Report of the National Conference on Human Rights and HIV/AIDS
NEW DELHI, 24-25
Organised by National Human Rights
Commission; In Partnership with National AIDS Control Organisation,
Lawyers Collective, UN Children's Fund and UN Joint Programme on
HIV/AIDS is not merely a medical problem: the manner in which
the virus is impacting upon society reveals the intricate way in which
social, economic, cultural, political and legal factors act together to
make certain sections of society more vulnerable. The epidemic exposes
the method and the impact of marginalisation and inequality in clear
groups in our society have little or no access to basic fundamental and
Human Rights such as food, medical services and information. Many of
these groups are ostracised by society at large, and their lifestyles
criminalized, making it practically impossible for them to participate
in mainstream processes whereby they could demand their rights. Coupled
with this dismal situation, there is minimal awareness about HIV and no
real options for safer lifestyles. The stark reality of the HIV/AIDS
epidemic is thus that people are becoming HIV positive because they have
no access to basic fundamental Human Rights. For the same reasons, the
impact of infection is a lot graver for those with no access to rights.
It is time to recognise this link between marginalisation, Human Rights
is also time to recognise that the HIV/AIDS epidemic itself has given
rise to a range of Human Rights violations. The refusal of treatment,
denial of access to essential drugs including antiretroviral therapy,
discrimination in the health care and employment sectors, women being
deprived of their rights and thrown out of their homes etc are just some
examples of these violations. Apart form having a serious impact on the
lives of people living with HIV, these violations are pushing the
epidemic underground. Unless these Human Rights violations are
addressed, there cannot be the creation of an enabling environment,
where people come forward to access health and other services, or even
There is also a need to understand the exact manner in which factors of
gender, caste, region, class, sexual orientation influence the impact of
these Human Rights issues for different sections of society. Along with
social and economic factors, there are laws, which complicate the
influence of these factors. To understand these different contexts would
be the first step in addressing the problems they entail.
can today be made a manageable condition, with the use of antiretroviral
treatment, along with other mechanisms. These treatments are, however,
almost absolutely unaffordable to most people who need them. It is s
shocking proposition that the right to live a healthy life should depend
on the ability of a person to pay for treatment. This proposition is,
sadly, a truth at present. The State is under and obligation to ensure
that treatment is available, accessible and affordable to all people who
need it. Laws that impact on the cost of treatment, such as drug price
control laws and patent laws need to be moulded to fulfil this
obligation. This is as much as Human Rights issue as any other.
In order to bring all these realities to the fore,
to understand them and to address them effectively, there must be the
development of an enabling legal environment which respects and protects
the fundamental and Human Rights of those worst affected. It is keeping
this in mind that the National Human Rights Commission decided to take
up the exercise of starting dialogue with the Human Rights community on
a wide range of issues that link the HIV/AIDS epidemic to Human Rights.
The National Conference was the first step in this regard.
Representatives from the Human Rights machinery, police personnel,
non-governmental organisations (NGOs), AIDS Control Societies and people
living with HIV/AIDS from all over the country, came together for the
first time to discuss these issues at length.
conference was conducted by the National Human Rights Commission (NHRC)
in partnership with the National AIDS Control Organisation (NACO),
Lawyers Collective, United Nations Children’s Fund (UNICEF) and Joint
United Nations Programme on HIV/AIDS (UNAIDS), all of whom must be
commended for the hard work that went into making the conference a
success. I am glad to note that the deliberations of the conference were
fruitful and informed. The success of the conference may be seen from
the insightful recommendations that came out of the deliberations.
idea of the Conference as I have stated earlier, was to start the
process of developing a rights-based response to the HIV/AIDS epidemic
within the country. I sincerely hope that the various State Human Rights
Commissions, Police departments, representatives from the health sector
and State AIDS Control Societies will now take the process forward in
close collaboration with civil society.
JUSTICE J.S. VERMA
National Human Rights
Human Immunodeficiency Virus / Acquired
“Dignity is the entitlement of all as long
as life exists”
Justice J.S. Verma, Chairperson
National Human Rights Commission
25 November 2000
recommendations emerging from the group discussions are presented as a
series of action points that seek to feed into the
response to HIV/AIDS both on national and State levels, and in reference
to all partners, including the international and domestic
non-governmental organisations, foreign governments and multilateral
agencies, credit institutions, the business community/ private sector,
employers’ and workers’ associations, religious associations and
purpose of the action points is to complement the International
Guidelines on HIV/AIDS and Human Rights with practical solutions in Indian context.
All staff of
testing centres and hospitals, both in public and private sector should
be trained and sensitised, on the added value of the right of any person
or patient to make an informed decision about consenting to test for
HIV. Further the same staff need to be sensitised on universal
precautions, provided with an appropriate infrastructure and conducive
environment enabling them to respect the right of any person or patient
to decide whether to test for HIV or not. This right to self-autonomy
must be combined with the provision of the best possible services of
pre-test and post-test counselling.
at routine HIV screening at blood banks, should be referred to
counselling centres at nearby health care facilities, for further
evaluation and advice.
environment in which counselling and testing is carried out needs to be
conducive and enabling to prepare HIV positive people physically,
mentally, with accurate information on how to ‘live positively’. An
important component of the enabling environment is sufficient time
to internalise and consider the counselling and information provided to
make an informed decision on consent to testing.
guidelines and a comprehensive protocol should be developed on how to
counsel and best protect the rights of the people who according to
current legislation, or the practice of diminished authority, may not
have legal, or social, autonomy to provide or withhold give their
consent. This would include inter alia children, mentally disadvantaged
persons, prisoners, refugees, and special ethnic groups.
protocol on informed consent and counselling should be developed and be
applicable in all medical interventions including
HIV/AIDS. It needs to include testing facilities and processes in normal
hospital setting, emergency setting and voluntary testing that take into
consideration the window period. Although the counselling offered aims to advise
testing for those who might feel they have been engaging in unsafe
practices, the right to refuse testing must be respected.
and/or accessibility to voluntary testing and counselling facilities
needs to be increased throughout India, including rural/remote areas, in
an immediate or phased manner within previously defined and agreed
written consent procedures in the case of HIV/AIDS research need to be
explored and developed.
‘The right to self-autonomy is a positive right to
protect yourself -
Protecting the rights of the infected, protects the
rights of the non-infected’
sensitise all staff in testing settings, blood banks, and care and
support settings, both in public and private sector, on the right of any
person or patient to enjoy privacy and decide with whom medical records
are to be shared.
innovative and practical ways to implement respect for confidentiality
in different settings: location for disclosure of diagnosis, specific
procedures for the handling of medical journals and correspondence,
reporting procedures, and confidential disclosure of status without the
presence and pressure of family members, which is particularly relevant
to infected women.
framework, administrative procedures, and professional norms should be
revised to ensure enabling environments, which foster and respect
guidelines/regulations for beneficial disclosure of testing results.
Disclosure without consent should only be permitted in exceptional
circumstances defined by law.
sensitise care providers and patients on their respective rights in the
context of HIV/AIDS, and combine it with training on universal
precautions and with the supply of means of protection including post
exposure prophylaxis (PEP) and essential drugs for all health care
settings. Include to a greater extent trained and sensitised health care
workers as trainers and role models to other health care workers.
Information on HIV/AIDS should be available at all health care
institutions for the public as well as for the staff, and should be most
reduction programmes and campaigns among health care professionals that
prohibit isolation of HIV positive patients, provide appropriately
prescribed treatment of opportunistic infections, and offer standard
procedure for the protection of confidentiality. Include to a greater
extent people living with HIV/AIDS in the design of stigma reducing
campaigns, awareness programmes and care and support services.
anti-discrimination legislation that practically enables protection of
the rights of health care workers and patients, and that makes both the
public and the private sectors accountable.
multi-sectoral consultative body on HIV/AIDS to provide advice and
dissemination of information to health care workers.
Discrimination in Employment
national and State anti-discrimination legislation that should apply
equally to both the public and private sectors and should prohibit
discrimination in relation to work. This should include prohibition of
pre-employment HIV testing, routine health checkups with mandatory HIV
testing, reasonable accommodation, HIV friendly sickness schemes,
entitlements, regulation on subsidised treatment costs, and
sensitise both employers/corporate leaders and employees/workers at
formal and informal work places, and expand the awareness programmes to
the surrounding communities, on the issues of HIV/AIDS, stigma and
discrimination, leading to adoption of private and public corporate
regulations on HIV/AIDS.
sensitise law enforcement authorities or other authorities/sections of
the community that might be closely connected with the workplace on the
issues of HIV/AIDS, stigma and discrimination.
about the existing CII policy on HIV/AIDS and training in legal literacy
related to both HIV/AIDS in the workplace as well as other work place
regulations in force. Media could be of great use to such a campaign.
investigation on the anticipated costs for large and small Indian
companies in the context of HIV, to prepare employers and workers in
dealing with the consequences of HIV/AIDS.
affirmative action/positive discrimination in the form of insurance and
health care benefits and introduce medical insurance schemes to cover
HIV positive employees.
on workplaces with special vulnerabilities: introduce interventions
training and sensitisation programmes within the armed forces, and
design training and sensitisation programmes that are child- youth- and
women friendly to be used in the workplaces where they are represented.
Women in Vulnerable
share accurate information on HIV (including transmission modes,
sexually transmitted diseases (STD), preventive and curable aspects,
treatment, drugs and counselling) to different categories of women in
varied innovative, culturally adapted ways all over India.
changes to empower women for equality in areas such as property rights,
domestic violence and marital rape, and protect the right to association
for any groups of women working for collective interests.
rights of women to provide or withhold informed consent, for HIV
testing, must be protected. Social barriers that limit the free
exercise of such a right by women must be overcome through appropriate
educational and administrative measures.
pregnant women should be provided an opportunity to have an HIV test,
since vertical transmission of HIV can be effectively stopped by the
use of low cost drugs in pregnant women who test positive. Women, who
test positive for HIV, during pregnancy, should be offered such
media communication programmes to reach out to as many groups of women
as possible on the issue of empowerment of girls and women and
elimination of misconceptions, myths and stereotyping related to male
and female sexuality. Remove silence about sexuality in the development
of policies, guidelines, project management and programming as well as
within prevention messages.
programmes directed at informing and involving men in the response to
HIV/AIDS by opening up discussion on sexuality and gender differences,
challenging cultures of shame and blame.
Children and Young
Ensure that the response to children
and young people is shaped and driven by their rights guaranteed under
the CRC, and also, their overall health needs as well as
health education requirements. Train
government officials, policy-makers, and healthcare providers to fully
familiarise them with the contents of CRC.
- Create innovative mechanisms
to inform children and youth on safe sex and other sexual health
issues and ensure that such information is related to their cultural
context and age groups. Extensively use mass media and the education
system to disseminate relevant information. The information and
advocacy campaign should be subsidised by the Government.
Redesign the health care services,
including contact points/counselling services, to become more child- and
youth friendly, and accessible.
The limitations of the legislation
related to children and young people need to be addressed. For instance,
the Juvenile Justice Act (JJA) should be revised to facilitate the shift
to alternate methods of providing non-custodial care. A law covering
sexual abuse of boys and girls should be adopted. Legal remedies need to
be made accessible to children and youth.
Develop a clear policy for how young
people wishing to go through an HIV test can do so voluntarily and
without breach of confidentiality vis-à-vis legal guardians or others.
with or Affected by HIV/AIDS (PWHA)
institutional guidelines with standards placing the issues of PWHA in a
availability and access to appropriate health care for PWHA within
mainstream services (including increase in availability of voluntary
testing centres). Explore practical ways to ensure that the right of
PWHA to treatment of opportunistic infections is promoted, respected and
protected in practice. This should include efforts to reduce stigma and
discrimination in the health care system, reduction of the cost as well
as increase of availability and affordability of drugs.
study on the WTO regime post 2004. Lobby with the UN agencies,
including the OHCHR to work for affordable drugs, and lobby towards
Indian capacity building and opportunities for domestic drug
manufacturing. Organise a workshop on WTO and TRIPS with reference to the issue of future access to
drugs and anti-retrovirals.
Ensure ways to
protect everyone’s right to information about HIV/AIDS, means of
protection and support available for ‘positive living, among others, by
strengthening the quality control of the services and drugs, and access
to information on policy of all partners. This includes the training of
testing technicians and physicians on HIV/AIDS technical aspects.
literacy among PWHA and communities by community training programmes and
integration of legal literacy messages in prevention messages. Ensure
access to legal remedy in case of violations of the rights guaranteed
information, education and communication (IEC) strategies with the aim
of reducing stigma while preventing HIV/AIDS. For this purpose, explore
the role of public broadcasting companies, and introduce tax relief for
private broadcasting channels to allow public broadcasting on issues
related to HIV/AIDS. Train and sensitise the media through workshops.
Lobby for the inclusion of HIV/AIDS issues in the Right to Information
review legislation that impedes interventions (such as Section 377 IPC), as well as feasible anti-discrimination
legislation, health legislation and disability legislation to be more
supportive to people living with HIV/AIDS, prevention, care and support
initiatives. Include HIV/AIDS issues in the Right to Information Bill.
Introduce affirmative action for HIV positive people in the employment
reformulate laws and processes (such as Section 377 of the Indian Penal
Code and the NDPS Act) to enable the empowerment of marginalised
populations and reach them with HIV/AIDS prevention messages as well as
care and support mechanisms.
The revision of
the legislation must seek to mitigate the socio-economic factors that
cause people’s marginalisation as well as unsafe practices.
sexual activities undertaken with consent between adults, and in
connection with this adopt a clearly defined age for sexual consent.
expand innovative harm reduction programmes to reduce harmful practices
including needle exchange and unsafe sexual activities, and expand
condom distribution among all marginalised populations.
- A comprehensive strategy to
prevent and control HIV-AIDS should combine a population based
approach of education and awareness enhancement with strategies for
early detection and effective protection of persons at high risk.
- An Action Plan for
implementation of these recommendations should be developed with focus
on specific areas of action and prioritised sequencing of
recommendations for early implementation within each of them. This may
be done through a working group comprising of representatives from the
NHRC, Ministry of Health and Family Welfare, Government of India and
UNAIDS who will identify the pathways of action and the agencies for
Rights - crucial in dealing with HIV/AIDS
‘Respect for Human Rights helps
to reduce vulnerability to HIV/AIDS, to ensure that those living with or
affected by HIV/AIDS live a life of dignity without discrimination and
to alleviate the personal and societal impact of HIV infection.
Conversely, violations of Human Rights are primary forces in the spread
of HIV/AIDS. … Implementing a Human Rights approach is an essential step
in dealing with this catastrophic threat to human development.’
AIDS Acquired Immune Deficiency
AIDS Service Organisation
ANC Ante Natal Care
Centre for Disease Control (in Atlanta, USA)
Confederation of Indian Industry
on the Rights of the Child, 1989
Convention on the Elimination of All Forms of Discrimination Against
HIV Human Immunodeficiency Virus
International Conference on Population and Development, Cairo 1994
Information, Education and Communication
Injecting Drug Use [er, -ers]
Indian Medical Association
Indian Network for Positive People
Indian Penal Code
Traffic in Women and Girls Prevention Act, 1986
Juvenile Justice Act
Karnataka Network for Positive People
National AIDS Control Organisation
Narcotic and Psychotropic Substances Act
Non Governmental Organisation
National Family Health Survey
National Human Rights Commission
OHCHR Office of the
[UN] High Commissioner for Human Rights
PEP Post Exposure Prophylaxis
Primary Health Care Centres
Person/People Living with HIV/AIDS
Reproductive Tract Infections
State AIDS Control Societies
Sexually Transmitted Disease
Sexually Transmitted Infection
Related Aspects of Intellectual Property Rights
Joint United Nations Programme on
UNHCHR United Nations High Commissioner
for Human Rights
UNICEF United Nations Children’s Fund
United Nations Development Fund for Women
Voluntary Counselling and Testing
World Trade Organisation
The first ‘National Conference
on Human Rights and HIV/AIDS’ was held in New Delhi on 24-25 November
2000. The conference was aimed at initiating a dialogue between
concerned agencies and groups on the linkage between Human Rights and
HIV/AIDS prevention and management.
India has 3.86 million people living with HIV/AIDS, the highest in any
country after South Africa. HIV in India is mainly transmitted through
heterosexual contacts placing large parts of the population at risk of
infection. The stigma surrounding HIV/AIDS, and certain vulnerable
groups affected such as injecting drug users, often leads to
discrimination, which constitutes a serious obstacle to HIV/AIDS control
and management. It has been established that understanding of Human
Rights issues enhances protection against HIV on both the individual and
community level. At the same time, promotion and protection of Human
Rights as a central component of the response to HIV/AIDS makes people
and communities less vulnerable to HIV/AIDS and mitigates the impact on
affected and infected persons.
Organised by the National Human Rights Commission (NHRC)
in collaboration with the National AIDS Control Organisation (NACO),
Lawyers Collective, UNICEF and UNAIDS, the conference brought together
Members of the NHRC and State Human Rights Commissions (SHRC), officers
from NACO and State AIDS Control Societies (SACS), Inspectors General of
Police in-charge of the Human Rights Cells, UN agencies, NGOs, People
Living with HIV/AIDS, and Human Rights activists.
The objectives of the conference were to:
(i) Discuss and identify major issues in the HIV/AIDS
related Human Rights framework
(ii) Build linkages between SHRC and SACS
(iii) Identify future interventions to create an
enabling environment at various levels, and (iv) Delineate measures to
expand the response within a Rights-based approach.
The conference was part of a series of consultations
on “Health and Human Rights” planned by the NHRC, which elicited
broad-based participation (including the Chairperson and members of NHRC)
and enabled participants to scrutinise the status of HIV/AIDS
protection, control and healthcare within the framework of Human Rights.
Partnering groups and individuals were able to fully consider the
immense value of recognising, promoting and protecting Human Rights,
creating an enabling environment, and recognising the central role of
law as essential components of the response strategies to prevent and
manage HIV/AIDS in India.
materials used as basis for the conference group discussions were the
product of a consultative process. A variety of stakeholders were
consulted to spell out the key issues governing ethics, law, and Human
Rights in relation to HIV/AIDS. All background materials were
distributed twice prior to the conference to a number of experts and
consultants all over India, including NACO and NHRC, for comments and
input. The invaluable feedback from this process has been carefully
considered and incorporated to the extent possible.
The papers on
Consent and Testing, Confidentiality, Discrimination in Health Care and
were written on the basis of the information and experiences shared
during a consultation jointly held with PWHA, health care workers, AIDS
Service Organisations (ASOs), Non Governmental Organisations (NGOs),
counsellors, trade unionists, Mumbai District AIDS Control Society,
UNAIDS and representatives of the legal community (Mumbai). The paper on
was based on the same process as described above, but was complemented
with additional interviews and consultations with women’s NGOs, health
care workers, lawyers, UNIFEM and UNICEF staff. (Mumbai and Jaipur).
Children and Young People
their vulnerability to HIV was mainly a research product, based on UN
documents, national and international data, conference reports and
doctrine. Three background papers were based on reports and feedback
from meetings and conferences: A report from the national meet launching
the ‘National Forum for Advocacy and Support for Sex Workers’ (Chennai,
28-30 April 2000), served as basis for the backgrounder on
vulnerability to HIV/AIDS. The paper on
was based on the 1999 Needs Assessment Study of People Living With
HIV/AIDS conducted by INP+, as well as the INP+ Strategic Plan for 2000-2002,
while the vulnerabilities of
were discussed mainly on the basis of a conference held in May 2000
organised by the Humsafar Centre, Mumbai (‘Looking into the next
Millennium’). The paper on
Injecting Drug Users
was largely based on the information and experience shared by NGO
representatives from Manipur and Delhi during a consultation held in
of the Proceedings
The inaugural session pointed to a clear link
between Human Rights, HIV/AIDS, and Development. It emphasized the
necessity for harmonization between individual rights and community
interests, ready access to drugs as an assertion of Human Rights, and
the involvement of civil society and central and State governments in
the response to HIV/AIDS.
Shri N. Gopalaswami, Secretary General of the NHRC,
welcomed the guests and participants.The Union Minister of Law, Justice
and Company Affairs, Shri Arun Jaitley inaugurated the Conference.
Justice Shri JS Verma, Chairperson of the NHRC presided over the
function. Shri Javed Ahmed Choudhary, Secretary (Health), Ministry of
Health and Family Welfare and Dr Brenda Mc Sweeney, UN Resident
Co-ordinator addressed the Conference and articulated issues that
provided a basis for the deliberations over the next two days.
Shri Javed Choudhary emphasised that respect for
Human Rights is important in the management of any disease, and a
balance needs to be found between individual rights and community
rights. On the issue of access to drugs, he suggested international
support should focus on enabling purchase of patents of drugs instead of
disease control programmes. He also pointed to a need for much greater
investment in vaccine research. With respect to groups in vulnerable
situations such as sex work, he stated there is a need for the
recognition and acceptance of the existence of such contexts. He felt
that the opposition to such recognition was misplaced in as much as it
did not consider the contextual realities.
Dr Brenda McSweeney expressed a sense of happiness
that HIV is finally being viewed within the Rights framework. She
considered the decentralisation of the national programme as a positive
development. She articulated three significant issues in the HIV/AIDS
context. Firstly, she pointed out that the HIV/AIDS epidemic is a
development issue and focus needs to be brought on issues of gender,
mobility, economics and marginalisation. Secondly, HIV/AIDS is
significantly different from other diseases because of the stigma and
discrimination attached to it. Pointing to the seriousness of ostracism
in health services and employment, she emphasised that the right to
dignity should be central in the response to the epidemic. Finally, she
emphasised the significance of a proper system of law and ethics in the
HIV/AIDS context. While pointing out that the present international
guidelines were based on experiences worldwide, she cautioned the
gathering that the contextual sensitivity of these guidelines should be
tested. At the same time, she stated that the rights of every group
affected by the epidemic need to be recognised and respected, and any
coercive action would be counterproductive.
In his inaugural address, Shri
Arun Jaitley first outlined the progress of the human rights movement
and the development in the conceptualisation of rights. He opined that
the meaning and content of rights have been fine-tuned in the last two
decades to a commendable extent, whereby today we find that rights have
specific meanings and are not merely abstractions. Shri Jaitley went on
to identify a few of the significant and contentious legal issues that
have been raised in the HIV/AIDS context, which include confidentiality,
consent in testing, and the right to marry. Recognising that the
interests of the community and the individual’s rights both need to be
respected, he urged more debate on these issues. In the context of
consent to testing, he suggested that the element of persuasion would
clearly be essential in the legal response but that it may not be
sufficient, considering the population of the country. Finally, Shri
Jaitley pointed out that other legal and policy issues that need greater
focus in the HIV/AIDS context include information and broadcasting,
fundamental rights and economics.
Justice Verma, in his presidential address,
emphasised that HIV/AIDS is one of the most pressing Human Rights
issues. He said that the right to health under Article 21 of the
Constitution puts a responsibility on the State to devise a response. At
the same time, he pointed out that the responsibility was not the
State’s alone, the involvement of the community was equally important.
In addition to the Constitutional mandate of protecting fundamental
rights, Justice Verma pointed to the international obligations that
apply in dealing with the problem. The focus of the State’s response,
Justice Verma stated, must be two-fold. The first objective should be to
ensure that there is no more transmission of HIV infection, and the
second to ensure that drugs are available. He further pointed out that
it is time for the dialogue and activity around these issues to shift
from conference rooms to the streets. He suggested that interventions,
including those by NGOs, must be sensitive to the cultural context and
each step should be strategically decided so that it is not
The Plenary Presentations
Additional Secretary of Health and Project Director
of the National AIDS Control Organisation (NACO), Mr JVR Prasada Rao,
offered an overview of the HIV/AIDS scenario in India. The priorities of
the Response to HIV/AIDS are outlined in Phase II of the National AIDS
Control Programme (NACP II). It has the twin goals of reducing the
transmission of HIV, and increasing India’s capacity to respond to the
epidemic. Based on epidemiological observations, the programme focuses
on preventive strategies in States with low-level epidemics, while dual
strategy of prevention and control is the focus in the remaining States.
The plenary presentation on the global situation by
Mr Gordon Alexander, Senior Country Programme Adviser for UNAIDS India,
provided a useful perspective for the participants on the urgency of the
situation, the importance of drawing on lessons learnt in other
countries, and the urgency to identify Indian solutions -now.
Reading out a letter to a friend and HIV/AIDS
activist Dominic D’Souza, Mr Anand Grover, Lawyers Collective,
highlighted the importance of law and promotion of human rights to
effectively control the spread of HIV/AIDS. He also urged the
participants to empathise with people living with HIV/AIDS, and act
humanely but urgently to stem the spread of the epidemic.
Professionals, experts and
activists with extensive experience on HIV/AIDS from within the national
and State governments, academic institutions as well as from civil
society deliberated on the critical issues to be addressed along two
broad themes: issues crosscutting HIV/AIDS and Human Rights issues, and
those relating to vulnerable groups and environments. The first day of
group deliberations was devoted to Human Rights issues within the public
health framework especially for those affected by HIV, and issues of
informed voluntary consent and testing, confidentiality, and
discrimination in employment. Marginalized groups such as women in
vulnerable environments, children and young people, people living with
HIV/AIDS, and discrimination affecting marginalized communities were the
focus of deliberations during the second day of the conference.
The Human Rights issues identified by the group
regarding the problem area of ‘Consent and Testing’ included the right
to health and safety, the right to information, the right to make
autonomous choices without coercion, the right to refuse, and informed
consent for testing including counselling procedures. An initial
discussion on the right to self-autonomy identified the basic principles
of and established guidelines to biomedical ethics, the code of conduct
for physicians and researchers, as well as justice, beneficence –
non-malfeasance and other principles, required in support of the right.
group started by discussing consent to testing in the blood bank
setting where both the donor’s and recipient’s rights need to be
considered. It was argued that the safety of the recipient and not the
status of the donor should be the primary concern in a blood bank, and
counselling centres need to be set up if the blood bank’s duty is to
extend to informing donors of their HIV status.
extent to which facilities for voluntary testing should be made
available was also discussed. Recognising the added value of HIV testing
as a source of knowledge that can be beneficial to both the individual
and the community, the group agreed upon the optimal situation in which
every citizen should have access to voluntary testing. Also, it would
give the individual the autonomy, to choose whether or not to undergo
testing. Not allowing the individual to make informed autonomous choices
would be a violation of the right to self-autonomy. The group expressed
concern over a concept of diminished autonomy applied in the case of
women, children, mentally disadvantaged prisoners, refugees, and ethnic
groups. It questioned the right of others to give consent on their
The group felt that a comprehensive protocol is
needed. For testing in the hospital setting, the opinion that
consent to testing should be applicable to all medical interventions and
not only to HIV tests prevailed. There was also a discussion on the need
to differ from normal hospital care settings and emergency settings in
the context of universal precautions and the window period.
group further discussed the advantages of respecting consent to testing.
As stigma is attached to HIV status, people do not come forward for
testing. A conducive and enabling environment should be present for this
to happen. This entails preparation of the patient both physically and
psychologically to face the trauma of social ostracism. Also, it would
include counselling on safe practices to prevent transmission. It was
felt that testing without consent should occur only in exceptional
cases, and that a comprehensive protocol regulating such testing is
needed, as well as awareness generation to prevent its non-intended use.
The major concern, however, was the question of
making rights operational and the issue of strengthening infrastructure
and training staff to enable them to know when to use protection
measures. For the operationalising of rights, the provision of adequate
time and information for the individual to enable him/her to reflect and
make an informed decision on testing was considered a prerequisite. In
addition, the need to obtain written consent for research/drug testing
The starting point of the group
discussion was that HIV/AIDS is a Human Rights issue involving health
care and social problems. During the discussion, the group identified
several instances when breach of confidentiality actually makes both
prevention and management of HIV/AIDS difficult as such breach is not
covered by any law.
It was argued that to bring both infected and
affected persons closer to health care services, confidentiality would
need to be guaranteed. Otherwise, the risk is that people will avoid
health care services, and HIV/AIDS will remain beyond the control of
It was concluded that health care professionals need
more clarity through formal guidelines/regulations as to when it is
necessary to allow the release of information on a patient’s sero-status.
This might be in relation to partner notification or in the interest of
adequate further health care.
The group felt that respect for
confidentiality plays a paramount role in HIV/AIDS response as
guaranteed confidentiality motivates people to come forward and trust
health care services. Disclosure of HIV status should therefore only be
made in exceptional circumstances, to be specified in law.
in Health Care
The right to equal treatment
and the right to health are fundamental rights. Patients and care
providers must both be made aware of rights and risks of HIV/AIDS. An
anti-discrimination law covering not only public institutions, as
presently provided by the Constitution, but also private institutions
would be needed to ensure minimum standards of non-discrimination, and
to put all health care within the framework of the rule of law. For
both public and private institutions, providing safe working
conditions/universal precautions and PEP would encourage
non-discrimination, as would adequate supply of essential drugs. Ongoing
orientation and training of health care workers at all levels would be
useful to fight discrimination in the health care setting. There is no
valid reason why HIV/AIDS patients should be isolated or why they should
not have access to treatment provided for any other illness.
Role models in all disciplines
must be motivated and encouraged. It would be advisable for health care
professionals to train other health care professionals, as it would
strengthen their profession from within, and at the same time,
contribute to both de-stigmatisation as well as a more enabling
environment to manage HIV/AIDS in health care settings.
Another recommendation for
increasing the awareness and knowledge among health care professionals
about HIV/AIDS is for each State to set up a multi-sectoral consultative
body on HIV/AIDS in health care for advice and dissemination of
information to health care workers. Such a consultative body could
consist of members of State Human Rights Commissions, State AIDS Control
Societies, Directorates of Health Services, Human Rights Cells in Police
head quarters, PWHA, NGOs, Indian Medical Association (IMA), and the Law
Department. This body may also look into the overall Human Rights issues
relating to HIV/AIDS and suggest practical solutions.
People have very little
knowledge about HIV/AIDS and other STD. Information on HIV/AIDS could be
made available at all health care institutions – not only the ones
relevant to STD or ante natal care (ANC). This information should be
simple and practical and make the people aware of the risks and the
rights, if exposed or infected.
An additional way of dealing
with and eventually reducing discrimination that is based on HIV/AIDS,
would be to offer a legal framework which includes anti discrimination
clauses that have jurisdiction both in the public and private sphere and
are valid in both emergency and non-emergency situations.
At the same time, resources
should be made available for both State and private health care
institutions to ensure a safe working environment for health care
workers, so that they can contribute in the best way to the prevention
and management of HIV/AIDS. This should aim at non-isolation of HIV/AIDS
patients, a standard procedure for the protection of confidentiality of
sero-status, accessibility to treatment of opportunistic infections, as
well as anti-retroviral medication.
Articles 14 and 16 of the
Constitution guarantee equal treatment before the law, but only have
jurisdiction in the public sector. Although one could argue that the
guarantee stretches into the private sector, more concrete legislation
on non-discrimination would be useful. There is need and a
constitutional obligation for the State to regulate the private sector
The group identified several
urgent issues for discussion including (i) pre-employment testing, (ii)
sensitisation of employers (a positive climate has to be created among
corporate leaders), (iii) armed forces as a particularly vulnerable work
place, (iv) child labour, and (v) women in employment.
In the Indian HIV/AIDS
scenario, main work-place concerns were identified as follows:
Pre-employment check-up: Should pre-employment
check-up be allowed, given the fact that it might lead to difficulty for
those not qualifying health-wise to earn a living (which is guaranteed
in the Constitution)? The group agreed that this scenario would
constitute discrimination and should be specially prohibited through
national and State legislation as well as within corporate
Routine health check-up: Should employers be
able to terminate the employee’s contract if a routine health check-up
reveals HIV status? The group agreed that it should not, and that
employment in spite of positive HIV status should be protected through
national and State legislation, as well as through corporate
Reasonable accommodation: The group agreed
that as reasonable accommodation is granted people affected by other
diseases, it should be granted also in the case of HIV.
Benefits to HIV positive employees and
families: As employees who suffer from other illnesses are entitled to
benefits such as provision of medical services and compensation of
medication expenditure by the employer, the same should be the
entitlement of employees suffering from HIV, and their families.
National and State legislation as well as corporate regulations should
guarantee these benefits.
Treatment costs: There is most likely an
increased need among HIV positive employees to undergo different
treatments for opportunistic diseases. It would be advisable that the
costs of such treatment be subsidised by either the State or the
employer so that the employee can continue to serve the employer as well
as earn a living.
It was mentioned that the
employers already approached claim that the workforce and the police
will not allow HIV awareness in the workplace, as it touches upon
socially unaccepted topics. Finding ways of involving the workforce in
HIV prevention would be useful, although this would entail difficulties
due to the fact that only about five per cent of the workforce is
organised enough to be easily addressed.
The group felt that the presence
of representatives of the ministry of labour and the Confederation of
Indian Industry (CII) would have been most useful to the discussion.
Having these institutions on board as partners within the response
strategy is crucial to reaching out to the large mass of the Indian
workforce. The group was informed that complaints concerning
compassionate employment related to HIV/AIDS are already on the rise.
Confusion about, or lack of
information on, CII policy on HIV/AIDS was noted as a persistent
problem. Unless it is known, a policy cannot be implemented. The group
was informed that there are more than hundred laws related to the well
being of the workforce, or the standards of workplace, but they are
rarely implemented. A large reason for this is that there is no
awareness of the laws. A person’s right to such information could be
successfully conveyed through the media, as it is a good way to empower
groups. The cost of HIV to large and small companies would be useful to
know, to motivate employers to plan for the impact and consequences of
Affirmative action or positive
discrimination would be beneficial in the form of insurance benefits and
health care benefits, which is the norm with diseases other than
the long-term perspective, protecting against discrimination in
employment would make both the employers and the employees better
prepared for the future and to respond to HIV/AIDS.
Women in vulnerable
only are sex workers in vulnerable situations but also single women,
those living on the streets, married young women, college students,
female migrant workers, women survivors of sexual abuse and rape, etc.
There was discussion on the issues of poverty, sexual abuse, neglect of
the girl child, and forced marriages, which could result in girls being
trafficked into prostitution. Further, police harassment, denial of
health care and other services add to women’s vulnerabilities.
While HIV/AIDS is seen as a multi-sectoral issue, there are contentious
issues with respect to law, matrimonial relations, and female sexuality,
which are based on power structures and certain cultural sanctions
regulating women in society. Cross cutting issues of class, gender,
sexuality and poverty deprive women of their Human Rights. Silence
around issues of sex and sexuality, comes in the way of HIV related
education, making informed and responsible choices difficult. It also
contributes to sex workers being seen as aberrations, deviants and
dissidents, which heighten their vulnerabilities.
HIV/AIDS has also thrown up areas of conflict over rights such as
informed consent, confidentiality and partner notification, which work
differently for men and women. The gender dimensions in these areas need
further investigation, understanding, and tackling.
the group there were divergent opinions on sex work. This included the
terminology used to define it, the decriminalisation of
sex work, and the right of sex workers to organise. Some
expressed the view that prostitution, increasingly replaced by the term
sex work, is a derogatory term that violates human dignity and Human
Rights. They urged that laws that target men and pimps should be framed
instead of recognising sex work and the status of sex workers. The
majority of the group participants argued however that such an approach
would cause constraints on preventive and curative strategies adopted
for HIV/AIDS. Using concept of morality within HIV prevention strategies
results in the construction of women as good and bad, and shifts
attention away from sexual behaviours, attitudes and practices. If the
focus were premised on Human Rights, it would instead lead to
empowerment, which has proven useful in HIV prevention efforts.
The group discussed Human Rights
violations with reference to access to health care and treatment, access
to information, bodily integrity and violence against women, and made
the following recommendations:
- Right to information and
communication: Accurate messages on transmission should be available
to different categories of women. Information should not be moralistic
and must address both preventive and curative aspects. Information
about the costs of treatment, including treatment of STDs, drugs and
counselling should also be available. Different packages should be
evolved and available for different population groups.
Right to association (form groups) and to work
collective for common issues should be fostered.
Need to work with Men: There is urgent need to
remove the silence around sexuality and to challenge the culture of
shame and blame linked to issues of female and male sexuality,
contraception choice and women’s right to bodily integrity
Legal changes for empowering women to achieve
equality: Laws governing property, marital rape, domestic violence and
other areas that perpetuate inequality need to be amended. There is need
to advocate for the Domestic Violence Bill and Marital Rape Bill.
Decriminalise sex work and focus on the
perpetrators: The group noted that a Bill is pending on ITPA. There is
need to decriminalise the prostitute not prostitution. This would reduce
the harassment and atrocities against sex workers by police and law
Rehabilitation and reintegration of sex
workers: This needs to be done with their participation and
Education for life skills: This is necessary
in order to empower girls and women.
Use of alternative media: For communication
and reaching out to as many groups as possible, effective use needs to
be made of alternative along with mainstream media.
Children and Young People
starting point of discussion at the session on children and young people
was that even though the rights of children have been articulated in the
Convention on the Rights of the Child (CRC), there is a need to change
law and strategy of intervention in such a way that children and young
people are seen as people capable of exercising their rights. In
this context, the following issues were debated:
Society’s obligation to children
Whether children have Rights and can demand Rights, specifically in the
context of the Right to information.
between the inability to access Rights and vulnerability to HIV/AIDS was
emphasised. Discussions dealt with children’s right to information, and
making services, especially reproductive health services accessible and
available to them.
The right to information: It was stated
Although the CRC recognises the right to
information of children, there is a low awareness of the existence and
content of the CRC amongst government officials and policy makers
The right to information is cardinal in the
context of HIV/AIDS, as it is seen that with information about sexual
health, the rates of sexually transmitted infections have gone down in
some groups of children.
There is a need for subsidisation of advocacy
and information dissemination by the Government.
There is too much focus on the electronic
media. Alternative channels of information dissemination that are
culturally suited for dissemination of information related to sex and
sexuality should be used. In this context it was suggested that the
right to information should be linked with the Right to education.
The strategy to realise the right to information,
especially in the context of HIV/AIDS should address the many different
contexts in which children live, such as streets, villages, urban
centres, schools, children involved in labour etc. In this regard there
is a need for a clear policy that recognises the limitations of social
viewing of TV programmes and of other modes of information
dissemination. Similarly, it is necessary to consider the particular
requirements of different contexts in designing the strategy. For
example, information dissemination to children living on the street may
be effective only through outreach programmes. It was also recognised
that the use of existing social structures, such as the family, may be
made to get information across to children in different settings.
policy should be clear as to what age group of children is targeted and
the language and information should be suited to the age. The policy
should be focussed on the various age groups beginning with the youngest
(between age 5 – 6).
information dissemination, some suggested modes include
telephone-counselling services, actual counselling, programmes through
educational institutions, etc.
was suggested that the media should be used as a connecting
agency that shares practical information (such as at which locations
services and information are available), rather than as an agency that
spreads mainly general messages. The group recognized that social
constraints hamper actual access to sensitive information: such as when
children/youth watch TV together with other family members who might
influence the information flow. A carefully structured strategy could
ensure that social constraints do not come in the way of children
accessing information and services.
Access to services: The following issues
Children in various circumstances need access to a range of friendly
services, including health care, sexual health services, night shelters,
counselling, etc. There is a need to have structures in place to provide
support systems for children. Presently, health care services are not
suited to access by children, especially with respect to sexual health.
It is therefore necessary to make the present health care sector more
children friendly and at the same time create a series of appropriate
contact points that are children and young people friendly.
There is a need for a co-ordinated response to children’s health needs,
especially in situations such as child sexual abuse. In this context it
was suggested that paediatric wings should have special facilities to
deal with Child Sexual Abuse that would make single point services such
as counselling, health care, legal assistance, etc., available to the
Other legal issues:
Juvenile Justice Act (JJA) was discussed along with its limitations. The
Juvenile Justice System presently focuses on the institutionalisation of
neglected children. This strategy has been seen to be ineffective and
has given rise to the perception amongst children that the State is an
enemy. It was felt that the JJA is sorely inadequate and needs to be
reviewed in order to facilitate the shift to alternate methods of
providing care (non-custodial care). In this regard, the ‘Juvenile
Justice (Care and Protection of Children) Bill 2000’, (which has since
been passed by the parliament and has received the assent of the
President) was mentioned.
There is a need for a comprehensive law to deal with child sexual abuse.
Such a law should cover sexual abuse of boys as well as girls.
Presently, it is only the rape laws and the provision dealing with
sodomy that provides criminal sanction to sexual abuse. These
substantive laws and the procedural laws, such as the Indian Evidence
Act and the Code of Criminal Procedure, are inadequate and inappropriate
in dealing with cases of child sexual abuse. Along with the new law,
systems must be put in place to provide support and services.
There is a need to make legal remedies accessible to children, to
empower them to demand their rights. This would include, among others,
the recognition of children as capable of giving valid consent.
Representatives from the medical sector raised the issue of young
people's capacity to give valid consent to an HIV test. In the absence
of the recognition of the capacity of a young person to give valid
consent, consent has to be taken from the legal guardian. This implies
that a young person who may have information about HIV and would like to
get tested would not be in a position to do so without the guardian’s
approval. This has serious implications for willingness to get tested
and access to services by adolescents. This issue also has implications
for the right to confidentiality. There is need for a clear policy to
deal with this dilemma.
People Living with or
Affected by HIV/AIDS (PWHA)
people living with or affected by HIV/AIDS, the key issues of concern
were identified as follows:
Right to treatment (which arises out of the right to life)
Right to information
Right to legal remedy
discussion concluded with the suggestion for placing the issues of
people living with or affected by HIV/AIDS in a larger framework, with
far reaching standards that could be made available in terms of
I. Right to treatment
terms of the right to treatment, the main concerns identified were the
limited access to medicines at affordable prices. Access to appropriate
health care is a concern, not only for HIV/AIDS patients, but also for
others. The group therefore suggested both long term and short-term
recommendations to all partners with reference to HIV/AIDS. These
recommendations not only pertain to the immediate concerns of the PWHA,
but also to the concerns of preventing and managing HIV/AIDS:
The cost of drugs should be reduced and drugs should be made affordable
by a waiver of all taxes/duties; (ii) CD4 testing is available only in
few places and needs to be increased commensurate with need; (iii) The
number of voluntary testing centres should be increased; (iv) Quality
control measures should be strengthened; (v) Technical and HIV/AIDS
training for technicians is needed; (vi) Training of private physicians
should be undertaken in collaboration with IMA; and (vii) Workshop on
WTO/TRIPS with special reference to availability and access to drugs
should be organised.
government could build up State capacity for manufacturing drugs for HIV
(Public Sector Undertakings); b) There is a need for a study of WTO
regime for post 2004 scenario, and c) The Office of the High
Commissioner for Human Rights and UN agencies could be approached for
proactively informing and impacting drug trade negotiations
II. Access to Information
Increased access to information
on policy positions is needed among all partners, to act and react to
HIV/AIDS in a proper and confident way, and for PWHA to lead an informed
Short term steps:
(i) Review IEC to make it
more positive, enabling it to reduce stigma with the purpose of
preventing HIV/AIDS transmission; (ii) Examine the role of Doordarshan
(and other Public Broadcasting companies) for IEC purposes; and (iii)
Arrange media workshops.
Long term steps:
(i) Negotiate public
broadcasting on HIV/AIDS by private channels by introducing tax relief;
and (ii) Include HIV/AIDS aspects in the Right to Information Bill.
III. Legal remedy
For enhanced availability and
access to legal remedies, proactive action is recommended as follows: