Living with AIDS in Orissa
.By Elisa Patnaik
People with HIV/AIDS in Orissa are ostracised and mistreated
by their families, community and the medical fraternity. These
conditions have prompted the formation of Orissa’s first
registered association of people living with AIDS, the Kalinga
Positive People’s Association.
“I wish I had died immediately after testing positive for
HIV/AIDS rather than have to undergo such disgrace, pain and
trauma. This is much worse than death,” weeps Basanti Jena*
recalling her ordeal at the hands of her family and community
When 33–year–old Jena, who lives in a village near Aska in
Orissa, tested HIV–positive she was driven out of the house,
locked up in the family goatshed, denied adequate food and basic
amenities. She was finally rescued by a local NGO working with
HIV/AIDS. By then, she was delirious, and infested with ticks
When plumber Jadu Behera travelled to Surat from his native
village in Orissa’s Ganjam district in search of better
employment opportunities, he contracted HIV/AIDS from a local
sex worker and returned to his village fearing ostracism from
his fellow workers. Later, following AIDS–related complications
(ARC), Behera sought medical help at hospitals in Berhampur. But
he was repeatedly turned away. Ill–treatment from his family and
exclusion from the community finally pushed him to suicide.
Ostracism, humiliation and mistreatment at the hands of family
members, community and the medical fraternity are increasing in
Orissa. But there is not a single organisation offering care and
support to people living with AIDS (PLWHAs) in the state. The
lack of adequate medical care, treatment facilities and
socio–economic support from families and the community has
driven many patients to despair and suicide.
Cases of PLWHAs being denied treatment at both government and
private hospitals are not uncommon in Orissa. Recently, a
patient with full–blown AIDS from a village in Bhubaneswar
district was brought to a city–based NGO by relatives and
abandoned there. When the NGO shifted the patient – who was
already showing signs of AIDS–related complications – to the
largest government hospital in the capital, they met with stiff
resistance from everyone from the wardboy to the doctor. The
hospital authorities gave in only after persistent requests and
threats from the organisation.
Though the National AIDS Control Organisation (NACO) has laid
down specific guidelines for the institutional care and support
of PLWHAs, Orissa State AIDS Cell (OSAC) officials claim that
“such specifications are mandatory only when a state has been
declared to have a high prevalence (of AIDS)”. According to
officials, since Orissa is a low–prevalence state the emphasis
is more on prevention.
According to conservative OSAC estimates, Orissa has nearly
2,000 HIV–positive cases, accounting for a .01% prevalence rate.
However, voluntary organisations working in the field of
HIV/AIDS feel that the number of patients in the state is
increasingly rapidly. Their estimates put the count at more than
8,000. Experts believe that it is irrational and unwise to wait
for Orissa to become a high–prevalence state before establishing
a reliable care and support programme for PLWHAs.
Orissa’s first registered association of PLWHAs, the Kalinga
Positive People’s Association, has recently been formed in
Ganjam district by Aruna, a voluntary organisation working in
the field. “After rescuing a number of HIV/AIDS patients from
dire situations we finally decided to initiate a common platform
to address their problems,” says Aruna’s Loknath Mishra.
With more than 100 members, the Association has been fighting
for the rights and dignity of PLWHAs in the state. Nearly all
its members either suffer periodically from ARC or full–blown
AIDS, with diarrhoea, continuous weight loss, cough, loss of
appetite, multiple infections, tuberculosis and low–grade fever.
Medicine, nutritious food, treatment, regular counselling and
the mobilisation of family support are what is required. “Unless
we address all these issues and needs specifically, we cannot
ensure the active participation of PLWHAs,” explains Mishra.
The occupational rehabilitation of both infected and affected
persons is another important challenge for the Association.
Low/negative awareness, myths and misconceptions, and the fear
of ostracism prevent many people in Orissa from even reporting
their HIV–positive status. “They are willing to confirm their
status only after symptoms appear. But we feel that the
Association will be strengthened only after involving more
positive people at the HIV stage because of their (comparative)
physical fitness and comparatively longer life than persons in
the ARC stage,” says a concerned Mishra. Four members of the
Association died within a month.
Although people join the Association with high expectations, the
Kalinga Positive People’s Association finds it difficult to meet
all their needs with limited means and support.
Thirty–two–year–old Malati Beuria who contracted the virus from
her husband, joined the Association after her husband’s death in
the hope of rehabilitation and financial assistance. She and her
10–year–old daughter were driven away from her parents’ and
in–laws’ houses. “The Association helped us in many ways,” she
says, “but I still do not have a steady source of income and I
worry about our future.”
A possible remedy, many believe, is mass awareness and
*Names changed to protect identity
(Elisa Patnaik is a Bhubaneswar–based journalist)