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Do we need a separate law on HIV/AIDS?

By Kajal Bharadwaj

Stigma and discrimination lead to the most significant human rights violations for persons living with HIV/AIDS and are the greatest barriers to preventing further infection and providing care, support and treatment. But India has no existing legislation which would cover discrimination on the grounds of HIV. And the framework of public health legislation is too limited to adequately cover HIV issues

Early legal responses to HIV in India

India’s first HIV litigation arose when HIV-positive activist Dominic D’Souza was incarcerated in the late-1980s. D’Souza, a resident of Goa, was found to be HIV-positive when he donated blood at a Goa hospital. The test was performed without his knowledge or consent, and the results were revealed, not to him, but to the local police. D’Souza was subsequently arrested and confined in an unused TB sanatorium pursuant to the Goa, Daman and Diu Public Health Act, 1985, an amendment to which, in 1986, authorised the State to mandatorily test any person for HIV and isolate them if they tested HIV-positive. Dominic’s mother, Lucy D’Souza, filed a writ petition before the Goa bench of the Bombay High Court arguing that the provision in question violated her son’s fundamental rights.

In its decision, the high court recognised the serious consequences of the State’s policy to isolate, but held that the interest of public health supersedes an individual’s rights, and while isolation may not be ‘ideal’, it was ‘practical’. (Although the Act in question still remains in the statute books, following the judgment, the government decided to stop implementing it; more recently, it was reportedly amended.)

Dominic’s case highlighted several aspects of law related to the HIV epidemic, beyond the application (or mis-application) of public health laws. Dominic was tested for HIV without his consent, his confidentiality was breached, and eventually when he was released he had lost his job.

Since that first case, violations of the rights of people living with or affected by HIV have increasingly come to light, many legal cases have been fought and won or lost, and many judgments have been pronounced by the courts. The HIV epidemic has thrown up a myriad legal issues and the responses of the judiciary have been mixed.

The framework of public health legislation is too limited and cannot be transposed to adequately cover HIV issues. Given this fact, and in the absence of any law or statute that specifically addresses the issues that are raised in the context of HIV in India, both appellants and the judiciary have had to make their complaints, decisions and rulings by extrapolation from a variety of sources of law.

  • Constitutional law: Where the law is based on principles contained in the Indian Constitution.
  • Common law: Laws that are established by precedent or case law, or, in other words, by judgments previously made in similar cases.
  • Statutory law: The written or codified laws of a country that are made by its legislature.
  • Personal law: Laws that are a part of an individual’s religious code.

Before discussing some of the key legal issues and cases in the HIV context, it is useful to understand the difference between law, human rights, ethics and policy. As stated above, law may come from various sources but is ultimately enforceable in a court of law. Human rights are the basic rights and freedoms that all human beings enjoy. These are enshrined in various international covenants and conventions to which India is a signatory. Human rights are also reflected in the fundamental rights chapter of the Indian Constitution, and the Supreme Court has held that provisions of an international convention or covenant, which elucidate and effectuate the fundamental rights guaranteed by the Indian Constitution, can be relied on by courts as facets of those fundamental rights and are hence enforceable as such.

Ethics refer to a set of principles and guidelines by which certain professions are guided. Often ethics are considered in the application of law -- for instance in determining whether a doctor has been negligent in his or her care of a patient, the courts will consider medical ethics guidelines. In India, medical ethics are also represented in law such as the Indian Medical Council (Professional Conduct, Etiquette and Ethics) Regulations 2002.

Policies and administrative orders of the government are statements of government intent and action; these are however not enforceable in a court of law. For instance, India’s National AIDS Prevention and Control Policy (NAPCP) states in part that “…when human rights are protected, fewer people become infected and those living with HIV/AIDS and their families can better cope with HIV/AIDS. Government recognises that without the protection of human rights of people who are vulnerable and afflicted with HIV/AIDS, the response to the HIV/AIDS epidemic will remain incomplete”. While the NAPCP supports an approach that ensures the protection of rights as a key element in successfully dealing with HIV/AIDS, its directives are unenforceable. So while the NAPCP states that there should be no discrimination based on HIV status, a person living with HIV who loses his/her job cannot approach a court of law on the basis of this policy.

Legal issues that arise in the HIV context

Discrimination
Stigma and discrimination triggered by HIV and AIDS lead to the most significant human rights violations for persons living with HIV/AIDS (PLHAs) and are the greatest barriers to preventing further infection, providing adequate care, support and treatment and alleviating the impact of the epidemic. PLHAs today face segregation in schools and hospitals under cruel and degrading conditions, denial or loss of employment, denial of shelter in the matrimonial home, arbitrary testing, violence and even murder.

A landmark anti-discrimination case in the Bombay High Court that affirmed the rights of PLHAs in the workplace was MX vs ZY [AIR 1997 Bom 406] where MX, a casual labourer, was tested for HIV by his employer, ZY, a public sector corporation, prior to being regularised in a permanent position. MX tested positive for HIV, and though otherwise fit, was rejected from regularisation, and his contract terminated. The court ruled that:

  • A government/public sector employer cannot deny employment or terminate the services of an HIV-positive employee solely because of his/her HIV-positive status, and any act of discrimination towards an employee on the basis of HIV-positive status is a violation of fundamental rights.
  • An HIV-positive employee’s services can only be terminated if a substantial risk of transmission is posed to co-employees or if she/he is unfit or unable to perform the essential functions of the job. Determining whether a person is unfit or incapable of performing the job depends on an individual inquiry (beyond a mere diagnostic test) into each specific case.

While the Constitution makes it clear that the public sector cannot discriminate on the basis of HIV, discrimination in and by the private sector is more difficult to address. While most countries have anti-discrimination legislation to cover discrimination in the private sector, this is not the case in India.

Consent
The principle of consent is based on the fundamental principle of the autonomy of an individual, and is recognised within the framework of the right to life and personal liberty in Article 21 of the Indian Constitution. Not obtaining informed and voluntary consent could result in a criminal charge of assault or battery or a civil claim for damages or trespass to a person.

In India, mandatory HIV testing policies were, as in the case of other countries, mooted at the beginning of the epidemic. The NAPCP recognises the counter-productive nature of mandatory testing and notes that the State “feels that there is no public health rationale for mandatory testing of a person for HIV/AIDS”. In 1995, the National HIV Testing Policy was formulated to lay down protocols for testing to monitor the trend of HIV infection, to test blood or organs or tissues for ensuring safety to the recipient, to identify individuals with HIV infection for diagnosis and voluntary testing purposes and for research. Mandatory screening for HIV is recommended only for blood transfusion safety and for screening donors of semen, organs, or tissues to prevent transmission to the recipient of the biological products. In these circumstances, the tests cannot be linked to the identity of the individual.

However, the Indian private sector remains virtually uncontrolled while adopting discriminatory practices such as mandatory testing for employment and access to services, particularly healthcare. Mandatory testing is also being conducted by the armed forces.

Confidentiality
Although India does not have a specific law on confidentiality, the courts have construed Article 21 of the Constitution -- the fundamental right to life and liberty -- to include the right to privacy, from which is derived the right to confidentiality. This implies that every person has the right to a sphere of activity and personal information that is exclusive to them and that they have the right to disclose as they please. In legal terms, confidentiality exists within the parameters of a special relationship (doctor-patient, attorney-client, for instance) that is dependent on factors such as mutual trust, or to impart services.

The maintenance of confidentiality of an individual’s health status is one of the cornerstones of a rights-based legal and public health response to HIV/AIDS. People avoid a healthcare system that violates their confidentiality and leads to their stigmatisation, which ultimately drives the epidemic underground, making attempts to control it ineffective. However, the principle of confidentiality is not absolute. Two divergent interests are balanced in legal approaches to this issue -- the public interest of maintaining the confidentiality of an individual vis-à-vis the public interest in disclosure of the information.

In the Supreme Court case of Mr X vs Hospital Z [(1998) 8 SCC 296], the Supreme Court chose to pass a judgment that:

  • An HIV-positive patient who may transmit the disease to his or her prospective spouse is not entitled to the maintenance of confidentiality, since the life of the spouse has to be saved. Therefore, a hospital can disclose a patient’s HIV status to his/her prospective spouse (partner), and in fact, since acts that are likely to spread communicable diseases are a crime under the Indian Penal Code, the failure of the hospital to inform the spouse of the disease would make them participant criminals. The court also ruled that since being infected with a venereal disease (read HIV/AIDS) is grounds for divorce under Indian matrimonial law, a person suffering from such a disease has no right to get married until they are cured. 

In its judgment on the appeal, while the Supreme Court rescinded its earlier observations regarding marriage, and restored the right to marry for PLHAs, it upheld its previous decision about partner notification maintaining that this disclosure was permissible.

Access to treatment
Article 21 of the Indian Constitution recognises every individual’s right to life and liberty, which the Supreme Court has held includes the right to health. It has also held that the maintenance and improvement of public health must rank high amongst the State’s obligations, as these are indispensable to the very existence of the community. Additionally, the courts have ruled that providing adequate medical facilities for people is an essential part of the government’s obligation. Article 47 of the Indian Constitution which is a Directive Principle of State Policy also directs the State to regard the improvement of public health as amongst its primary duties. Therefore, the Indian government has a duty to protect and preserve the health of its citizens, which in the context of HIV/AIDS addresses the crucial issue of providing universal access to treatment.

Criminalising injecting drug use
Criminalising drug users pushes them underground and exposes them to exploitation, harassment, abuse and arrest by the law enforcement machinery. ‘Harm reduction’ is the umbrella term used to explain interventions that aim to reduce the negative health consequences of a specific behaviour (for example, drug use) rather than eradicate the behaviour. The two most widely practised models of harm reduction in the context of drug use are needle syringe and exchange programmes, or NSEPs (where clean needles are provided in exchange for used ones in order to reduce the risk of transmission of HIV and other blood-borne diseases) and drug substitution programmes (where drug users are weaned off illegal opiates by being put on a regimen of buprenorphine in a supervised and regulated setting). Both these interventions are controversial because they are seen as abetting the criminal offence of drug use -- giving a drug user a clean needle, which is drug apparatus, assists him in the crime of injecting drugs. Studies show that these programmes are successful in controlling the spread of HIV without increasing drug use while also bringing down crime. Such programmes do exist in some parts of India, but despite the law, and are constantly in fear of being caught, harassed and even shut down. The absence of laws protecting such crucial interventions leaves them open to the caprice of law enforcement personnel in preventing or permitting them.

Criminalisation of sex work
The HIV epidemic has led to increased attention on sexual behaviour, particularly the behaviour of populations that have multiple sex partners. In this context, sex workers have come to be seen as a ‘high-risk group’, being susceptible to sexually transmissible infections and HIV. Concerns about the spread of HIV from high-risk groups into the bridge (clients) and general population (regular sexual partners of clients, including wives) led to the introduction of HIV prevention interventions among sex workers. 

The Immoral Trafficking Prevention Act, 1986 (ITPA), the main statute dealing with sex work in India, does not criminalise prostitution or prostitutes per se, but mostly punishes acts by third parties facilitating prostitution, such as brothel-keeping, living off the earnings of sex workers, and procuring. There are exceptions however, and practising prostitution in the vicinity of public places and soliciting are two activities for which sex workers are penalised. The criminalisation of soliciting sex greatly diminishes the sex worker’s ability to negotiate the terms of service, including income and condom use, and pushes sex workers underground or into ghettoised locations where they are difficult to reach and more vulnerable to abuse. Peer-based interventions have been hampered as women carrying condoms are apprehended by the local police on charges of ‘promoting prostitution’. Ironically, the same sex workers who are engaged by one arm of the government to distribute condoms and carry out HIV prevention efforts among sex workers are criminalised by another arm for doing just that.

In 2003, Sahyog Mahila Mandal, a sex workers collective in Gujarat, challenged the provisions of ITPA on grounds that they violated the fundamental rights guaranteed under Articles 14 (equality before law), 19 (right to freedom of speech) and 21 (right to life and personal liberty -- and thereby livelihood). The court’s judgment in Sahyog Mahila Mandal & Another vs State of Gujarat & Ors [Special Civil Application No 15195 of 2003 with Special Civil Application No 4594 of 2003] was as follows:

  • The court rejected the sex workers’ contention that sex work ought to be recognised as a legitimate means of livelihood and that they should be permitted to carry on their work outside the notified area.
  • The court further held that the restriction of personal liberty imposed by Section 7, ie the deprivation of liberty to carry on prostitution in public places, is in the interest of the general public and is in keeping with procedures established by law as well as the Convention for Suppression of Trafficking in Persons and of the Exploitation of Prostitution of Others to which India is a signatory.
  • The court also said that ITPA was aimed at combating trafficking, and that rescuing and rehabilitating trafficked women was a part of its objective. Therefore, the special powers given to the police (search without a warrant) did not violate any fundamental rights.

The need for a law on HIV

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 healthcare setting, lack of adequate resources pits the rights of PLHA (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 PLHAs 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 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 various laws. In some of these countries HIV-specific legislation may be found in the context of HIV testing or confidentiality. Some countries have enacted omnibus HIV legislations.

India has no existing anti-discrimination legislation which would cover discrimination on the grounds of HIV status. 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, though the NAPCP mandates a rights-based approach, it 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 exchange programmes. Existing legislation could nullify these initiatives 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 also 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 of 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 coordination with the National AIDS Control Organisation (NACO) and State AIDS Control Societies (SACS) and their representatives, along with NGOs, were held in the north, south, east, west and northeast of the country. Groups and communities with specific perspectives on the epidemic like PLHAs, 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), the 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 discriminationrelated 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 considered in the public imagination to be ‘vectors’ of the epidemic, such as sex workers, injecting drug users, 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 consentfor 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 the risks, benefits and alternatives available, while HIV research may take place only after the research subject is informed of the 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 specific counselling regulations that would create an atmosphere conducive to individual decision-making. Consent for HIV testing under the Bill is not required when it is ordered by the 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 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, antiretroviral 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: Strategies for risk reduction are actions that minimise a person’s risk of exposure to HIV/AIDS and include programmes that promote safer sex, provide clean needles to drug users, or provide information to children. Typically, they are provided to communities and persons often subject to criminal sanction under various laws, like 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. Communication 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 need to create IEC specific to their needs. The Bill obligates the State to institute IEC programmes that are evidence-based, age-appropriate, gender-sensitive, non-stigmatising, 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 trial, 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 community service. In terms of implementation, the Bill establishes HIV/AIDS authorities that will take over from NACO and SACS 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, provision of maintenance and the right of residence for HIV-positive women. The right of pregnant HIV-positive women to proper counselling and 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 addressed at 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 underground so that HIV/AIDS is no longer a synonym for fear, neglect, discrimination and violence but for empowerment, compassion, united action and triumph. 

(Copyright Lawyers Collective HIV/AIDS Unit (www.lawyerscollective.org). Kajal Bharadwaj is with the Lawyers Collective HIV/AIDS Unit)

InfoChange News & Features, January 2008