new report issued by UNAIDS and the WHO, in advance of World AIDS Day
on December 1, says that the global AIDS epidemic is showing no signs
of abating. Five million people became infected with HIV worldwide and
3 million died this year alone, the highest ever.
World AIDS Campaign this year focuses on combating HIV-related stigma
and discrimination. UN Secretary General Kofi Annan said in his World
AIDS Day message, "We must keep AIDS at the top of our political and
practical agenda. That is why we must continue to speak up openly
about AIDS. No progress will be achieved by being timid, refusing to
face unpleasant facts, or prejudging our fellow human beings -- still
less by stigmatising people living with HIV/AIDS. Let no one imagine
that we can protect ourselves by building barriers between ‘us’ and
‘them’. In the ruthless world of AIDS, there is no us and them. And in
that world, silence is death. On this World AIDS Day, I urge you to
join me in speaking up loud and clear about HIV/AIDS. Join me in
tearing down the walls of silence, stigma and discrimination that
surround the epidemic. Join me, because the fight against HIV/AIDS
begins with you."
attached to HIV/AIDS leads to discrimination against infected people
and their families. The resulting silence and denial of the problem
hampers prevention and care efforts. It marginalises the infected as
well as affected. People Living With HIV AIDS (PLWHA) internalise the
stigma and this has a devastating impact psychologically.
Tamil Nadu Coordinator of the Positive Women’s Network and head of a
team that recently investigated the socio-economic effect of HIV/AIDS
on PLWHA in Tamil Nadu, "Discrimination is a major challenge in the
fight against AIDS. Apart from victims losing jobs and livelihoods, it
also leads to depression, a lack of motivation, helplessness and
Nearly 40% of
the countries that have signed the Declaration of Commitment on
HIV/AIDS (adopted at the UN General Assembly Special Session on
HIV/AIDS in 2001) have not yet adopted legislation to prevent
discrimination against PLWHAFear of discrimination often prevents
PLWHA from seeking treatment. Some 70% of HIV/AIDS patents in India
said they had faced discrimination, most commonly within families and
in health-care settings, according to recent International Labour
Organisation (ILO) research.
The ILO study,
covering Tamil Nadu, Maharashtra, Delhi and Manipur, found that the
key reasons for the pervasive feeling of discrimination are neglect by
the family, denial of treatment by the medical fraternity, shunting to
other hospitals, blackmailing by the employer who may threaten to
disclose the HIV status, physical and verbal abuse, accusations of
spreading the virus, moving away when the infected person passes by,
exclusion from social gatherings and being asked to leave the place by
other occupants. Commonly told untruths, particularly to protect
children from the stigma, include saying that the infected individual
is suffering from jaundice or cancer or tuberculosis.
more discrimination as compared to men. In this study covering 292
respondents in the four key states, about 74% of women mentioned that
they faced discrimination as against 68% of men. In general, a woman
does all the household chores and manages the family. Paradoxically,
it was the family which discriminated against her the most. About 23%
of women were discriminated against by family (as compared to 19.82%
of men). A similar trend was observed in the context of neighbours,
educational institutes and community per se. However, at hospitals,
men faced more discrimination. But, as Kousalya confirms, "It could be
because women tend to visit hospitals less."
Says Dr Suniti
Solomon, chief of YRG Care, a leading research establishment and the
woman who documented the first HIV+ case in India, in 1986,
"Discrimination cuts across classes and communities. This is
particularly so concerning women. I notice this often in our
counselling sessions. A couple, both doctors, had discovered that the
man was HIV+. His wife was still in the window period. He did not want
his mother, who was waiting outside in the reception area, to be
informed because the older woman was a heart patient, or so he said.
But she (the wife) was weeping and begging that I, as their doctor,
inform her mother-in-law or else it would be assumed that she had
infected her husband and not the other way around."
Some of the
sample responses that emerged from the study:
A woman from
Tamil Nadu said, "The remarks made by the hospital staff made me feel
said, "The doctor asked my spouse to administer injection and saline
fluids on his own."
A third woman
recounted how, "the hospital staff has given us a yellow card so that
people can easily identify us as HIV+."
A man from
Delhi said, "After my family knew about my HIV status, they
immediately kept my glass, plates, clothes etc separate and I was
given a separate bedroom."
In a case from
the town of Karur, a man was brought into a hospital for emergency
neurosurgery. The surgeon, finding out about his ‘high risk’ status,
called for a blood test before beginning the surgery. The report was
negative but the patient was dead before he could be helped. In the
city of Coimbatore, when a young motorcycle accident victim was rushed
to a private hospital, he was found to be HIV+ upon a blood test. This
hospital, and the one he was taken to next, turned him away. He was
brought to Chennai after a facility which would accept him was found.
By this time, 48 hours had lapsed and it was too late to save him.
are not spared the stigma associated with HIV/AIDS. In Kerala, two
orphaned HIV+ siblings Bency and Benson were banished from their
school in 2003, and then refused admission to other schools. Despite
the efforts of the President of India and AIDS activists to dispel
misconceptions about AIDS within the community, the children were
forced to receive school lessons and write exams at home.
"A hospital is an institution which is supposed to provide treatment
and care. It is the place that one associates with providing care and
support to the sick. However, when discrimination takes place even in
a hospital, one’s faith in the system is totally shattered."
respondents even revealed instances where their HIV results had been
published in the local newspapers along with their names.
She adds, "In
focus group discussions we found that hospital staff often presumed
that if one partner is positive, the other is too. So, not only the
infected person but also the affected persons are discriminated
against. Sometimes, they are even denied treatment."
are even more vulnerable -- doctors refuse to perform Caesarian
sections or help with deliveries. This is despite the fact that,
compared to hepatitis, the chances of doctors contracting HIV from a
patient during an operation are not very high. The global figures
stand at 0.3 to 0.5%
working population in India, defined as anyone seeking employment,
falls in the 15-49 age group. Around 89% of the reported HIV cases
affect this age-group, highlighting the risk it poses to the
economically active segment of society. About 92% of the workforce is
in the informal sector, which is characterised by low productivity,
income levels and poor social protection. The ILO study says this
sector is particularly vulnerable to HIV. With an estimated 3.97
million HIV+ people (2001 figures), India has become the nation with
the second-largest number of people living with HIV/AIDS after South
Africa. Estimates show that roughly one out of 10 HIV+ persons in the
world is an Indian. Given the country’s huge population, even
low-prevalence rates indicate a large number of people living with
AIDS. It is now known that the epidemic is no longer confined to the
high-risk groups of sex workers, migrant workers, truck drivers and
injecting drug users, but has blanketed the general population.
Solomon, "We have set up Community Advisory Boards to bridge the gap
between researchers and participants, to create long-lasting working
partnerships in HIV/AIDS-related projects. First set up in 2000, CABs
have representation by various community groups, women in sex work,
IDVs, MSMs, community women, religious leaders, psychiatrists,
gynaecologists, professionals like accountants and lawyers and
representatives from NGOs. This way we can discuss the social,
political, medical, legal, ethical and religious issues surrounding
research. Discrimination overlaps into all these territories."
Ratna, one of
the case studies in the ILO report, is now separated from her family
and living alone. Her husband looks after their six-year-old daughter.
She holds a post-graduate degree and works as a counsellor at the
Positive Women Network. She came to know of her HIV+ status while
donating blood for an emergency case at the hospital where she worked
as a lab technician. She did her own HIV test. Soon her husband
revealed her status to the community, her relatives in her hometown
and the government organisation where she worked. As a result, she
lost her job and experienced severe negative reactions from her
family. Now, since she is part of the network, she is open about her
HIV status and has gone public in voicing issues affecting PLWHA. This
has facilitated a supportive environment and helped in
self-empowerment. Since she is alone, her current income of Rs 4000
per month satisfies her basic needs. But access to Anti-Retroviral
Therapy is a cause for concern. Additional expenditure on medicines
and tests poses a burden she cannot afford. Also, she longs to be with
her husband and daughter.
The ILO study
comments that discrimination from the larger community can be expected
to an extent but not from the immediate family or medical fraternity.
This is especially true for sites like Imphal and Churachandpur where
almost every family has one member who is HIV+. A startling 82.1% of
the respondents there said they faced discrimination on account of
their HIV+ status from their family, from the medical fraternity or
neighbours. This figure is troubling because over the last five years
or more, different agencies (government, international and NGOs) have
been conducting numerous campaigns to sensitise the public on HIV. The
attitude of the medical fraternity in terms of the discrimination
experienced by PLWHA is inexplicable, says the study.
But, says Dr
Srikrishnan, a senior researcher with YRG Care, "It is not as if the
educated elite are any more understanding. When a newspaper published
an article based on a report we had published, the residents of the
building our office occupies turned cold and tried to get us evicted.
Till then, they had not known that we were doing AIDS-related work.
This is happening in an upmarket locality of Chennai. In fact, our
experience shows there is greater honesty and acceptance among the
underprivileged who do not come with the additional factor of
‘reputation at any cost’."