was also an issue: Referral services
were generally poor. Most ICTC centres were too focussed
on determining the HIV status of an individual. Other issues
including sexually transmitted infections (STIs) do not get
the same attention.
e. The general infrastructure in and around the ICTC was
left much to be desired. In most places (seven districts)
lack of privacy was a concern. The waiting area for all
was common within the small premises where the ICTC
was located. This has serious implications for the
programme, which will be discussed later. Important
facilities like drinking water, place to sit, toilet facilities
amongst others were not adequately available in an
overwhelming majority of the ICTCs (9 of the 11).
3. Access: Most of the ICTCs were fairly easily accessible as they
were located in a central area. However, there are many other
seemingly invisible walls that keep people out.
a. Fear of identification: was a major fear that kept people
away. The ICTCs are not discreetly placed. There is a constant
fear that they may be seen entering or exiting the ICTC by
relatives, fellow villagers and friends.
b. Issues of privacy: The construction of ICTCs and the way
space is allocated, the privacy of a person is often
compromised. Notions of privacy are culture specific but there
is a requirement to meet those needs. The most pressing fear
is that of disclosure. Many do not trust the fact that their HIV
status will not be revealed to others and hence are hesitant to
use the services.
c. Complaints about counsellors: In seven FGDs people
reported that the counsellor did not spend enough time
with them; was often rude and asked intrusive and
unnecessarily personal questions. There seems to be a
rampant lack of knowledge about issues related to sexual
minorities. (Please see the human rights section of the
report where this is dealt with)
d. Not free after all: Though the tests were free of charge, there
were other costs involved. These include transportation
charges, opportunity costs, loss of wages, etc. Often people
had to make more than one trip for their tests and then
subsequently to pick up their results. The costs, in terms of
money and time, to make these trips acted as deterrents.
12 13
Method

e. Another reason why people did not access the service was
because of self-perceived low risk.
4. Human rights issues: There were some deep concerns that came
to the fore.
a. Pressure of targets: While the policy states that testing has
to be voluntary, in practise the model places at its centre the
fulfilling of numerical targets, and thereby inherently supports
unethical ways of testing. The targets place a huge burden on
those at the bottom of the pyramid. The peer educators,
community mobilisers and others in targeted interventions
are under pressure to meet unrealistic targets vis-à-vis testing.
They are supposed to motivate a substantial percentage of
the population that they work with to be tested failing which,
they are penalised. This results in them working under a great
deal of pressure, often demotivating them. They need to
perform under terribly adverse conditions. This includes
reaching out to the community that is struggling to be open;
facing abuse and violence from the police, local goons and
general society with little support (including from the
organisation, funding agency or State Aids Control Society -
SACS). The populations that reach out too also feel betrayed
that none of their other needs are met (other than condoms).
b. They therefore resort to a range of questionable practises.
Compromise on voluntary nature of testing: Many
community members are brought to the centre under false
pretences (they are promised rewards that may not materialise)
or pressured based on the friendship with the staff member
or peer counsellor. One peer educator even reported offering
sexual services as an incentive for some community members
to come to the ICTC. Many of them said they have paid
community members money or bought them a snack after
they come for the testing. Some of the other desperate
measures undertaken to meet the target include bringing in
non SM for the test just so that the targets are met, those who
already know that they are positive sometimes oblige their
friends and come repeatedly for testing, bringing the same
person under different names to different centres amongst
others. This means that there is duplication and falsity of the
data obtained. The main purpose that many people do not
return for results not only shows a fear of HIV; it also raises
questions on whether they were committed to knowing their
HIV status or if they were manipulated or channelled into
testing. The signatures on the consent forms are acquired in
all the districts without proper briefing. People are just
directed to sign.
c. The services: There are serious questions about the quality
of the counselling. Shockingly in as many as nine districts
people reported that the counsellors or other staff often abused
them and made disparaging remarks about sexual minorities.
They are often “blamed” for being at risk, of contracting HIV.
They are viewed as the “vectors of the diseases”. Even when
the attitude of the staff is not callous, there is a great degree
of ignorance on issues around sexual orientation and gender
identity. This lacuna, especially in the counsellor, is seen as a
major reason why the target group stays away from the testing
centres. Ironically, the ICTCs are not viewed as places where
the community is welcome.
d. The greatest non-compliance to basic human rights is issues
around confidentiality. The results of the tests often become
known to staff of the HIV prevention programme i.e. it is not
merely the counsellors or the technicians who get to know.
Often peer educators, community mobilisers and others are
aware of the results. This is due to many factors. Right to
privacy is not accorded due importance in our culture.
14 15
Method

However, what is alarming is that the prescribed practises
themselves lead to leaking of this information. This breach
of confidentiality is in-built in the demands of the
programmes. It may be done inadvertently. For example the
practise of peer educators having to follow-up with those who
have not gone at regular intervals for testing. Peer educators
notice that some of the names are omitted even though they
know that the person has not been tested in a long while. It is
then obvious that the names missing are of those who have
tested positive. The system of line-listing, the manner in which
referrals and follow-ups are carried out lead to the HIV status
of those tested becoming public knowledge. This is passed
off under the guise of “shared confidentiality” which is
supposed to facilitate better care. However, often it takes away
the right of the person to make that choice of sharing (or not)
her or his HIV status. Shared confidentiality is part of the
philosophy of the counselling and testing services adopted
with the idea that in the long run the stigma and discrimination
will reduce steadily (a claim based on unfounded
assumptions). Also, there are no measures in place to deal
with the possible negative impact of this disclosure to a
number of people that can very easily become common
knowledge. It is obvious that the so-called public health
considerations override the human rights and concern of the
individual. Sometimes, special drives to increase testing
among the SM community are taken up. While this is for the
benefit of the community, there are some dangers here as
well. For instance, the melas and the camp style may be
attractive and may be a way to reach to the community. But,
the testing is carried out without the informed and voluntary
consent and proper counselling of the community members.
Often those who are tested are not in fact motivated. While
they may get tested on the spur of the moment, many do not
collect their results defeating the entire purpose. This then
means that the exercise has not had the desired results and
that the lack of counselling also has serious implications on
their mental health. These programmes compromise quality
in a bid to meet targets somehow. In multiple districts the
NGOs has sent test results to the funding agencies as part of
the reporting procedures. The purported reasons are to better
track follow up of treatment. However, little care is taken to
ensure that the privacy of the person is protected.
Impact on the staff: The HIV intervention programmes are
built on a pyramid-like structure and the “foot-soldiers” of
the ‘war on HIV’. The peer-educators are supposedly
volunteers, who conduct their HIV prevention work along
with whatever else they want to do. They are therefore given
only something called an honorarium. This is largely a rather
underhanded way to avoid paying them a minimum wage
and offering them other benefits. They work in difficult and
even dangerous situations. This is generally not recognised
and they are not supported when they face trouble from either
police or local goons. The focus remains narrowly on meeting
the expected targets. The staff, therefore, feels used and
uncared for. They are expected to perform many different
tasks right from motivating people to come for testing, to
sharing information on HIV, to filing in cumbersome reporting
formats. This calls for complex skill sets and yet they are
paid a pittance without any further growth opportunities.
Worse are the salary cuts that some of them face for not
meeting the stiff targets month after month. The rights of these
staff members at the lower levels of the hierarchy are routinely
transgressed. The unrealistic workload, lack of training, the
monotonous and narrowly defined jobs, the risks of the work
and low salary means that there is heavy staff turnover
especially at the lower levels. This means that the programme
suffers, contacts of the old staff are sometimes lost, the new
16 17
Method

staff members have to be recruited and trained, which is costly
in terms of time and money. The community does not get
steady service. Sometimes, there is a loss of data and the
pressure on other staff members increases tremendously.
Added to this, the programme also witnesses lack of
ownership since there is little scope for staff (especially at
the lower levels) to participate in designing or shaping it.
The appallingly low wages of peer educators was a cause of
outrage in all the districts uniformly. The peer educators reach
out to sexual minorities on everyday basis often at enormous
risk of violence and abuse at the hands of police, goondas
and at times hostile public. Most of them take up this job as a
livelihood option, as most of them are from economically
disadvantaged backgrounds. The government, funding
agencies, NGOs and CBOs employ them but by terming them
‘volunteers’ pay a paltry monthly honorarium of Rs. 1,500.
This results in a denial of their many of their rightful statutory
benefits like under Minimum Wages Act, Contract Labour
(Regulation and Abolition) Act, Employees Provident Fund
and Miscellaneous Provisions Act, Employees’ State
Insurance Act, etc. There was also a perceived feeling of
unfairness as there seemed to be other staff and consultants
who were paid decent and even disproportionately large
amounts as salaries or fees.
5. Impact on community: The community members appreciate
the fact that there is a programme that provides them with
information, condoms, testing facilities and links them up with
the ART centres, if necessary. They are aware of the need for
such a programme. The manner in which the programme is carried
out, both in terms of scope (of merely focusing on HIV-prevention
in a narrow sense) and approach (of treating them as moving
targets and numbers), betrays a complete lack of respect for
people. The lack of any other role within the structures leaves
them feeling cheated. They often are of the opinion that the staff
members are making money at their expense or that they are
using them to meet their own targets. Hence, there is often tension
or anger against the staff members of the projects, especially
their peers. The community members often avoid or feel distant
from the peers. The programme, then, has created this schism
and failed to address this. The community members felt that the
lack of sharing of information, and reduced chances for their
participation was deliberate, and was a way to exploit them. Many
were sympathetic to the peer educators and other staff, but were
angry about the way the programme was envisaged. In some
districts, the community members did report that the staff were
committed and helped them in times of trouble. Sustained and
long-term crisis intervention had a strong positive impact on the
community members who valued this support for many reasons.
This, in their opinion, demonstrated the concern of the
organisation for them. They received support, when they most
needed it, and had felt empowered after the intervention.
6. Implications for accountability: The nature of the intervention
led to the numbers of those getting tested being fudged. Therefore,
the main objectives of testing (getting accurate data, providing
early support to those who test positive, preventing the spread to
others, etc) are lost. There are also hardly any mechanisms to
allow for transparency or accountability of the programmes.
Therefore, many staff members at the CBO or NGO level feel
that they are being policed almost on a daily basis. There is no
way they can hold accountable the staff members belonging to
the funding and support agencies. When the staff members of
these agencies are abusive or unreasonable, there is no forum in
which this can be addressed. While their salaries and other details
(including details like their sexual identity and often HIV status)
were known to all, they had no knowledge about the salaries and
job descriptions of those within the funding agency. Almost all
18 19
Method

of them felt that there was a great distance between them and the
funding agency. They did not feel like partners on a joint mission.
The monitoring and evaluation processes only went one way i.e.
for those at the bottom had to answer those on the top.
Antiretroviral Therapy Centres
The emergence of Antiretro Virals (ARV), as a treatment
for HIV, has drastically improved the quality of life, as well
prolonged the lifespan of persons living with HIV (PLHIV).
Through the use of ARVs, HIV has gone from meaning certain
death to being a chronic but treatable life-long condition. HIV
andAIDS care therefore, necessitatesAntiretro viral therapy (ART)
as a treatment option. ARVs also play a significant role in reducing
the risk of transmission by drastically lowering a person’s viral
load and lowering the chances of transmission of the virus.
Providing ARVs is treatment as well as prevention; thus ensuring
that the government can discharge its duty to ‘protect and preserve
the health of its citizens’.
During the study the following points emerged:
1. Availability
Almost all the respondents are aware that there are ART
centres, and many knew where it was located. But, many were unsure
about the type and extent of services available there. This included
community members and even some of the staff members. There is
a lop-sided focus given to providing HIV-prevention education,
condom promotion and distribution. But, relatively little attention
is given to providing ART-related information. The respondents
opined that, the lack of adequate training among outreach workers
and peer educators, could be another reason why adequate
information on ART is not provided. The lack of mass media
campaigns on ART and free government ART programme was
another reason for limited knowledge of ART among sexual
minorities.
Besides information gaps, the main issues regarding
availability of the ART centres were in terms of numbers (that there
were too few), and that the services left much to be desired. The
timings were unsuitable in six of the districts where FGDs were
conducted. Often staff members were on leave or away from the
centres for long periods of time, without any explanation. Often
people, who travelled a long distance for the tests and the treatment,
were denied this, and had to come back the second time. Sometimes,
people postpone going back again for a variety of reasons. Or they
have had to stay over. With no place to stay, the means of costs in
terms of travel and other incidental expenses increases. For those
reliant on daily wages — including sex workers and those seeking
alms — the visits mean a loss of earning for that day. The medicines,
to treat opportunistic diseases, were not always available; or a
payment had to be made. They also have to find doctors who are
sensitive to their status. The diagnostic equipment (for CD4 count),
sometimes, does not work, and this means a further delay in getting
their treatment. Other important medical test like the viral load tests
are often not carried out at the ART centres. Sometimes even for
simple procedures like getting an X-ray of their chest, they need to
have the X-ray taken on one day, the X-ray is handed over on another
and the doctor sees them on the third day.
The physical infrastructure was also rather poor in most
places. In many of the ART centres, there were long queues. They
got thirsty or hungry, and sometimes had no access to water. In as
many as six districts, even simple facilities like benches or seats to
sit on were absent and the state of the toilets were terrible. Privacy
was seriously compromised. (See more of this under Human Rights
in this section). The service availability is also compromised because
20 21

of the lackadaisical services in some ART centres that include the
counsellors, (five districts reported this) who do not spend much
time with the clients, because they are again under pressure to
counsel a certain number of people, everyday. Counselling, which
is supposed to place the client at its centre and offer what she or he
would want, instead becomes a mechanical reeling of facts about
HIV transmission and do’s and don’ts in terms of behaviour. Often,
many of them do not even have the depth of knowledge on issues
like gender and sexuality, making it difficult for them to counsel
sexual minorities.
2. Access
The problems with access were many. One was to do with
the physical access, where the long distance and lack of
transportation support made it difficult to reach the centres. There
were many other reasons why the community could not access
the services.
a. Proof of address and identity issues: To facilitate follow-
up of patients, a valid identity or address proof was required
for getting enrolled in government ART programme. This
posed problem as stressed in six FGDs. Many of them do not
have the documents required because of their general
marginalisation from the society or their gender status. This
practice now is not enforced strictly in most places and is
therefore useful. Hijras and Jogappas often have documents
that are in a male name and they are denied treatment as their
identity does not match the sex assigned in these documents.
Some said that they are told to register in this male name and
they find that painful. Some SM want to avail ART from a
centre, which is not located in the same district, since they
are concerned about their HIV+ status being known to others
in their locality. However, they too find it difficult to get
enrolled in ART centers in other places because of issues of
travel costs and also the rules that often applied that the
treatment has to be made available only to those staying in
that district. For those, who migrate or move around often
(such as hijras, jogappas), there are other problems. While
they may start ART in one place; if they are away for a long
time in another place, they are not able to access treatment
there. Those who frequently change their city of residence,
found it very inconvenient to cope with all the bureaucratic
procedures that needed to be followed for getting transferred
from one ART centre to another, each time they change
their residence.
b. The requirement of family members to accompany the
person: To ensure adherence, there is a demand that a family
member accompanies the person to the ART centre. This is a
problem that seven districts reported as a significant one as
they may not want to reveal their HIV status to their family
members, or their family members may not support them.
Hijras and jogappas are often ostracised by their family
members or they have had to leave home, rendering it
impossible to bring a family member. Some said that, those
accompanied by staff of community organisations usually do
not face this problem, since the organisations convince service
providers that they will follow-up with those patients if they
are enrolled in the ART programme.
c. Discrimination of various sorts
The discrimination takes various forms. People in six districts
reported they were ignored, or given very cursory treatment.
Many spoke of the prejudices that the staff at theART centres
harboured. Some of them said that even though the treatment
was supposedly on a first-come-first-serve basis, they were
less likely to be among those ‘first served’. The respondents
said that often they do not reveal their sexual orientation to
22 23

the staff owing to their moralistic views. They reported that
the staff members even told them that it was owing to their
‘bad behaviour’, that they were infected in the first place.
The doctors do not even touch them when they know that
they are sexual minorities. They examine them from a distance
and almost seem afraid of them. Even a simple act like
standing in the queue to get their medication can elicit rude
behaviour from the staff. Hijras and Jogappas, the respondents
say, are not even treated as human beings by most of the
medical establishment. While some Kothis might still access
government hospitals for HIV related services, the stress
associated with potential discrimination from providers may
prevent some from even accessing basic healthcare services.
d. Costs: While the ARV treatment was free, medicines for
opportunistic infections and health problems had to be
purchased. Other tests that had to be carried out were also
expensive. Often, there were no provisions for tests at some
of theART centres. Sometimes, people had to visit more than
one health centre for the different tests. This was again costly
in terms of time, money and opportunity costs.
e. The lack of support and stigma: The fear of their HIV status
being leaked if they visit the ART centre or when they are on
treatment (i.e. people see them taking their medicines and
thereby guess their status) also prevents people from seeking
out treatment according to at least respondents in 4 districts.
Within the family or within the hijra or jogappa community,
they are afraid that since they have to regularly take the
medicines, others may get suspicious and they would get to
know if they are PLHIV. They could then face isolation,
violence and being thrown out of their home. They also feel
that they are bringing shame to the family preventing them
from revealing their status and seeking support. There are
also concerns on the HIV+ status being known affecting their
earning potential as sex workers and also in other occupations
(ironically, even in projects working for the prevention of
HIV). In these organisations as well, there are hardly any
policies or practices of supporting PLHIV.
f. Other concerns: One is to do with the consumption of
alcohol. Participants mentioned that patients, who are
registered for ART, are strictly advised by counsellors and
doctors not to consume alcohol to ensure adherence to ART.
Some SM, who regularly consume alcohol, do not want to
initiateART, since that might require them to break this habit..
Some are afraid of the side-effects if they resume alcohol use
while on ART. This fear potentially prevents them from
initiating ART.
g. Many are not sure about being able to adhere to the ART
regime and are worried about the consequences of non-
adherence, which stops some people from initiating ART or
delaying it.
There are also individual psychological barriers – deep-seated
guilt, fatalism, pessimism, low self acceptance, low-esteem, etc.
3. Human Rights Issues
Free provision of ARV drugs at the point of service is,
therefore, anticipated to result in an increase in enrolment and
sustained adherence rates for the poor and marginalised.
a. The first issue is to do with ethical principles such as
confidentiality, informed consent and non-discrimination.
Most respondents did talk about issues of confidentiality at
the centres. While in some districts, they said that, the staff
did not compromise on issues of confidentiality; in others
they said that the reverse was also true. The staff members
disclosed their HIV status and that they were onART to others,
24 25

by sometimes asking them questions about their CD4 count
in front of others. This has not only undermined the
programme, but also breached their right to privacy and often
had other serious impacts that they have had to deal with
(whether at home, at work, in the village or town or from
relatives). The loss of trust in the system, fear, and suspicion
that this generates, distances people from the health delivery
mechanism. Further, many live with doubt and anxiety, as
they are worried that their HIV+ status or their orientation or
gender identity (or both) will become known. The loss that
they fear is both in material and non-material terms. With
regard to informed consent as well, there is non-adherence to
full disclosure. There is a need to strongly encourage people,
who need to get on to ART and stick with the treatment. It is
also essential that details like the possible toxic side-effects
of drugs, the need for life-long treatment and the possibility
of resistance be shared with them. As regards to
discrimination, besides the point mentioned above, it is
distressing that in six districts there have been instances of
outright abuse, expression of moralistic anger against sexual
minorities and sex workers (saying that they ‘deserved’ to
get infected).
b. Human rights concerns arise owing to the denial of treatment
that happens in other ways. For instance, when people do not
fulfil the ‘criteria’ such as not residing at that district, etc.
Hence, they get excluded and their right to healthcare is
trampled upon in the process.
c. The inability to meet other needs — for instance quality
counselling needs of those who are to seek ART — means
that they are excluded. Often people experience number of
fears, confusion and are simultaneously dealing with variety
of other issues. The lack of a support mechanism prevents
them from starting or adhering to the treatment regime. The
lack of practical and realistic advice and support (on what to
expect, what is possible, etc.) proves to be a deterrent.
d. The programme’s narrow focus on the medical side of the
infection disregards other related needs figured prominently
in the discussions in six districts. Food insufficiency,
insecurity and food that is low in nutritional value have a
complex relationship with HIV; with both disproportionately
affecting those who are impoverished. Malnourishment and
food insecurity unfavourably affect the outcome of HIV
treatment. PLHIV also need food that will help build or sustain
the immunity level. The other costs of treatment may result
in compromising their health. This is a core issue that does
not get answered by most interventions. The same applies to
the issue of transport costs. The pressure to mobilise funds
required for the monthly clinic visits (which sometimes are
more than once a month) compromises adherence and access.
e. The coverage of health insurance is still sketchy and most of
the respondents are not covered. The reasons for low coverage
are many. But, in the absence of medical insurance, the costs
of the healthcare are prohibitive and out of the reach of many
poorer people.
Broad analysis
The narration of experience of people shows up some basic
fault lines in HIV intervention.
1. Much of what has occurred around HIV-AIDS has been on inter-
personal dynamics, service delivery and focus on marginalised
groups. Social changes that have magnified the spread and
26 27
Broad analysis

impacts of HIV-AIDS as well as the socio-economic and political
changes to control the epidemic are largely ignored.
2. There is a profound lack of respect and understanding of
communities. For instance, non-acceptance of testing or treatment
is understood as a lack of knowledge of the disease, cultural
resistance and not realising the need to seek care. The existing
predominant biomedical model, powers managers to impart
knowledge. ‘People’ are regarded as objects, located in relatively
isolated domains and are in need of being controlled by external
agents.The fact is that, human behaviour is conditioned by a variety
of factors and evolves over time; and any changes and mediation
has to be negotiated. Cognisance of issues around what is termed
as ‘sexual behaviour’is not seen in any context within which those
behaviours take place — ie the life circumstances — but are viewed
as merely behaviour of particular individuals (sometimes viewed
as irresponsible or ignorant). The need to inform and spread
awareness is a valid proposition. But, to revolve a campaign around
the fact that people do not know and have to be educated is not
just limiting and narrow but also arrogant.
3. The target-driven approach can lead to people being ‘targeted’.
People’s sufferings, their experiences are not accepted for
consideration, except those that are supposedly verifiable
quantitatively. However, as we have seen, this approach even
fails to generate accurate data, besides leading to gross human
rights violations. “When we ‘target’populations/ communities/
vulnerable groups, we willy-nilly subject them to ‘profound ill
effects of structural violence and pathologies of power” (Farmer,
2003). Our worry is that it would become like the family
planning programme of the 1970s, in particular during the
Emergency period. The existing ‘target approach’ and method
of delivery may in fact cause a setback to India’s ongoing HIV
management programme.
4. The idea of ‘a right to health’ is not part of the ethos of most of
the treatment centres. Therefore, communities feel that they are
receiving charity or a favour. This results in , patients who do
not demand or assert themselves. The practices of the health
workers often go unchallenged. The guidelines on ‘Testing and
Counselling’ are widely disregarded and this is common
knowledge. This includes routine testing without informing them,
compulsory testing and other such practices.
5. The level of discrimination in the health system is so high that it
results in lack of trust in the health system and the staff, thereby
diminishing the chance of PLHIV availing health services. Also,
the fear of HIV and issues related to stigma and discrimination,
results in an under-utilisation of the services (including testing).
6. The idea of equity of access, therefore, has to be embedded into
the imagining of interventions. This does not imply that
marginalised groups require privileged or ‘special status’ over
other groups, in relation to ART access. The additional barriers
they face place them at a relative disadvantage. The issue of
barriers to ART access runs much deeper and is more complex
than mere denial of services. For provision of appropriate health
care (eg, appropriate counseling regarding safer sex for MSM/
TG; connecting alcohol dependence treatment programme), it is
important that healthcare providers ask about the marginalised
group status of PLHIV in a sensitive and non-judgmental manner.
The same level of confidentiality in maintaining the HIV status
of PLHIV should be taken in maintaining the confidentiality of
the sexual identity. Also, documentation about marginalised
group status may also help us to find out the proportion of PLHIV
from marginalised groups, who are gettingART from government
ART centres.
7. NACO clearly says in NACP-III plan, ‘ART need to be given for
all who need it’. Thus, there is already a policy on equity. It is
28 29
Broad analysis

commendable that NACO has this statement in NACP-III. It can
be seen as “implicit policy intent” in favour of equity inARTaccess.
However, when the recommendation mentions, ‘need for a policy
and action plan to ensure equity in ART access’, it refers to the
need for an explicit policy that articulates equity in ART access
for marginalised groups such as FSW, MSM/TG and IDU (and
other disadvantaged populations) and lists the strategies that will
be taken to achieve equity. The NACP-III plan is silent about these
strategies. Therefore, despite the recommendation being proposed,
it does not seem to be actually implemented.
Following suggestions and recommendations
emerged
1 Timings: This includes increasing the duration for which the
centres are open, as well as days of the week. Six districts suggested
that the centre be open at least one Sunday every month.All groups
were of the opinion that working hours of the centres should be
longer. The idea of earmarking a special day for SM and female
sex workers (say one day a week); elicited two contradictory
opinions. While some of the respondents were of opinion that this
would help as they would feel less threatened, others felt that they
will be even more ‘out in the open’ and be stigmatised.
2 Facilities: Basic facilities like seating arrangements, provision
of drinking water, clean toilets and subsidised food at the centres,
separate room for counselling as well as a clean and well-
ventilated space will not only offer some comfort for those
seeking these services but also sends out a message that the
service centres care about those who come there.
3 Services: In terms of improving services the respondents
suggestions were varied. Ensuring that the equipment works and
increasing the range of services that are available at the various
centres like the testing centres, the link ART Centres (which are
drug distribution centres which will be linked to the existing
ART centre) and the regular ART centres; came up repeatedly.
Counselling services (both pre and post test) as well treatment
education at the ART centres were especially highlighted as
important. Treatment messages should be reinforced in different
forms and through different people (peers, outreach workers,
doctors, and counselors). Treatment messages should not be
restricted only to those who are known to be HIV+. GivingART-
related treatment messages to all (irrespective of their HIV status)
will help in diffusion of this information among the community,
and avoid labelling people as PLHIV if only he or she receives
treatment messages from outreach workers. Additionally, these
ART messages shall be tailored in such a way to replace people’s
incorrect knowledge about ART (such as cure for HIV in
alternative medicines) and to understand issues related to side-
effects of ART.
4 Other mental health needs: like issues related to alcohol
dependency; and dealing with issues like disclosure of HIV status
and sexuality to family members, peers, etc. should also be noted.
The staff should also have the ability to identify referral needs
(for example people who are dependent on alcohol need to be
linked with de-addiction centres and provided greater psycho-
social support when needed). Currently, programmes to reduce
stigma and to provide psycho-social support are non-existent, or
are not factored enough in the design phase, the counsellor is
overburdened and the intervention insufficiently funded.
5 Expanding and strengthening Services: The need for
Community Care Centres was also specifically suggested in six
districts. Offering of expanded services will also be a break from
the narrow approach of seeing people as targets or merely as
30 31
Broad analysis

‘high risk groups’. Some of the suggested add-on services
included addressing issues of mental health concerns, and
nutritional needs of PLHIV. Barriers such as lack of appropriate
identity or address proof should not limit needy PLHIV from
getting ART; one should consider alternative arrangements
(recommendation letter from NGOs or PLHIV networks). This
is already happening in some places but should become accepted
practice. Developing ‘standards of care’ for ART initiation,
management, and monitoring for marginalised groups living with
HIV including SM and other marginalised groups would lead to
an increase in the quality and hence greater uptake of services.
6 Ethics: Beside quality service there is a need to ensure that
there is a legal and policy framework within which the HIV
response is scaled up, including safeguarding the human rights
of people seeking services and ensuring that ethical processes
followed. This is specially relevant for conducting testing, (which
includes defining the purpose of the test, the benefits to the
individuals being tested, and assurances of linkages between the
site where the test is being conducted and relevant treatment,
care and other services) and guaranteeing and maintaining
confidentiality of all medical information. The assurance should
be backed by action, against those who breach the expected
confidentiality. This is crucial for the culture of respecting
confidentiality to become the norm.
7 Staffing: In terms of vacancies the respondents suggested that
besides filling them up without inordinate delays, appointing
appropriate people was imperative. This means not only people
with adequate skills and knowledge, but also whose
circumstances allow them to fulfil their duties in the post that
they are occupying. For example, staff members who have to
travel from a far off place are often late or leave early; those
who do not speak the local language have a problem
communicating with the patients. These are points to keep in
mind though by no means are these the only criteria. One of the
most important considerations would be to have staff that are
sensitive to the community. On the question of peer counsellors,
both opinions prevailed. On the one hand, people felt that having
peer counsellors at the ICTC and ART centres would allow for
greater ease of approaching the person, as they will be accepting
of their sexual identity and HIV status; and will also perhaps be
more understanding. But on the other hand, there were fears that
through the peer counsellor, the confidentiality may be broken.
Secondly there are also fears that the person will not be neutral
since other dynamics (of friendship or rivalry) may colour the
way the person handles the community members. Some suggested
that both be present at the centres
8 Training of staff: Besides filling in the vacancy it was important
to train people on a range of issues including the basics of ART
treatment. For the SM communities who visit these centres, it is
important that the personnel are trained on issues related to gender
and sexuality. This includes outreach workers, counsellors, and
doctors. This training will also help them to address various
psychological barriers that prevent people from accessing
services. These include low self-esteem, discomfort with their
gender identity or sexual orientation, lack of self-efficacy inART
adherence, fatalism, and fearing of adverse consequences due to
disclosure of HIV status, etc.
9 Fighting Discrimination: Uprooting stigma and discrimination
(whether based on identity or HIV status) at all levels, notably
within health care settings, is very crucial. This again needs a
multipronged approach. Besides training and supporting staff
there is a need to have a written policy aimed zero tolerance of
discrimination. The people from the top should take the lead
and come out openly against discrimination of anybody,
32 33
Broad analysis

especially the marginalised groups at the ICTC andART centres.
Action should be initiated against anyone who is found to be
violating this policy.
10 Role of staff and community members: The crucial aspect of
the problem seems to be the manner in which the model is
envisaged. It is a top-down standardised model. While this may
lend itself more easily for replication and measurement of
‘success’, it views staff of the project and community members
as mere implementers. The fundamental issues, therefore, revolve
around the right to participate and to shape interventions by those
most affected. The intervention as it is conceived now has, for
example, no inclusion of the SM community in the ICTC orART
centres. PLHIVs too do not have the space to make their voice
heard in the way the centre is run either by offering feedback or
suggestions. Information is shared only on a need-to-know basis.
There is a demand that they be included at least during the
meetings at ICTC and ART centres; and more importantly in the
design of the interventions including action plan to ensure equity
in access for marginalised groups including SM. Right now,
respondents in almost all the FGDs had little knowledge of the
existing space within the programme for their intervention
because there are hardly any forum where they are included as
equal members. Practical outcomes such as developing guidelines
for sensitively dealing with the sexuality or gender identity-
related issues faced by kothis and transgender women can be
done in consultation with the community. This will help plug a
gap in the programme and also encourage a sense of partnership
among the most at risk groups
11 Especial support: Respondents said that the DLNs are often
not open and accepting of sexual minorities and sex workers.
They spoke about their membership to support groups like
‘Sadhane’ and Hosakirana (Special support and Community
Based Organisations focusing on SM and FSW who are living
with HIV) and its role in changing their perspective of themselves
and helping them sustain at crucial times including at times when
they have to get on to ART or when they are experiencing a
feeling of immense sadness. Therefore, capacity building of these
groups can play an important role in helping the SM link up for
services, after they are found to be HIV+.
12 Working with the general public: Implementing educational
and sensitisation programs for the general public to reduce stigma
associated with HIV/AIDS, same-sex sexuality, and transgender-
ism, and also educate them to accept and not to discriminate
against PLHIV, and kothis and hijras or jogappas or transgender
women. Publicising accurate information about ART and its
availability in selected government hospitals and through mass
media as well innovative communication campaigns that reach
out to SM, Jogappas and Hijras, especially those living with HIV
was also suggested.
Research team members
● Mahadevappa S Patil, Karnataka Sexual Minorities Forum
● Mohammad Rafiq Kaladagi, Karnataka Sexual Minorities Forum
● Khadar Ali, Karnataka Sexual Minorities Forum
● Gurukiran Kamath T R, Aneka
● Rajashekhar H S, Samara
● Chandini, Sangama
● Nandesh N, Karnataka Sexual Minorities Forum
● Kumar.B, Sangama
● Satish Erappa Sindhagi, Karnataka Sexual Minorities Forum
● Sonu, Sangama
● Kannan, Sangama
● Manjesh, Aneka
34 35
Broad analysis

● Dinesh Patil, Karnataka Sexual Minorities Forum
● Akkai, Sangama
● Chandrakanth Lakshman Hiremani, Karnataka Sexual Minorities
Forum
NGOs/CBOs that gave permission and
supported the Study:
● MYRADA – Gulabarga - (NGO)
● Samraksha – Raichur, Koppal - (NGO)
● Milan – Bagalkot – (CBO)
● Sweekar – Belgaum - (CBO)
● Suraksha – Dharwad, Bangalore Rural, Ramanagar - (NGO)
● Guards - Udupi - (NGO)
● Hindu Kust Nivaran Samithi - Dakshina Kannada - (NGO)
● Samara - Bangalore Urban - (CBO)
● Sadhane - Bangalore Urban, Bangalore Rural, Ramanagar,
Dharwad - (CBO)
IDPMS - Chanrajnagar – (NGO)
36

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