Need for a rights sensitive legislation
ECONOMICALLY marginalised and the socially weak sections of society are most susceptible to HIV/AIDS. This explains why the high prevalent destinations where the HIV virus breeds in geometric proportions are populous pockets in the least developed world. Within India, those who are unable to protect their physical autonomy are most exposed to the virus. Weaker sections of society, those living at subsistence levels, are equally prone to the virus.
The spread of the virus afflicting the heterosexual population is causing widespread concern. It is perhaps not necessary to enter into a debate on the numbers that could be afflicted with HIV/AIDS by 2010. Those who project the figure at 25 million may well be accused of being alarmist. Presently, official figures suggest that almost four million people in India are stricken with HIV/AIDS. Any increase would certainly cause a human tragedy of historic proportions impacting on India’s economic and national security. What is of fundamental importance is to ensure that civil society is not caught unawares. The state must be equipped to combat any such eventuality both with resources and manpower.
Care and prevention will itself consume the already inadequate resources allocated to deal with HIV/AIDS. Perhaps the only hope is in the development of an HIV/AIDS vaccine pursuant to the Memorandum of Understanding (MoU) between the National AIDS Control Organization (NACO), the Indian Council for Medical Research (ICMR) and the International Aids Vaccine Initiative (IAVI). As part of the MoU, Indian scientists are actively participating in the development of a vaccine suitable to the strain of the virus in India. Yet, we cannot be complacent.
State and civil society must gear themselves into a state of readiness to deal with the necessary fallouts accompanying the spread of the virus and its impact not only on those afflicted by the virus but on others who run the risk of contagion. This brings into sharp focus human rights issues that will emerge and which civil society will have to respond to in the context of existing international human rights instruments. The state will have to develop a national framework, acceptable norms and institutions to protect individuals whose rights might be infringed.
It may be relevant to flag existing human rights instruments such as the Universal Declaration on Human Rights (UDHR); the International Covenant on Economic, Social and Cultural Rights (ICESCR); the International Covenant on Civil and Political Rights (ICCPR); the Convention on the Elimination of all forms of Discrimination against Women (CEDAW); the Convention on the Rights of the Child (CRC). Recognising human rights emanating from these instruments and interpreting them in the context of the rights of those afflicted with HIV/AIDS is a step forward. Such an exercise reduces the vulnerability of HIV/AIDS and mitigates the adverse impact of the epidemic involving human rights violations.
Some of the key principles emanating from existing human rights instruments referred to above involve the right to the highest attainable standards of physical and mental health, the right to information and education, the right to privacy and the right to share any scientific advances and their benefits in the context of HIV/AIDS.
Article 25 of the UDHR, Article 12 of the ICESCR, Article 12 of the CEDAW and Articles 24 and 25 of the CRC incorporate the concept that individuals in civil society have the right to be provided, in the context of the HIV/AIDS, with the necessary health care infrastructure and personnel to enable them to attain acceptable standards of physical and mental health (such as treatment for sexually transmitted infections, provision of male and female condoms and voluntary counselling and testing) together with drugs to combat opportunistic infections, drugs to deal with pain and suffering and the provision for anti-retrovirals.
Article 19 of the UDHR, Article 17 of the ICCPR and Article 37 of CRC highlight the principles of the right to information and education. In the context of HIV/AIDS, India must recognise that the state must provide information and education relating to sexual health and HIV prevention. This requires a proactive state to make essential information relating to HIV/AIDS available and easily accessible and that a proper mechanism be put in place for dissemination. It is only a sustained campaign of awareness that will enable civil society to understand not only the seriousness of the affliction but also develop societal attitudes in dealing with those afflicted with the virus.
Article 12 UDHR, Article 17 ICCPR and Article 37 of CRC relate to privacy and in the context of HIV/AIDS, India must ensure that counselling and testing are voluntary and that the HIV tests results are kept confidential. We must guarantee the right of nondisclosure to third parties.
Article 27 of UDHR and Article 15 of ICESCR will ensure wider access to basic pain prophylaxis and antibiotics for the treatment of sexually transmitted infections and HIV-related conditions as well as to HIV/AIDS related treatment and therapies. This necessarily raises issues related to pricing and accessibility, especially in the context when the affliction affects those who fall within the least developed socioeconomic sections of society.
It is of significance to note that the integral link between HIV/AIDS and human rights was also recognised at the United Nations General Assembly special session on HIV/AIDS in 2001.
The spread of the HIV/AIDS requires a multifaceted response from civil society. Larger investments by the state reflecting its commitment to deal with the affliction, alliances forged by the state with various stake-holders in society, including NGOs, corporate entities and civil society’s own response when confronted with the spread of the virus are central to our efforts to deal with HIV/AIDS. In order that the response is purposive and effective, what is of the essence is a comprehensive legislative response.
The nature of such a response predicates accepting that those afflicted with the virus are subjected to unjustified treatment. There are contemporary reports about serious encroachments of the human rights of those afflicted, and in that context the enactment of a law will have a central role to play in making any policy in respect of HIV/AIDS effective. The Constitution of India considers equality and the equal protection of laws fundamental to living a life of dignity. Societal attitudes are discriminatory towards those affected by HIV/AIDS. Unequal treatment, stigmatisation and gross discrimination have to be dealt with through the law.
Those afflicted by the virus must be considered as persons entitled to enjoy all those rights considered fundamental in a civilized society and which the state has committed to protect under the Constitution. The state under Part III of the Constitution of India is prohibited from infringing the fundamental rights of citizens. A comprehensive legislation is required to ensure that the state does not discriminate against those afflicted by HIV/AIDS. It must also ensure that private individuals and entities are liable to be proceeded against if those affected with HIV/AIDS are treated contrary to acceptable norms.
What is required is not only a clear comprehension of social and ethical dimensions associated with HIV/AIDS but a creative approach through the law to ensure care and treatment of those affected by the virus. Legal remedies for HIV/AIDS related discrimination are required to be made more effective. A legal framework must be put in place to create a protective and supportive environment. The state must realise that a punitive framework for dealing with those affected with the epidemic should not be put in place. It is only through a protective and supportive environment that we can hope to reduce the transmission of HIV/AIDS and ensure care at optimum level for those affected by it. The state must ensure fair treatment of those afflicted by the virus. Society must not distance itself from those suffering from the affliction. The community must consider them as their own. Such an attitude alone will help slow the spread of the epidemic.
India has a National AIDS Prevention and Control Policy. Such a policy, however, does not have the status of a law. It is not binding and enforceable in court. Consequently, a legal regime guaranteeing a range of protections is required. In this context, issues like consent and confidentiality, which are mostly governed by the common law regime, are required to be dealt with under a statute. The common law principles of consent and confidentiality are the handiwork of individual judges who are confronted with the issues when deciding cases of those afflicted by HIV/AIDS.
The personal predilections of a judge might come in the way of justice and bring about an element of inconsistency that would be most inappropriate and counterproductive in the context of HIV/AIDS. In order to promote a strong and reliable legal system, we require a statute to lend consistency, equality and predictability. Courts in adjudicating cases will keep the statute in mind and give effect to the policy enunciated therein.
One should keep in mind that ‘every human being of adult years and sound mind has a right to determine what should be done with his body; and the surgeon who performs an operation without the patient’s consent commits an assault.’ The concept of autonomy is recognised within the meaning of the right to life and personal liberty under Article 21 of the Constitution of India. The expression ‘personal liberty’ is of the widest amplitude and covers a wide variety of rights. It includes within its fold the right to live with human dignity and all that accompanies it and any act that damages or interferes with the use of any limb or faculty of a person either permanently or temporarily would fall within the inhibition of Article 21.
Several international covenants and guidelines have incorporated the principles of autonomy and liberty of the individual for testing of HIV and for treatment. The issue whether a test for HIV infection can be undertaken without the consent of the patient is controversial and raises both legal and ethical issues. Mandatory screening policies, not based on informed consent, are detrimental to HIV prevention efforts. Those at high risk of infection are most likely to avoid contact with health authorities in the absence of an informed consent, thus driving the epidemic underground. HIV testing is unlike any other diagnostic or therapeutic test because of its social, financial and medical implications, in the event the patient tests HIV positive.
The importance of pre-test and post-test counselling in order to help persons undergoing the test to arrive at an independent and voluntary decision based on knowledge and understanding of the medical and social implications of a positive test cannot be over emphasised. This helps the patient to decide whether or not to accord consent. Post-test counselling also helps persons to be informed and affirmatively respond in order to look after their own health and prevent the spread of the infection. Consequently, legislation specific to HIV/AIDS requiring informed consent as a prerequisite for HIV testing after pretest and post-test counselling is required. Compulsory testing, except in certain specific situations, should be prohibited.
HIV/AIDS is a condition associated with extreme stigma and discrimination. Experiences of public health authorities have revealed that non-consensual disclosure of a person’s HIV positive status results in social stigmatisation, denial of work, and access to medical services. It is also likely to fail in controlling the disease. India recognises that confidentiality and protection of human rights is vital to effectively respond to the spread of the epidemic. This is incorporated in the National AIDS Prevention and Control Policy.
Confidentiality is rooted in the principle of privacy. Though the courts in India recognise the right to privacy, a common law doctrine, its statutory enactment is necessary in the context of HIV/AIDS. Disregard for privacy and to the principle of confidentiality in HIV/AIDS is counterproductive. Legislation in dealing with this issue must recognise the fine line between confidentiality and disclosure. An attempt should be made to safeguard the individual’s right to confidentiality without jeopardising the public interest of disclosure in exceptional and limited circumstances.
Stigma and discrimination are the biggest barriers in response to HIV/AIDS prevention and control. HIV-related stigma is linked to preexisting notions about the association of HIV infection with behaviour such as injected drug use, men having sex with men or commercial sex work which are already stigmatised. Fear, lack of understanding, myths and misconceptions add to the stigmatisation. Stigma translates into discrimination when HIV positive people are denied access to health care.
In certain situations, such stigmatised individuals are barred from entry to educational institutions and on occasion are terminated from employment. Even within the family, they come to be discriminated against. In certain situations, even the medical community keeps them at a distance and within the workplace once they are known to be HIV positive, they are ostracised. Any legislation, therefore, must address the issue of discrimination and within the framework of the concept of equality seek to protect the individual. Such protection must not only be available against state action but also qua private individuals and/or entities. Active and wilful discrimination in this context must be rendered punitive. In the absence of such intervention by the law, civil society will be unable to effectively deal with those afflicted by the disease.
Gender and HIV/AIDS legislation: Gender and cultural norms mould the way men and women infected with HIV/AIDS are perceived, receive care and treatment and have access to information, prevention methods and technologies. HIV positive women face greater stigmatisation and rejection than men. In a country where the health care system is overburdened, HIV positive women and girls are further discriminated against when they require treatment. A culture of silence surrounding sex means that women and girls will neither be given nor will be able to seek information on matters relating to sexual interaction. They will be unable to protect themselves from infection and will not have access to care and treatment or to prevention technologies for HIV or sexual transmitted infections for fear of stigmatisation.
Women’s subordinate status within the family and in society offers precious little protection from HIV infections. Absence of monogamy, fidelity, safe sex practices and condom use exposes women to the infection. Women have very little control over their partner’s behaviour and run the risk of being infected without their knowledge. Those women who are uneducated and economically dependent are most susceptible to the infection. A comprehensive, gender-sensitive legislation needs to address these and other social issues. This, of course, must go hand-in-hand with the need to empower women through advocacy and practical solutions so that they can insist on safe sexual practices.
Access to resources is a crucial issue for society and for those infected with the virus. HIV/AIDS related information, treatment and technology are central to combat HIV/AIDS. With the advent of a new legal regime by 2005, access to drugs and vaccines when they become available, should be considered to be an intrinsic part of an individual’s right to life. This right, however, cannot be effective because of several factors related to the socioeconomic situation existing in India where the population presently afflicted with the virus has low purchasing power and does not have the financial resources for access to the high cost antiretrovirals (ARVs) sold by pharmaceutical companies. In the absence of medical insurance schemes and paucity of policies and procedures for distribution of products any societal effort to combat HIV/AIDS is doomed to failure. The legislation must address this issue and a legal regime vesting individuals with the right to obtain drugs for treatment must be considered part of the right to life and liberty.
As AIDS research efforts increase in both number and intensity, it is crucial that society takes cognisance of the legal and ethical implications of such efforts. Here again, the legislation must address these issues comprehensively.
In order to create an environment in which such legislation is acceptable, Indian policy-makers must work closely not only with government but with NGOs and corporate entities. Consultations at the national and regional levels through workshops are necessary to create an appropriate environment in which suggestions from various stakeholders are taken into account at the initial stage of drafting of such legislation. This must be a societal effort in which all stakeholders must contribute. The success of this effort, however, depends on how honest we all are in recognising the issues involved and what is at stake.