Living with AIDS in Orissa

[Guest guest]

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 members.

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 and

worms.

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 sensitisation.

* Names changed to protect identity

--By Patnaik ( Bhubaneswar-based journalist.)

Source: ( InfoChange News & Features, October 2003)

http://www.infochangeindia.org/features132.jsp