AIDS Care and Human Rights in
rural India: Translating policy into practice
- Sudha Sivaram, Ph.D.
Department of Epidemiology
Johns Hopkins University, Bloomberg School of Public Health
Rm 6136, 615 N. Wolfe Street,
Baltimore, MD 21205, USA
Email: ssivaram@jhsph.edu
Eubios Journal of Asian and International Bioethics 12 (2002), 214-6.
The role medical ethics has gained more importance
with the spread of the AIDS epidemic.
A key element of this emphasis is on caregivers such as doctors, nurses
and counselors to provide good quality care in a non-judgmental fashion.Although the principles of medical
ethics hold true for all human beings, the socio-cultural context in which
medical care is provided is not uniform. Further, the health care infrastructure in many
societies does not permit universal access and availability of care.This is the case in rural India where
HIV is spreading rapidly (1).
Although the Indian government outlines a very sound AIDS policy, there
are several gaps in the translation of this policy to action.These gaps are the result of various
issues ranging from stigma in the community to lack of skills and resources
among medical providers to effectively manage HIV infection.This paper analyses these gaps and
recommends some strategies to enable upholding human rights of persons and
families living with HIV/AIDS in rural India.
There
are an estimated 3.5 million HIV infected persons in India (2). A review of
documents from the National AIDS Control Organization (NACO) reveals a
comprehensively written policy.
NACO is the national body in India that provides leadership in AIDS
prevention and control. The policy
addresses key issues of prevention, care, and human rights protection (3).Additionally, the policy also
recognizes several challenges to its implementation and emphasizes the need to
address them. These include the
often slow response and action from the government sector, the recognition of
violation of rights such as denial of care for PWHAs by medical practitioners,
the need to enhance technical and managerial capabilities of program managers,
to name a few. This recognition is
a key first step to addressing the epidemic. The NACO AIDS Policy (NAP) also details specific policy
initiatives. They are program management, advocacy and social mobilization,
participation of non-governmental organizations (NGOs), surveillance and
monitoring, policy on blood safety, HIV testing and counseling, initiatives for
PWHAS, control of sexually transmitted diseases (STDs) and condom
education. In maintaining a focus
on AIDS Care services, this paper will discuss the last four initiatives.
AIDS
Care services in general include prevention education, access to prevention
technology, voluntary testing and counseling, and care for PWHAs (4).The NAP emphasizes the need for wider
outreach in these services in rural areas. Although the level of awareness is as high as 70% in urban
India, it is only around 30% in rural areas (3).Thus the mandate for intensification of
prevention efforts in rural India is indeed important.In terms of HIV testing and counseling,
the NAP stresses its stand against mandatory testing, and strongly
advocates voluntary testing with
pre- and post-test counseling. The policy additionally affirms the rights of
PWHAs to education and employment. It also points out the need for protecting
confidentiality, and proper counseling emphasizing the importance of access to
medical care. Control of STDs and
condom social marketing are highlighted as essential efforts that will
facilitate prevention.
Despite
public and private sector attempts, there are some gaps in the translation of
NAP particularly in rural areas. The first gap is in the area of prevention
education. Prevention education efforts may take the form of AIDS programs and
lectures and may not always be evaluated for impact. It is not uncommon for AIDS awareness activities to take the
form of a series of lectures delivered by prominent residents and politicians
to a gathered crowd on occasions such as World AIDS Day or World Health Day.
While such AIDS awareness campaigns have a higher outreach and increase
knowledge and awareness about AIDS, they are rather limited in achieving
behavior change and change is risk perceptions (5). The need for focused approaches tailored to the needs of various
segments of rural population - men, women, adolescents - is urgent.
The
second gap is in the provision of counseling and testing services.HIV disease is typically detected at
the primary care physician's office where the person goes to when s/he becomes
sick usually with opportunistic infections. Thus, the primary care physician bears the onus of pre-test
counseling and taking consent. In a private practice where a doctors may see an
average of 40 patients a day, this is sometimes a difficult onus to bear
(6). Many doctors in private
practice cite reasons of staff fear, and resources to avail of universal
precautions, as some reasons that limit their caring for HIV infected
persons. Further, there is a
debate of whether counseling is a service that a medical doctor is qualified to
provide. In the final analysis,
several PWAs are often referred to the government hospitals.
From
Policy to Practice
As a civil society committed to promoting health, it is
important to provide access to information and prevention of AIDS to rural
residents of India. Half-hearted
education attempts, awareness programs that have no measurable benefit, lack of
provision of care, absence of testing and counseling are more than violations
of national mandates to control HIV - they ultimately are actions that further the
conditions under which HIV may be transmitted. How can the implementation of national policy then be
enhanced to preserve human rights and promote health? The following are some areas of action.
Sensitize Health Providers
in the Private Sector. In the rural periphery,private doctors far exceed public
sector doctors. Private doctors
are in several instances, the first point of contact for several PWHAs in rural
areas. Doctors in rural areas may not have upgraded their skills in several
years. Besides qualifications of
some may be moot and they may exploit the poor and illiterate (7). Several doctors in rural India also claim to have
a cure for AIDS. The need to educate all rural doctors and empower them with
skills is critical. This is the
first step to ensure protection of human rights in AIDS Care.
Invest in networking of
health care providers, and NGOs .Isolation of rural areas is not limited
to geography. Intellectual
isolation can indeed be rather pervasive.
Networking among regional doctors is the first step to
sensitization. This willprovide an opportunity to learn from
best practices and encourage sensitive treatment of PWAs.The vastness of rural areas in India
calls for intensive localized efforts with people from the region who are
prepared to address its needs. Here, NGOs
can work with doctors offices in the periphery to provide counseling
services. The outreach of some
NGOs and people's groups extends to remote rural areas. This mightencourage close monitoring of health care
service delivery for violations of human rights. In strengthening the capacities of these groups lies the
beginning of a concerted response to PWAs in rural areas of India.
Facilitate People's
Movements for Strict Enforcement of
Human Rights.The role of people and advocacy groups
is key in enforcing human rights.
A well informed public can take these issues seriously and serve as
watchdogs to the government. The
state then follows by implementing Acts that preserve rights. The organization
of female sex workers in Calcutta to prevent oppression and taking steps to
prevent HIV infection is one example (8) Similar organizations of PWAs and
persons interested in human rights can lead to action in rural areas.
Educate Enforcing Bodies. The link
between laws and their implementation is only as strong and fair as their
enforcers. There are several
reports of police brutalities in India
(9). The earlier mentioned detention
of HIV positive sex workers is an example. There is a need to facilitate dialogue between police
and the community. The NAP should
provide for tangible links between the law enforcers and the public in terms of
AIDS control and prevention. Police
and other enforcing bodies should also be equipped with technology to enforce
law better. The village government
or Gram panchayats are to be empowered under NACO plans to implement AIDS
Projects. Gram panchayats consists
of elected indivuals who manage the implementation of development efforts at
the village level. However, these bodies in some states are influenced by the
higher castes (10) where there is potential for power and politics to violate
rights. The political will in AIDS
Care and Human rights should be vocalized by politicians and other leaders, and
committed bodies to handle rights violations should be supported.
Focus more efforts on men
and laws favoring women's rights.The need to work with men has been
stressed in the literature, in the context of women's health (11). There is evidence for the urgency
of this need in light of AIDS.
Male behavior has been documented to facilitate HIV infection in
monogamous women (12). The large number of liquor shops in Belgaum
district (13) facilitates consumption of alcohol. While alcoholism in both men and women can increase violence,
studies in India have shown a link between excess male alcohol consumption and
domestic violence (14). Despite
these challenges to achieving women's health goals, laws can effect women's
health and well being. In the state of Kerala for example, where women have
women access to basic health care and favorable property and inheritance laws,
we see high litearcy rates in women and small families (11). In addition to
NACO mandate of working with women, more intensive efforts targeted at rural
men, and elders is needed. This
might begin to influence groups that directly impact women's health rights.
Recognize the interaction
of human rights and rural context in planning AIDS Care services. Communities in rural India are complex
entities. Health workers in rural
India report on the importance of taking permission from village elders and
leaders, in order to initiate any discussion with the village residents (15).
These roles of family and community need to be considered in AIDS
counseling. There are reports
that caste, occupation, religion, and economic status already are grounds for
discrimination in several poor districts of India (7). Thus, translation of NAP
in rural villages requires addressing these dynamics. There is also a need to appreciate the inter-state diversity
in iliteracy, program planning, and governance. NAP also needs to lobby for implementation of several
pending and unfinished projects to provide basic necessities to India's rural
residents (7).
Unless these needs are met, violations against PWHAs may simply be a
part of the larger oppression that many in rural India face. These structural
issues must be brought into the fore front of public debate by NACO, and other
advocates of humanized AIDS Care.
Seriously
enforce education of young people.In a review of textbooks used by grade
11 and 12 students, there was
reference to HIV/AIDS and even STDs.
However, although there was mention about the microbiology of the
disease, the real issues of transmission and prevention were covered only
cursorily (16). This
quote is illustrative of young men's frustration with the sex education
practived in schools in rural Karnataka: "The teachers skip the
reproductive system altogether .. this is usually a choice between this and
another system in biology exam.. so they think we can leave it in choice.While students are most eager to read
about this.. the teachers are not. "
Peer
training and education is a viable strategy to empower young adults who will
soon be sexually active. Sensitization of this population to these issues will
also create community consciousness and go a great length in creating human
rights awareness.,
AIDS
has brought to light the issue of human rights. It is now important to take this opportunity to seriously
consider enforcing these rights to all Indians in all sectors of societal
function and governance. The strategies listed above may
provide a beginning to address AIDS Care in rural India.But they do require larger reforms,
political will and responsible spending of public funds. Successful initiatives such as Polio
Plus campaigns in India bear evidence to committed implementation to address
serious health issues (17).It is hoped that such commitment of
resources will be replicated in addressing AIDS in rural India.
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