AWARENESS AND STIGMA RELATED TO HIV AMONG SEX ...

AWARENESS AND STIGMA RELATED TO HIV AMONG
SEX WORKERS IN PUNE, INDIA
Sofia Myhrman and Ingrid Gerdin
Correspondence: Ingrid Gerdin, gusgeing@student.gu.se
Sofia Myhrman, gusmyrso@student.gu.se
Supervisors: Rune Andersson, Professor MD, Research and development
centre, Skaraborg hospital, Skövde, Sweden
Lalita Edwards, MD, Pune, India
1

TABLE OF CONTENTS
ABSTRACT _______________________________________________________________ 3
ABBREVIATIONS__________________________________________________________ 4
INTRODUCTION __________________________________________________________ 5
INDIA ________________________________________________________________________ 5
HIV/AIDS _____________________________________________________________________ 5
Women living with HIV/AIDS (WLHA) in India _____________________________________ 6
Stigma and discrimination _______________________________________________________ 7
Prevention_____________________________________________________________________ 7
ART__________________________________________________________________________ 7
Pune - Budhwar Peth and Hindustani Covenant Church ______________________________ 8
Saheli karyakarta Sangh (SHAKS) ________________________________________________ 8
National AIDS Research Institute (NARI) __________________________________________ 8
METHODS ________________________________________________________________ 9
RESULTS _________________________________________________________________ 9
Age, socio-economic status and level of education among sex workers in Pune ___________ 10
General health ________________________________________________________________ 11
Information about HIV/AIDS____________________________________________________ 12
Condom use __________________________________________________________________ 13
Knowledge about HIV/AIDS ____________________________________________________ 13
Reasons for HIV-testing ________________________________________________________ 14
Living with HIV and experiences of stigma and discrimination ________________________ 15
DISCUSSION_____________________________________________________________ 15
Age, socio-economic status, level of education ______________________________________ 15
General health ________________________________________________________________ 16
Condom use __________________________________________________________________ 16
Information and knowledge about HIV/AIDS ______________________________________ 16
Reasons for HIV-testing ________________________________________________________ 17
Living with HIV and experiences of stigma and discrimination ________________________ 17
Limitations ___________________________________________________________________ 18
Acknowledgements:____________________________________________________________ 19
REFERENCES ___________________________________________________________ 20
APPENDIX 1 _____________________________________________________________ 22
Questionnaire _________________________________________________________________ 22
APPENDIX 2 _____________________________________________________________ 27
Questions during the interview___________________________________________________ 27
2

ABSTRACT
HIV is widespread among sex workers in Pune, Maharashtra, India (1). Our aim with this
study is to investigate stigma and discrimination from society against the female and
transgender sex workers living Budhwar Peth, known as the red light district area of Pune.
Questions concerning general knowledge about HIV and use of condoms were also included
in the study.
The sex workers belong to a low socio-economic group and generally have a low level of
education. Transgenders tend to have attended more years in school, and also reports having
an excellent health to a higher degree than the women. A high number among the sex workers
had been tested for HIV, mostly due to illness or for getting “general information”, and many
of the respondents knew an HIV-positive person. They were well informed about HIV, routes
of transmission and importance of condom use. Female sex workers participating in open
interviews had however several misconceptions. Many of the HIV-positive female and
transgender sex workers in the area reported experiences of discrimination and showed
various signs of depression.
Better understanding of the total life situation of people living with HIV/AIDS will give
information about where resources are most needed to improve their quality of life. This is
crucial, not only by humanitarian reasons, but also one step in the fight against the spread of
HIV.
3

ABBREVIATIONS
FSW - female sex worker
TG - transgender
TGSW - transgender sex worker
MSM - men who have sex with men
IDU - intravenous drug user
STD - sexually transmitted disease
PLHA - people living with HIV/AIDS
WLHA - women living with HIV/AIDS
SW - sex worker
NSW - non sex worker
NSWTG - non sex working transgender
ART - antiretroviral treatment
GUD - genital ulcer disease
HSV - herpes simplex virus
4

INTRODUCTION
INDIA
With an estimated population of 1.13 billion people, India is the second most populous
country, and the largest democracy in the world. Approximately 40 % of the population speak
Hindi, which is the major language and 80 % are Hindus (2,3). Almost 70 % of Indians live in
rural areas, but migration to larger cities increases. The people living in urban areas contribute
to more than 50 percent of the country’s Gross Domestic Product (GDP) and to 90 percent of
income from taxes (4). After the independence from Great Britain in 1947 India has made
great progress and is today one of the fastest growing economies in the world (3) and a leader
in such fields as information technology, pharmaceuticals and telecommunication. The
incidence of poverty has declined by about 10 percentage the last ten years, although it is still
high with around 30 % of India‘s population living on less than 1US $/day (World
Development Indicators, 2005) (3,5). Educational programs during the last two decades have
led to increased literacy rates with recent data of 73 % among males and 48 % among women
(3). Some of the main issues of the educational system are high dropout rates, social gap, low
participation of girls and low levels of learning achievements. For example, one World Bank
survey found that 25 % of government primary school teachers in India were absent from
work during unannounced inspections (6).
HIV/AIDS
Today, estimated 33 million people in the world are living with HIV, 93% are over 15 years
of age (7). The first case of HIV in India was reported in 1986 among sex-workers in Chennai,
which led to the constitution of The National AIDS Committee by the Indian government (8).
In 1992, India formed their first national AIDS control programme with the National AIDS
Control Organisation (NACO) to carry it through (8). The 2006 AIDS epidemic update by
UNAIDS, estimated that nearly 5.7 million people in India were infected with HIV by the end
of 2005. These numbers, compared with 5.5 million in South Africa, captured wide attention
as India now had the highest burden of HIV infected people in the world (9). At the end of
2006, new estimates released by NACO, supported by UNAIDS and WHO, indicated that
national adult HIV prevalence in India is approximately 0.36 %, which corresponds to an
estimated 2 - 3.1 million people living with HIV in the country (7). These estimates were
based on an expanded surveillance system and a revised and enhanced methodology, and
more accurate than the previous ones. For example the number of surveillance sites increased
and now covered all districts in the country. (7,10). Prevalence trend vary among different
states and regions, with the highest rates in Andhra Pradesh, Nagaland and Manipur (over 1.0
%), and Maharasthra, Goa, Karnataka, Mizoram (0.5-1.0 %) (7). Maharashtra comes on
number five, with an estimated prevalence of 0.74 % (10). Although these estimated numbers
are lower than before, HIV is still affecting a large number of people. The HIV prevalence in
India is the third largest in the world, and remains the largest in Asia (11). Heterosexual sex is
believed to be the most common way of spreading HIV. Epidemiological High-risk groups
are; FSW, MSM, IDU and STD clinic attendees (10).
5

Table 1. Estimated prevalence (percent) of PLHA among high-risk groups, India, 2006. (10,1)
FSW MSM IDU STD
India 4.9 6.4 6.9 3.7
Maharast
hra
19.6 15.6 20.4 10.0
Pune 50.0 23.6 N/A N/A
Trends among FSW in the south of India have shown a slight decline, reflecting the impact of
interventions. For MSM there is no change and for IDU the numbers are increasing.
In Pune the prevalence for MSM and FSW has increased between 2004 and 2006 (1).
Percent
Estimated HIV-prevalence among
MSM and FSW, Pune
60,0%
50,0%
40,0%
30,0%
20,0%
10,0%
0,0%
2004 2005
Year
2006
MSM FSW
Women living with HIV/AIDS (WLHA) in India
Although the overall HIV prevalence is decreasing, the percentage WLHA continues to be
around 39 % of total PLHA (10). It’s estimated that around 80-90 % of the women got
infected by their husbands (12). One problem is the “truncated epidemics”, when truckers and
migrants get infected while away from home, and in turn infect their wives when they come
home. Among antenatal clinic attendees in India, women married to men in the transport
industry had the highest burden of HIV/AIDS (1). This makes FSW and their clients an
important target population for HIV prevention efforts.
Discrimination against women is obvious already when looking at the sex ratio at birth: 1.12
boys/girls (3) as compared to Sweden 1.06 boys/girls (13).
Earlier reports suggest that condom use is gender linked, and that new ways to avoid social
traps needs to be developed. The social norm for the Indian women is that they are not
“supposed” to be sexually knowledgeable, not able to refuse sex or negotiate condom use,
which leads to little control and power in their sexual relationships, including marriage.
Promoting condom use is seen as promoting promiscuity, and the most common means of
contraception is sterilization of women, typically before they turn 30 years (14).
Since many women do not have an education and get denied from financial independence it is
not possible for them to divorce their husbands. If they leave, the poverty leads them into sex
work and thereby a higher risk behaviour (14). When infected, the woman often gets blamed
for bringing the infection into her family, especially if she got tested before the husband,
commonly during pregnancy. If a man gets infected with HIV, his wife should stay with him,
6

look after and take care of him, even if it means she is at a high risk to get infected. Women
suffer as much stigma and discrimination as their husbands, often more (15).
Stigma and discrimination
From a medical perspective, stigma leads to more severely ill HIV-positive people. The fear
of stigma dissuades people from getting tested early, which in turn lead to more advanced
stages and risk of infecting others. An HIV-infected person might fear accessing health care
and taking medicines because this will identify them as positive.
Many times the treatment centre is a separate HIV/AIDS ward, and has open charts marked
with biohazard labels. People often feel that they get judged for the past, and that the medical
staff is afraid of touching them and avoid going near if not necessary. Sometimes after an
HIV-positive patient has left the hospital, all the linen he/she has used during their stay are
burned (16). There are also reports of discrimination in forms of testing and disclosure without
the patient´s knowledge or consent. Some doctors choose to tell the relatives about the
patients positive HIV-status before telling the patient himself (16). One doctor we met with in
Pune, explained this as a way to avoid suicide. If he were to tell the patient first he/she would
commit suicide. Instead he tells the family when receiving the results and later during a few
meetings, step by step tells the patient about the disease.
HIV/AIDS is linked to already stigmatised people, for example MSM, SW and IDU. People
with HIV are seen as personally responsible and are affected because of “moral fault”. FSW
are blamed of spreading HIV to men because only their existence is the cause of spreading
HIV, not the men going to them (17). Prostitution, homosexuality and drug use are all illegal
(14). The laws contribute to stigma, harassment and discrimination, creating a sense of “us and
them“.
The stigma leads to loss of job, isolation, physical violence and negative reactions from
partners when negotiating use of condom (18).
Prevention
Rising levels of HIV among sex workers and their customers can provide early warnings of
increasing probability that the epidemic will expand into the general population. Condom use
and sexual decision are linked to gender and sexual roles. MSM easier control condom use
and are permissible to speak more open about sex (18). Other methods to avoid social traps
like this need to be developed. Studies show an increase in both condom use, as well as
refusal of customers who demand sex without condom, among FSW attending sexually
transmitted disease clinics in Pune, from 0 % to 54 % between 1998 and 2002. Men also
report using condom with FSW in a higher degree than previous years. There has been a
decline in HIV-incidence among male patients and FSW patients with STD´s, although this
has not been seen among women with STD’s who are not engaged in sex work (19,20).
ART
In April 2004, the Government of India launched the free antiretroviral treatment program in
the first eight antiretroviral treatment centres, and later 101 public sector health facilities in 28
of the 35 states. In august 2007, a total of 95,948 patients received treatment from NACO
supported centers (21). ART in governmental hospitals is initiated for PLHA with less than
200 CD 4+ white blood cells/mm3, or PLHA who have developed AIDS but has 200 and
more CD 4+ white blood cells/mm3. Special emphasis is given to the treatment of seropositive
women, and infected children with full-blown AIDS (22).
7

As the access of ART increases, so will the prevalence of HIV-infected individuals. Therefore
the need for secondary prevention efforts is crucial (18).
Pune - Budhwar Peth and Hindustani Covenant Church
With 5 million inhabitants, Pune is the second largest city in Maharashtra. It is famous for its
universities but also less flattering for being one of the most polluted cities in India, because
of its many industries and heavy transports.
A lot of people constantly move into the city, mainly to find work. Many of them end up as
sex workers in Red light district. About 6000-8000 people are living here and out of them it is
estimated that around 4000 are sex workers (SW), mostly women, but also transgenders and
men.
Saheli karyakarta Sangh (SHAKS)
Since 1991, the NGO, Peoples Health Organisation has been working with and for the FSW in
Pune. In 1998, the FSW in the area established the first, and up to today, only cooperative
organization for female sex workers in Pune, SHAKS. The vision is ‘empowerment of the
women in sex work through collectivization’. The more forward individuals were encouraged
to become peer educators and spokes persons. Today there are about 500-1000 registered
members at SHAKS. The organization has its office in an apartment located in the heart of
Budhwar Peth, and is funded by the Maharashtra State AIDS Control Society and individual
donations. Among many services, SHAKS has a drop in centre during daytime with the
possibility to get counselling, legal help from voluntary law students in Pune or just a pause
from the busy street. Here is also a community kitchen where women can buy cheap,
nutritious food or if they don‘t have any money, get it for free. During the night, the centre is
closed hence the space is shared with some of the children of the FSW, who live there on a
regular basis. Today there are 24 children living in the apartment, but sadly due to the lack of
space, many more are denied day and night lodging.
A young woman can earn her living on sex work but when she gets older she will not have
enough clients. Because of this, Saheli started sexworkers cooperative bank to get the women
to save money. Everyday they go out in the area and collect money directly from the women
to put into their savings account. Fourteen peer educators inform the women in Budhwar Peth
and nearby areas about general health, condoms, HIV and legal rights.
Social worker and counsellor Sarika R Patil, has been working at SHAKS for about a year and
believes that one of the main strenghts of the organization is the trust between the women.
They take care of each other, and help with escort to the governmental hospitals when
someone gets ill. The most common diseases seen in the area are HIV-related. PLHA get
thrown out of the brothels, and are discriminated also by the other sex workers. At SHAKS
they have approximately 100 registered HIV positive women. In the future there is a need for
more persons who are competent to educate the women, and for better facilities. They would
also like to start a restaurant (23).
National AIDS Research Institute (NARI)
NARI, which was established in 1992 to meet the growing demands of HIV-epidemic, leads
different awareness programs and are using HIV-positive speakers. The research fields are
medical, social and behavioural. The head office is in America and the organization is funded
from an American company at Atlanta CDC. There is also a main office in Delhi. NARI
works in several Indian states like Maharashtra, Tamil Nadu, Andhra Pradesh and Rajastan.
NARI efforts free treatment, nutrition and clothes for people who are ill (24).
8

METHODS
The project was conducted in Budhwar Peth, Pune. One part of it was handing out
questionnaires with a total of 46 questions (see Appendix 1), about general health, knowledge
about HIV and contraceptives. The material is presented in tables and diagrams, constructed
in Microsoft word and excel. For statistical comparisons we calculated proportions with 95 %
confidence intervals. All forms were destroyed after sampling and processing of data.
The second part of the project was open interviews containing 14 questions (see Appendix 2)
with HIV-positive female and transgender sex workers living in the area. Ten interviews with
FSW in the ages 26 to 45 years old were conducted at SHAKS. Two of the interviews with
TGSW, were held in one of the brothels, and two were performed at the HCC field office in
Budhwar Peth. The youngest respondent was around 20 years old (correct age was not noted
in this case) and the oldest 40.
The individuals were asked for their approval of participating in the study before meeting
with us, and were informed that their answers would be used in an anonymous way. We had
access to the same female interpretator during all of the interviews, and it was conducted in
Maharahti or Hindi.
Both the form and the oral questions for the interview were translated into Hindi from
English, since Hindi is the language most people know in the district. This was done to reduce
bias from interpretation directly during the conversations, or if the interpretator would be a
different person from one occasion to another.
RESULTS
It was hard to find people in the area willing to participate in the study. The main issues were
the lack of trust regarding the confidentiality and the fear of getting exposed to others as being
HIV-positive. There were also demands of getting paid to fill in the forms. After about four
weeks with little success we were asked to do a comparative study between sex workers and
non sex-workers living in the area.
Thanks to volunteers from HCC and NARI, who handed out and helped people to fill in our
forms in the area, we finally collected 113 answered questionnaires, out of 71 were answered
by sex workers and 42 by non-sex workers. All participants are living in the area of Budhwar
Peth. Three forms from the non-sex worker group were excluded from the survey, for the
reason that there were too few answers. One from the SW group was excluded, due to not
filling in the question about gender. As a result we finally had 109 forms, out of which 39
were from the NSW group and 70 were from the SW group.
In the NSW group, 2 persons were HIV positive and in the SW group, 5 were HIV positive.
Eleven of the persons who were not HIV positive in the SW group answered the question
“who they would choose to tell about their HIV-positive status”, but we assume this was a
misunderstanding of the question. Since few of the respondents were HIV-positive we did not
use that part of the questionnaire in the results. Instead we focused on following topics:
socioeconomic status, level of education, general health status, information about HIV, use of
condoms, knowledge about HIV-transmission, if tested for HIV and if they know any HIV
positive persons. Unfortunately we got only two answers from women in the NSW group
9

compared to 24 women in the SW group. In the NSW group 27 were men compared to two
men among the sex workers. The NSW group can due to this not be used as control group for
the female and male sex workers.
Age, socio-economic status and level of education among sex workers in Pune
Table 2. Age, sex worker group:
Men
n=2
Women
n=24
TG
n=44
Age 25 21-50 19-51
Average age 25 33 29
Median age 25 30 25
We also got answers from 10 not sex working transgenders (NSWTG) within an age span of
20 to 40 years with an average age of 30 years and median age on 34 years.
Table 3. Socio-economic status (percent) among sex workers in Pune
Good Fair Poor
Men n=2 0 50 50
TG n=44 0 43 57
Women n=24 0 50 50
Among the 10 NSWTG:s 80 % regarded their socio-economic status fair and 20 % poor.
There was no significant difference of the proportion being poor between the SWTG, 57%
(95% CI 43-71) and the FSW 50% (95% CI 40-60). None of the respondents defined their
socio-economic status as good.
10

Table 4. Highest level of education (percent) among sex workers in Pune:
Men n=2 TG n=44 Women n=24
Never been to school 50 11 63
Primary school not
finished
0 7 21
Primary school 0 39 8
Secondary school 50 36 8
High secondary school 0 4 0
college 0 3 0
All of the NSWTG:s had finished primary school and 80 % compared to 43 % in the TGSW
group had attended a minimum of secondary school. Any significant difference could not be
calculated due to the low number of participating NSW. Within the SW group it appears as if
the TG:s had received a higher degree of education than the women, with 84 % of the women
never attending school or not finished primary school compared to 18 % of TG:s. Neither this
could be statistically proved due to not enough material.
General health
Table 5. General health status (percent) among sex workers in Pune:
Sex
Very Poor Ok Good Excellent
workers poor
Men n=2 0 50 50 0 0
TG n=43 5 2 7 33 53
Women
n=24
4 0 25 21 50
There was a tendency towards NSWTG:s to have an excellent health status to a larger extent,
80 % compared to 53 % (95%CI 39-68) for TG:s in the SW group. Within the SW group there
is a similar pattern in health status between TG:s and women.
In the NSW group, 2 respondents reported being HIV-positive. In the SW group there were 5
persons with known HIV. Other reported illnesses among the SW were 3 with diabetes, 1 with
spondylitis and 1 with tuberculosis.
11

Table 6. Signs of depression and anxiety among a total number of 14 interviewed sex workers.
Constant thoughts about death and worries about the future 12
Persistent sad mood
Negative thoughts about life
Physical symptoms such as headaches, joint pain, stomach ache, weakness
Constant tension
Sleeping disorders
Loss of appetite
Loss of interest in talking to other people and irritability
Feelings of become ugly
Signs of fatigue
Among the interviewee, two had an ongoing tuberculosis-infection and one got treatment for
an STD. Nine of the interviewed persons reported earlier health problems, such as
tuberculosis, pneumonia, diarrhoea and malaria. All of the participants except one reported
various signs of depression and anxiety. Most frequent seen answers were ‘thoughts about
death’, ‘worries about the future’ and ‘persistent sad mood’ but they also reported many
physical symptoms, which could be explained by their HIV-infection and opportunistic
infections, but might just as well be psycosomatic. For example we met with a woman who
was terrified that she had a nail infection that would “eat up“ her fingers, without any signs
of infection when we inspected her nails. Another woman described her feelings about her
disease as “before the diagnosis she was pretty and now she has become ugly“. Especially
one of the transgender persons gave the impression of being severely depressed. She
answered the questions in a very quiet voice with very few words and showed minimal facial
mimic, was moving very slowly and only if she had to and she did not have any appetite or
desire to socialize. She did not say anything that she was not specifically asked about.
Information about HIV/AIDS
Most of the respondents had received information mostly from doctor/health worker, closely
followed by media and friends, in all three categories. All the ten NSWTG:s gave this answer.
9
4
4
3
3
2
2
1
1
12

Condom use
All the NSWTG:s, reported use of condoms every time they had sex. Most of the sexworkers,
96 %, also answered they used condom every time. Only three of them answered
“quite often” and one of these pointed out that it was always used in penetrating sex.
Knowledge about HIV/AIDS
Table 7. Believed routes of HIV-transmission (percent) among sex workers in Pune.
Shake
hands
Hug
ging
Ki
ss
intercours
e with
condom
Breast
feedin
g
Throug
h blood
During
delivery
Men n=2 0 0 0 0 100 100 100 50
TG n=43 0 0 0 2 86 98 93 69
Women
n=24
Percent
100
50
0
Information about HIV/AIDS among
sexworkers in Pune.
Women
n=23
TG n=41 Men n=2
Parent
Teacher
Friend
doctor/health worker
media
other
no info
0 0 0 0 88 100 96 79
Unfortunately the alternative - sexual intercourse without using condom, for the question
about HIV transmission, fell out during the translation from English to Hindi.
Oral
sex,
no
cond
om
All the NSWTG:s were aware of HIV transmission through breastfeeding, blood and during
delivery and 9/10 in connection with oral sex without condom. In the SW group, the women
seemed to have a slightly better knowledge about the risk with unprotected oral sex with 79 %
(95 % CI 63-95) correct answers compared to 69 % (95 % CI 55-83) among the TG:s. One
respondent in each group answered that HIV was transmitted when having sexual intercourse
with condom.
During the interviews, all four of the HIV-positive TG respondents and four out of ten women
knew the answers to the questions about HIV/AIDS. (see appendix 2 question 9-13).
The remaining six women knew some or none of the answers.
13

One of the six women knew what HIV was but not how you get it. HIV is “something you get
when you have sex without condom”, or “you get HIV if you have sex without using a
condom” or ”you can get HIV if you don’t clean your house enough“ were answers from two
of the women. A fourth woman had heard about HIV, but “wasn’t really sure about what it
was”. Two women did not know what HIV was.
Three of the six women did not know how you can tell someone has HIV, one of them said
“I can’t see on a person if he or she has HIV, can you?” and another told us that “people with
HIV are sick, have bad skin and cough a lot. That‘s how you know”. One woman told us “you
have to take a blood-test to know if you’re infected“. She had been tested positive in 1998 but
was so shocked when she got the result that she did not believe it. She convinced herself there
had been “wrong in the papers”. She got tested again two months ago and has now accepted
that she is HIV positive.
Four of the six women knew about medications that are “not a cure but make people better“.
One of the trangenders told us “the medicines here in Pune are no good, I go to Chennai to
get medicines, they also have better counselling there”.
One of the six women could give an explanation about the difference between HIV and AIDS
as HIV being the infection and AIDS when you get sick.
Reasons for HIV-testing
Percent
Reasons for HIV-testing among sex
workers.
100
80
60
40
20
0
Women
n=24
TG n=35 Men n=2
I was ill
Partner ill
Child ill
Worried that
partner was ill
Pregnancy
For info
In the NSW group, 90 % (9/10) of the TG:s had been tested for HIV. Among the SW, all
women and the both men had been tested for HIV compared to 78 % (95 % CI 64-92 %) of
TG:s. Overall main reasons for HIV-testing for all three categories of respondents in both
groups were ”illness” or “other” which was mostly specified as “for getting more info”.
14

We noted a trend that FSW got tested less often for “illness”, 38% (95% CI 19-57) compared
to 57 % of the TGSW. On the other hand we noted a trend that women were tested more often
for the reason “general info”, 71 % (95 % CI 53-89 %) compared to 43 % (95 % CI 27-59 %)
among TGSW.
Of the NSWTG 67 % (95 % CI 36-98 %) were tested because of illness, compared to 57 %
among TGSW. The latter also more often got tested for “general info”, 43 % (95 % CI 27-59
%) compared to 11 % among NSW TG.
The percentage of all sex workers knowing someone being HIV-positive was 57 % (95 %CI
46-69 %).
Living with HIV and experiences of stigma and discrimination
Only 5/70 (7 %) of the sex workers answering the questionnaires were HIV-positive. This
made it impossible to statistically prove any impact on the results of being HIV positive.
The interviewed HIV-positive TG respondents had told friends and the people around them
referred to as their family, about their HIV-positive status. For the women, seven of them had
not told anyone but the people at SHAKS about their disease. Three of them had told their
closest family.
At the question about what other people think about HIV-positive people one person told us
that ”people think that they are bad persons and think about their next life”. Another person
told us that ”people don’t have knowledge and are afraid”. Two persons told us that ”no one
talks about HIV because they are afraid”.
Nine of the persons told us about experiences of discrimination such as people saying bad
words to them, ignoring them, don’t sit with them or eat with them. Four of them were thrown
out of their homes in the brothel when the owner found out they were ill (many times with
tuberculosis) and thereby draw the conclusion they were HIV positive. Two of them were
thrown out in the middle of the night. One person told us about her lover who stole their
mutual savings and left when she told him she had been tested HIV positive. Four persons
reported no experiences of negative treatment because of their diagnosis.
The most common answer about what would improve their life, which five out of fourteen
people mentioned, was the request for mental support.
“Someone to talk to, to get more mental support would make my life better”.
“I want people to talk to me in a good way and give me a smile, not say bad things or ignore
me”. “To be able to live a normal life, counselling for me and information to people who do
not live with HIV to increase their knowledge”.
“Getting a job, I’m not a sex worker since my diagnosis and it’s hard because people don’t
employ us”. One of the respondents mentioned that her dream was to open a small shop.
DISCUSSION
Age, socio-economic status, level of education
None of the respondents had a good socio-economic status. From our experiences in the area,
that might very well be the case. The sex workers have a client turnover of 3 to 4 per day and
also have to pay a rather large part of their income plus rent to the brothel owner. There is no
15

safe way for the women to perform their work outside a brothel so the women have to accept
these conditions.
Another big problem is trafficking. Girls are taken from other Indian states and from close
countries, like Nepal, and sent to the area where they are forced to become sex workers.
Sarika R Patil at SHAKS tells us that this group of sex workers is especially hard to reach.
They are in even greater dept to the brothel owners, which makes it hard to help someone
escape.
It seems as if NSWTG:s have a slightly better socio-economic status than the men and women
who are SW. They also appear to have attended more years in school.
The TGSW:s seem to have a higher level of education than the FSW. This was not
statistically significant but correlates well with previous reports about women having poor
access to education and more than 50 % of girls dropping out of school already after
secondary school (17).
General health
A high amount of the interviewees reported signs of depression. Earlier studies have shown
similar results (25) and depression is an important issue because it not only reduces the quality
of life but is also associated with high risk behaviour and distances from health seeking.
Condom use
The high frequency of condom use at all times when having sex is very optimistic when
compared to earlier studies where 54 % of the FSW attending STD clinics in Pune reported
always using condoms or refusing sex without condom (19,20). One reason to our high
numbers could be due to selection bias or willingness to give the “correct” answers.
Sarika R Patil, counsellor at Saheli Sangh told us about a new female condom that was
introduced in May 2007 and is sponsored by NACO, thereby reducing the price from 100 Rs
to 5 Rs. It has been very well received and allows the women to take charge of their own selfdetermination
regarding safe sex. The sale has increased every month since the launching,
even though male condoms are distributed for free in the area, as a subvention from the
government.
From persons we met in the district, we also learned that the clients pay more for sex without
condom, which makes it hard for the SW to insist on it. Additionally, we have the problem
with addiction to alcohol and drugs and to earn enough money to fund the abuse (12).
Knowledge that HIV can be prevented and available free condoms, are strong predictors of
consistent use of condom for penetrative sex between FSW and their clients. One problem is
that both the FSW as well as women in the general population tend to not use condom with
husbands, regular sex-partners, or lovers (19,20).
Information and knowledge about HIV/AIDS
Information seems to be highly spread among sex workers in Budhwar Peth. It is mainly
health workers and doctors who deliver the information, but friends and media contribute. A
qualitative study of sexual behaviour after HIV diagnosis, showed that abstinence and
consistent condom use often was seen after information from doctors and counsellors. The
patients were motivated to protect themselves and others against further infections, and those
who were HIV-positive remained safe after initiating ART (18).
16

Teachers and parents have barely any role in spreading information. Schools commonly don’t
teach about STD´s and condoms because it is seen as promoting promiscuity. Ignorance
among youths leads to increased risk behavior and reaching the young people is crucial. In
every country where HIV transmission has been reduced it has been among the young the
largest changes have occurred (26).
The street based SW are harder to reach. FSW support groups, such as SHAKS, are a good
way to spread information. For the SW in the brothels, information is much dependent on the
brothel owners or madams. It is important to work with them as well. The laws against
prostitution, and running of brothels, make it more difficult to reach these people with
information (27).
Many organizations are working in the area, trying to face the huge humanitarian and social
problems. Hindustani Covenant Church (HCC) has three volunteers working in the district.
They inform about HIV and safe sex but also arrange competitions in performances like
dancing, singing and mendi painting.
The overall knowledge about HIV-transmission was high in all categories. This could reflect
the impact of prevention efforts in the area. It could also be a result of selection bias. The low
knowledge about HIV among the female interviewee compared to the high knowledge among
questionnaire-respondents supports the latter. According to Sameer Bhatkhande, one of the
field workers for National AIDS Research Institute (NARI) in Red light district, most of the
PLHA have bad knowledge about HIV/AIDS which for them often means the same as death.
We were puzzled about why one of the interviewee told us that the ART in Pune was not as
good as in Chennai. We could not find any explanation to this, but according to Sameer
Bhatkhande, “people don’t want to get listed for treatment in their hometowns, because they
are afraid of getting exposed as HIV-positive, and instead they travel far away for treatment“.
Reasons for HIV-testing
Testing frequency seems to be generally high and for both sex working and non-sex-working
TG:s the main reason for testing was illness. There was a tendency that women more often got
tested for getting general information. However, differences between all compared groups are
not statistically significant in our study due to the limited number of participants.
The results suggest that there is awareness about the disease and a willingness to protect
themselves and others. More than 50 % of the sex workers know any person with HIV.
From a medical perspective, stigma leads to more severely ill HIV-positive people. The fear
of stigma dissuades people from getting tested early, which in turn lead to more advanced
stages and risk of infecting others. An HIV-infected person might fear accessing health care
and taking medicines because this will identify them as positive.
Living with HIV and experiences of stigma and discrimination
The reported experiences of discrimination to a high degree among the interviewees are in
agreement with earlier studies (15,17). It seems as stigma and discrimination are major issues
and everyday problems for the SW in Budhwar Peth. Many of the respondents wanted more
professional counselling. This is a request also from Sarika R Patil at SHAKS. Professional
17

counselling is not only needed in the time of HIV-testing but also as a follow up of the people
living with the disease
Sameer at NARI told us about how most PLHA suffer from economic and mental problems,
due to stigmatization.
“People come late for treatment because of stigma, and they don´t open themselves. I often
meet them at a very late stage of disease”.
According to him, the main tasks for the future are to improve life for PLHA, especially the
sex-workers, and provide support groups, mental support, family support and improve peoples
lives as a whole.
Violence against women and HIV/AIDS are very much linked: rape, incest, assault, violence
in the course of trafficking, or at workplace expose them to HIV infection (28). We witnessed
one assault of a FSW where an intoxicated man tried to force her into accepting him as a
client. When she refused he hit her.
HIV-positive people are banned from entry into the society, isolated in their families, men
desert their wives, and their children are denied access to school. Many people fear physical
contact and even talking to PLHA. The association to death and belief in karma and destiny
creates feelings of shame and self-disgust and in the long run may cause anxiety and
depression (17). A study showed correlations of anxiety and depression among HIV testseekers
in Pune, regardless if they turned out to be HIV positive or not (25). It is important to
identify and take care of these individuals, not only by humanitarian reasons but also since
these conditions are linked to abuse of substances and a higher risk behaviour for HIV (15,25).
The difficulties for people when it comes to talking about HIV and AIDS told us a lot about
the situation for PLHA and the problems with stigma and discrimination. HIV-related stigma
is a great problem to action against the epidemic. Defeating stigma would not only improve
the quality of life for PLHA but also be an important part of the work against the spread of the
disease. Voluntary counselling and testing (VCT) services are important to tackling stigma
because they are often the entry for care and treatment, and at this point a lot of patients are
most vulnerable to stigma (26).
Limitations
A problem for us during the study was our questionnaire. It was constructed in Sweden before
we had any knowledge or understanding of the situation in Red light district. A better
questionnaire would contain fewer and more direct questions. It was not possible to get
acceptance from more than 5 HIV-positive sex workers to answer the questionnaire.
Therefore the questions made for PLHA were not very useful in our study.
People were afraid of meeting us and answering our questions whether they were HIV
positive or negative. This was because due to fear of being exposed as HIV-positive in the
neighbourhood and facing the consequences of this.
Making interviews in India is not at all what it is like in Sweden. Privacy is for example not
possible. This makes it so much harder for people to open up. Even if they trust your
confidentiality, they might not trust the people around or even the interpretator. We were
lucky enough to make our interviews both at the HCC-apartment and at SHAKS, which gave
a little more discretion for the respondents.
18

We also found out that a lot of students, social workers, and others from foreign countries
frequently come to Budhwar Peth, hand out questionnaires and make their projects among the
people who live there. They are probably a bit tired of this and especially when it very slowly,
if at all, leads to a better life for them.
Many organizations are established in the area and many people are working hard to change
attitudes, inform and take care of people. It is important to know the people, to establish
relationships and to build up confidence. As Sarika R Patil says about one of the major
strenghts about Saheli, “It’s a comfort for the women that the women working here also lives
in the area and will not leave”.
The SW in Budhwar Peth certainly have a hard life. It would not be possible for us, during
our stay to tell who has the worst situation, transgender or women. Taken into term that
women are more often exposed to trafficking, violence and more often have children to care
for, there is a desperate need for further efforts to enhance their situation.
Acknowledgements:
First of all we would like to thank the participants in this study, the people in Budhwar Peth
and our interpretators, Shamal and Dev Kumar. We would also like to thank all the women at
SHAKS, Sameer from NARI, Panna and Rajish from HCC. We are also very grateful to
moderator Steven David and all the people at HCC for taking such good care of us during our
stay. Finally we would like to thank our supervisors in Sweden, prof Rune Andersson and in
India, Dr Lalita Edwards.
19

REFERENCES
1. Annual HIV sentinel surveillence country report 2006,
http://www.nacoonline.org/upload/NACO%20PDF/HIV%20Sentinel%20Surveillance%2020
06_India%20Country%20Report.pdf
2. Wikipedia online: www.wikipedia.org search words: “India” (18 February 2008)
3. CIA World fact book online, India
https://www.cia.gov/library/publications/the-world-factbook/index.html (18 February 2008)
4. India's Urban Challenges,
http://www.worldbank.org.in/WBSITE/EXTERNAL/COUNTRIES/SOUTHASIAEXT/INDI
AEXTN/0,,contentMDK:21207992~pagePK:141137~piPK:141127~theSitePK:295584,00.ht
ml (18 February 2008)
5. Country Health System Profile - India (18 February 2008)
http://www.searo.who.int/LinkFiles/India_CHP_india.pdf
6. Missing in Action: Teacher and Medical Provider Absence in Developing Countries,
Human Development and Public Services Research,
http://econ.worldbank.org/external/default/main?theSitePK=477916&contentMDK=2066121
7&pagePK=64168182&piPK=64168060
7. AIDS epidemic update 2007, India,
http://data.unaids.org/pub/EPISlides/2007/2007_epiupdate_en.pdf
8. About NACO, http://www.nacoonline.org/About_NACO/
9. AIDS epidemic update 2006, India,
http://data.unaids.org/pub/EpiReport/2006/2006_EpiUpdate_en.pdf
10. HIV sentinel surveillance and HIV estimation, 2006,
http://www.nacoonline.org/upload/NACO%20PDF/Note%20on%20HIV%20Sentinel%20Sur
veillance%20and%20HIV%20Estimation_01%20Feb%2008.pdf
11. HIV data, http://www.nacoonline.org/Quick_Links/To_Read_More/
12. www.aarogya.com/conditions/communicable/aids/articles
13. CIA World fact book online, Sweden, https://www.cia.gov/library/publications/the-worldfactbook/geos/sw.html
14. HIV in India - a complex epidemic, The New England Journal of Medicine 2007;
356 (11):1089-1093.
15. The third phase of HIV pandemic: social consequences of HIV/AIDS stigma and
discrimination & future needs, Nita Mawar et al, Indian J Med Res 2005; 122: 471-484
16. VS Mahendra et al; Understanding and measuring AIDS-related stigma in health care
settings: A developing country perspective (2007)
17. Stigma and discrimination faced by women living with HIV/AIDS, section 6.14:
Formative research report 2006, PRASTUT consulting,
http://www.breakthrough.tv/pdf/FinalBaseline.pdf
18. Sexual behaviours of individuals living with HIV I south India: a qualitative study
AIDS Education and Prevention 2007; 19(4): 334-335.
19. Correlates and trend of HIV prevalence among female sex workers attending sexually
transmitted disease clinics in Pune, India (1993-2002) JAIDS 2006; 41(1): 107-113
20. Declining HIV incidence among patients attending sexually transmitted infection clinics
in Pune, India JAIDS 2007; 45(5): 564-569.
21.
http://www.nacoonline.org/upload/Care%20&%20Treatment/Number%20of%20patients%20
on%20ART%20as%20on%20August%20'07.xls
22. NACP-III, treatment,
http://www.nacoonline.org/National_AIDS_Control_Program/Treatment/
20

23. http://www.sahelipune.blogspot.com/
24. http://www.nari-icmr.res.in/about.html
25. Sahay S, Phadke M, Brahme R, Paralikar V, Joshi V, Sane S, Risbud A, Mate S,
Mehendale S. Correlates of anxiety and depression among HIV test-seekers at a voluntary
counselling and testing facility in Pune, India. Quality of life research 2007; 16: 41-52. DOI
10-1007 s. 11136-9112-1
26. Peter Piot and Awa Marie Coll Seck: International response to the HIV/AIDS epidemic:
planning for success. Bull World Health Organ 2001; 79. (12) Genebra, p 1106-1112, ISSN
0042-9686
27. Dandona R, Dandona l, Gutierrez JP, McPherson A, Samuels F, Bertozzzi S;
High risk of HIV in non-brothel based female sex workers. Published online 2005 august 20.
BMC Public Health 2005; 5; 87 DOI 10.1186/1471-2458-5-87
28. http://www.nacoonline.org/Quick_Links/Women/
21

APPENDIX 1
Questionnaire
Presentation
We are two Swedish medicine students who are conducting a research project during six weeks in Pune. The
main focus of the project is to get a general picture of the situation for HIV-positive patients in the city. What
kind of medical help is available? Are there any help organisations or supporting groups? Which are the main
problems in everyday life? The aim of the project is also to investigate the level of knowledge among patients
about their disease. Finally we want to investigate the attitudes towards contraceptives.
Participation in our project is voluntary. The questions will be posed in writing and orally. Answers are totally
anonymous and you are free to decline at any point. The results will be presented in a way that no individual
patient can be identified.
Short questions
Age:
Sex:
Civic status:
Married
Long term relationship
Single
Divorced
Widow/Widower
How many children do you have?
Do you live together with your family?
Yes No
Work / education
Level of education:
Never been to school
Primary school not finished
Primary school
Secondary school
High school
University/College
Social history:
Employed
Self employed
Not employed
Student
Disability pension
Woman: Man: Transgender:
22

Other grant, please specify: _______________________
What profession / employment / occupation do you have?
Socio-economic status:
Good
Fair
Poor
Health
Do you have any diseases?
Yes No
Which diseases?
Do you take any medicines? Yes No
Against what?
Do you feel healthy? Yes
Yes
If not, what symptoms do you have?
How would you describe your general health status?
Very poor 1 2 3 4 5 Excellent
Have you ever been paid money for sex?
Yes
No
No answear
Have you at any time injected narcotic drugs?
Yes
No
I don´t know
Have your partner at any time injected narcotic drugs?
Yes
No
I don´t know
General about HIV
Have you ever had any information about HIV?
Yes No
In what way?
From a parent
From a teacher
From a friend
23

From a doctor or health worker
From media, like newspaper or television
Other
Please specify:
Contraceptives
Who do you think has the largest responsibility to make sure a condom is used during heterosexual intercourse?
The man
The woman
Both have equal responsibility
Why?
How often do you use condoms when you have sex?
Every time:
Quite often:
Sometimes
Never
If you do not use a condom, why? Tick one or more boxes.
I can not afford it
It is hard to find condoms
They do not work, or they brake
It is embarrassing to acquire condoms
Other, please specify
Are condoms a good choice of contraceptives? Yes No
Why / why not?
Do you use other contraceptives? Yes
No
What sort do you use?
Are there any contraceptives that protect against HIV? Yes No
If so, which?
If you have a regular sexual partner, has he/she been tested for HIV?
Yes
No
I don’t know
How many sexual partners have you had in the last six months?
None
One
A few
Several
I don´t know
24

How do you think HIV is transmitted? Tick one or more boxes.
Shaking hands
Hugging
Kissing
Sexual intercourse with condom
Sexual intercourse without a condom
Breastfeeding
Through blood (transfusion, sharing needles, open wounds)
Mother to child during pregnancy or delivery
Oral sex without a condom
Is there any other ways to get infected by HIV?
Please specify:_____________________________________
Living with HIV
When were you diagnosed HIV positive?
Less than 6 months ago
6 months- 1 year ago
1-2 years ago
2-5 years ago
More than 5 years ago
13. Why were you tested for HIV? You can tick one or more boxes.
I was ill
My partner was HIV positive
My child was HIV positive
Worried that my actual partner was infected with HIV
Worried that previous partner was infected with HIV
I was pregnant
Other, please specify: _____________
Was it a difficult step to take? Please specify below:
Very difficult 1 2 3 4 5 Not difficult at all
Do you know how you became infected?
Yes No
Is there someone else in your family who is HIV-positive?
Yes
No
I don´t know
Do you know anybody else who is HIV-positive?
Yes
No
I don´t know
Who have you told that you are HIV positive? You can tick one or more boxes.
Steady sexual partner
25

Casual sexual partner
Mother
Father
Sister or brother
Children
Friends
None
Other, please specify: _____________
If you choose not to tell someone that you are HIV positive, what are your reasons? Tick one or more boxes.
I am afraid my partner would leave me
I am afraid my partner would not be intimate with me
I am afraid my family would leave me
I am afraid I would lose my work
I am afraid I would be discriminated against
I feel ashamed that I have HIV
Nobody else needs to know
Others, please specify: _____________
Do you know about any organisation / group where HIV-infected people can meet?
Yes No
If yes, please specify:
Are you afraid of infecting someone else?
Much afraid 1 2 3 4 5 Not afraid at all
If so, what specific efforts do you make to avoid this?
No effort
Yes
If yes, please speicfy:
How often can you afford to go to the clinic?
I can barely afford the monthly controls
I can afford the monthly controls
I can afford the monthly controls, and as well visits to the hospital if something unexpected happens.
How do you come to the clinic?
I walk
By bus
Someone drives me
I drive my own car
Other, please specify:__________________
Thank you very much for your participation,
Ingrid Gerdin and Sofia Myhrman
26

APPENDIX 2
Questions during the interview
1. Age
2. How has your life changed
since you got your diagnosis?
3. Does anyone around you
know about you being HIVpositive?
4. What is the problem about
living with HIV?
5. What is the generall opinion
about HIV-infected people?
6. Have you ever experienced
any discrimination/negative
treatment because of your
disease? If so, in what way?
7. Do you get any help and
support? In what way? By
whom?
8. What do you fear about your
disease?
9. What is HIV?
10. How do you get HIV?
11. How can you know that
someone has HIV?
12. Is there any cure against
HIV? If so, what?
13. Is there any difference
between HIV and AIDS? If so,
what is the difference?
14. What would make your life
better?
27