The Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome, commonly referred to as HIV/AIDS, is amongst the most catastrophic epidemics the world has ever witnessed. The World Health Organisation estimates that nearly 35 million people have died from AIDS-related causes as of July 2016 and 36.7 million people worldwide were living with HIV/AIDS at the end of 2015.1 HIV attacks the body’s immune system, destroying cells that fight off infections.The human body can never get rid of HIV completely causing it to be a lifelong disease. If left untreated, HIV can lead to AIDS.This is the final stage of HIV when the immune system becomes severely damaged and vulnerable to opportunistic infections. Depending on the degree of severity, people who are diagnosed with AIDS survive about 1-3 years.2
In India, the first cases of HIV/AIDS were reported in the mid 80’s among commercial sex workers in Mumbai and Chennai and injecting drug users in the northeastern State of Manipur.3 The virus spread rapidly from such risk prone populations to the general populace. As of 2011, Manipur showed the highest estimated adult HIV prevalence (1.22%), followed byAndhra Pradesh (0.75%), Mizoram (0.74%), Nagaland (0.73%), Karnataka (0.52%), Goa (0.43%)and Maharashtra (0.42%).4 India is estimated to have 2.39 million people living with HIV/AIDS (hereinafter “PLWHA”), the third highest in the world.5
The root cause of HIV being primarily sexual, the disease is accompanied by societal stigmas and the false belief that the HIV virus is highly contagious. This results in discrimination of people infected with HIV leading to the denial of access to health care, education, employment, insurance and public facilities resulting in gross violations of civil and fundamental rights of the HIV affected population. A 2006 study reported that 65% of male PLWHA and more than 75% of female PLWHA faced discrimination at government facilities. About 25% were either refused medical treatment or were referred to another health facility, nearly 40% felt that they were
neglected and isolated, about 30% were abused and teased, and about 4.5% reported that they were denied admission at health facilities.6 Discrimination was extensive in the form of refusing to treat HIV+ patients, refusing to touch HIV+ patients, disclosing HIV+ status to other patients and medical staff, and charging additional fees.7 However, discriminating against HIV/AIDS affected populations (hereinafter “affected population”) seems to be futile as it has been observed that public health interest does not conflict with human rights and in fact when human rights of PLWHAare protected, their families can cope better and fewer people become infected.8 It is, therefore, imperative that the human rights of affected populations be safeguarded. A nation cannot promise its citizens years in their life, but it can promise them life in their years.
Law and policy are the bulwarks of human rights. The provisions in the Constitution of India protect the rights of HIV/AIDS affected people. Article 14 guarantees the right of equality of treatment to HIV/AIDS patients. Articles 15 and 16 prohibit discrimination in public facilities and public employment respectively. Article 21 protects the right to life, personal liberty and ensures the right to privacy. Chapter IV enshrining The Directive Principles of State Policy directs States to ensure that all citizens including HIV/AIDS patients have an adequate mean of livelihood, to make provisions for securing just and humane conditions of work, to improve public health vide Article 39, 42 and 47 respectively.9 However, these general provisions of the constitution were insufficient in dealing with the specific problems of the HIV/AIDS community. In an attempt to address the looming and unresolved social, economic and legal struggles faced by HIV affected people in India, the first HIV/AIDS Bill was drafted in 1989. However, it was subsequently withdrawn as it had several discriminatory provisions such as mandatory testing and confinement of infected persons.10 The need for a new HIV/AIDS Bill was recognised at the International Policy Makers Conference on HIV/AIDS, held in New Delhi in May2002. An Advisory Working Group (AWG), spearheaded by the National AIDS Control Organisation (hereinafter “NACO”), was set up. It comprised of members from civil society, PLWHA, and the government. The NGO Lawyers Collective’s HIV/AIDS Unit was approached to draft a new HIV legislation. After consultation with PLWHA, marginalized groups, healthcare workers, women and children’s groups, state governments, NGOs, and lawyers a rights centric draft Bill was submitted to NACO
in 2006.11 This draft was modified several times in accordance with recommendations of the Legislative Department, Solicitor General of India and NACO. 12
Finally, the Ministry of Health and Family Welfare, then headed by ShriGhulamNabi Azad, introduced the Human Immunodeficiency Virus And Acquired Immune Deficiency Syndrome (Prevention And Control) Bill, 2014(hereinafter “the Bill”) in the RajyaSabhaon 11th February 2014. The Bill is unique as it is the first disease-centric Bill in India13 and also gives effect to India’s international obligations as a signatory to the Declaration of Commitment on Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (2001) adopted by the United Nations General Assembly.14 The fundamental object of the Bill is to prevent and control the spread of HIV/AIDS and to protect the human rights of people affected by the virus.
Chapter II of the Bill (S.3,4) entitled ‘Prohibition of Certain Acts’ prohibits discrimination against protected persons15. It is the first time that the law addresses discrimination in the private sector; the Constitution only prevents discrimination by the ‘state’. Discrimination includes, denial, termination or unfair treatment in relation to employment or occupation, healthcare services, educational establishments, use and access to public facilities, the right to movement, purchase or reside in property, hold a public office, and provision of insurance16. HIV testing as a prerequisite to obtain employment, access healthcare or educational establishments is prohibited. Various courts have supported such provisions. An oft-cited case is that of MX v. ZY.17 MX was disqualified from employment in a public sector corporation ZY, subsequent to a mandatory HIV test wherein he was found to be HIV positive, but otherwise fit. In a landmark decision, the Bombay High Court found such mandatory testing and dismissal to be arbitrary, unjust and unlawful and violated Article 14,16 and 21 of the Constitution. It held that a person cannot be deprived of his livelihood merely because he is HIV positive, if he is otherwise fit to perform his job, is qualified and does not pose a risk to his co-workers. This has been upheld in subsequent decisions such as X
v. State Bank of India,18 in CSS v. State Of Gujarat19 by the Gujarat High Court, and in X v. The Chairman, State Level Police Recruitment Board & Ors20 by the Andhra Pradesh High Court.
Chapter II of the Bill also prohibits publishing or communicating feelings of hatred towards protected persons by words or signs. Thus, the Bill by including professional, medical, social, economic as well as moral spheres confers a wide and all encompassing safeguard of rights of protected persons.
Chapter III (S. 5-7) lay down a rights-based approach in that a person cannot be subjected to any HIV testing, treatment or research without his informed consent. Tests carried out pursuant to consent must include exante and expost counseling. This provision reflects the sensitivity of the issue by highlighting the need for voluntary consent and also ensures that the care and welfare of protected persons are foremost.In the famous case Lucy R. D’Souza v. State of Goa, 21 Dominic D’Souza had gone to donate blood and was found to be HIV positive. The Goa, Daman and Diu Public Health Act, 1985authorised the State of Goa to mandatorily test any person for HIV and isolate persons found to be HIV positive. Accordingly, Dominic was quarantined in a TB hospital. Dominic’s mother, Lucy D’Souza, challenged the measure on the ground that it violated his fundamental right guaranteed by the Constitution, specifically Articles 14 (right to equality),19(1)(d) (right to move freely throughout the country) and 21 (right to life). The Bombay High Court while recognising the harmful effects of isolation of PLWHAheld that in a case of conflict between individual liberty and public health, considerations of public health would prevail. However, after the passing of the judgment, the Government has not taken further actions under the impugned Act. Thus, the provisions of the 2014 Bill are in consonance of the Government’s subsequent actions.
Chapter IV (S. 8-10) addresses ‘Disclosure of HIV status’. It states that no person can be compelled to disclose his HIV status or that of a person in a fiduciary relation without written informed consent, unless in pursuance of a court order or between health care providers for the patient’s treatment. Health care providers are not permitted to disclose a person’s HIV status to his/her partner and may do so only in limited precautionary circumstances as laid down in the bill. These provisions by protecting the privacy rights of affected persons contribute to encouraging people to get themselves tested and treated without the fear of disclosure and consequent abandonment by their family or friends. Further, the duty of affected persons to take reasonable precautions to prevent transmissions does not extend to women who may be subjected to violence or abandonment. This highlights that protection of the affected person is of foremost importance.
The case of Mr. X v Hospital Z22 before the Supreme Court of India deals with confidentiality in relation to marriage. Mr. X had donated blood for his uncle’s
surgery at Hospital Z. However, the results of his blood test were not disclosed to him. The Hospital then disclosed X’s HIV positive status to his fiancée Ms. Y. Subsequently, X called off the marriage and was ostracized by his community due to his HIV positive status. The Supreme Court ruled that although doctor-patient confidentiality was an important requirement under the then Medical Council Act, the patient’s right to privacy is not absolute if he stood the chance of spreading it to his prospective spouse. The court went on to suspend the right of PLWHA to marry till they were cured. However, in an appeal, the court reversed its decision and restored the right of PLWHA to marry, but also stated that PLWHA has a duty to obtain informed consent from their prospective spouse prior to marriage.
Chapter V (S. 11,12) lays down ‘Obligations of Establishments’ that keep records of HIV related information. By providing for adoption of data protection measures, accountability, and liability of persons in the establishment, the Bill bolsters protection of privacy of affected persons. Thus, both the public as well as the private sector are involved in protecting the rights of protected persons.
Chapter VI (S. 13,14) seeks to control the spread of the virus by requiring the Central and State governments to undertake Anti– Retroviral Therapy (ART) and Opportunistic Infection Management which are the medicines and processes used to control HIV. In fact, in 2013 the India Department of AIDS Control initiated the lifelong ARTprogramme guidelines also known as the National Guidelines for Prevention of Parent to Child Transmission (PPTCT) 2013, based on WHO guidelines of 2013, for all pregnant and lactating women living with HIV (regardless of stage) to prevent transmission of HIV to their children.23 The Bill’s latest draft states that ART would be provided to all PLHIV as needed.
Chapter VII (S. 15-18) lays down ‘Welfare measures by the Central and State Government’ such as framing schemes for HIV infected women and children, protecting the property of such children, promoting age-appropriate, gender sensitive information, education and communication programmes to them as well as counseling, care, and support. Thus, the Bill provides for soft law supportive mechanisms as well.
Chapter VIII (S. 19-21) requires establishments engaged in healthcare to provide ‘Safe working environments’ to all those at risk of occupational exposure to HIV. By ensuring Universal Precautions and Post Exposure Prophylaxis the Bill aims to reduce discrimination in health care settings by addressing the fears of health care workers with respect to contamination while treating HIV patients.24 It also provides for a Complaints Officer in the establishment who shall, on a day-to-day basis, deal with complaints of violations of the provisions. However, the success of this provision would depend on effective executive and administrative oversight over such officers.
Chapter IX (S. 22) aims to reduce risk amongst the ‘Most at Risk’ populations such as sex workers, men-who-have-sex-with-men, transgender and injecting drug users. It
decriminalizes any strategy, mechanism, technique for reducing the risk of HIV transmission, or any act pursuant thereto, by persons, establishments or organizations in the manner specified in the Central Government’s guidelines. Such activities include (i) provision of information, education, and counseling services relating to prevention of HIV and safe practices; (ii) the provision and use of safer sex tools, including condoms, and safe intravenous drug use practices; and(iii) drug substitution, drug maintenance, needle and syringe exchange programmes. These provisions ensure that minimization of HIV exposure is of utmost importance and that law enforcement does not hamper outreach to ‘at risk’ populations who require it most.25
Chapter X (S. 23-28) provides for the ‘Appointment of an Ombudsman’ appointed by the State Government. Upon a complaint made by any person, the Ombudsman shall inquire into the violations of the provisions of this Act in relation to healthcare services. After hearing both parties, the Ombudsman may pass an order with the reasons therefor. Such a provision enables speedy and inexpensive legal recourse to HIV infected persons as compared to ordinary litigation. However, in order for such a mechanism to be effective, it is mandatory to spread awareness about recourse to it among the population as well as ensure strict and regular oversight over such Ombudsman by the State Governments.
Chapter XI (S. 29-33) lays down ‘Special Provisions’. Every protected person, who is a woman or person below the age of eighteen years, shall have the right to reside and not to be excluded from the shared household in a non-discriminatory manner. Several studies highlight the need for such gender sensitive provisions in light of the extensive discrimination faced by women in Indian patriarchal society.For example, it has been observed that more female PLWHA (5.5%) were asked to leave their homes after being tested HIV+, as compared to male PLWHA (only 1.9%). Women were found to be more supportive of their HIV+ husbands (12.4%) in comparison to men of their HIV+ wives (8.5%).26 Further, the Bill requires every person in the care or custody of the State shall have the right to HIV prevention, counseling , testing and treatment services. A person between the age of 12 to 18 years who is sufficiently mature to understand and manage the affairs of his HIV/AIDS affected family shall be competent to act as a guardian of another sibling below 18 years of age for matters relating to admission to educational establishments, operating bank accounts, managing property, care, and treatment, amongst others. Grievances can be addressed to systems such as the Child Welfare Committee (CWC) established under Juvenile Justice Act.
Chapter XII (S.34 -36) dealing with ‘Special Procedure in Courts’ serves as a bastion to the objective of confidentiality and privacy enshrined in the Bill. It provides that in any proceeding in which an HIV affected person is a party, the court may suppress the identity of the person, conduct in camera proceedings or restrain publication of content which would disclose his/her identity. Cases of HIV positive patients are to be dealt with on a priority basis. HIV status and corresponding expenses are to be taken into account while conferring maintenance orders and healthcare facilities must be available to an infected individual who is sentenced. This provision reinforces the primary importance of the health of the HIV affected individual.
Chapter XIII (S. 37-42) provides for penalties. The punishment for enticing hatred toward HIV persons is imprisonment for a minimum term of three months, which may extend to two years and with fine, up to one lakh rupees, or both. Failure to comply with orders of the Ombudsman results in a fine, which may extend to ten thousand rupees with an additional fine of up to five thousand rupees for every day during which such failure continues. Finally, the disclosure of information regarding the HIV status of a protected person is punishable with a fine which may extend to one lakh rupees unless pursuant to a court order. Such severe penalties serve as effective deterrents to violations of the provisions envisaged under the Bill.
(a) The Bill includes in its Statement of Objects ‘confidentiality and privacy’ of HIV persons so as to enable patients to avoid the difficulties posed by social stigmas.27 Maintaining confidentiality may serve the short-term purpose of encouraging people to come forth for testing and treatment without the fear of being ostracized by society. However, it fails to satisfy a long-term perspective of eradicating social stigmas altogether. For HIV affected people to be able to live as truly equal citizens in society, measures are required to be taken to eradicate misconceptions about HIV/AIDS altogether, such as (i) compulsorily including correct information about how HIV is and is not transmitted and precautionary measures against the disease in school text books (ii)direction of State resources toward public awareness campaigns disseminating correct information (iii) encouraging hospitals, clinics and public places to put up posters clarifying misconceptions. Implementation of such measures, however, lies in the hands of the state government and thus to ensure a permanent solution the cooperation and coordination of governments at both levels are indispensable. Therefore, a truly forward-looking Bill must include directives suggesting the above measures to draw the attention of state governments as well as provide a common path to align state measures with central policy in the interest of citizen’s welfare.
(b) The Parliamentary Standing Committee on Health and Family Welfare in its Report has recommended that there must be a specific time period laid down for (i) disposal of cases brought to the Complaints officer under section 21(ii) orders of the government appointed Ombudsman under section 26.The Health Ministry has in fact agreed to such an amendment.28 This would ensure timely follow up on complaints and efficient redress of grievances.Additionally, in cases of medical exigencies or life saving treatment much tighter deadlines should be provided for.
(c) Additionally, the Committee observes that since the appointment and functions of Ombudsman are up to the discretion of the state governments it could lead to wide disparity between states as to the interpretation of violations of provisions. Thus, model guidelines should be formulated on the basis of which Ombudsmen should operate.29 Such guidelines could include (i) a uniform and user-friendly form in which complaints are to be filed to encourage citizens to approach Ombudsmen (ii) uniform qualifications in all states for appointment of Ombudsman (iii) uniform jurisdiction and procedures for cases (iv)timely disposal of cases (v) proper maintenance of
records of cases(vi) compliance reports (vii) submission of reports by the Ombudsman of cases handled by him in the year and results of the same to the executive.Such guidelines would ensure uniformity and integrity in the interpretation of the Central Act as well equal protection of citizen’s rights all over the country.
(d) The Committee has also suggested that activities other than healthcare services (such as discrimination) be brought under the purview of the government appointed Ombudsman.30 This would ensure streamlining of all HIV related cases under one forum.
(e)Section3 (j) addresses the denial of, or unfair treatment in, the provision of insurance. The Health Ministry was in concurrence with the Committee’s suggestion that insurance includes both life and health insurance. However, the Committee suggested that PLHIV should be charged a normal or slightly higher rate of premium to provide insurance covers and not an exorbitant rate. Section 3(j) includes a clause that allows unfair treatment if it is based on is based on and supported by actuarial studies. Such provision is capable of being misused by insurance providers to the disadvantage of PLHIV. Therefore, (i) it should either be deleted or (ii) amended in accordance with expert opinions of independent actuaries taken before adopting the Bill itself so that a uniform and fair treatment is ensured to all PLHIV and there is no misuse of the provision at later stages.
(e)Section3 (j) addresses the denial of, or unfair treatment in, the provision of insurance. The Health Ministry was in concurrence with the Committee’s suggestion that insurance includes both life and health insurance. However, the Committee suggested that PLHIV should be charged a normal or slightly higher rate of premium to provide insurance covers and not an exorbitant rate. Section 3(j) includes a clause that allows unfair treatment if it is based on is based on and supported by actuarial studies. Such provision is capable of being misused by insurance providers to the disadvantage of PLHIV. Therefore, (i) it should either be deleted or (ii) amended in accordance with expert opinions of independent actuaries taken before adopting the Bill itself so that a uniform and fair treatment is ensured to all PLHIV and there is no misuse of the provision at later stages.
(f) Section 2(c) defines “child affected by HIV” as “a person below the age of eighteen years, who is HIV-positive or whose parents or guardian (with whom such child normally resides) is HIV-positive...”. The word ‘parents’ could be replaced with the singular ‘parent’for 2 reasons: (i) to protect children under the definition of “child affected by HIV”, even if only a single parent is HIV positive (ii) As the Committee points out, to be in consonance with the word “is” used subsequently in the clause.
(g) Stakeholders have suggested ‘free diagnostics’ to be included in Clause 14 which deals with HIV treatment. Since the Government already provides this service to PLHIV, Clause 14 and 49 (2) (a) should be expanded to include “free diagnostic facilities relating to HIV” and not just PLHIV.
(h) Clause (8) (1) prohibits compelling disclosure of HIV status “except by an order...” The Committee has rightly suggested that “of the court” be added after “order” to avoid ambiguity and misuse.
(i) The Bill itself provides for various guidelines to be implemented by the Health Ministry such as guidelines on (i) who will be the representative of the affected person – priority must be given to the affected person’s choice (ii) monitoring mechanism for testing and diagnostic centres –lay down methods for data protection, record keeping and other operations consistent with provisions of Chapter V and VIII of the Bill (iv)provisions relating to the complaint officer provided for in Chapter VIII such as method of filing complaint, method of hearing, time limit for disposal, appeal procedure(v)provisions for dissemination of HIV related Information, Education and soft law measures as provided in Chapter VII, Communication before marriage and disclosure as provided in Chapter IV.
The Government must formulate these guidelines at the earliest so that they may be considered simultaneously with the Bill to ensure effective enactment of the various provisions in the Bill. Without these guidelines the provisions would be rendered unworkable. Such guidelines are crucial to the implementation of the Bill and should ,therefore, be expeditiously made available on the Ministry’s website as well as laid before the Houses of Parliament.31
While the provisions of the Bill address almost all aspects relating to the rights of HIV affected people, certain factors still need to be considered. Criminalizing the behaviour and conduct of key populations32 such as men who have sex with men (MSM), transgender people, sex workers and people who inject drugs, drives the people who are most vulnerable to HIV underground and away from health and social services that could protect them as they fear criminal sanctions.It also lends legitimacy to discrimination, increases risk-taking behaviour due to denial of regular employment and increases violence as perpetrators are aware that stigmatised populations will hesitate to access justice systems for fear of being prosecuted, and is ineffective in furthering HIV policy as the stigmatised populations hesitate to interact with policymakers to design workable HIV programmes.33 Therefore, marginalizing or criminalizing the conduct of vulnerable groups not only harms the health and human rights of these individuals but also weakens the wider societal AIDS response.
The 2014 Bill in Chapter IX decriminalizes support given to these risk-prone populations to reduce HIV, but it does not decriminalize the behaviour of these populations. While transgender and inter-sex people are recognised as legal in India,34 men who have sex with men,35 sex workers,36 and personal drug use37 continue to be
criminalised in India. This discourages them from coming forth freely and openly to seek healthcare and support for fear of being charged for their behaviour. An aggressive attitude towards combating AIDS and protecting both the risk-prone and general populace requires that such behaviour must be decriminalized because their vulnerability is everybody’s vulnerability.Indeed, “If lawmakers do not amend these laws so that all resources are marshaled against the same enemy - HIV, not people living with HIV - the virus will be the victor”.38
The success of decriminalizing and regulating such conduct has been witnessed in the international sphere. For instance, legislative steps to decriminalize sex work in New Zealand and personal drug use in Portugal have not only won parliamentarians votes but have also had a significantly positive effect on combating HIV/AIDS and protecting rights of PLWHA.39
New Zealand decriminalised sex work in the Prostitution Reform Act (PRA), 2003. The Act promotes human rights, welfare and occupational health and safety of sex workers. It requires operators to be licensed and adopt safer sex practices reducing sex workers’ vulnerability to HIV. Formalising the practice by way of licensed operators prevents hurried negotiations that leave little or no time for insistence on protected sex. Transferring it from an underground activity to a regulated one allows for health and safety policies, including regulations on condom use and access to specialized health services,40 protecting both sex workers and their clients. The Report of the Prostitution Law Review Committee found that “On the whole, the PRA has been effective in achieving its purpose”, and that the vast majority of people involved in the sex industry are better off under the PRA than they were previously”. It also found no evidence that the numbers of people engaged in sex work had risen since the law was introduced.41
Portugal has decriminalised personal drug use in the Drug Decriminalisation Law 30/2000 and shifted it to the administrative sphere. Instead of facing prison sentences or criminal sanctions, perpetrators are only fined and are offered help to end their habit. Effective treatment for injecting drug users and access to prevention programs , such as the provision of clean syringes, will improve their health and reduce their chances of passing on their infection. Mr. Canas, speaking as Secretary ofState for the Presidency of the Council of Ministers in 2001 stated that this law “...will draw addicts from the streets […] offering them support and opportunities for treatment. [...It] does not facilitate the increase in trafficking [...or] consumption!”42. The law has
been largely successful.43 HIV among drug users has significantly reduced. 44 The number of people in drug related treatment more than doubled between 1999 and 2003.3Problematic drug use halved45 and the impact of illegal drugs in the life of families was lower than before decriminalization.46
Decriminalisation of activities of highly risk prone populations would, therefore, go a long way in combating HIV in India. Indian Parliamentarian J.D. Seelam, sums it up well - “Some people do not want to engage with issues of key populations for moral or religious reasons. But key populations have rights too. And ignoring those rights helps nobody. When people living with HIV have access to testing and know their status they are more likely to take precautions to avoid passing on their infection...Everyone wins.”
The 2014 Bill’s greatest strength is that it is based on a draft that has been authored after incorporating suggestions and participation from the Government, NGOs, healthcare workers, marginalized groups, and PLWHA thereby reflecting the needs and interests of all stakeholders. Therefore, it stands as a resounding embodiment of a powerful democratic process. Moreover, the Bill’s provisions, especially those relating to confidentiality and disclosure, and access to prevention, treatment, care and support well encapsulate international guidelines on HIV/AIDS, for instance under the UNAIDS and UN Human Rights Commission InternationalGuidelines on HIV/AIDS and Human Rights48. Therefore, the passing of the Bill by Parliament would not only effectively combat the common enemy HIV/AIDS, and provide the much-needed protection of rights of PLWHA, but would provide India the opportunity of assuring its citizen’s faith in the democratic process existing in our country today.