Report of the National Conference on Human Rights and HIV/AIDS
NEW DELHI, 24-25 November 2000
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
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 terms.
Marginalised 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 and vulnerability.
It 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 get tested.
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.
HIV 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.
The 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.
The 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 Commission
Human Immunodeficiency Virus / Acquired Immunodeficiency Syndrome.
“Dignity is the entitlement of all as long as life exists”
Justice J.S. Verma, Chairperson
National Human Rights Commission
25 November 2000
The 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 communities.
Another purpose of the action points is to complement the International Guidelines on HIV/AIDS and Human Rights with practical solutions in Indian context.
Consent and testing
§ 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.
§ Persons detected at routine HIV screening at blood banks, should be referred to counselling centres at nearby health care facilities, for further evaluation and advice.
§ The physical 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.
§ Official ethical 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.
§ A comprehensive 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.
§ The availability 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 timelines.
§ Guidelines for 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’
§ Train and 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.
§ Explore 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.
§ The legal framework, administrative procedures, and professional norms should be revised to ensure enabling environments, which foster and respect confidentiality.
§ Develop guidelines/regulations for beneficial disclosure of testing results. Disclosure without consent should only be permitted in exceptional circumstances defined by law.
Discrimination in Health Care
§ Train and 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 user-friendly.
§ Implement stigma 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.
§ Develop 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.
§ Establish a multi-sectoral consultative body on HIV/AIDS to provide advice and dissemination of information to health care workers.
Discrimination in Employment
§ Adoption of 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 compassionate employment.
§ Train 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.
§ Train and 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.
§ Raise awareness 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.
§ Commission an 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.
§ Introduce affirmative action/positive discrimination in the form of insurance and health care benefits and introduce medical insurance schemes to cover HIV positive employees.
§ Increase focus 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 Environments
§ Effectively 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.
§ Adopt legal 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.
- The 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.
- All 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 treatment.
§ Start alternate 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.
§ Increase 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 People
§ 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.
People Living with or Affected by HIV/AIDS (PWHA)
§ Formulate institutional guidelines with standards placing the issues of PWHA in a larger framework.
§ Scale up 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.
§ Commission a 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.
§ Increase legal 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
§ Review 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 Bill.
§ Immediately 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 sector.
§ Revise and 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.
§ Legalise any sexual activities undertaken with consent between adults, and in connection with this adopt a clearly defined age for sexual consent.
§ Legitimise and 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 implementation.
Respecting Human 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.’
Acronyms and Abbreviations
AIDS Acquired Immune Deficiency Syndrome
ASO AIDS Service Organisation
ANC Ante Natal Care
CDC Centre for Disease Control (in Atlanta, USA)
CII Confederation of Indian Industry
CRC Convention on the Rights of the Child, 1989
CEDAW International Convention on the Elimination of All Forms of Discrimination Against Women, 1979
HIV Human Immunodeficiency Virus
ICPD International Conference on Population and Development, Cairo 1994
IEC Information, Education and Communication
IDU Injecting Drug Use [er, -ers]
IMA Indian Medical Association
INP+ Indian Network for Positive People
IPC Indian Penal Code
ITPA Immoral Traffic in Women and Girls Prevention Act, 1986
JJA Juvenile Justice Act
KNP+ Karnataka Network for Positive People
NACO National AIDS Control Organisation
NDPS Narcotic and Psychotropic Substances Act
NGO Non Governmental Organisation
NFHS National Family Health Survey
NHRC National Human Rights Commission
OHCHR Office of the [UN] High Commissioner for Human Rights
PEP Post Exposure Prophylaxis
PHC Primary Health Care Centres
PWHA Person/People Living with HIV/AIDS
RTI Reproductive Tract Infections
SACS State AIDS Control Societies
STD Sexually Transmitted Disease
STI Sexually Transmitted Infection
TRIPS Trade Related Aspects of Intellectual Property Rights
UNAIDS Joint United Nations Programme on HIV/AIDS
UNHCHR United Nations High Commissioner for Human Rights
UNICEF United Nations Children’s Fund
UNIFEM United Nations Development Fund for Women
VCT Voluntary Counselling and Testing
WTO World Trade Organisation
Background and Objectives
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.
The background 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 Employment 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 Women 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 and 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 Sex Workers’ vulnerability to HIV/AIDS. The paper on People Infected/Affected 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 Sexual Minorities 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 Delhi.
Recount of the Proceedings
The Inaugural Session
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 counterproductive.
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.
Consent and Testing
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.
The 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.
The 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 behalf.
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.
The 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 was recognized.
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 public health.
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.
Discrimination 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.
Discrimination in Employment
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 also.
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:
a) 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 regulations.
b) 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 regulations.
c) 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.
d) 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.
e) 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 HIV/AIDS.
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 HIV/AIDS.
In 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 environments
Not 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.
In 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.
2. Right to association (form groups) and to work collective for common issues should be fostered.
3. 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
4. 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.
5. 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 enforcement agencies.
6. Rehabilitation and reintegration of sex workers: This needs to be done with their participation and consultation.
7. Education for life skills: This is necessary in order to empower girls and women.
8. 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
The 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.
A link 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 that:
· 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.
The 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).
On information dissemination, some suggested modes include telephone-counselling services, actual counselling, programmes through educational institutions, etc.
It 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 were highlighted:
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 child.
Other legal issues:
The 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)
For people living with or affected by HIV/AIDS, the key issues of concern were identified as follows:
I. The Right to treatment (which arises out of the right to life)
II. The Right to information
III. The Right to legal remedy
The 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 institutional guidelines.
I. Right to treatment
In 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:
Short term steps:
(i) 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.
Long term steps:
a) The 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 ‘positive life’.
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:
(i) Introduce legal aid cells; (ii) Spread legal education; and (iii) Guarantee anonymity in case of HIV positive status.
(i) Review all legislation impeding effective HIV interventions; (ii) Examine anti-discrimination, health legislation and disability legislation; and (iii) Introduce affirmative action (positive discrimination) of PWHA.
The particulars of marginalized populations such as Intravenous Drug Users (IDU) and Men Having Sex with Men (MSM) were discussed. The difficulties in carrying out prevention work among these groups are reinforced by the existing legal framework within which they live and the stereotyping that masks this reality.
There is a rapid conversion to injecting drug use especially among socio-economically marginalized populations. The environment within which both IDU and MSM exist is to a large extent ‘underground’. This is due to the existing legislation, which prescribes heavy penalties on very small possession of illegal drugs (which has led to increased misuse of prescription drugs), and makes homosexual acts illegal. These groups also report harassment by the law enforcers as a result of stereotyping and stigma. The consequence of this situation is that these populations are difficult to reach with information and HIV/AIDS prevention work: unsafe practices not only in drug use but also in sexual activities of both groups are carried out ‘underground’.
Therefore, to more successfully prevent and manage HIV/AIDS among these marginalized populations, a revision of the existing laws and processes is strongly recommended. This would include both the NDPS Act, and Section 377 of the IPC. In terms of preventing HIV/AIDS among men who have sex with men, it would be most useful to make section 377 IPC obsolete, and instead review the legislation and endeavour to define more clearly the age of sexual consent.
For HIV/AIDS interventions among drug users, especially IDU, stronger legal and political support for innovative harm reduction programmes of needle exchange and condom distribution is necessary. If the injecting drug users are out of reach of prevention programmes because of fear from being arrested or harassed, the problem of HIV/AIDS is pushed under ground.
In a nutshell, the protection of Human Rights and the empowerment of marginalized populations would, in the context of HIV/AIDS prevention, create an environment that would enable India to reach the most vulnerable with HIV/AIDS messages and supporting mechanisms.
Options for the Future
The recommendations emerging from this conference clearly point out that inter-ministerial collaboration and a joint response would facilitate the control of HIV/AIDS in our country. The majority of ministerial departments have a role to play in HIV/AIDS prevention, and this report emphasises the importance of their doing so as soon as possible.
The socio-economic impact of HIV/AIDS in some other countries clearly indicate to us in India that we need to work together to create the best environment for HIV/AIDS prevention and management. Promotion and protection of Human Rights for all is a necessary component of such an enabling environment, not only in the context of HIV/AIDS, but in the context of handling other Public Health issues, poverty reduction and human development in general.
Protecting Human Rights in a country with over 1 billion people, dispersed in 35 States/Union Territories, is bound to be a challenging process. But we all agree that the process of protecting Human Rights needs to move forward quickly and be strengthened.
The realisation of rights will be possible, if adequate resources are made available for both HIV/AIDS control and Human Rights protection. As the Conference participants have reconfirmed, these two issues go, hand in hand. In the global environment within which India finds herself today, the responsibility of allocation of resources lies not only with the Indian Government, but also with the International Community. That is why I call upon all partners to India (foreign and domestic governments, non-governmental foreign and local organisations, as well as the business community) to support the follow-up of the recommended actions emerging from this Conference.
In light of NHRC’s role as the Defender of those experiencing Human Rights violations (mainly the marginalized and vulnerable populations), the observations of this conference and those of NHRC in the future, should be included in the overall framework governing the response to effectively tackle HIV/AIDS in India.
Let us control HIV/AIDS together!
J V R PRASADA RAO
Special Secretary (Health)
Project Director, NACO
29 June 2001