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HUMAN RIGHTS AND HIV Need for a Separate law for People Living with HIV/AIDS

By Ruchira Chaturvedi, Siddharth Shukla and Ashok Pandey

HUMAN RIGHTS AND HIV Need for a separate law for people living with HIV/AIDS Ruchira Chaturvedi, Siddharth Shukla and Ashok Pandey, Students, Final Year, B.A. LL.B. (Hons), RDVV, Jabalpur, M.P. Date: 28.01.2012

Abstract HIV/AIDS, since its discovery, has been known as a fatal pandemic. By now, there are medicines that can slow down the effect yet no known cure to the same has been come up with. The syndrome prevails, in India and abroad alike, as an epidemic owing to lack of awareness among people making it a cause for the discrimination faced by persons infected. Against the same, there have been growing demands for urgent efforts to combat stigma and discrimination. With lack of remedial legal provisions and a separate law protecting the rights, specific and human, of the infected, they have been a continuous subject to physical and mental torture. This article offers a conceptual overview of the relationship between the stigma associated with HIV/AIDS and discrimination and human rights with a goal to demonstrate the urgent need for an effective programmatic response towards the same.

Human Rights and HIV: Need for a separate law for PLHAs

Introduction HIV1 has tormented humanity for the last four decades. No one exactly knows how this pandemic came into being2. India saw its first HIV case in 1986. When one hears of this disease, initial response is that of revulsion, and the stigma that has come to be attached to this disease has made it very difficult to fight against. There is no known cure, and the governments strategy has been to concentrate on prevention rather than the cure. People living with HIV/AIDS (PLHAs) face discrimination every day. In Government sector, victims have remedy but people who are denied their right to employment in Private sector (on sundry pretexts) are often found helpless due to lack of any strong legislation. There is a need to create mechanisms to provide critical legal assistance to PLHAs. They must be empowered so that they can combat the stigma and discrimination. There are many regions in India where earnest efforts are required to create awareness and debunk absurd myths and irrational fears. There are around 1.5 million people estimated to be living with HIV in India. Those who are under the shackles of this debilitating epidemic need to be protected from discrimination; their right to life, employment must be accorded to them.

HIV (Human Immunodeficiency Virus) is a virus that attacks and damages the immune system of a human body. A damaged immune system cannot resist germs properly. Hence, an HIV-infected person becomes vulnerable to various ills and opportunistic infections (those infections that would normally not happen, but do because the immune system is weakened and cannot fight them). AIDS (Acquired Immunodeficiency Syndrome) is the condition that results from HIV after it has done significant damage to the immune system. These conditions are irreversible and ultimately lead to a human beings death. 2 There are many theories which are tossed around in the scienticfic communitysome of them are The Hunter Theory, Polio Vaccine Theory,etc. Needless to say opinions differ regarding their plausibility.

There is a need for a separate law in India to protect the human rights of PLHAs: A law that shields them from stigma; provides them easy recourse to affordable treatment, and preserves their anonymity. The bill suggested by civil society has been in limbo since 2006. Recently, in November 2011, hundreds of men and women took on streets to protest against what is seen by them as a callous dithering by the government of India in bringing a strong legislation. 3 Activists have been demanding the immediate passage of a law while expressing disappointment over the "apathy" shown towards HIV-infected people. They have alleged that the government was not showing any urgency on the issue and appealed to it to pass the HIV/AIDS bill in Winter Session of the Parliament. Various studies have shown that PLHAs suffer from mental trauma resulting from constant brooding about their mortality.4 They suffer from anxiety syndrome, frequent mood swings and psychotic disorders.

SITUATION IN INDIA In many countries around the world HIV/AIDS is considered to be a disability and the person suffering from it is given protection from being ostracized, and also helped to secure a job as there is reservation for disabled persons. In India, people suffering from HIV/AIDS are not included under the Disability Act of 1995.5 Violations of rights of PLHAs have increasingly come to light. The HIV epidemic has thrown up myriads of legal issues to which the response of the judiciary has been mixed. The framework of public health legislation is considered inadequate for HIV-related issues. In the absence of any specific law or statute to address the issues raised by

Lawyers Collective, a prominent Non Governmental Organization, has drafted a possible HIV AIDS Bill 2007. It can be read at For the summary of the Bill read 4 There is strong evidence that there is higher prevalence of mental health problems amongst people living with HIV compared with the general population. For more details read f 5 HIV/AIDS and Law by Adv. Vijay Hiremath

HIV/AIDS, both appellants and the judiciary have had to make their complaints, decisions and rulings by extrapolation from a variety of law sources like constitutional law6, common law7, statutory law8, personal law9.

BASIC RIGHTS THAT MUST BE RECOGNISED for PLHAs 1. Right to Equality. No person shall be subject to discrimination in any form by the State or any other person. 2. Right to autonomy. Every person has the right to bodily and psychological integrity including the right not to be subject to medical treatment, interventions or research without her/his informed consent. 3. Right to Privacy. Every person has the right to privacy. 4. Right to Health. Every person has the right to enjoy the highest attainable standard of physical and mental health. 5. Right to Safe Working Environment. Every person has the right to a safe working environment 6. Right to Information. Every person has the right to information and education relating to health and the protection of health from the State.

SEPARATE LAW FOR HIV/AIDS IS LONG OVERDUE We need to understand that HIV/AIDS is not just a medical problem. It engenders many inconvenient questions about the way society treats the people with disabilities. In 1995, Dr Jonathan M Mann, former director of the World Health Organizations Global Program on AIDS argued for the centrality of human rights in addressing the HIV epidemic. Indias National AIDS Prevention and Control Policy (NAPCP) states in part that when human rights are protected, fewer people become infected and PLHAs and their families can better cope with HIV/AIDS. Government recognizes that without the protection of human rights of people, who are vulnerable and afflicted with HIV/AIDS, the response to HIV/AIDS epidemic will remain incomplete. It is the common experience of several persons with disabilities that they are unable to lead a full life due to societal barriers and discrimination faced by them in employment, access to public spaces, transportation etc. PLHAs are in a similar position. Due to the stigma attached to their medical condition, people living with HIV/AIDS often face

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Fundamental rights guaranteed under the constitution of india. Law precedents and apex court rulings 8 Written or codified laws of the country made by its legislature. 9 Laws governing parts of individuals religious code.

discrimination in healthcare and employment and are prevented from fully participating in society. SOME DESIRABLES IN THE SEPARATE HIV/AIDS ENACTMENT I. Informed consent10 for testing treatment and research Every human being has a right to autonomy and bodily integrity. HIV testing should be conducted only for the voluntary determination of HIV status or if it is medically indicated and in the interest of the person being tested. Informed consent is considered vital in the HIV context because HIV is different from other diseases. II. Disclosure of Information HIV-infected persons should not be compelled to disclose their status and persons to whom they may reveal it in confidence should be bound not to reveal the information. Partner notification is necessary and hence a proper procedure should be evolved to inform the partner. Partner notification may take place as follows: Step1: The healthcare provider would assess whether an HIV-positive persons partner is at significant risk of transmission of HIV. Step 2: She would then counsel the HIV-positive person to inform his or her partner. Step 3: The HIV-positive person refuses to do so or the healthcare provider is satisfied that he or she will not inform the partner. Step 4: The healthcare provider would then inform the HIV-positive person that she is going to inform the partner. Step 5: The healthcare provider would make the disclosure to the partner in person and with appropriate counseling or referrals for counseling. However there is clearly a duty on the infected person to prevent transmission and take all necessary steps in that regard.

III. Right to access treatment The right to access treatment related to HIV/AIDS is recognized under Indian constitution and the International Covenant on Economic, Social, and Cultural Rights to which India is a signatory. In order to fulfill its obligations under the Bill, governments,


Informed Consent :- Agreement by a patient to undergo an operation or medical treatment or take part in a clinical trial after being informed of and having understood the risks involved. (According to Microsoft Encarta Dictionary, 2009)

whether state or central, are also required to take measures including providing travel subsidies to access treatment, training and capacity building of healthcare providers, ensuring that all other laws are in consonance with the Bill and that the right to health is not in any manner restricted or compromised on account of the protection of intellectual property rights, introducing tax incentives and exemptions on HIV related treatment, regulating drug prices and encouraging research.

IV. Duties of State 1) The state must ensure the right of access to and equitable distribution of health facilities, goods and services including essential medicines and the preparation of a national public health strategy. 2) The state must protect and promote the rights of HIV-positive persons and those associated with HIV and ensure their involvement in all aspects of the implementation of the Bill. 3) It must create a national framework to address HIV/AIDS integrating HIV/AIDS policy and program responsibilities, across all branches of government. Ministries and departments, particularly, education, law and justice, science and research, employment and public service, welfare, social security and housing, health, treasury and finance and defense must integrate HIV and human rights in relevant plans and policies. 4) Government must chart a leading role for India in the global fight against HIV. It should initiate interaction with other countries so that our policies and programmes remain updated and cutting edge.

Iv. Penalties There must be provisions which punish: Hate Speech against PLHAs Misleading information about the epidemic or PLHAs, Publishing information leading to the disclosure of the name, status or identity of a person involved in a legal matter in violation of court orders.

Lucy DSouza vs. State of Goa11 was one of the first litigations on the issue of HIV/AIDS in India. It arose when HIV-positive activist Dominic D'Souza was incarcerated in the late 1980s. DSouza, 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. DSouza was subsequently arrested and confined in an unused TB sanatorium pursuant to the Goa, Daman and Diu Public Health Act, 1985, an amendment which in 1986 authorised the State to mandatorily test any person for HIV and isolate them if they tested HIV-positive. Wide powers were given to the government to take away the liberty of the individual on grounds that a person was suffering from AIDS. His mother, Lucy DSouza, filed a writ petition before the Goa bench of the Bombay high court arguing that the provision in question violated her sons fundamental rights under Articles 14 (Equality before the law), 19(1)(d) (Right to move freely within India) and 21 (Right to life and liberty) of the Indian Constitution. The petitioners raised four basic issues:1) 2) 3) 4) Provision for isolation is based on wrong scientific material and foundation; Object sought to be achieved by isolation is nullified by the provisions; Discretion to isolate is unguided and uncontrolled; and The provision of isolation is procedurally unjust in the absence of the right of hearing.

The court was of the opinion that though isolation was an invasion of the personal liberty of the person and it may also lead to ostracization, but a balance has to be drawn between the right of the individual and the weal of society at large. In a situation of a conflict between the two, latter will prevail over the former. Court also held that government was well within its powers to make provisions for controlling the spread of AIDS. It said the isolation may not have been ideal but was practical. In the abovementioned instance the court has admitted that isolation was breach of a persons right to liberty. Forced isolation by Goa authorities was legitimated by the court on practical consideration. In MX of Bombay Indian Inhabitant vs. /s. ZY12, the issues raised not only concerned right to employment of an HIV+ person but also the safety of other employees and the responsibility of the employer to provide medical treatment to its employees who are suffering from HIV/AIDS. The High Court held that an HIV affected person could not be denied employment or be discontinued unless it was medically shown that he was

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AIR 1990 BOM 355 AIR 1997 BOM 406.

suffering from such a disease that can be transmitted through daily chores. The state cannot be permitted to condemn HIV-affected people to economic death. Also, the test of medical fitness prior to employment or even during employment has to be necessarily co-related with the person's ability to perform the normal job requirements and any risk of health hazard he may pose to others at the workplace. In this instance petitioner was fit to do his job. And his medical condition did not pose a threat to the health of his co-workers. Hence in the absence of a specific HIV/AIDS law, he was wrongly expelled from his job as a labourer by his employer. Mr. X vs. Hospital Z13 brought the issue of privacy before courts. The Petitioner was tested positive for HIV by the Respondent hospital, which acted upon the discovery and informed Petitioners fiance about this condition because of which the marriage was called off and his community ostracized him. Thus, this petition was filed claiming that there was a breach of privacy and confidentiality by the hospital and the doctor. The SC observed that in this case right of health of Petitioners fiance was pitched against his right to privacy, and when two rights collide the one that promotes morality and public interest should be upheld. It is submitted that here Respondent hospital should have counseled the Petitioner first before informing the fiance.


AIR 2003 SC 664

Conclusion and Personal Reflections It is bad enough that people are dying of AIDS, but no one should die of ignorance. ~Elizabeth Taylor

According to the United Nations 2011 AIDS report, there has been a 50% decline in the number of new HIV infections in the last 10 years in India. 14 The numbers have declined, but India is still home to the worlds second largest population suffering from HIV/AIDS. There is still no cure in sight. The only way to combat the disease is to prevent it. Ignorance is the enemy of civilization. PLHAs should be regarded as people suffering with disability. A specific law that protects them from the ridicule and disdain of the people is a desideratum. What we have currently in India is judge-made laws which are not good enough. Conducive environment must be made so that they may be able to live with dignity without fear of being judged. Under the aegis of our Constitution, every human has some basic, fundamental, and inalienable rights. PLHAs must not be seen to have deviated from the normal. They are as much entitled to have these rights as those who are not suffering from the disease.


Source: Wikipedia



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Microsoft Student with Encarata Premium 2009 Health care Case Law in India A Reader edited by Adv. Mihir Desai. Adv. Kamayani Bali Mahabal. 10) 11)