Atiya Bose and Kajal Bhardwaj of the Lawyers Collective explain why a specific statute to address HIV/AIDS - its prevention, its treatment, and the manner in which we respond to the people most affected by it - is necessary. The HIV/AIDS Bill 2007, that is to be presented to Parliament, covers all these aspects
HIV has revealed the inadequacies of both existing laws as well as of the health infrastructure in India in an unprecedented way. It has highlighted most particularly the tensions and conflicts between health, human rights, state power and wealth. In the health care setting, the lack of adequate resources pits the rights of people living with HIV/AIDS (to treatment) against the rights of doctors and healthcare workers (to universal precautions) making everybody vulnerable, and exacerbating discrimination.
Existing laws and policies reveal deeply rooted biases and inherent contradictions, which make it difficult for those living with aids and vulnerable people to access services. Prime examples are the criminalisation of sexual activity between men, soliciting for sex work or injecting drug use, resulting, as discussed earlier, in the isolation of these communities, and in the negation of their rights.
Different countries have adopted different legal strategies to address HIV. In some countries HIV has been included in existing anti-discrimination and health legislations to address the issues discussed above. Accordingly, discrimination on the basis of HIV is prohibited in the US under the Americans with Disabilities Act 1990 and in the UK under the Disability Discrimination Act 1995. In some of these countries HIV specific legislation may be found in the context of HIV testing or confidentiality like the Pennsylvania Confidentiality of HIV-related Information Act, 1990. On the other hand some countries have enacted omnibus HIV legislations such as the Cambodian Law on Prevention and Control of HIV/AIDS 2002 and the Philippines AIDS Prevention and Control Act, 1998 respectively.
Why we need a special law on HIV
India has no existing anti-discrimination legislation which would cover discrimination on the grounds of HIV. Nor is there sufficient existing health legislation in India to address all the issues discussed above. Specifically, a law on HIV is required for the following reasons:
- The vagaries of common law: Most legal issues that arise in the context of HIV/AIDS are governed by common law – where law is defined by principles set down in prior case law by judges. This allows for the personal predilections of judges to impact cases of HIV and AIDS, an approach that lends itself to inconsistency and to rulings that are sometimes in opposition to the existing, well thought out policy of the government.
- Addressing discrimination: The guarantee of equality in the Indian Constitution is available only against state entities and there is no restriction on discriminatory practices in the private sector, be it in healthcare, employment, or education. Most countries have enacted anti-discrimination laws applicable to the private sector to ensure a universally applicable legal system.
- Insufficiency of policies: As we have seen earlier, the National Aids Prevention and Control Policy (NAPCP) though it mandates a rights-based approach, does not have the status of law and is neither binding nor enforceable in court.
- Law reform: There are various interventions amongst marginalised populations in India that effectively check the spread of HIV, notably, condom promotion and needle syringe and exchange programmes. Existing legislation could set these initiatives at naught and the interventions have to be legally protected to ensure that they continue providing services and information that empower persons to protect themselves and others from HIV/AIDS.
- Fulfilling international obligations and commitments: In 2001, the United Nations General Assembly adopted the Declaration of Commitment on HIV/AIDS. India as a signatory to this Declaration is committed to general obligations such as the prohibition of discrimination and specific obligations such as ensuring that by 2005, at least 90% of young persons aged 15 to 24 have access to information, education, and services necessary to reduce their vulnerability to HIV. The Indian government is obligated therefore to enact legislation that will fulfil these and other obligations such as the International Covenant on Economic, Social and Cultural Rights and the Convention on the Elimination of all forms of Discrimination Against Women
For all these reasons we need a specific statute to address HIV/AIDS - its prevention, its treatment, and the manner in which we respond to the people most affected by it. A nationally applicable rights-based statute would serve several purposes: it would provide holistic coverage, consistency, clarity and predictability in order for courts to effectively pass judgment in HIV/AIDS cases; it would provide certainty for people to seek remedy from a strong, reliable legal system; and it would enshrine ethical, equitable and just practices that become harbingers for change in the many, many other contexts and spheres in which people are continuously disempowered. It will ultimately reflect the ideals and principles for a more inclusive and humane society.
The HIV/AIDS Bill 2007
A unique joint initiative of the government and civil society has led to the preparation of a comprehensive HIV/AIDS Bill that will soon be introduced in Parliament. The HIV/AIDS Bill 2007 is the culmination of a rigorous three-year research, drafting and consultative process that has involved stakeholders from across the country and from every region.
Regional level consultations organised in co-ordination with the National AIDS Control Organisation and State AIDS Control Societies and their representatives along with NGOs were held in the north, south, east, west and the northeast of the country. Groups and communities with specific perspectives on the epidemic like PLHA, sex workers, men who have sex with men, injecting drug users, healthcare providers, workers, women, children and legal experts have discussed and debated the Bill at length. Ultimately it is these discussions, debates and consultations that have shaped the bill. Drafted by the Lawyers Collective HIV/AIDS Unit (LCHAU), this Bill embodies principles of human rights and seeks to establish a humane and egalitarian legal regime to support India’s prevention, treatment, care and support efforts vis-à-vis the epidemic.
Highlights of the Bill:
Prohibition of discrimination: The HIV/AIDS Bill specifically prohibits discrimination related to HIV/AIDS in both the public and private spheres. Under the Bill, no person may be discriminated against in employment, education, healthcare, travel, insurance, residence and property, etc based on their HIV-related (be they infected or affected) status.
It covers all acts and omissions that are discriminatory on the basis of HIV status, whether it is actual or perceived and whether the person discriminated against is HIV-positive, a relative, a friend, or is associated with HIV as in the case of groups that are considered in the public imagination as ‘vectors’ of the epidemic such as sex workers or injecting drug users or truckers or migrants. (Collectively, in the Bill, these persons are referred to as ‘protected persons.’)
Further, since discrimination in healthcare settings is attributed largely to the lack of healthcare workers’ right to a safe working environment, the Bill imposes an obligation on healthcare institutions to provide universal precautions and training to all healthcare workers. The Bill also addresses hate and discriminatory speech, making it punishable.
Informed consent for testing, treatment and research: The Bill requires specific, free and informed consent for HIV related testing, treatment and research. HIV testing must be accompanied by pre- and post-test counselling, HIV treatment may commence only after an explanation of risks, benefits and alternatives available while HIV research may take place only after the research subject is informed of aims, methods, sources of funding, possible conflicts of interest, institutional affiliations of the researcher, potential benefits and risks, possible discomfort and the right to withdraw consent.
The Bill statutorises existing standards of informed consent and exceptions to it while also increasing access to healthcare services for children and young persons. The Bill also requires special attention to be given to women and young persons and for specific counselling regulations that will create an atmosphere conducive to individual decision-making. Consent for HIV testing under the Bill is not required when it is ordered by courts, required for testing blood, organs, semen etc., or for surveillance.
Disclosure of information: The Bill guarantees the confidentiality of HIV-related information (including the HIV status of a person) and outlines the exceptions under which disclosure can be made - ‘partner notification’ and the ‘duty to prevent transmission.’ The Bill specifies the exact protocol for, and circumstances in which, a healthcare provider can notify the partner of an HIV-positive person about their status. It recognises the particular vulnerability of women to violence in such situations and specifies that partner notification should not take place if there is an apprehension of violence. The Bill also imposes a duty on all HIV-positive persons to prevent transmission through various measures like using safer sex practices or informing their partners. Here too the duty does not exist in the presence of violence.
Right to access treatment: The Bill provides for universal and free access to comprehensive HIV related treatment, prevention, care and support. This includes: services, information, voluntary testing and counselling services in every sub-district, counselling, medicines for opportunistic infections, post exposure prophylaxis, anti-retroviral therapy, nutritional supplements, prevention of mother-to-child transmission, diagnostics, etc. Many of these services are already part of the national HIV/AIDS programme including the ARV rollout plan of the Indian government. Under the Bill, access to treatment must be provided in a sustained, accessible and acceptable manner. The Bill also requires the National HIV/AIDS Authority to notify protocols for HIV related treatment and testing.
Risk reduction:Risk reduction strategies minimise a person’s risk of exposure to HIV/AIDS. It includes programmes that promote safer sex, provide clean needles to drug users, or provide information to children. Since they are provided to communities and persons often subjected to criminal sanction under various laws (sex workers, injecting drug users etc), the Bill specifically protects risk reduction strategies from civil and criminal liability and law enforcement harassment. This does not mean, for instance, that injecting drug use is legalised. It simply means that providing clean needles to protect a person from HIV cannot be stopped on grounds that this promotes drug use.
Information, Education and Communication (IEC): Information is the key to any successful prevention programme. The Bill treats the government IEC programme as an essential component in the fight against HIV/AIDS. Communications messages should be positive and evidence based, and should speak not just about prevention but also about care, support and rights. The Bill recognises the right of all persons to information and education relating to health and the protection of health from the State, and focuses particular attention on women and young persons and on the necessity of creating IEC specific to their needs. The Bill obligates the State to institute IEC programmes that are evidence-based, age-appropriate, gender-sensitive, non-stigmatizing, and non-discriminatory.
Implementation and grievance redressal: The HIV/AIDS Bill creates innovative grievance redressal and implementation mechanisms. The Bill provides for health ombudsmen to be appointed in every district to provide easy and quick access to health services for all persons should they be discriminated against or denied treatment. It also provides for internal complaints mechanisms in institutions. Grievance redressal provisions also include special procedures in courts like suppression of identity, speedy trials etc. The emphasis is on quick trials and creative redressal. Thus a case related to discrimination could see a court awarding damages and directing the person who discriminated to undergo sensitisation and training and doing community service. In terms of implementation the Bill establishes HIV/AIDS Authorities that will take over from the national and state aids control societies with an independent and accountable structure and expanded policy and programme base.
Special provisions: The Bill specifically recognises certain rights for women, children and persons in the care and custody of the State who due to social, economic, legal and other factors find themselves more vulnerable to HIV and are disproportionately affected by the epidemic. Prisoners and detainees are provided with specific access to risk reduction strategies, counselling and healthcare services.
The Bill attempts to recognise and address some underlying causes of the vulnerability of women to HIV and suggests the registration of marriages, the provision of maintenance and the right of residence for HIV-positive women. The right of HIV-positive women who are pregnant to proper counselling and to decide on treatment options is specifically recognised. The Bill also recognises the link between sexual violence and HIV and provides for counselling and treatment of sexual assault survivors and directs the setting up of sexual assault crisis centres.
Special provisions for children and young persons include the right against discrimination in education and to access healthcare services and information in their own right. This is particularly important for street children and those living on their own. It also provides for protection of inheritance and property rights and recognises community-based alternatives to institutionalisation for vulnerable and affected children; provisions that were a direct result of feedback from the consultation with children’s groups.
The HIV/AIDS Bill 2007 envisages a detailed and carefully planned strategy to address the HIV epidemic through an extensive prevention, care, treatment and support programme that entails widely disseminated and easily accessible IEC, an accountable and accessible government response, access to healthcare services and treatment and the protection and promotion of the rights of persons living with or affected by HIV. One of the key visions of the Bill is to establish a government initiative on HIV/AIDS that is completely accountable and that is implemented at every stage with consultations.
It is worth reiterating that in the HIV context, only by protecting the rights of those most vulnerable can we hope to tackle the epidemic and thereby protect all. By providing for a right against discrimination, to informed consent, to confidentiality and to access treatment, we encourage people to come forward for testing with the understanding that there will be no adverse consequences to their HIV-positive status and if there are, the law will offer protection.
By recognising the rights of women, we empower them to demand information and safer sexual practices from their partners. By premising the IEC programme on the right to information, we empower all persons to demand IEC in their languages, regions and to suit their specific needs. By protecting needle exchange, condom promotion and sexual health information programmes, we help those most marginalised in society by morality and law to protect themselves and others from HIV. By recognising the right of all citizens to question their government we make government bodies accountable, consultative and democratic, creating a strategy to tackle the HIV epidemic where every person is a stakeholder, every voice is included and no one is left behind. We help the epidemic emerge from the underground so that HIV/AIDS is no longer a synonym for fear, neglect, discrimination and violence but for empowerment, compassion, united action and triumph.
(Atiya Bose is media and communications officer and Kajal Bhardwaj is head of the technical and policy unit at the Lawyers Collective HIV/AIDS Unit. The Lawyers Collective HIV/AIDS Unit was set up in 1998 based on a realisation that law, policy and judicial action that upheld the human rights framework had a central role to play in effectively containing the HIV epidemic. The Unit comprises lawyers, law students and activists working in offices in Mumbai, Delhi and Bangalore, and offers free legal services to persons living with, affected by or vulnerable to HIV and undertakes advocacy and research initiatives related to law, rights and HIV.)
© Lawyers Collective HIV/AIDS Unit www.lawyerscollective.org
Infochange News & Features, February 2008