Abstract

HIV / AIDS has emerged as most formidable public health

problem. It is an important cause of death across the world and it is
estimated that every minute one in every five youth (15 - 24 years) is
infected with HIV. India is among the most affected nations in terms of
HIV / AIDS. Since this epidemic mostly affects the youth in their
productive and reproductive years, it poses a serious challenge to
economic production and growth in developing countries like India. This
makes it imperative that an effective policy is formulated for controlling
the epidemic. There is need to identify such factors that could prevent the
effective implementation of such a policy. It has been found that stigma
and dissemination against the HIV / AIDS patients in the family,
community, work place and health sectors. Prevent them from the
effective implementation of the policy for controlling the disease. Thus,
proper measures for the rehabilitation of HIV / AIDS patients are
necessary because this is one crucial factor which prevent the detection
and control ofHIV/AIDS.

AIDS an acronym for "Acquired Immunodeficiency Syndrome" is

the life threatening disease. It represents the late clinical stage of infection
with a virus called HIV (Human Immunodeficiency virus). A person
infected with virus is called HIV positive and he may look healthy but can
at this point infect others if his body fluids (most commonly sperm,
vaginal fluids, breast milk) are transferred to another person. After this
initial stage of HIV infection there is period varying between eight
months and a decade (more shorter for children) when there is no
symptom of nay illness until the on set of full blown AIDS.

Since AIDS has no specific symptoms of its own until very lat in
the disease but only decreases the persons immunity the person had no
clue that he has contracted the infection until "opportunistic infection"
start occurring. Full blown AIDS is marked by major symptoms like
weight lose (over 10 percent) chronic diarrhea (persisting over one
month) and a few minor symptoms like persistent cough in the absence of
known causes of immune suppression or other recognized etiology. Thus,
AIDS is the name given to this late stage of HIV infection in which there
is evidence of significant impairment to the immune system. The term
HIV / AIDS frequently used because the illness is best understood as a
continuum from initial infection to the opportunistic infection.

While there is no cure for HIV / AIDS the only therapy shown
conclusively to stem the progress of AIDS is called ART. Art consist of
three antiretroviral drugs mixed together to prevent drug resistance that
bring down the viral load, boosts the immune system and delays further
damage to it, and hold out of real possibility of improving the quality of
life and longevity of those already infected. Since the disease is itself
incurable, ART is a life long treatment. Essentially, it enables the patients
to manage the disease just as any other incurable and chronic
degenerative disease such as diabetes or Alzheimer's disease.

The cause of AIDS is HIV virus, which is not transmitted through

the air, casual contact, by insects, by food and water. HIV lives in high
concentration in certain body fluids. If these fluids in an infected person
come into contact with the blood of another person, this person is at risk
of becoming infected with HIV. In India, the mode of transmission is
mostly through heterosexual relationship (85.76%) and only minority
infected by prenatal route (3.58%), blood transfusion (2.03%) and by
syringe (2.55%). The consequences of HIV / AIDS are not visible in
India. The cumulative effects will be visible in India only after one or two
decades. The slow evolution of the impact of HIV / AIDS makes it worse
than other epidemics. Though the long term consequences of HIV / AIDS
are only just being recognized in developing countries like India. It is
clear that it will have multiplies effect that not only for families and
communities but also for the demography and economy of these
countries.

The mode of transmission and the consequences of HIV is such

that AIDS and such that it has spread quickly and it is likely to become a
serious challenge to public health in all countries.

In 1982 public health officials in the United States began to use the
term "Acquired Immunodeficiency Syndrome" or AIDS to describe the
occurrence of opportunistic infections. Formal tracking (surveillance) of
AIDS case began that year in the United States. The spread of HIV /
AIDS is such that an estimated 38.6 million (33.4 m - 46.0 million)
people world wide were living with HIV in 2005 and an estimated 2.8
million (2.4 million - 3.3 million) lost their lives to AIDS. In India the
first serologically confimied HIV infection was detected in 10 of 102
FSWS tested in Madras in February 1986 and first AIDS case was
reported in May 1986 - about years after AIDS became clinically evident
in USA and Europe. India is the second most populace country in the
world but now is going to become second AIDS capital of the world.
While the number of HIV infected people in India was just 0.2 million in
1990 but the figure has risen to 5.2 million in 2005. Similarly, the number
of AIDS cases in country has risen from 102 (in December 1992) to
103857 (in March 2005). In Delhi the first AIDS case was reported in
year 1988 and the number of AIDS cases has risen from 45 in 1993 to
2592 in January 2006.

The present study deals with the problems of rehabilitation of

people living with HIV / AIDS (PLWHA) in Delhi. Delhi has been
selected universe of study because as the capital of India, it occupies a
prominent place as the industrial and commercial hub of North India. The
presence of migrants CS workers, street children, intra venous drug users,
truck drivers and transport worker and refugees, many of whom are poor
and illiterate, makes Delhi highly vulnerable to HIV / AIDS. The
problems of rehabilitation of HIV / AIDS patients has hitherto remain
unexplored and so there is need for exploratory research design.

Sellitiz, Jahoda and Cook have suggested the procedure of

exploratory research as consisting of the following three stages.

1. The Survey of Literature: In this study this includes

designing rehabilitation in the context of HIV / AIDS
patients and explaining the dimensions of rehabilitation.

2. The Experience survey: In this study such experience

person in the area like counselors, directors of NGO's and
social workers and concerned government officers who are
likely to give insights into the problem under investigation
are key informant. The knowledge and experience of the
key informant was collected through conversation with
them on the area of their specialization.

3. The analysis of insight stimulating examples: This was

followed by the intensive study of selected case of
individual using semi structure, in-depth interviews,
schedules and participant observation to describe the
experiences of PLWHA in order to capture the problems of
rehabilitation within the family, friend circle, community,
work place and in the health sectors.

There are three community care centers run by NGO's which are
attached with Delhi government in which there were hundred and fifty
beds of which 90 were occupied by HIV / AIDS patients. 25 cases were
selected from these care centers for the purpose of conducting case
studies with the help of key informant.
Objective of the study:

Objective of the study were as follows.

1. To study the pattern of spread of HIV / AIDS in Delhi.

2. To study government policies for rehabilitation of HIV /

AIDS patients in Delhi.

3. To examine the problem of HIV / AIDS patients in getting

care and treatment at hospitals in Delhi.

4. To examine the role of NGO's and its services for

rehabilitation of HIV / AIDS patients in Delhi.

5. To examine the discrimination of HIV / AIDS patients in

Delhi in their families, friend circle, community and
coworkers at work place.

To suggest guidelines and policy implication for an action strategy for the
effective rehabilitation of HIV / AIDS patients.

The present study deals with the problem of the rehabilitation of

HIV / AIDS patients in Delhi. While prevention of HIV / AIDS remain a
high priority, there is great challenge in comforting the need for
rehabilitation of people living with HIV / AIDS. The rehabilitation of
HIV / AIDS patients has two dimensions.

1. Provision of care, treatment and support which is largely a

medical dimensions. Since care and treatment needs are
expanding rapidly, the current treatment facilities can
provide service to only small percentage of HIV / AIDS
patients. Therefore, it is necessary to make provision of
comprehensive HIV / AIDS care and treatment which
integrates the existing health infrastructure consisting of
 care center run by NGOs, drop - in - center, public health
facilities, private clinic and network of PLWAH. This
system of care and treatment must be link to support system
through counseling and testing centers. These counseling
and testing center will provide a supportive environment for
HIV / AIDS patients so that they remain in the main stream.

2. Adjustment within the family, community and work place,

which is a social dimension. It goes without saying that HIV
/ AIDS is as much a social concern as a medical concern
because the disease is also associated with stigma and
discrimination against HIV / AIDS patients. They face
discrimination in family, community, work place and health
sectors when they need support the most.

Few important observation emerge from the case studies when the
treatment is sought from a government hospital the patient incur
substantial expenditure, though less than the amount spend while seeking
treatment from a private doctor. Almost all the HIV / AIDS patients first
consulted a private doctor for treatment of these infection and spend a
considerable amount of money on the treatment which in some cases led
to the selling of their asset such as house or shop, mortgaging of land,
selling of ornaments and borrowing of money from relatives or friend. In
private clinic they have to spend money on every thing including doctors
fee, bed charges, medicine, diet, blood test and blood transfusion. In a
government hospital money is spent on transport, costly medicine are not
available in the hospital. Blood test for CD4 count and tips to hospital
staff for getting care and treatment. Even though the expense in the
government hospital were less, the cases reported that there is stigma and
discrimination one reason for this is that in most cases they enter in the
government hospital after confirmation of HIV positive status and the
result of the test is not kept confidential as under rules. The other reason
is that a private doctor always refers patients who are suspected to be HIV
positive to government hospital and are not under any obligation to treat
them as doctors in government hospitals. The discrimination in the
government hospital takes many forms such as denial of bed facilities or
early discharge on the pretext of over crowding, facing isolation in the
ward with separate arrangement of bed in gallery or corridor, refusal to
touch the patients for taking blood pressure or temperature, scolding and
shouting at the patients to keep them at a distance, restricting their
movement around the ward and neglecting them and not attending to their
needs.

It is because of this stigma and discrimination faced by HIV /

AIDS patients and the money spend in government hospital that they go
to community care centers run by NGOs. They go there on the advice of
their friends or relatives or volunteers of NGOs who also tell them that
they will spend much less in such centers than government hospitals.
These care canters provide free diet, free medicine and rent free
accommodation. They also get free regular check up but they have to pay
Rs. 1200 for CD4 count, which is necessary for proper medication of
patients. All the cases of HIV / AIDS patients reported that there is no
stigma and discrimination against them in these care centers and they are
treated as family members. The staff of the care center is very
cooperative, sympathetic and supportive and includes a few HIV positive
persons who are employees of the care center. These care center
especially cater to the needs for care and treatment of only HIV / AIDS
patients.

The initial reaction of the spouse and family members of these case
of HIV / AIDS patients who revealed their status was of shock,
embracement, anger, misunderstanding and disbelief. Later on in most
case studies the attitude of spouse and family members of HIV / AIDS
patients changed and they give care, support and sympathy. There are few
cases of HIV / AIDS patients faces physical isolation at home form
family members and relatives such as separation of sleeping arrangements
and utensils. This discrimination may be because families with infected
members find that expenditure increases, as the person requires medical
and special diets. AIDS places new often unaffordable demand on
resources and time, which quickly result in depletion of family income
caring capacity of family saving and assets. In addition, the social stigma
and discrimination against these families by the community fiirther
exacerbates their economic hardship and accounts for the discrimination
against infected members. There were also few cases of HIV / AIDS
patients who have not disclosed their status to their families and the
reason they give is the fear of being rejected, neglected, insulted or
scolded by family members.

It has been seen that more women are being discriminated against
as compare to men. Wives and daughter-in-laws experience higher level
of discrimination than son. This shows that women bear the brunt of HIV
infection and they are the most adversary affected psychologically and
socially. They do not get much cooperation for getting treatment and care
when they have to get treatment, no one accompanies them. One thing
that comes out in most of the case studies is that the daughters-in-law are
treated much worse than the sons and there is no space in the family and
share in family property for them, if the son dies. These widows get
shelter in their parent's home if their parents are alive and have control
over the family affairs. The parents are actively involved in care giving
and in providing financial and material support for widows with HIV and
in most cases they also bear the burden of bringing up their grandchildren.

The reaction of friend / community to those cases of HIV / AIDS

patients who revealed their status is mostly of stigma and discrimination
such as refusal to shake-hands, avoiding setting hear them, not having tea
or food with them teasing and ridiculing them. Negative community
reactions towards (PLWHA) arises also from questionable character of
the PLWHA apart from their HIV status. It is this fear of ostracism,
isolation, social boycott and rejection which prevent HIV / AIDS patients
from disclosing their status to friend / community they feel that revealing
their status would adversely affect the reputation of family and the
marriage and job prospects of its other family members. The negative
reaction of the community is not only against HIV / AIDS patients but
also their families. Till the death of their parents and those who take care
of HIV / AIDS patients. The family members feel avoidance and rejection
by neighbors and the staff who care for HIV / AIDS patients are also
regarded with distrust and suspicion.

In the work place stigma and discrimination against cases of HIV /

AIDS patients operates in form of forcible resignation or retirement or
going on long leave or forcing dismissal. It is because of negative attitude
that HIV / AIDS patients in most cases do not reveal their status at the
work place.

Stigma and discrimination against HIV / AIDS patients is not there

only in their lifetime but also continue even after their death. The death of
the HIV / AIDS patients creates many problems for the care center or
hospital staff, in some cases there is no family member to take care of
dead body. Even when there is family member, in most cases they do not
want to take it back home for cremation because the stigma attached with
disease will adversely affects the rejection of the family. So they want to
cremate the body in Delhi itself and they leave it for the care center or
hospital staff The government gives only Rs. 500/- for cremation of the
dead body of HIV / AIDS patients and this amount is not sufficient even
for transporting the body to the cremation ground. Stigma and
discrimination take such form as refusal to lift the body after death not
giving transported facilities as well as the facilities to keep the dead body
in a mortuary, denial of the use of common cremation ground and
performance of last rites.

The rehabilitation of HIV / AIDS patients is very important

because the stigma of discrimination against HIV / AIDS patients will
endangers non - HIV / AIDS person. It will send a clear signal to HIV /
AIDS patients whose behaviour put them at risk of HIV infection to hide
or otherwise avoid being identified. The way in which the non - HIV /
AIDS persons react to HIV / AIDS patients will make the difference
between success and failure of HIV / AIDS prevention. Protecting the
rights of people without HIV is best served through the protection of the
people who have HIV / AIDS has been decided as the biggest ever-human
right challenge for the international community. PLWHA have right to be
free from discrimination, the right to information, employment,
confidentiality and privacy, sexual autonomy, the right to accessible and
affordable medicines, the right to life and health. All these rights over
under threat in various ways in relation to HIV / AIDS.

The international labour organization (ILO) and World Health

Organization (WHO) developed recommendation to protect the right of
PLWHA in the work place. The international guide lines from UNAIDS
in 1998 highlights the 12 areas of HIV related discrimination and made
recommendations to assist states in translating international human rights
norms into practical observation in the contexts of HIV / AIDS.

On the basis of the result of the study it is possible to suggest guide

line and policy implication that take the form of action strategy for
rehabilitation of HIV / AIDS patients.

1. The study shows that most of the HIV / AIDS cases were in
the prime of their youth which is highly productive and
reproductive age group and this fact made a imperative that
there should be a proper rehabilitation. The government and

THESIS
10
 NGOs must emphasize proper care, treatment and support
of HIV / AIDS patients as well as there social adjustment by
removal of the stigma and discrimination against them in
the health sectors, families, friend circle, community and
work place.

2. Legislation must be pass to ensure the rights of HIV / AIDS

patients to education, employment, social security and to
health.

3. ART which is very costly must be made available to HIV /

AIDS patients at a highly subsidized rates, if not free of
cost.

4. The facilities of testing and counseling must be extended

and strengthen because it is necessary for the rehabilitation
of HIV / AIDS patients. In particular, the facility for HIV
and CD4 count test must be provided free of cost in
community care centers run by NGOs.

5. The HIV / AIDS patients need financial assistance and jobs

and the government and NGOs should ensure this is order
to provide economic security, proper treatment and diet.

6. Organizations and network of HIV / AIDS patients must

be encourage so that they can give voice to their grievance
ad increase their social adjustment. It will serve as support
system in order to campaign against stigma and
discrimination in the family, friend circle, community, work
place and health sectors. This empowennent will also
enable them to fight for their right to education, social
security, health and employment.

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 7. It is work of media and NGOs to spread the awareness
about nature and causes of the disease. The only way to
remove discrimination is to clear the misconception about
the disease such as that it spread through breathing,
smoking, shaking hand, sitting near by, using same utensils,
sharing same toilet seats etc. The awareness campaign of
the government is reaching only the educated people in
urban areas. Since HIV / AIDS affects more illiterate people
in slums and rural areas, it is necessary to spread the
message to these sections.

8. The government is not providing adequate funding for care,

treatment and support for HIV / AIDS patients. These funds
are inadequate because the government does not have
proper statistics about the number of HIV / AIDS patients.
There is huge gap in India in terms of research on HIV /
AIDS what is needed is high quality research to give precise
data on the extent of HIV / AIDS in the country.

9. The NGOs have an important and very special role in

spreading awareness about HIV / AIDS intervention
necessary for prevent, care, treatment and support of HIV /
AIDS patients. NGOs are not under some constraints as
government programmes and so they have greater flexibility
and the capacity to accommodate change programme
according to public needs and implements new initiative
easily.

This study is broadly concerned with the use of exploratory

research design to examine the problems of rehabilitation of HIV / AIDS
patients in Delhi and to suggest guidelines and policy implication for an
action strategy for the effective rehabilitation of HIV / AIDS patients.

12
Exploratory research design was followed because the area was hitherto
un-explored. This research enabled us to gain familiarity with the new
phenomenon and to give new insight. Further, in-depth research needed in
this area by formulating precise hypothesis and appropriate research
design for their verification.

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