[1] See Annex D.

[2] The standardised three-month period between time of infection and time of possible detection of HIV in the blood.

[3] Quote from the group discussion on ‘consent and testing’.

[4] Confederation of Indian Industry.

[5] International Convention on the Rights of the Child, 1989.

[6] World Trade Organisation, Geneva.

[7] Office of the [UN] High Commissioner for Human Rights, Geneva.

[8] Trade Related Aspects of Intellectual Property Rights (WTO TRIPS Agreement).

[9] Indian Penal Code.

[10] Narcotic and Psychotropic Substance Act.

[11] Source: Human Development Report Office; Mann and Tarantola 1996; UNHCHR and UNAIDS 1998.

[12] NACO, 2001.

[13] UN Development Fund for Women.

[14] Indian Network for People Living with HIV/AIDS.

[15] Anand Bihari vs. Rajasthan S.R.T.C., (1991) 1SCC731.

[1] Aanand Grover is a practicing lawyer and the Project Director of the Lawyers Collective HIV/AIDS Unit at Mumbai, India. He can be contacted at aidslaw@vsnl.com.

[2] AIR 1997 Bom 406.

[3] (1998) 8 SCC 296

[4] See footnote 2

[5] Jacques Charl Hoffmann v/s South African Airways Case CCT 17/00

[6] MNP+ v/s Union of India & ors. W.P. No. 346 of 2000

[7] Subodh Sarma v/s State of Assam & ors. Civil Rule No. 3984 of 1996

[8] See footnote 3

[9] Monthly Index of Medical Specialities, May, 2000

[10] See footnote 9

[11] Cruz Bermudez, et al v/s Ministerio de Sanidad y Asistencia Social (MSAS) Case No. 15789, July 17, 1999

Annex B                               Vulnerability, AIDS andHumanRights

[1] Regional Program Coordinator, UNDP HIV & Development Programme.

Annexe C                             Background Material

for the Group Discussions

(­­­­­­­­­­­­­­­­­­­­Group I – Day 1)

Background

Any discussion in support of Human Rights is based on the fundamental notion that every individual has certain inalienable rights, which, if protected, permit that individual and society at large to flourish.

One such right is that of self-autonomy – where every adult of sound mind has the right to determine what can be done to his/her body. This deals with the very essence of having the right to lead a life and take decisions for oneself in one’s best interests without coercion or force.

 In the HIV/AIDS context this issue manifests itself in the form of informed consent, in two critical scenarios, one of currently greater occurrence than the other.

Consent and Testing

The first is a situation where a person is tested for his/her positive status. It is a widely held belief that before a health care worker/testing facility tests a person for HIV the person must be fully informed of various issues related to the test and result prior to taking his/her consent for testing. This is a concept that is applicable in medical practice generally but assumes even greater significance in the HIV/AIDS scenario where far greater stigma and persecution exists. The consequences of finding oneself to be positive can be dire – great personal trauma and emotional distress and an inability to share it with others due to stigma. Therefore, it is felt that before a person is tested his/her voluntary, full and informed consent be taken which would include s/he being counselled both before and after testing.

Not only is it the right of every person to agree to the intervention that s/he is being subjected to, but it has also been felt that voluntary testing based on informed consent is a beneficial public health strategy. However, public health management held the classical view that the only way to control the spread of contagious diseases was to mandatorily test all persons. Although this view was initially adopted in India (the Goa Public Health Amendment Act, 1986) government policy now clearly favours a policy of voluntary testing. The argument for voluntary testing is based on the premise that (apart from the human rights aspect) people will only come forward, act responsibly and test themselves if a conducive atmosphere is created whereby they are fully informed and consent to the procedures being carried out on them is taken. If, instead, an approach of mandatory testing is imposed, apart from the financial ramifications it would entail (3 ELISA/ Rapid/ Spot tests are required to confirm the positive status of a person) and the difficulties it would pose in being implemented, such an approach would only further stigmatise an already marginalized population and discourage honesty and personal responsibility thereby driving the pandemic further underground. This has been the experience in most parts of the world where mandatory testing has been enforced. It has been seen that such a policy has done damage to efforts in trying to curtail the spread of HIV/AIDS.             

In India, where mandatory testing of all is impracticality, any policy on such lines would be likely to confine itself to only certain populations – populations that are misconceived to be vectors of transmission and are already marginalized. Besides violating their human rights, such a selective policy would then only further marginalize such populations. This would have serious public health repercussions. 

The right to self-autonomy, as already stated, forms the basis of consent. However, this right is further compromised for many persons, especially women for whom consent becomes an even more remote ideal. Women’s access to health services is compromised by numerous structural factors including mobility, prevalent decision-making processes, health priorities of the family etc. Further many women find themselves undergoing medical procedures after having given consent that is far from free, full and informed. Such consent is often given on the basis of pressure, coercion or force, overt or covert, exerted by a dominant male. This applies in a general sense and also manifests itself in the HIV/AIDS context. It is necessary then, to address the issue of self-autonomy of women in this larger context while specifically looking at consent for conducting HIV/AIDS tests.           

Consent is an issue that has many ramifications in law. These include the use of undue influence in a fiduciary relationship (e.g. healthcare worker – patient) to obtain consent, forced testing, exceptions to consent in emergency situations and the extent of disclosure of information required to obtain proper consent.

Another dimension regarding the issue of consent is one concerning the testing of children. The complications in this regard are with respect to obtaining consent of a child in the absence of a parent or legal guardian. It is the experience of several health care institutions that adolescents often arrive either unaccompanied or along with a representative of an NGO which they get shelter from, to seek testing. The law permits proxy consent from parents or legal guardians but the legality of testing a child who voluntarily seeks testing is an area, which needs to be addressed. Further issues arise in relation to children. For instance, in the adoption scenario, whether an adoption home can insist on the testing of a child before giving him/her shelter is an area where laws relating to discrimination will be tested. If such an insistence were permissible, the further question would be as to who could give consent on behalf of a destitute child. Related to these issues is whether an adoption agency may make HIV testing a pre-condition for prospective adoptive parents.

The NACO policy encourages voluntary testing and mandates pre- and post-test counselling. However, the reality differs, both because of infra-structural reasons and because of a low priority being given to counselling and consent. It has been a wide experience that many individuals including pregnant women, prospective and current employees, and children, are often tested for HIV (in a routine manner) without even being informed of the same.

Consent in the employment scenario is another serious issue. Although NACO policy states that mandatory pre-employment and post-employment testing should be discouraged, there is no law to cover private employers who often pursue such a policy. Such testing is done without the knowledge of the prospective or current employee and without his/her consent.

Counselling is a vital aspect in the process of testing. It can be a successful method to encourage responsible behaviour change, empower patients and act as a support mechanism. However, counselling protocols are mostly absent and if present, rarely followed. Health care institutions do not have the resources or inclination to have a counselling department and students of medicine are not taught counselling as part of their curriculum.               

A view is held that pre-test counselling, instead of being beneficial to patients, often causes more harm because it creates fear and discourages a person from testing. It is felt that the same should then be avoided, especially for Voluntary Testing Centres (VTC) where it is of the patient’s own volition that the test is being conducted. However, accessing a VTC does not necessarily imply that a person is fully informed of the ramifications of an HIV test. For his full informed consent to be given it is necessary that a person is given pre-test counselling.

An issue that requires mentioning is the current policy of testing blood within the Indian blood banking system. Currently the duty of the blood bank is only to check whether blood is safe, based on 1 ELISA/ Rapid/ Spot test without the responsibility of informing the donor of the result. Whether this policy should be pursued or a blood bank should inform the donor is an issue that needs consideration. It is to be noted that informing a donor would require 3 tests for confirmation and pre- and post-test counselling

Consent & HIV/AIDS Research

The second situation in which the issue of consent arises in the HIV/AIDS scenario is for purposes of research. There are mainly two types of research – biomedical and behavioural. In both, consent plays a vital role. For a researcher to seek a person’s participation in research it is important that the prospective participant be fully informed of various factors such as the risks and benefits that the research may expose the participant to, the absence of any monetary or material inducement, the purposes of the research, the organisations funding and conducting the research, the duties and responsibilities of the researcher, the manner of keeping records and the guarantee of confidentiality. Vaccine Development Programs also require the researcher to lay down his/her responsibilities to a participant who becomes positive during the course of research. An obligation on the researcher to provide anti retroviral treatment to a participant, who, if not for the research, may not have known his/her status, may have to be articulated. To what extent is such provision should be made and whether this would amount to undue inducement are issues, which will have to be dealt with.

 Confidentiality[2]

(Group II - day 1)

Background

The concept of confidentiality is rooted in the fundamental human right of privacy - every person has the right to a sphere of activity and personal information that is exclusive to him/herself and that s/he has the right to disclose as s/he pleases. This is a right that has been guaranteed by both international human rights documents and under the Indian Constitution.

Confidentiality is an extension of this right of privacy and plays an important role in the HIV/AIDS scenario where stigma and discrimination are rampant. As discussed later, this is not only an issue of the individual interest but also one that actually serves the general public interest. In the context of confidentiality the main issue that requires to be addressed is whether a positive person has the right to confidentiality about his/her HIV status. It is important to note that confidentiality is fundamental in any public health strategy and especially important in a physician-patient relationship where trust is a foundation. After all, if such a relationship cannot guarantee confidentiality it will only lead to fewer and fewer people accessing health services.

Approaches to the Issues Around Confidentiality

The debate over this issue has taken the form wherein two apparently polarised views have emerged – the rights of the individual versus the rights of the community. It is argued that by protecting the right of confidentiality of an individual the larger community is not made aware of the prevalence of the pandemic and is therefore at greater risk of getting infected. This should be remedied by full disclosure of the positive status of all persons.

The counter-argument states that the debate on the individual versus the community is a false debate and in reality protecting the rights of the individual strengthens the community itself. This argument posits that if confidentiality is maintained it engenders trust and faith in the public health system and assures people that they will not be exposed to stigma and discrimination. This in turn encourages greater numbers to test themselves and access counselling and allied services thus having a positive impact on behaviour change and awareness. On the other hand if disclosure is made it will only discourage persons from accessing health care and testing themselves thus suppressing the pandemic and creating greater hurdles for control efforts.

It is therefore contended that maintaining confidentiality does not contribute to the spread of HIV/AIDS. Indeed, if employed in the appropriate context and in creative and culturally sensitive ways, confidentiality can help to decrease the spread of HIV/AIDS. For instance, in the Indian context, the principle of confidentiality may require to be adapted where voluntary testing centres function under tremendous space constraints and do not have the luxury of separate counselling areas/rooms. Systems need to be evolved to ensure that confidentiality is respected even in circumstances where a counsellor/healthcare worker is forced to discuss a patient’s status in the presence of others, as is often the case.

Also, it is sometimes seen that a woman’s test result is not collected by her, but by a male member of the family. Sometimes a patient is too ill to go to collect the test result him/herself and a friend or relative does so instead. In these circumstances the question whether the healthcare worker should give the results to the relative or whether s/he should insist on the patient collecting the results. Either choice raises different issues. For example, the situation at the patient’s home may not be amenable to maintaining confidentiality. If the policy is that the relative may be given the result, a method of monitoring whether she/he has the informed consent of the patient to collect the result will have to be evolved.

Whether it is appropriate for the counsellor to make home visits despite the likelihood that family members may become aware of the patient’s condition is a question that will have to be addressed in a culturally sensitive manner. This dilemma is compounded in cases where AZT is being provided to regnant women and follow up treatment is necessary, but where the person does not return for treatment. 

Breach of Confidentiality

Breach of confidentiality manifests itself in many ways. Due to the stigma and fear surrounding HIV/AIDS, it is the experience of many positive persons that once their status is disclosed they are denied many services especially in the healthcare and employment setting. Often test results are shared, without the HIV positive patient’s consent, with other healthcare personnel, family members, relatives, neighbours, friends, colleagues and employers. Instead, maintaining confidentiality is seen to benefit and integrate positive people into mainstream society

In the healthcare setting, it is seen that government hospitals have a practice of writing HIV in block letters on patient case papers. These papers go from department to department for tests etc. Also, it is common that these case papers are attached to the patient’s bed. These practices are ostensibly to warn healthcare workers to be more wary of occupational exposure when providing services to PLWHA, but often result in discriminatory practices. Strategies need to be evolved so that the health services may be provided to PLWHA without compromising on either the right of health care workers to a safe working environment or the duty of confidentiality. Such strategies, it is suggested, would include mechanisms of ensuring availability of universal precautions to health care workers and clear and enforceable rules regarding confidentiality.

Often hospitals assign separate wards to HIV/AIDS patients. This exposes positive persons to breach of confidentiality and discriminatory practices.

In the employment setting confidentiality is breached at various stages. During recruitment employers often insist on knowing the status of the prospective employee and doctors, working for the employer, divulge the same. This occurs even at stages of routine medical examinations during employment. The question that arises in such circumstances is whether a doctor is obliged to inform the employer and how this is balanced with the duty of confidentiality towards the patient. Some employers argue that the employee’s immediate superior should be informed of her/his HIV status, to facilitate informed action in emergency situations. It has also been argued that the duty to maintain confidentiality would vary in circumstances where the employee remains regularly absent from work. Policy and rules with respect to these issues need to be clearly identified.

Breach of confidentiality is also seen in other situations such as at the time of an insurance claim. The question that arises often in this context is whether a healthcare worker is under an obligation to disclose the HIV status of a person to an insurance company enquiring into the cause of death or whether an alternative answer would suffice.

The issue of confidentiality also arises in adoption cases. Adoption homes ask for the status of the child and often do not take in HIV positive orphans. They also insist on the status of prospective parents and refuse adoption if the parents are found to be positive

Exceptions to Confidentiality

The case for maintaining confidentiality limits non-disclosure. Although confidentiality is maintained between the healthcare worker and patient it is the duty of the positive person to notify his/her spouse/sexual partner/needle-sharing partner of his/her positive status. This is where counselling plays a vital role. However the argument in favour of disclosure sometimes goes to the extent of contending that the duty to notify the partner is not just the positive person’s obligation but also extends to the healthcare worker.

It is important to note that the law does recognise exceptions to the rule of confidentiality. Such exceptions arise in a situation when the public interest to disclose outweighs the public interest to maintain confidentiality. It has also been held that disclosure is permissible (to another doctor) if it is for the treatment/interest of the patient. Confidentiality can also be breached when a person is compelled by law to breach it. Although there is no clear policy, some courts have held that where a special relationship exists and there is a foreseeable danger to an identifiable third party, confidentiality can be breached by a healthcare worker. This reasoning could be applicable in a situation where, despite extensive counselling, a person continues to indulge in high-risk behaviour and refuses to practice safe sex with his/her sexual partner.

Beneficial Disclosure

Closely linked to the principle of confidentiality is the notion of beneficial disclosure. This implies disclosure that is made for the benefit of the affected individuals including the PLWHA, his/her sexual and drug-injecting partners and family. Beneficial disclosure is voluntary, respects the autonomy and dignity of the affected individuals and maintains confidentiality as appropriate. Apart from beneficial results for the people affected, it is intended to lead to greater openness about HIV/AIDS in the community and meets the ethical imperatives of the situation where there is need to prevent onward transmission of HIV. Such beneficial disclosure maintains individuals’ human rights, prevents discrimination, and improves public health in the form of prevention and care efforts.

Promoting beneficial disclosure with its elements of voluntariness and confidentiality serves a direct public health function, because it encourages people to access HIV prevention and care services. Beneficial disclosure also serves the purpose of opening up the HIV/AIDS pandemic. As more people feel able and willing to disclose their status, there grows a critical mass of individuals and families within a community, and indeed within a nation, who are openly involved in dealing with the pandemic in positive and supportive ways. The challenge is to create an environment in which people will come forward for testing, counselling, prevention and care.

(Group III – Day 1)

Background

Discrimination lies at the root of all legal and human rights issues in the HIV/AIDS context. It is because of the fear, ignorance and stigma associated with HIV/AIDS that PLWHA are treated prejudicially and unequally.

However the reality is quite different and discrimination is rampant vis-à-vis PLWHA in the healthcare setting. This is further accentuated for certain marginalized populations. For instance women, commercial sex workers, drug users and prisoners find themselves discriminated in healthcare irrespective of their HIV status. Their positive status, however, further marginalizes them and decreases access to health services even more. Those who do not fall within these populations but are HIV+ also suffer immense discrimination in healthcare. Not only would increased access to healthcare benefit PLWHA, it would have a positive public health impact on society at large in preventing the spread of the pandemic.

The Right to Healthcare

The right to be treated equally and the right to health are fundamental rights guaranteed under the Indian Constitution and basic human rights found in all international human rights documents. In the Indian constitutional context it is the State’s obligation to provide healthcare for all. However, the right of equality and healthcare is available only against the State and not against private bodies. Therefore, it is the widely felt experience of many PLWHA that they are discriminated against and refused treatment by private healthcare institutions due to their positive status. Even state-run healthcare institutions discriminate against PLWHA in many ways. These include an outright refusal to treat, physical isolation in wards, early and inappropriate discharges, delays in treatment, treatment on condition of higher charges being levied and prejudicial comments and behaviour.

It has been held by the Indian Supreme Court, however, that both public and private healthcare institutions have a duty to treat all those in emergency situations although the latter is not obliged to treat persons in other circumstances. Yet, both public and private healthcare institutions continue to discriminate based on HIV/AIDS status.

Anti-discrimination Legislation

In certain jurisdictions medical standards prescribe that a healthcare worker must treat every patient as HIV positive and carry out medical procedures and take precautions based on this assumption. These jurisdictions also prescribe anti-discrimination legislation that makes treatment of PLWHA obligatory even on private healthcare.

In India however, there is an absence of anti-discrimination legislation. Therefore, private healthcare is free to refuse treatment to PLWHA, as it almost always does.

Manifestations of Discriminatory Practices

As mentioned above, many PLWHA are denied their basic fundamental right to health due to the discriminatory practices carried on by healthcare institutions. Discrimination manifests itself in many ways in a healthcare setting. For instance, PLWHA have their case papers often hung on their beds with bold and conspicuous notations on them indicating their positive status. This is done in order to ‘warn’ others and leads to prejudicial comments and mistreatment by healthcare staff.

Bodies of people deceased due to HIV/AIDS-related causes are treated in a horrific manner. Often healthcare staff refuses to handle such bodies. If they do, then the bodies are often dumped in plastic bags with ‘HIV’ written across the bags, which is unnecessary. Even after this the unclaimed bodies are not disposed off with dignity but are left to decay. Sometimes relatives are charged extortionate amounts for handling of such bodies.

Public hospitals too deny treatment to PLWHA. They often try to avoid surgical procedures on some pretext. This includes suggesting a non-invasive but inappropriate course of treatment. This method of treatment, and sometimes outright refusal, is often meted out to PLWHA from certain marginalized communities such as injecting drug users and commercial sex workers on the basis of their appearance. The only statistical study done on patient-to-healthcare worker transmission by the Centre for Disease Control, United States Government indicates that the chances of such transmission are remote and the paramedical staffs is more at risk than the physician or surgeon. (CDC data shows that of the 52 cases 48 were of paramedical staff.) There are no similar studies in the Indian context and it may be pointed out that the results may be different considering the difference in the manner and context in which the health care sector functions.

Hospitals have been seen to refuse treatment to PLWHA stating that PLWHA can be treated from home and that admission in the institution is unnecessary. PLWHA are also discharged early by hospitals, prior to completion of treatment, on the pretext that the PLWHA health is improving and does not require supervision. Healthcare institutions sometimes grant a bed to the PLWHA but discharge him/her in a few days without having analysed his/her condition or prescribed any treatment.

It was reported that doctors, well informed about the manner in which HIV may be transmitted, refuse to touch HIV+ patients, thereby increasing the stigma among less trained personnel and attending family members. Healthcare workers sometimes disclose the status of PLWHA to colleagues although the same is not necessary. This sharing of information leads to discrimination by the entire healthcare staff due to the stigma surrounding the infection and already marginalized populations; separate wards, which can be in most shabby conditions, are maintained for PLWHA and also labelled as such.

Sometimes PLWHA are treated by healthcare institutions and in the middle of treatment are asked to do an HIV test. Once the test results are seen as positive the PLWHA is removed from the institution in the middle of treatment.

Pregnant women in private nursing homes are tested for HIV by a single, non-confirmatory ELISA test. If found positive, they are on this basis refused treatment at the nursing home, and are directed for delivery to public hospitals.

User charges are being imposed by public hospitals even though treatment in such institutions is meant to be free. Accessibility to treatment, therefore, is further reduced. Inaccessibility or denial of treatment causes PLWHA to access quacks instead, and to rely on spurious medications. The long-term consequence of this will be their worsened health condition and the increase of society’s overall vulnerability to HIV infection.

Concerns of Healthcare Workers

It is important to consider another right in the context of HIV/AIDS and discrimination and this is the right to a safe working environment. Due to the fear and ignorance around HIV/AIDS, many healthcare workers are afraid to treat PLWHA. Such fear can be mitigated if healthcare workers are provided a safe working environment. This in turn may reduce the discrimination suffered by PLWHA.

It has been argued, even by public healthcare institutions, that providing basic universal precautions to healthcare workers is not a matter of priority. As such, it has been seen that these universal precautions, (including gloves and sheet, and in the HIV context, post-exposure prophylaxis (PEP[4])), which ought to be considered an essential part of the functioning of healthcare institutions, whether dealing with HIV or any other condition, are not provided to healthcare workers. In these circumstances, it is contended that they are free to deny treatment to PLWHA.

It is important to note that NACO has assured the reimbursement of expenses incurred on PEP to public healthcare institutions. At the same time although precautions such as gloves and sheets are basic and to a large extent inexpensive requirements, they are not provided to public hospitals. There is no proper government policy on universal precautions and this is not treated as a priority issue.

The healthcare workers argue that the institution owes them a standard of care, which necessitates provision of universal precautions. In the absence of these precautions would a healthcare worker be justified in refusing treatment, especially with public hospitals and their emergency wards being burdened as they are?

Even though NACO policy envisages provision of PEP, in reality, the same is not available for needle-stick injuries suffered by healthcare workers. Where available, red tapism prevents reimbursement of costs as assured.

Certain other issues that require discussion arise in the healthcare context. For instance, whether the healthcare worker have a right to refuse treatment to a person who shows symptoms of HIV/AIDS but is unwilling to be tested. This is of special significance especially in the public healthcare setting where the duty of the state to provide health care is of paramount importance.

What are the rights of the healthcare worker in the event of being infected in the course of employment? In such an event the institution is bound to take care of the worker’s medical needs, especially in light of the fact that the healthcare workers have a right to a safe working environment including universal precautions.

It is the experience of many persons that because of their positive status, healthcare institutions charge them large amounts of money, which are otherwise not charged to those with other illnesses. This is often done on the pretext that the healthcare worker needs to spend an extra amount for protective gear. Thus the burden of providing universal precautions falls on the PLWHA, making access to care even more remote.

 Discrimination in Employment[5]

(Group IV – Day 1)

Background

Article 14 of the Indian Constitution mandates that the state shall not deny to any person, equality before the law or the equal protection of laws in India. This means that the state[6] cannot discriminate between one person or groups of people and other persons, except on constitutionally valid grounds. Constitutionally valid grounds include principles of affirmative action and the doctrines of non-arbitrariness and classification. This means that the state may differentiate between people on the existence of intelligible differentia i.e. an objective criteria, and where such criteria has/have a rational relationship with the object of making the differentiation. This is based on the principle that equals should not be treated unequally and unequals should not be treated equally. The restriction also implies that all state action should be reasonable, fair and just, in substance and in procedure.

Discrimination implies any action that is in opposition to the principles mentioned above. In basic terms it means treating a person or a group of people differently form others without any rational and permissible reason. An example that has been observed to be common in the HIV/AIDS context is the termination of the employment of a person on the basis that she/he is HIV positive. Discrimination in terms of denial of rights accruing due to employment and non-employment of HIV positive persons are other major examples of discrimination in the context of HIV/AIDS.

Estimates in India have found that approximately 3.5 million people are HIV positive of which a major portion is between the ages of 15 and 40. This represents a population which is either employed or of employable age. The implications of this on the economy and the well-being of the nation and its people cannot be ignored, either by the government or the private sector, which is fast creating the most significant employment base in India.

Within employment the most significant impact of HIV/AIDS has been seen in a number of cases where people living with HIV/AIDS (PLWHA) have been denied jobs or been terminated from employment because of their positive status. Apart from discrimination by the employer one must also recognise discrimination and isolation by co-workers. Employers have in fact, considered pressure by co-workers as one of the bases for discrimination. There is a need to provide information to employees in this regard and to take positive steps to prevent such discrimination at the workplace.

Public sector undertakings have been directed by the courts not to discriminate in employment on the ground of HIV/AIDS. (If the employee is otherwise qualified and fit to perform his functions and if s/he does not pose a significant risk to his/her colleagues – as held in the Mumbai High Court judgement of MX v ZY). The private sector, however, does not fall within the rigours of the constitutional guarantee of equality. Yet, industrial and labour laws could give relief to a PLWHA. In the constitutional context, however, private sector companies are free to discriminate against PLWHA and in the absence of anti-discriminatory legislation this situation will persist. However a few private sector corporations have taken certain positive anti-discriminatory initiatives. But these are few and far between. A far more comprehensive policy on HIV/AIDS in the workplace requires to be evolved if the negative impact of this pandemic is to be curbed.

It is important also, to consider the plight of unorganised labour such as migrant workers and those who are not part of unions. This sector forms the vast majority of those Indians who are employed. In these circumstances discrimination is even greater due to lack of organised support and legal recognition. The need to address discrimination in the unorganised sector is to be seen as a part of the larger issue of recognition of and intervention with unorganised labour especially with respect to general healthcare services and employment benefits.

Closely related to the issue of discrimination in employment are the issues of consent and confidentiality. Some of the questions that arise in the context of the latter two issues are:

a.       Can an employer insist on an HIV/AIDS test at the recruitment stage?

b.      Can an employer mandatorily test members of his/her workforce?

c.       Can an employer insist on the test results being disclosed to him/her?

d.      Is a testing physician duty-bound to disclose employees' test results to their employer?

e.       To what extent is confidentiality to be maintained at the workplace?

These questions are closely linked to the issue of discrimination for if discrimination were mitigated other issues would be of far lesser adverse impact.

Several issues arise in the context of discrimination in employment, which necessitate the examination of law, human rights and corporate policies.

Pre-employment Discrimination

NACO policy clearly discourages pre-employment testing. However, at the recruitment stage, the employer often subjects a prospective employee to an HIV test as part of a medical fitness test. The objective of such a test is to ascertain the general fitness of the prospective employee as it may have implications on the productivity a person is capable of. It has been the experience in most cases, however, that if the person is found to be HIV+ s/he is denied employment. In most cases such a test is irrelevant in judging a person’s fitness for a job. It is necessary to test a person’s specific fitness for the particular job and not the general fitness.  

Another issue that arises in the context of fitness is whether a fitness certificate should be based on a time period, i.e. a person is deemed fit to work for a particular duration of time, and whether a physician would be competent to give such a certificate.

Discrimination in Employment

Judging medical fitness also occurs after the person has been given employment. Here too, the aforementioned issues of consent and confidentiality arise. Often employees are made to undergo an HIV test without consent and their status is divulged to the employer and co-workers, which ultimately leads to discrimination at the workplace and termination of employment. This even occurs in the healthcare sector, where an HIV+ worker is discriminated against and removed from employment due to the employer’s belief that the worker poses a risk to others. It is important therefore to assess ‘risk’ and evolve policy that lays down when risk can be considered ‘significant’. The only study on healthcare worker-to-patient transmission by the CDC (United States’ Government) indicates that the chances of such transmission are extremely remote. (CDC studies showed the chances to be 1 in 41,667 to 1 in 416,667 through cut or needle stick injury. However, the CDC is re-evaluating its data based on epidemiological evidence that transmission even through invasive procedures is negligible.)

Often a PLWHA is kept on the pay roll of the employer but is asked not to report to work. This is a form of discrimination that impinges on the PLWHA fundamental right to work.

During employment a PLWHA may remain absent with greater frequency during the later stages of the illness. At such time special care and support is required. The issue that arises is whether a duty is cast upon the employer to provide such special care to the PLWHA and his/her family.

Medical insurance (such as the Employees’ State Insurance Scheme) is an option that could be suggested in order to facilitate such care and support provided by the employer. This would assist the employee in coping with the economic burden of the illness. At the moment, however, people living with HIV/AIDS are denied insurance as insurance schemes exclude liability for HIV related expenses. This issue is dealt with in more detail in the background paper on People Affected by HIV/AIDS.

‘Reasonable Accommodation’

The law has provided certain innovations that would be useful in the HIV/AIDS context. For instance, the concept of ‘reasonable accommodation’ provides that an employee can be given alternate employment within the same organisation if such a measure does not pose undue financial and administrative hardship to the employer. The issue that arises is whether   ‘reasonable accommodation’ could be used in the HIV/AIDS context to mitigate the discrimination suffered by a PLWHA. Indian courts in circumstances other than HIV/AIDS have used ‘Reasonable accommodation’.

In addition, it may be suggested that the practice of providing ‘reasonable accommodation’ should include shifting an employee from a heavy and strenuous duty to alternate light duty, especially when the illness has progressed.

Other Issues

Several closely related issues need to be addressed when creating a legal and human rights strategy in the area of employment discrimination vis-à-vis HIV/AIDS.

They include the issue of compassionate appointment, i.e. whether compassionate appointment can be denied to a widow on the ground that she is HIV+. This is linked to the question of whether compassionate appointment can be denied to a widow on the ground that her husband was HIV+. Indian labour courts have, in some cases, passed orders favourable to the widow in such instances.

Experience, however, also shows that at present, corporations deny widows of workers their rightful share in employment benefits such as provident funds and gratuity on the ground that the deceased worker was HIV+.

Another widely experienced fallout in this context is that often her in-laws throw the widow out of her matrimonial home and the corporation makes payment of benefits to them, depriving the widow of her legal share.

Clear policy guidelines are needed to deal with these circumstances.

 Women

(Group I - Day 2)

Background

According to recent estimates, the HIV virus is increasingly affecting younger and poorer populations of which women form the largest group. Today heterosexual transmission accounts for 80 percent of HIV infection in India. Further, the data also indicates that 7 out of 10 women affected by HIV are from poor rural and urban communities. The recent data on the spread of HIV/AIDS is transcending the boundaries of high-risk groups thereby enlarging the definition of risk-groups by including into its fold; a) adolescents girls (married and single) b) married women in their reproductive age c) single women d) sex workers at various sites including marital homes e) college and university students f) pregnant women g) women survivors of sexual abuse and rape. In addition, women in need of blood transfusion and those who use drugs are also at risk.

While the virus affects both men and women, there is a significant difference in the way gender identities; roles and gender relations have an impact on the spread of the infection. Gender refers to the widely shared expectations and norms within a society about appropriate male and female behaviour, characteristics and roles. The social construction of gender devalues the feminine and subordinates it to the masculine, which results in a power imbalance between men and women. The social construction of gender increases gender inequalities. Gender differences are based on patriarchal stereotyping which has been more harmful and discriminatory towards women. Women are disadvantaged because of their subordinate positions in all spheres of their life including the family. By virtue of their sex, women have lesser control, lesser choices and lesser rights vis-à-vis men. However, women and men are not a homogenous group; the other identities such as class, caste, tribal, rural, educational and others have a significant impact on their rights and vulnerabilities.

Central to the construction of gender relations is the issue of male-female sexuality, in terms of how a society allows or denies its expression. Various institutions reinforce very different perceptions about male-female sexuality, and notions of aggressive masculinity and passive femininity. Power is fundamental both to sexuality and gender. The unequal power balance in gender relations curtails women’s sexual autonomy and expands male sexual freedom, thereby increasing women’s and men’s risk and vulnerability to HIV.[7] The culture of silence around women’s sexuality and the denial of women’s bodily integrity form the foundation of violations against the Human Rights of women. 

HIV in the Gendered Context

As far as HIV/AIDS is concerned, the present data and research points to two important aspects: first the gender dimension of the virus per se and second, the highly gendered impact of the infection. Women's physiological, social, sexual and economic vulnerabilities intensify the risks to women's lives. Therefore, it is imperative to approach the issue of HIV/AIDS from the perspective of gender vulnerability and Human Rights violations.

In India, the situation of women vis-à-vis HIV/AIDS infection is specially precarious owing to: a) feminisation of poverty and diminishing food security, b) high incidence of compromised health status of the majority female population, c) poor women's inaccessibility to public health care services, d) patriarchal control of women's bodies and sexuality, e) high incidence of sexual abuse and violence against women, f) adolescents marriages and child births, and g) thousands of illegal abortions.

Women’s vulnerabilities are further compounded if they are single or widowed; with discriminatory access to inheritance, shelter and other care facilities. When husband dies, the wife might face a tragic set of circumstances in terms of loss of social support, ostracism from the family and community, lack of legal protection to inherit land and property.

The HIV/AIDS discourse and preventive strategies have become more complex and difficult to deal with as they have opened up issues of sexuality, morality, matrimony, religion and legislation simultaneously. It has brought to surface glaring human rights violations in the day to day lives of women and other marginalized communities such as migrant men from poorer class and caste backgrounds, tribal people, lesbian and gays and other sexual minorities etc. Therefore, HIV/AIDS is more than a health issue; it is, in fact, a cross cutting and inter-sectoral challenge to any society 

The future prevention and treatment strategies must be able to address this whole range of issues affecting diverse people. In the case of women it is worthwhile to re-examine past assumptions and revise future strategies for the prevention and care of women at large at risk of HIV infection 

Women’s Right to Life and Health

As far as prevention, care and treatment services are concerned, addressing women’s health concerns needs to be at the very centre of HIV/AIDS control programs. The increasing HIV susceptibility can only be seen as a continuum of a range of vulnerabilities that women experience as care seekers and care providers within closely interacting institutions, namely the Marriage (family) and the State (health care system). In both the institutions, women are primarily seen in their roles as mothers and wives and not as women in their own right. Therefore women outside these identities tend to lose out on their health rights due to discriminatory treatment. 

The recent mortality and morbidity data clearly indicates a very serious situation that women are faced with: a) TB continues to be the biggest killer; b) deaths due to injury and violence are on the rise; c) unsafe abortions take a big toll of women’s lives (70000 women die of unsafe abortion every year) d) low nutritional status and anaemic conditions are of epidemic proportions (Indian Council for Medical Research reported the prevalence of anaemia among pregnant women as high as 87.6 percent ), and e) very high incidence of STI and RTI.[8] This larger picture is framed within the precariously low sex ratio (927 women per 1000 men). It is clear that poor women are faced with multiple epidemics in their lives. 

In addition, women tend to seek care and treatment of their ailments last and often too late, prioritising the health concerns of the family. An overall neglect of women’s health needs, cultural practices that look at women’s bodies as dirty and impure, the increasing loss of women’s knowledge systems and silence around sex and sexuality, all must be seen as interrelated factors obstructing women’s quest for their right to highest attainable health status and care. 

The gender division of roles and responsibilities also predetermine women’s role as providers rather than receivers of care and treatment. There is emerging evidence that HIV+ women’s and HIV+ men’s needs are very different. This has a direct implication in the way services for women have to be designed.[9] 

Universal Right to Knowledge and Information

Consultations revealed that political leaders, bureaucrats, medical and legal professionals are concerned about the level of literacy of the country as it is seen as one of the major obstacles for effective prevention of HIV/AIDS. As poor women and men form a large part of this pool, there is a danger of seeing them as potential cause of the spread of the infection. This itself displays a bias against people without literacy skills. The overall perception of seeing illiterate people as ignorant and stupid violates people’s sense of dignity. Illiteracy is not synonymous to lack of education. The (implicit) assumption that poor illiterate women are not worthy of receiving and interpreting information and knowledge to their advantage constitutes a violation of women’s right to information. It also has a significant impact on future prevention strategies. 

In the case of HIV/AIDS it is clear that the fear and ignorance about the disease cuts across class and education levels; the consultations clearly indicated that people with high level of literacy and academic qualifications revealed fear, ignorance and stigma. The consultations further reinforced that the HIV positive people faced discrimination in many hospital settings. 

Regardless of literacy level, marital and maternal status, class and caste, occupation, age, gender, sexual orientation/preference and geographic location (urban/rural), the right to information must be upheld.  

Confidentiality, Partner Notification and Consent

According to the present NACO guidelines, the HIV positive person is the only one to be notified of her/his status. She/he is also entitled to counselling that would encourage beneficial disclosure. However, within the Indian socio-cultural context, it is difficult to assume women’s autonomy, as they are seen as dependent on their men and the larger maternal/marital families. Someone from the family often accompanies women to the hospitals and PHC (Primary Health Centres). The notion of the individual privacy and individual decision-making is culturally alien, especially for women. 

Further, most women and men do not have a choice regarding marital partner, as marriages are arranged for them; for women, it is often before they reach puberty. Therefore, the issue of HIV/AIDS in relation to the right to marry affects women and men differently. 

Recognizing women’s unequal social status, lack of female marital decision making power, parents marrying off their daughters at a young and vulnerable age to any man of their choice and the general lack of awareness in society regarding the implication of HIV infection, terms like ‘disclosure’ and ‘consent’ need to be investigated and implemented with this awareness. The Human Rights discourse must be contextualised in this larger reality. So far no socio-legal mechanism exists to ensure that any consent given by a woman would be informed and valid without any overt or subvert pressure or coercion.  

Within our socio-cultural and legal context, for the majority of women, the obligation to marry in itself is a violation of the right to privacy and reduces their control over their bodies; A married woman has little opportunity to deny her husband sex, and as marital rape is not recognized by law, for women, ‘consent to marriage’ often equals  ‘consent to sex’.  Changing the criminal law by recognizing marital rape could provide increased protection against violence against women and HIV infection. Similarly there is no law to address the issue of incest, which also is relevant in the context of HIV/AIDS and children.

From a human rights perspective, it is important to recognize existing partner inequalities. Further, different compulsions inform women’s and men’s decision to marry, to disclose or to give consent to marry. It is not an uncommon experience of women that men marry, remarry, desert and abandon women at their will. By and large, men do not feel compelled to disclose their marital, social, economic status at the time of marriage. The apprehension that men may or may not disclose their health status including their HIV status must be placed in this context. However, it is extremely difficult for a woman to hide her health or HIV status at the time of marriage. 

Therefore, the consequences for her life, once her positive status is discovered, are very different than for a man; if a man subsequent to the marriage comes to know that the woman is HIV positive, in all probability the woman would be abandoned, subjected to violence, deprived of her rights to marital property or lose her right to the children (especially male children), or to be left to care for children if they are positive. In addition, once married to an HIV positive man, a woman is forced to perform all prescribed roles such as caring for her sick husband, doing all household work, bear children at his will and have sex with or without ensuring safety. Hence it is clear that the impact of the same infection is significantly different on the lives of men and women. This is borne out by a number of community based qualitative research findings through the voices of HIV positive women.[10]  

Within the context of HIV/AIDS and legal implications surrounding the discourse, the issue of ‘conflicting rights’ has surfaced. In the case of HIV positive pregnant women the rights of the mother are pitched against the rights of the child, thus making it difficult for women to exercise their decision without guilt. Therefore, effort needs to be made to understand the potential for conflict of rights and commit to developing strategies for resolving them so as not to undermine the core agenda of gender equality and non-discrimination. While no one should be denied the right to marry and no ruling or policy should put the rights of the infected person against the right of the uninfected person, it is imperative for the Human Rights framework to incorporate a gender perspective. 

Strategies for Prevention and Protection

The key issue for discussion is to evolve policies and programmes that are designed to empower women. For future prevention strategies it is relevant to incorporate international blueprints such as the Cairo ICPD[11] Agenda ensuring reproductive rights and the Beijing Platform for Action, as well as the CEDAW[12] that delineate specific policy actions essential for ensuring women’s empowerment.  

The Indian government is signatory to these documents and therefore needs to play a more pro-active role in ensuring their implementation. Creating a supportive policy and appropriate legislative changes for women is crucial for containing the spread of the HIV infection and mitigating its impact.  

There is a strong need to address issues of sexuality for both women and men. In innumerable cases male violence is an associated factor for women in their sexual, intimate encounters. This constitutes a serious violation of women’s bodily integrity and right to privacy. The issues surrounding gender violence have to be located within the Rights’ framework and integrated into HIV/AIDS education, prevention and care programmes. Gender violence jeopardizes women’s health and well being (including sexual and reproductive health) which increases HIV susceptibility. Here it is relevant to ensure the finalization of the Draft on the Domestic Violence Bill.  

The HIV infection needs to be seen as a symptom as well as the outcome of women’s multiple vulnerabilities. The prevention and protection strategies need to evolve a multi-pronged approach. Care policy makers and implementers need to look at women’s health requirements as a composite rather than divided in parts. 

By and large, the past prevention strategies have focussed attention on male condom promotion, monogamy and partner fidelity. Due to systemic gender inequality and powerlessness, women have not found difficulties in enforcing these strategies vis-à-vis their male partners. Some of the women’s empowerment programs for HIV prevention have added to the existing burden of women’s lives, as safe sex negotiation strategies have become the exclusive responsibility of women. This historical context needs a conceptual and programmatic shift; boys and men must be made responsible for their social and sexual behaviour. Thus, it would be useful to strengthen interventions and strategies that increase male involvement and understanding of their responsibilities/roles in preventing the spread of HIV.  

In the light of very low condom use within marital and more permanent partner relationships, it is evident that newer strategies are required to empower women. Until attitudinal changes among boys and men are brought about, women need safety measures in their own control. In Brazil, a project encouraged the use of female condoms by providing them at accessible prices. It showed good results in some regions (80 percent of the women and their partners in Sao Paolo were satisfied with this method).[13] 

Another consideration that is extremely important is to acknowledge that any disadvantaged group such as women and other marginalized communities cannot be empowered if they are continuously blamed for the spread of the infection. It is not a violation of their right to life and dignity, but also deprivation of their social citizenship. HIV/AIDS campaigns exclusively targeting sex workers or similarly vulnerable groups have added to their stigma and neglected protection to other people by creating a false sense of safety/security.

Differently adapted and specially designed communication programmes and services for different groups of people have the possibility of reaching the general population as well as addressing the specific needs of more vulnerable groups. It would be more strategic to use a rational approach to communication rather than a fear-and morality based as it often increases stigma and discrimination of HIV positive people; it reinforces the perception that HIV only hits those who behave immorally. 

Due to the disproportionate discriminatory factors obstructing women’s assertion of their Human Rights, the women’s rights advocates world-over are engaged with issues of affirmative action/positive discrimination. This is based on the understanding that the prevailing gender inequalities cannot be changed within the discourse on formal equality. For empowering all marginalized and discriminated groups, it is imperative, to promote and apply the concept of substantive equality. As far as the fundamental rights are concerned, this principle is clearly enshrined in the constitution of the country. This is pertinent in view of the gendered nature of HIV/AIDS. The gendered reality determines the nature and circumstances of the Human Right’s violations specific to women, as well as the availability and accessibility of remedies for them. 

Key Issues for Discussion

1)      How do we reach women at large and in specific circumstances with HIV/AIDS related information and care needs?

2)       How do we address women’s multiple health needs including HIV vulnerabilities?

3)       How do we resolve the issue of conflicts of rights in the context of legal and ethical issues such as confidentiality, partner notification, free and informed consent?

4)       How to introduce innovative strategies in order to gender sensitise planners, policy makers, the judiciary and various functionaries involved in the HIV/AIDS prevention and care work?

5)       How do we best reduce the stereotyping and discriminatory attitudes that both men and women live with?

6)       How do we reduce stigma, AIDS related discrimination and Human Rights violations of infected and affected women and men?

 Sex Workers[14]

(Group I – Day 2) 

Context

Epidemiological studies following the spread of the HIV pandemic focussed attention on certain ‘high-risk’ groups of which sex workers were considered a significant constituency. Intervention efforts by NGOs and other welfare organisations brought to light the fact that the threat of HIV transmission was a reflection of the more serious and hitherto unaddressed issue of denial of basic human rights. 

Sex work exists in varying contexts, across geographical, religious, caste and class boundaries. These include brothel based, street based, and home based sex work. The issues of relevance are thus as varied. The following paper attempts to articulate the issues that seem common to these contexts.

Human Rights and Sex Work

At the heart of the matter lies the stigma and marginalisation associated with sex work and oppression and exploitation that the sex workers are subjected to. Sex work is not recognized as work; it is seen as a sin or a crime, posing a threat to morality, public health and social order. A natural outcome of this is the denial of basic human rights such as health, housing, and the right to self worth and dignity. The right to bear and rear children, to a large extent eludes them, as they are not granted the status as other single or adoptive mothers are. Discrimination and stigma for their children is all pervasive, debarring a future for them. Harassment at the hands of the law enforcing authorities in the form of police raids, eviction, forced testing, threats and torture is also a matter of grave concern within the human rights paradigm. Further, proposed bills such as the Maharashtra Protection of Sex Workers Bill, 1994, show insensitivity that could lead to even more serious human rights violations such as branding and identification of women as sex workers for the purpose of negative discrimination. 

Statement of the Problem

These grave human rights violations must be understood in the context of vulnerability to HIV/AIDS. The oppressive milieu makes access to health care, negotiation for safer sex and any sort of move towards empowerment that would protect sex workers from HIV transmission practically impossible. Further, there is a lack of knowledge with respect to safer options and the virus itself. The hostile legal and social environment makes effective intervention difficult

Following are some of the common experiences of sex workers from all over the country, which contribute towards the vulnerability to HIV/AIDS: 

·        Non-availability of Health care and services. The stigma linked with sex work makes even the services that are available practically inaccessible to sex workers as well as their families.

·        Arbitrary Police raids; seizure of money and material belongings

·        Physical assault, torture and rape by police personnel. These violent actions make sex workers even more vulnerable to STI/STD and HIV, in social and actual physical terms.

·        Forced testing and detention of sex workers

·        Harassment of workers and clients including extortion and blackmail

·        While some groups such as those in Calcutta, Pondicherry and Tamil Nadu have been able to organise themselves successfully, often at a national level like the National Forum for Advocacy and Support for sex workers, others have found it difficult to come out open as sex workers and form collectives owing to stigma and the fear of oppression and torture from the police.

·         Coercive Rehabilitation programs have been ineffective, misplaced and insensitive to the needs of the communities. Enforcement of the same has led to more human rights violations than actually helping sex workers. This has had the effect of validating the perception among sex workers that the state is more of an adversary than a supporter.

·        Discrimination in housing, education of children, care and support

The statement of the problem is thus in terms of the creation of an enabling environment whereby, factors which push girls and women into involuntary sex work are addressed and the rights of sex workers are respected and protected, health services are made accessible, discrimination against sex workers and their children is done away with and in short, sex workers are considered as human beings.  

Social Hurdles

·        Sex work is considered as “immoral” and a sin by the same society that creates the demand for it and puts women in a position whereby they are abused and exploited.

·        Due to the stigma, sex workers are forced to ghettoise into areas and situations where basic human rights do not exist and basic living requirements including health care, education, information etc. are denied. This is particularly true in the context of brothel-based sex workers.

·        Where there is information as to the risks of unprotected sex, there is no negotiating power, except where sex workers have been able to form collectives and fight for their rights.

·        The culture of silence around sex and the link made between STI/STD and sex work makes health care facilities (where available) inaccessible.

·        Media, political and legal responses to problems faced by sex workers have been insensitive and adverse.

·        The children of sex workers carry the stigma with them and are discriminated against with respect to education, shelter and other essential aspects of living. This leaves them with no future.

·        Inability of sex workers to take recourse to legal action owing to fear, stigma and various socio-economic factors.

·        The silence and stigma around STI/STD, even within the sex workers communities, further enhances the risk to HIV transmission.

·        There is a lack of care and support systems for HIV positive sex workers and their children.  

Legal Hurdles

Laws, which are intended to be protective of women, have in practice worked against their interests, especially sex workers. In addition to the laws that make women vulnerable to HIV in general, sex workers have to contend with the use, abuse and misuse of The Immoral Traffic in Women and Girls Prevention Act, 1986 (ITPA).

·        At the same time, all the necessary concomitants, such as soliciting, keeping of a brothel etc. are punishable by law. As such, sex work is effectively criminalized.

·        Ambiguity in the provisions of ITPA, including the meanings of terms such as “Immoral Traffic”, ‘tender age”, “moral danger” make the law all the more subject to abuse.

·        The ITPA espouses mandatory testing, which is detrimental to public health and the National AIDS Policy.

·        The ITPA provides the police with power that have been misused and manipulated in such a manner that the law itself is an instrument of oppression.

·        Attempts at law reform, such as the Maharashtra Protection of Sex Workers Bill, 1994, have been insensitive and violative of basic rights. (The Bill proposed steps such as mandatory testing, branding with indelible ink and quarantining of sex workers) 

Options

Two main options have been suggested in the context of the legal status of sex work: decriminalisation would imply removal of penalties against the practice of sex work and its necessary concomitants, as far as it relates to consenting adults, and legalisation would imply recognition and regulation of sex work through licensing and other government controls that would permit sex work in specific (and usually limited) ways. A third option is that of criminalisation and subsequent abolition of sex work and related activities. This argument is largely based on the view that prostitution itself is a form of violence perpetrated by society against women and any move towards legalisation will legitimise an exploitative set-up.  

Experiences Articulating Best Practices

Amidst the negative social attitudes and hostilities towards sex work, there have been successful experiences, which generate hope in the years to come. In West Bengal, groups were able to organise a national conference for sex workers in 1992, which was attended by representatives of communities such as doctors, academicians and media representatives. The event enabled sex workers to sensitise and gather support from health care providers, which led to positive action such as recognition of the right to respectable treatment. Recognition of self worth i.e. sex workers looking at their lives positively was a marked step forward in the long drawn process of empowerment. 

Organised groups from Sonagachi and Tamil Nadu have been able to promote condom usage to prevent transmission of HIV by employing peer education strategies and collective action. Organised groups have been in a better position to regulate and minimise the inflow of children into sex work in these areas by putting in place self-regulatory mechanisms. There has also been an increase in bargaining power vis-à-vis state agencies such as the police and the capacity to deal with atrocities by state and civil society alike.  

Sex Worker’s Demands and Felt Needs

·        Recognise sex work as ‘work’, just as any other work and all the rights and obligations rendered to other kinds of work, should be rendered towards sex work too.

·        Decriminalise sex work. This will minimise the misuse of power by the law enforcers and safeguard the worker’s against all forms of exploitation and oppression. Legalisation, it is feared, will grant more powers to the authorities in the form of licenses and regulations and will be detrimental to the interests of the sex workers.

·        Scrap/ amend ITPA and remove the existing loopholes that allow the police to inflict torture on the sex workers.

·        Recognise the fact that the sex worker’s fight for their rights is taking place within the gamut of the wider struggle for women’s empowerment. Seek support from existing women’s collectives and initiatives towards the rights of sex workers.

·        Recognise the sex worker’s right to bear and rear children in a non-discriminatory and least restrictive environment. Provide them access to services such as health and education, which will improve the quality of their lives.

·        Address the need to improve existing (if any) health care services for sex workers. Health care to be provided in a non-judgmental and non-stigmatised environment, thus respecting the worker’s rights to dignity, consent and confidentiality.

·        Provide effective education on HIV/AIDS through creative media strategies such as song and dance sequences and peer education.

·        Messages promoting prevention of HIV transmission must be sensitive to the socio-cultural context of sex workers.

·        Facilitate the creation of an Enabling Environment, which allows for openly talking about condom use and openly promoting condom use. An enabling environment would also promote open discussion as to diseases and health problems and thus access to medical services.

·        Promote the formation of collectives. This is the only way in which problems such as police harassment can be addressed. In many parts of the country, formation of collectives is difficult as there is a constant fear of police torture and coming out in the open as a sex worker has daunting implications.

·        Promote strategies that empower the sex workers community, enabling them to establish their own self-regulatory systems for their collectives. This may prove to be one of the remedies for child trafficking and exploitation within themselves.

·        Create a forum for support and advocacy both within and outside the sex worker’s community.

·        Ensure that the media deals with sex workers with utmost sensitivity and confidentiality. 

Suggested Points for Discussion

1)       What should be the strategy to prevent human rights violations of sex workers, especially by state agencies, such as the police?

2)       What should be done to increase sex workers’ access to basic services such as health care and education?

3)       What steps can be taken to integrate sex workers and their children into mainstream society, to remove stigma and prevent discrimination?

4)       What strategy should be adopted to create an enabling environment, especially in the context of vulnerability to HIV/AIDS?

5)       What should the legal status of sex work be?

Children and Young People[15]

(Group II - Day 2)

 Facts and Figures[16]

·        Adolescents account for one-fifth of the world's population. In India adolescents comprise 21.4 % of the total population.  These include school going and non school going, drop outs, sexually exploited children, working adolescents-both paid and unpaid, unmarried adolescents and married males and females with experience of motherhood and fatherhood.

·        The figures for working children in India range from 5% (1991 census) to more than 50 %(NGO estimates) of the 200 million children in the age group 10-14 years.

·        Gross school enrolment rates for children between 11-14 years are 65% for males and 49 % for females. This is further exacerbated by drop out rates of 54% for males and 60% for females in middle school.

·        With respect to HIV/AIDS, more than half of all new infections globally are in young people below 25 years. Global data indicate that during 1999 alone, 620,000 children under 15 became infected with HIV.

·        In India, current available data, limited as they are, indicate that youth are increasingly at the centre of the HIV/AIDS pandemic both in terms of transmission and impact. Over 50% of all new infections in India take place among young adults below 29 years. The disease has now entered the stage where both parents are dying leaving behind an increasing number of AIDS orphans and infected children.  The stigma and discrimination faced is accentuated if the children themselves are infected, and they grow up in a hostile environment without parental or community support.

Key Findings and Critical Issues[17]

Children and youth in all socio-economic groups in India are especially vulnerable to HIV infection as indicated by key findings of recent studies[18]:

1)       The limited data available suggests a fairly high level of sexual activity amongst youth with boys being more sexually active than girls. This includes both peer sex and sex with adults. However knowledge of HIV/AIDS, safe sex and preventive behaviour (use of condoms) is low across all ages and education levels.^[19] Majority of the information is obtained from peers, which may be inaccurate or misleading, as many misconceptions and myths related to adolescent sexuality proliferate. Girls especially have almost no information and conservative attitudes and lack of openness in matters relating to youth leads to further the perseverance of unsafe practices.

2)       Although the prevalence of Reproductive Tract Infections (RTI) and gynaecological morbidities is alarmingly high, existing reproductive health services do not serve adolescents, let alone providing adolescent friendly services - making it difficult for them to approach health care centres for counselling and services (testing or abortion).

3)       Street children and child labourers are particularly vulnerable due to high incidence of sexual abuse and exploitation. All these children have little or no family support, no access to services without the welfare and social safety nets of the organised sector

-          There are an estimated 100,000 street children in the metropolitan cities like Mumbai, Delhi and Calcutta, and the numbers are increasing due to rapid urbanisation.

-          Street children are especially vulnerable to HIV infection due to lack of awareness and an absence of safety nets. Many of them, as young as 8, report having sex for companionship or as being victims of regular sexual abuse.

-          It is estimated that 60-90 % of street children in Mumbai are sexually active. About 20% of street boys in the 16-20 age group visit commercial sex workers regularly and 80% periodically.

-          Government of India data indicates 17.5 million children in the 5-14 age group as being in the labour force. The most exploitative forms of child labour include child prostitution, forced and bonded labour. These child labourers work and some live in conditions of extreme marginalisation and fall prey to sexual exploitation increasing their vulnerability to HIV/AIDS.  In this context, the situation of the girl child labourer calls for particular attention, with life on the street for the girl child is twice as oppressive and exploitative than that of a boy.

4)       Child prostitution, child trafficking and sexual abuse leading to forced and coerced sex further increase the vulnerability of children to HIV:

-          A 1990 study conducted by the Central Social Welfare Board in six metros reported that roughly 40% of the total commercial sex worker population is below 18 years of age, many of them as young as 8 or 9 years. With every year, about 50,000 more are forced into prostitution. The average age of children in brothels is as low as 13.

-          The children of sex workers are an especially vulnerable group since they are easy victims to the sex trade.

-          Recent studies indicate that the incidence of rape in the under-10 age group has increased by 84% between 1990 and 1994, while the general incidence of reported rape in all age groups has increased from 20,194 in 1990 to 21,500 as of October 1995. These figures represent only the tip of the iceberg.

-          Studies in 1993 estimates that 15% of secondary school girls have been sexually abused. The Social Welfare Board reports increased molestation, rape, and sexual abuse of progressively younger children occurs more within the family than outside.

5)       Given the predominantly patriarchal set up and ideology of sex preference, adolescent girls are especially vulnerable. Their vulnerability is further enhanced considering that increasingly, adult males are targeting younger children for sex in the belief that they are free from HIV and STDs or that sex with a virgin will increase their virility or cure them of STI.  Weaker immune systems due to poor nutrition (as many as 55% of adolescent girls may suffer for anaemia) and underdeveloped genital and anal tracts increase susceptibility to HIV/AIDS

6)       In many countries children resort to drug use for recreational purposes.

-          The UNDCP reports of a close relationship between living on the street and use of drugs.

-          Injecting drug users (IDU) is a major concern especially in the Northeast and in the metropolitan areas of the country.

7)       Mother-to-child transmission: The rising prevalence of HIV among women attending antenatal clinics increases the probability of more children being born with HIV and dying from their infection.

Additional issues

·        Lack of adequate and reliable data-disaggregated by age and gender. This is a major impediment to planning, especially the expansion of the current response to HIV/AIDS.

·        Lack of enabling environment and inadequate opportunity to develop life and livelihood skills.

·        Early age of marriage, high adolescent fertility and maternal mortality - In India, the official age for marriage for girls is 18 years and for boys is 21 years. However certain personal laws permit marriage for a female at the age of puberty/15 years. 54% of females are married by the age of 18^[20] and 64% of married adolescent girls between 17-19 years are already pregnant with their first child. This does not include the large number of unwed mothers for which no data is available. (1 of every 10 births is to an adolescent).^[21]

 The Rights of the Child in a World with HIV/AIDS

There is a global consensus that children's rights need special protection.  In a rights based framework 'all rights apply to all children without exception. It is the State's obligation to protect children from any form of discrimination and to take positive action to promote their rights'. (CRC, Art. 2)  The Convention on the Rights of the Child ensures every child the right to survival and development, the highest attainable standard of health and health services, and if disabled, special care that ensures dignity, promotes self-reliance and facilitates active participation in the community. (CRC, Art. 24)

In the context of HIV/AIDS, the CRC has spelt out principles for reducing children’s vulnerability to infection and to protect them from discrimination because of their real or perceived HIV/AIDS status:

·        Children should have access to HIV/AIDS prevention education, information and to the means of prevention. Measures should be taken to remove social, cultural, political or religious barriers that block children’s access to these.

·        Children’s right to confidentiality and privacy in regard to their HIV status should be recognised. This includes the recognition that HIV testing should be voluntary and done with the informed consent of the person involved which should be obtained in the context of pre-test counselling (keeping in mind the evolving capacities of the child).

·        All children should receive adequate care and treatment for HIV/AIDS, including those children for whom this may require additional costs because of their circumstances, such as orphans. States should include HIV/AIDS as a disability, if disability laws exist, to strengthen the protection of people living with HIV/AIDS against discrimination.

·        Children should have access to HIV/AIDS prevention education and information both in school and out of school, irrespective of their HIV/AIDS status.

·        Children should suffer no discrimination in leisure, recreational, sport and cultural activities because of their HIV/AIDS status.

·        Special measures should be taken by Government to minimise and prevent the impact of HIV/AIDS caused by trafficking, forced prostitution, sexual exploitation, inability to negotiate safe sex, sexual abuse, use of injecting drugs and harmful traditional practices.

Indian Law

The Indian Constitution mandates the State under Article 39 to ensure that “children are not abused and that childhood and youth are protected against exploitation and against moral and material abandonment”.  India ratified the CRC on 11th Dec. 1992.  When countries ratify the convention, they agree to review their laws relating to children. This involves assessing social services, legal, health and educational systems as well as the level of funding for these services.  

·        The Indian Supreme Court expanded the concept of Fundamental Rights to use the provisions made in the Directive Principles in implementation.  Social Sanction Litigation has expanded the scope for Constitutional redress for violation of Child's Rights in many areas, with the right to life being recently interpreted as the positive duty of the state to provide the basic conditions for survival.

·        The State's response to its obligation towards children is contained largely in the Juvenile Justice Act.[22]  Although it makes provision for educational and vocational training and rehabilitation, character development and protection from exploitation, in practice the focus is on institutionalisation.  These are generally perceived as jails for children leading to harassment, extortion and vulnerability for street children.  In light of reports of human rights violations and cases of children running away from the homes, empowerment of children through other interventions needs to be reconsidered (e.g., street based interventions). In addition, the rules and regulations made under the Juvenile Justice Act need to be reconsidered so as to make them compliant with the CRC.

·        There is an absence of any specific laws to deal with the issue of child sexual abuse. Related criminal laws (Sections 376, 377 and 354 of the IPC) are inadequate and provisions relating to evidence and criminal procedures are not suited to deal with such cases. Civil courts also often deal with related cases and provisions of family law and Civil Procedure, if used creatively, can be very effective in dealing with sexual abuse etc. 

·        According to the provision of the Immoral Trafficking Act (prevention) 1956, presumptions are created with respect to certain offences against a child (less than 16 years) and a minor (between 16-18 years) and severe punishments are prescribed for procurement of prostitutes and prostitution in public places. These provisions need to be re-evaluated in light of experiences that show that empowerment of sex workers is effective in restricting entry of children into sex work.

·        The IPC has provisions for dealing with obscenity, including provisions dealing specifically with dissemination of “obscene” material to young persons[23]. ‘The Young Persons' (Harmful Publications') Act 1956 also lays down provisions to prevent dissemination of certain publication harmful to young persons (under the age of 20). In the absence of clear thinking, and ambiguity in the meaning of “obscenity”, these provisions may hinder dissemination of information, which is a prerequisite in empowering young persons to protect themselves.

·        Prevention of transmission among young people and women is a crucial component of the National AIDS Policy (2000).  The Young people - School Talk AIDS (Ministry of Youth and Sports Affairs, soon to be launched is another program which taps into youth and their potential as educators for HIV/AIDS prevention and awareness.  Children's communities committees and Bal panchayat bodies voicing children's demands on rights continue to function at a local level – creating potential platforms for children's participation in larger rights based issues, which will positively impact responses to HIV/AIDS. 

·The most important challenge in India would be to reach the large majority of young people outside the school system who are part of the unorganised and informal  labour force

·To implement youth-centred programmes for the prevention of not only HIV/AIDS but to promote general development of young people through the total participation of young people themselves in every stage of programming.

·Upscale current best practices eg., School-based HIV/AIDS education already implemented in several schools, the UTA programme in colleges. These need to be scaled up to increase the extent of coverage.

·Reorientation and strengthening of existing services to become ‘youth friendly’ services to ensure accessibility and acceptability to young people and children.

·Promotion and development of policies that ensure that the rights of young people are respected, protected and fulfilled.

·Ensuring care and support of orphans and young people living with HIV/AIDS. 

Key issues for Discussion[24] 

1)      How can we protect children's right to information, particularly about issues and safe practices related to adolescent development and sexuality, STD/HIV and substance use?

2)      Children are vulnerable in multiple settings.  How can schools, families, peers, health care facilities, streets, villages, and work places be used to reach them with the relevant information?

3)      How do we promote and protect the rights of AIDS orphans, to treatment, health care, support, employment, education, life without discrimination etc?  - How does this relate to the prevalent testing practices in adoption homes?  - A child being a minor has no access to courts of law. How do we address the right to litigate for a child orphaned on account to both parents dying of HIV/AIDS? Minors often approach health care centres alone for testing or abortion. How does this affect response to HIV/AIDS?

4)      How can young people be involved and mobilized as agents of change, especially on the issue of stigma surrounding HIV in particular and in order to promote safe practices? 

5)      How can the loopholes in and the insensitivity of law (especially criminal law) with respect to child sexual abuse and incest be rectified? (Especially when perpetuated by a family member/ trusted person).   Also the Indian Penal Code does not penalize sexual intercourse by a man with his wife who is above the age of 15 without her consent. There is no legal age for consent to sex by boys. There is, in fact, no recognition of sexual abuse of males. How can these be addressed in the context of HIV/AIDS?

 People Infected and Affected[25]

(Group III – Day 2)

Context

India does not yet have a complete picture as to the magnitude of the HIV pandemic especially considering the lack of surveillance data in vast regions in the country. But in areas where surveillance has taken place it is seen that the pandemic follows its unbridled path and is beginning to surface in all spheres of life including homes, the workplace and the health care sector. It is now quite clear that HIV/AIDS in India is not just a medical issue but also an issue that cuts across all economic, social and cultural realms. It is also an issue that does not affect particular groups but has an impact on all. It is important, therefore, that the tendency to blame a certain section of society needs to be combated if prevention and control efforts are to be effective. 

As the pandemic has grown, experiences reflect a consistent pattern through which discrimination, marginalisation, stigmatisation and more generally, a lack of respect for the human rights and dignity of individuals and groups heighten their vulnerability to HIV/AIDS. Very often such discrimination stems from ignorance about the route of HIV/AIDS transmission and unwarranted fears of infection. The ignorance and fear has led to harsh laws and measures that violate the rights and freedoms of those trying to avoid HIV infection and of those already living with HIV/AIDS.  

No one has experienced fear and courage, ignorance and insight, prejudice and acceptance, despair and hope more fully or intensely than people living with HIV/AIDS (PLWHA). Yet, this experience is not confined to just PLWHA but also those who are dependent on, related to or associated with a PLWHA. These persons include spouse, partners, children, widow (-er) s, orphans, parents, other family members and friends of PLWHA. Clearly, this is a vast and significant segment of society. While developing any response and implementing any strategy vis-à-vis HIV/AIDS the needs and experiences of this entire group of people affected must also be considered.        

Human Rights and People Affected

The main human rights issues concerning PLWHA include:

·        Denial of healthcare and treatment – The most common human rights violation is refusal to medical treatment. For instance, first aid and emergency services like surgery are denied once the sero-status of the patient is disclosed. PLWHA have difficulty in accessing medication even for opportunistic infections. They require health care providers who are well trained, sensitive and knowledgeable about care and treatment but it is commonly found that healthcare workers actively discriminate against PLWHA, due to several misconceptions about HIV/AIDS. Further the cost of the treatment is prohibitive. (Refer to the background papers on Consent, Confidentiality and Discrimination in Healthcare). 

·        Denial of and/or removal from employment - PLWHA commonly experience various forms of discrimination in the employment sector. These include refusal to employ PLWHA, termination of employment, refusal to grant various benefits to both the PLWHA employee and his/her dependants or family members and denial of compassionate appointment for dependants. (Refer to the background paper on Discrimination and Employment).  

·      Access to and Availability of Drugs – Access to drugs is a critical emerging issue in the HIV/AIDS context. With a new patent law likely to be enforced in India by 2005 under the Trade Related aspects of Intellectual Property (TRIPS) of the World Trade Organisation, effectively product patents for new drugs will be recognised under Indian law as compared to the hitherto followed process patent system. Thus, Indian pharmaceutical companies will be prevented from manufacturing new and effective HIV/AIDS drugs whose patents would lie with foreign inventors/patent holders and manufacturers. This will result in foreign monopoly rights in pharmaceutical manufacture and sale of drugs. Consequently India is likely to see a drastic increase in prices, which would make drugs prohibitively expensive and inaccessible to a vast majority. This would have adversely affected the fundamental right to health of PLWHA.

However, TRIPS gives grounds under which a government could combat unaffordable prices. This method of compulsory licensing could be exercised in cases of national emergency, extreme urgency, anti-competition or for public non-commercial use – these are widely defined grounds that are left to individual governments to incorporate into their national legislations more specifically. It is left, then, to the Indian government to give full meaning to it’s peoples fundamental right to health by incorporating such grounds meaningfully and in a manner that makes essential drugs and those required for serious health crises freely and easily available. Clearly, this is an issue of grave concern in HIV/AIDS context.

In light of a new legal regime, apart from the access to drugs, certain drugs that do not fall under the new patent regime, and should therefore be freely available (drugs for opportunistic infections, post exposure prophylaxis for needle stick injuries, drugs preventing mother-to-child transmission) are not available.

·        Denial of various services including insurance, medical benefits etc - Insurance systems exclude such services to PLWHA and their dependants. Apart from the Employees State Insurance Scheme, which is applicable only to corporations or employers that use this scheme, there is no medical insurance scheme that provides insurance benefits to PLWHA and their dependants. All other medical insurance schemes in the country such as Mediclaim and Jana Arogya Bima policies specifically exclude PLWHA and any illnesses arising out of HIV/AIDS. This makes accessibility to health services even more difficult for PLWHA and their dependants. The issue which needs to be addressed in this context is whether in a low sero-prevalence setting currently existing in India, if an insurance policy for HIV/AIDS were introduced, a sufficient fund could be created for the future, whereby medical expenses that are bound to increase could be subsidised and covered at a later date, when the need arises. Actuarial studies require to be undertaken immediately, so that the viability of such insurance schemes can be properly examined.

Apart from medical insurance, it has been experienced that life insurance policies are denied to PLWHA. Their dependants are also denied their rightful dues under such policies on the death of the policyholder due to causes related to HIV/AIDS. These are critical issues that need to be addressed if the human rights of all people affected by HIV/AIDS are to be upheld.  

·        Access to Information – PLWHA have little access to information about HIV/AIDS and life after the infection. Primarily, most of the information is targeted at people who are not infected, because prevention appears to be the media priority. As such, much of the available information is fear based. Much media reporting is irresponsible, blame-oriented and insensitive. At the same time media responses ignore the needs of people already affected; they are as much, if not more, in need of accurate information. PLWHA are poorly informed about even the basic issues like hygiene, nutrition, diet, behavioural change and legal rights relating to HIV/AIDS. Not many of them have information on prevention of opportunistic infections. The key constraint to accessing information is the prevalence of misconceptions and misinformation about HIV/AIDS that deceive the PLWHA into thinking he or she is adequately informed. Other constraints include poor literacy levels, ill-planned and ill-targeted media campaigns and the lack of a non-judgmental, safe environment to access information. Information providers such as the media, health care workers, and other PLWHA themselves have little or no accurate information to share with the PLWHA.     

·        Legal remedy - Another significant issue of concern is that PLWHA have no knowledge about where to address human rights violations. There is a severe lack of information about fora that could address the issues of human rights violations and related grievances. Even if legal aid and services are available there is sometimes a delayed response from PLWHA. A key reason for this is that most respondents fear that their sero-status would become public knowledge while trying to address human rights violations against them. Therefore, PLWHA need to be informed about legal innovations such as ‘suppression of identity’ orders that are issued by courts, whereby parties to litigation are given pseudonyms.

·        Lack of strong support systems – Misconceptions about HIV lead to lack of support for PLWHA. Sources of support include family, spouses, friends and relatives. Support makes a considerable difference to the quality of life of PLWHA. Sometimes gender biases also exist i.e. women provide support to their male partners men but men seldom offer support to HIV+ women. It is commonly seen that many joint families ask PLWHA to move out once their sero-status has been disclosed. Family members and relatives physically isolate PLWHA by forcing them to use separate soaps, towels and utensils, by not talking to the person and by not touching their clothes. Children in the household are prevented from playing, interacting or eating with the PLWHA. 

Many women with HIV who have been widowed by the death of their HIV+ spouses are thrown out of their matrimonial house and forced to return to their maternal homes.

HIV- children of HIV+ parents suffer various forms of discrimination and lack support structures. Schools refuse to admit the children of HIV+ parents. The real problem arises when they are orphaned, as even the extended families do not want to keep HIV+ children. This is an issue that needs urgent addressing. With an increasing number of deaths related to HIV/AIDS likely to occur in the coming years there is distinct likelihood that many children will be left destitute – children who may or may not be HIV+. There is an abject lack of capacity to support children in such circumstances. Measures to protect their human rights need to be taken expeditiously. Amongst children also there is an increase in the rate of HIV+ children.

Different studies highlight the intensity of stigma and discrimination faced by PLWHA. PLWHA feel demoralized by constant discrimination. Some withdraw from the community and family. Most of them do not wish to disclose their status to anyone. A few develop suicidal tendencies. Low self-esteem is a universal feature. All this can only be overcome by promoting social acceptance of PLWHA. Sensitive media campaigns can play a very crucial role as they can encourage PLWHA to come forward, educate the general public about HIV/ AIDS and promote social acceptance of PLWHA. Human rights should be included as an integral part of prevention programs.

      Law, ethics and human rights are means to ensure that human dignity is universally respected (in all situations and contexts). Further they are crucial aspects of any comprehensive response developed to deal with the HIV/AIDS pandemic. In this context, experience has shown that intervention strategies that protect and promote the rights of people affected are far more effective and acceptable than those violating the human rights of affected populations. Some of the issues that arise in this context may be thus identified:

Key Issues for Discussion

1)       What specific measures, including legal measures should be taken to ensure that the rights of people affected are not violated?

2)       Specifically, what steps should be taken to ensure that PLWHA have access to health care (including drugs), employment, insurance and other community resources and services?

3)       What strategies should be evolved to provide PLWHA access to accurate information on life after infection including information about various drug and treatment options?

4)       How can family and community support systems be strengthened for people affected by HIV/AIDS?

(Group IV - Day 2)

Context

The phrase “Sexual Minorities” refers to an entire range of people comprising of groups and individuals whose sexual orientation or gender identity sets them apart from the majority mainstream population, which is predominantly heterosexual. Sexual minority does not imply any homogeneity of character and there is no common or universal identity amongst sexual minorities. The phrase includes:

·        People who are attracted to members of their same sex (whether men or women)

·        Those who identify themselves with or as the opposite sex

·        Those who identify themselves as a third sex

·        Traditional communities such as hijras, jogtas and kothis

·        People who are forced into same sex behaviour due to economic compulsions (e.g. male commercial sex workers, masseurs, bar boys)

·        People who indulge in situational same sex behaviour, but may not identify with any of the sexual minority groups (same sex behaviour in predominantly male concentrated populations such as, boys hostels, prisons or the armed forces)

Documented evidence of same sex behaviour may be seen from the Vedic era, through the generations, and up to the present date. Some studies estimate that 5 to 8% of any given population is homosexual. Very few behavioural studies have been conducted on same-sex behaviour in India. Amongst these, most studies have focussed on same sex behaviour/orientation amongst men while not much work has been done on same sex behaviour/orientation amongst women.

Rough estimates point out that there are about 50 million men, in India, who have sex with men. Owing to the culture of silence around women’s sexuality, similar estimates would not be accurate.

Human Rights and Sexual Minorities

All sexual minorities are stigmatised and disempowered – socially, culturally, politically, legally and often, economically. The manner and extent of the disempowerment, however differs from group to group and from region to region. The fundamental right to life, which has been construed by our Supreme Court to mean the right to a wholesome life, is denied to sexual minorities by virtue of there being no safe spaces where alternate sexual and gender identities may exist. The freedom of speech and expression does not exist for these populations and access to basic services such as health, are denied. In the case of some populations, such as hijras, there is no legal recognition of their very existence. These invisible populations are denied the most basic social, cultural and civil rights contemplated by the human rights regime, not just by civil society, but also by positive state action.

Although our Constitution does not specifically recognise sexual orientation as a basis of non-discrimination, it does prohibit discrimination on the ground of sex. If sex is construed to include ‘sexual orientation’ in it’s ambit, then clearly there is a bar on such discrimination.

Statement of the Problem

It is today an accepted hypothesis that unless the rights of those who are most affected by the pandemic are protected and actively promoted their vulnerability to the pandemic cannot be reduced. In addition, this approach will help in making prevention efforts more effective in the larger community.  The fact that sexual minorities are denied basic rights makes them vulnerable to HIV.

·        The social context, in which sexual minorities exist, along with the hostile legal regime, pushes sexual minorities into risky behaviour and also limits access to health and support.

·        Harassment, extortion, blackmail and coercive sex under the threat of disclosure or prosecution are direct results of the hostile environment.

·        The creation of safe spaces for interaction of sexual minorities is actively discouraged, thereby rendering sexual contact possible only in public spaces. Such sexual interaction is often hurried and furtive. In such circumstances there is often no space for considering and/or negotiating safer sex options. These problems are compounded by identification by certain groups with female gender stereotypes, which decreases their power to negotiate safer options.

·        Such a context actively discourages the setting up of medical and care services targeted at the specific needs of sexual minorities. People do not access medical services (where available) to deal with STI/STD owing to the fear of same sex behaviour being discovered and stigmatisation/prosecution. The existence of and the problems related to male sex work also need to be understood in this context.

·        Criminal provisions with respect to same sex behaviour directly impede access to information regarding safer sexual practices. Such lack of information enhances the possibility of risky behaviour and further complicates the situation.

·        Vulnerability of sexual minorities is also an issue of concern vis-à-vis transmission amongst the heterosexual population as there is a significant amount of heterosexual interaction amongst sexual minorities. For example, there are a large number of bisexual men and women. There also are other sexual minorities who face and often succumb to considerable social pressure to conform to the heterosexual norm and to get married.  

A strategy that focuses on behaviour and on safer sex information is clearly insufficient. Two approaches have recently emerged that have looked beyond just behaviour. One attempts at organising already existing traditional identities, such as the kothi identity (which implies effeminate males, usually from the more economically depressed segments) and to empower this most disempowered of groups, so that they become capable of negotiating safer options and protecting themselves. Owing to the culture of silence around women’s sexuality, similar identities have not been identified and categorised. The other focuses on empowerment through promoting the development of more concrete identities, such as gay (self-identified MSM usually from economically stable backgrounds) or lesbian identities, which in turn acts against vulnerability.

The statement of the problem would therefore be in identifying and addressing factors that lead to disempowerment of sexual minorities and therefore to their vulnerability, in the context of emerging identities based on sexual orientation and gender. 

Social Hurdles

·        Minimal social acceptance of sexual minorities and pressures to conform with heterosexual norms

·        Silence with respect to sexuality in general, which makes dialogue on rights issues related to sexuality difficult if not impossible

·        No space for alternative sexual identities to develop. Empowerment is not possible without the evolution of identities

·        Economic compulsion pushes men and boys into sex work

·        Identification with female gender stereotypes by certain segments puts them in unequal power relationships

·        Difficult to access medical and legal services due to stigma and social attitudes

·        Groups such as hijras are assigned particular roles and accorded particular stereotypes in society. These roles disallow such groups from social, cultural or economic empowerment. 

·        Condoms are culturally associated with contraception and not safer sex. As such, condoms are not generally linked with same sex behaviour.

·        Discrimination at places of employment, in housing and other sites is rampant.

Legal Hurdles

·        Section 377 of the Indian Penal Code, which reproduces 19^th century anti-sodomy laws from England, criminalizes “carnal intercourse against the order of nature”. The punishment prescribed under this provision is imprisonment for a maximum of ten years and fine. The offence does not differentiate between consensual and non-consensual same sex behaviour.

·        There is no legal recourse against sexual abuse and violence within same sex behaviour. A complaint under Section 377 would implicate the person offended as well. As such, the law does not recognise male rape and child sexual abuse of boys.

·        Section 377 is the basis of harassment of sexual minorities. The police pick up people from public spaces, such as parks and public toilets. Extortion, violence, sexual harassment and other violations of basic rights occur frequently. Harassment is even more severe when the person is an effeminate male.

·        The laws relating to Obscenity and Public Nuisance, under the Indian Penal Code and the local Police Acts are also used to harass people from sexual minorities.

·        Health interventions with sexual minorities may be construed as abetment of these offences. This has been a source of harassment of organisations and groups working with sexual minorities. HIV focused interventions are thus not possible without fear of persecution and violence from the police.

·        Publication of material focused on safer sex and the above-mentioned laws may hit HIV/AIDS in the same-sex context. Access to resource material is also restricted due to these laws. This makes spreading of information, intervention and empowerment even more difficult.

·        The law does not even recognise the existence of trans-gendered people. It is difficult for them to get ration cards, voter identity cards and passports. In such circumstances, it is not possible for them to access their rights.

·        Hijras are often harassed and abused under the laws relating to sex work.

·        There are and have been sensitive police officials who have co-operated with the intervention programs, but this is dependent on individual sensitivity and one transfer can alter the real life situations of sexual minorities.

·        Due to the illegality and stigma surrounding same sex behaviours, registration of organisations working on sexual health and sexual minorities is difficult. This hinders intervention efforts.

·        As long as Section 377 criminalizes same-sex behaviour there may be no legitimate intervention or development of any support structures for sexual minorities. Despite this many States have taken cognisance of some issues related to sexual minorities in their response to HIV/AIDS. 

Suggested Points for Discussion

1)       Should Section 377 of the Indian Penal Code be done away with? The Law Commission has recently recommended that rape laws should be made gender neutral so as to include male rape and child sexual abuse of male children along with the repeal of Section 377. Is this a positive recommendation from a public health perspective?

2)       Should the Constitution be amended to clearly recognise sexual orientation/gender identity as a prohibited marker for discrimination like sex, caste, religion etc?  

3)       Should there be a move towards a positive anti-discrimination statute with respect to sexual minorities such as in the South African Constitution?

4)       What strategies could be developed for the empowerment of sexual minorities and the creation of an enabling environment?

5)       Should there be a Constitutional / legal recognition of the third sex?

6)       What can be done in order to change the social attitudes towards sexual minorities?

7)       What can be done to stop police harassment of sexual minorities?

Injecting Drug Users[27]

(Group IV – Day 2)

Context

Drug use is prevalent in all parts of the country and across classifications of class, caste, religion and gender. Owing to the traditional culture of drug use, ganja, charas, bhang and opium have been linked with religious functions and also have been used for medicinal and recreational purposes for centuries.

The shift from these traditional drugs to life endangering drugs such as heroin and brown sugar and further, to pharmaceutical drugs, is linked with the legal, social and economic developments in the last few decades. 

The introduction of the Narcotic and Psychotropic Substances Act (NDPS Act) in 1985, which did not reflect the socio-cultural realities of drug use patterns in India, criminalized possession, manufacture and sale of certain drugs, including those that were traditionally used. The impact on availability and quality of ganja and charas pushed more people into use of Heroin and Brown Sugar, which around this time were flooding the drug market.  

The initial use of these drugs was mostly by smoking, but the fall in availability and quality, and the rise in prices encouraged the use of these drugs in the injectable form. Non-access to heroin also made people seek treatment. Injectable pharmaceutical drugs, such as Tidigesic, were used for the purpose of providing relief from heroin withdrawal symptoms. This, on one hand, made injecting a more popular mode of drug use, and on the other, introduced drug users to pharmaceutical drugs. 

At present, the commonly used drugs include pharmaceutical drugs that are available across the counter at Chemist shops at affordable prices and without the fears and restrictions of criminal law.  

The impact of drug use on the health and economic status of individuals as well as the community at large is one significant concern. The other major concern is that intravenous drug use is the third largest mode of transmission of HIV in India. As a matter of fact, in some states such as Manipur, it has been recognised as the most common mode of transmission. Intravenous drug use and the vulnerability of drug users to HIV/AIDS has become an issue of concern in other parts of the country as well, particularly in urban areas.   

Human Rights and Drug Use

The human rights of drug users, especially from the lowest economic strata are constantly violated, owing, firstly to the social constructions around certain forms of drug use and secondly, to the abuse of laws by law enforcement agencies. Intravenous drug users, being an easily identifiable group, are harassed by the police (atrocities include physical abuse, extortion and illegal detention), denied access to and discriminated against in health care and employment sectors and denied access to services that may aid in effective rehabilitation.  

Intravenous drug use gives rise to serious health problems such as abscesses, gangrenes, tuberculosis and other respiratory diseases. These problems require immediate treatment and may be fatal if services are not provided. Intravenous drug users of the lowest economic sections have no access to such services. Even where services are available, they are not accessed until the last moment, due to discrimination and the fear of it. This drives the community underground and along with it, a significant portion of people who are more vulnerable to HIV.  

The onslaught of the HIV/AIDS pandemic has given rise to further discrimination in the health care sector. Identification of a person as an intravenous drug user often implies total refusal of treatment. In other circumstances, identification as an intravenous drug user implies forced testing without pre- or post-test counselling and subsequent denial of health care, sometimes even emergency services.  

The vulnerability to HIV/AIDS due to drug use is also linked with vulnerability due to other circumstances. There is a link between drug use and sex work. Often, people do sex work to support their habit and vice versa. There is a link between child sexual abuse on the street and drug use. Younger children are often encouraged to take drugs by adults/older children so as to do away with resistance.  

Vulnerability to HIV/AIDS is thus linked with this denial of basic human rights. 

Problem Statement

In dealing with problems around drug use, the two important objectives are to provide effective rehabilitation options and the prevention of HIV transmission.

With respect to rehabilitation strategies:

·        There are no real options available to drug users other than abstinence and piecemeal rehabilitation programs. The success of these strategies has been minimal as compared to the grave human rights violations that they entail, such as chaining and beating of drug users as part of “therapy”.

·        There is a lack of understanding with respect to the experience of addiction and de-addiction.

·        Social support is not given importance in rehabilitation strategies, whereas it is impossible for a person to break out of the habit without support due to stigma and discrimination

·        Where attempts have been made to come out of the habit, the lack of support structures to absorb those “rehabilitated” and the absence of an enabling environment push people into relapses.

·        Many people begin drug use during adolescence and as such may not have had the opportunity to develop particular skills that may support any sort of lifestyle.

·        There is no support for people who are affected by Drug use but may not themselves use drugs. Links between violence against women and drug use, the predicament of widows, orphans, destitute children etc need to be understood and addressed.

·        Applying a comprehensive strategy, linking harm reduction to long-term rehabilitation could be a more viable option as experience has shown that neither can work in isolation. 

With respect to strategies focussing on prevention of HIV transmission:

Sharing of needles/syringes is the main form of high-risk behaviour related to injecting drug use. The reasons why people engage in such behaviour include:

·        Lack of awareness as to HIV and of the fact that transmission is possible though sharing of needles

·        The fear of police harassment discourages access to clean needles and carrying of personal equipment.

·        For poorer drug users, personal or clean needles are often not affordable

·        Drug use is often a group activity where sharing of equipment is a source of bonding. 

To counter these problems, needle exchange programmes have been introduced in some parts of the country. Whereas such initiatives may be considered abetment of offences under the NDPS Act, some states have attempted to implement and support such programmes. In addition to legal concerns, questions have been raised about the sustainability and community support for these programmes. 

Other possibilities of state supported and community based initiatives for not only harm reduction but also drug-demand reduction may be explored. 

The problem statement is thus with respect to the creation of an enabling environment that addresses social stigma and discrimination, legal strategies to deal effectively with the inflow of drugs, support structures for intravenous drug users and strategies that find a balance between harm reduction and rehabilitation. Such strategy must be based on respect for human rights of the affected communities. 

Social Hurdles

Stigma sticks to a person once she/he is identified as a “drug addict”. Termination of employment and social rejection (including rejection by family members) and isolation are common experiences of drug users. Apart from a moral basis for such a stigma, drug users are often suspected to be thieves involved in petty crimes in order to sustain the habit. Such stereotypes make reintegration into society very difficult. 

In the context of Delhi, the intravenous drug users are a floating population. As such, continuity of interventions is difficult. In such circumstances, medical services and harm reduction programs gain importance. 

The fear of stigma is a cause for people not accessing health care, especially in the context of HIV/AIDS. This is more so in the case of needle exchange programs. This is to say that in order to provide effective solutions, there must also be a larger change in the way that drug use and drug users are perceived. Counselling of families has been suggested along with the counselling of drug users in this context. 

Legal hurdles

The NDPS Act provides for the prohibition and regulation of cultivation, collection, production, manufacture, transport, export, import inter-state and in and out of India, transhipment, possession, use, consumption, sale, purchase, warehousing, trafficking etc. of narcotic drugs and psychotropic substances which are enlisted in schedules to the Act.  

The Act is amongst the strictest laws in India. The punishments prescribed in the Act include death penalty in certain cases, imprisonment up to 20 years and fines up to the sum of the Rupees 2 lakh. Rules of evidence and procedure are also changed in order to make conviction more probable. All offences under the Act are cognisable and there may be no bail except under certain circumstances. A large population of under-trials in prisons all over the country is detained under this Act. 

The Act recognises a difference between a drug dealer and a drug “addict”. There is provision for an addict to be released on probation if she/he undertakes to undergo medical treatment at a hospital maintained or recognised by the government. 

In practice, the NDPS Act is rarely used in the manner envisaged. Drug dealers and peddlers are rarely prosecuted, while the user is often subjected to harassment, physical violence, and extortion of money and drugs. Apart from the abuse of the powers under the NDPS Act, other criminal laws are used to harass intravenous drug users from the lower economic strata. The reason is that drug users living on the streets, close to temples and other sources of free food are the easiest targets of the misuse of law. People are picked up on a regular basis and booked for petty crimes to show that action has been taken on any given complaint. In such circumstances, drug users have no help at all, no access to legal services and no knowledge of rights.         

Police harassment has a serious impact on the efficacy of health and rehabilitation interventions. Police often pick up (arrest or illegally detain) people in the process of rehabilitation. This problem is compounded in areas where intravenous drug users are a floating population. Police harassment and the fear of police harassment literally chase drug users away from health services. This problem is even worse in the context of needle exchange programs. Even where a needle exchange program is supported by a State AIDS Control Society, there is no co-operation from the law enforcement agencies and harassment continues to be a hurdle. 

The fact that the laws relating to drugs are not sensitive to the fact that a large percentage of drugs being abused are available easily at low prices at Chemists shops is another shortcoming of the legal response. In Delhi it has been observed that older people use drugs such as heroin whereas younger people use pharmaceutical drugs, perhaps due to the perception that pharmaceutical drugs are not “drugs” and due to the fact that buying them is not illegal. 

Corruption in the criminal justice system ensures that the bigger dealers and retailers do not face any trouble whereas drug users off the streets have to face harassment and extortion.  

There is an urgent need to take a fresh look at the legal regime around drugs and drug use.

Points for Discussion

1)      What legal reforms could be initiated so as to reduce drug demand and alter drug-using patterns?

2)      What strategies may be evolved in order to ensure access to medical and other services to IDU?

3)      What steps may be taken to prevent the abuse of laws against intravenous drug users?

4)      What steps need to be taken in order to provide an enabling environment for rehabilitation and integration of IDU in society?

5)      On the basis of a human rights approach, could harm reduction programmes be a part of the state’s response to HIV/AIDS?

6)       The therapeutic community approach, based on self-help groups, whereby peers organise themselves to support each other have been seen to be successful. What can the state do to encourage such initiatives? 

[1] This paper has been written after a process of consultation organised by the Lawyers Collective HIV/AIDS Unit in Mumbai on 29^th July 2000. To incorporate as wide a spectrum of views and concerns as possible, the consultation was held with people living with HIV/AIDS, members of the medical community, NGOs working in the HIV/AIDS field including those working with vulnerable populations, counsellors, members of trade unions, a representative of the Mumbai District AIDS Control Society, a representative of UNAIDS and lawyers. The consultation was an opportunity for participants to articulate their concerns and express their views with respect to the issues of consent, confidentiality and discrimination vis-à-vis HIV/AIDS. The consultative process is limited to the extent that most of the participants shared their experiences as felt in and peculiar to Mumbai. To overcome this limitation, the paper was circulated nationally to experts for their feedbacks and inputs, which have been incorporated to the extent possible.

[2] This paper has been written after a process of consultation organised by the Lawyers Collective HIV/AIDS Unit in Mumbai on 29^th July 2000. To incorporate as wide a spectrum of views and concerns as possible, the consultation was held with people living with HIV/AIDS, members of the medical community, NGOs working in the HIV/AIDS field including those working with vulnerable populations, counsellors, members of trade unions, a representative of the Mumbai District AIDS Control Society, a representative of UNAIDS and lawyers. The consultation was an opportunity for participants to articulate their concerns and express their views with respect to the issues of consent, confidentiality and discrimination vis-à-vis HIV/AIDS. The consultative process is limited to the extent that most of the participants shared their experiences as felt in and peculiar to Mumbai. To overcome this limitation, the paper was circulated nationally to experts for their feedbacks and inputs, which have been incorporated to the extent possible.

[3] This paper has been written after a process of consultation organised by the Lawyers Collective HIV/AIDS Unit in Mumbai on 29^th July 2000. To incorporate as wide a spectrum of views and concerns as possible, the consultation was held with people living with HIV/AIDS, members of the medical community, NGOs working in the HIV/AIDS field including those working with vulnerable populations, counsellors, members of trade unions, a representative of the Mumbai District AIDS Control Society, a representative of UNAIDS and lawyers. The consultation was an opportunity for participants to articulate their concerns and express their views with respect to the issues of consent, confidentiality and discrimination vis-à-vis HIV/AIDS. The consultative process is limited to the extent that most of the participants shared their experiences as felt in and peculiar to Mumbai. To overcome this limitation, the paper was circulated nationally to experts for their feedbacks and inputs, which have been incorporated to the extent possible.

[4] PEP is a combination drug regimen, which if administered within a certain time, can prevent the healthcare worker infected by needle stick injury from becoming HIV+.)

[5] This paper has been written after a process of consultation organised by the Lawyers Collective HIV/AIDS Unit in Mumbai on 29^th July 2000. To incorporate as wide a spectrum of views and concerns as possible, the consultation was held with people living with HIV/AIDS, members of the medical community, NGOs working in the HIV/AIDS field including those working with vulnerable populations, counsellors, members of trade unions, a representative of the Mumbai District AIDS Control Society, a representative of UNAIDS and lawyers. The consultation was an opportunity for participants to articulate their concerns and express their views with respect to the issues of consent, confidentiality and discrimination vis-à-vis HIV/AIDS. The consultative process is limited to the extent that most of the participants shared their experiences as felt in and peculiar to Mumbai. To overcome this limitation, the paper was circulated nationally to experts for their feedbacks and inputs, which have been incorporated to the extent possible.

[6] State refers to government, parliament, legislatures, and municipal bodies, state controlled bodies & corporations & bodies created by statute.

[7] Weiss, E. and G. Rao Gupta 1988 Bridging the Gap; Addressing Gender and Sexuality in HIV Prevention. Washington, DC.

[8] National Profile on Women, Health and Development  - Country Profile – India, edited by Dr. Sarla Gopalan and Dr. Mira Shiva, Voluntary Health Association of India, WHO April 2000.

[9] Shalini Bharat: ‘HIV/AIDS Related Discrimination, Stigmatisation and Denial in India – a study in Mumbai and Bangalore’, Unit for Family Studies, Tata Institute of Social Sciences, Mumbai, India (1999). 

[10] Community Based Research on Gender and HIV/AIDS ISST, 2000 sponsored by UNIFEM

[11] International Conference on Population and Development, Cairo 1994.

[12] Convention Against the Elimination of Discrimination Against Women (UN 1979).

[13]

[14] This paper is largely based on the deliberations of the national meet organised between 28^th – 30^th April 2000 at Chennai to launch the National Forum for Advocacy and Support for Sex Workers. The meeting was attended by participants from various parts of the country. The commonality between the participants cannot be overemphasised; while some belonged to organised and relatively articulate groups, others came from contexts where such organisation and group processes are unheard of. It may be pointed out that this paper may not adequately articulate issues in certain unorganised contexts such as street-based, home-based and flying sex workers. Thus, the views presented herein may not be representative of the entire group in question. To address this limitation, this paper was sent out to various experts and consultants in the field for their comments and inputs. These have been considered and incorporated to the extent possible.

[15] The 'Convention on the Rights of the Child (UN, 1989)'defines 'children' as 'all persons up to the age of 18 years'. WHO defines 'adolescents' as 'between the ages 10-19 ' and 'young people' as 'between the ages 10-24'. AS per GOI, youth in India are defined to be between 15 - 35 years. In this document 'adolescents', 'youth' and 'young people' have been used interchangeably

[16] Main sources of data are: MOHFW, Country Paper, 1998; Adolescent in India – A Profile, UNFPA 2000; MOHRD 1998-99; Report on the global HIV/AIDS pandemic in India-UNAIDS 2000; NACO – Country Scenario 1999-2000 & India Responds to HIV/AIDS.

[17] Synthesis of UNICEF Consultations conducted with young people, NGOs working with young people and currently available data.  UNICEF held state level consultations (in Maharashtra, Andhra Pradesh, Karnataka, Tamil Nadu, and Rajasthan) with State AIDS Societies, NGO, CBO and other stakeholders. These were followed by a national level consultation. The participatory process at the state level provided a significant opportunity for discussing current programs, exploring practical ways of addressing rights of children and young people and identified critical issues for discussion.

⁹ Main sources of data are: Adolescent Sexuality and Fertility in India: Preliminary findings of four studies undertaken in India by International Centre for Research on Women, Presented at the Workshop. Bangalore 1998: other data are from studies conducted by UNFPA, Commonwealth Youth Programme, Field Research conducted by the NAZ Foundation, 65 City Risk Behaviour Survey, NACO; Report on the six regional workshops on Sexual Trafficking of Children. Social Welfare Board. 1992

[19] NHFS survey

[20] NHFS 1998-99

[21] Adolescent Profile in India – UNFPA (2000)

[22] Juvenile Justice Act (1986) deals with neglected and delinquent juveniles. Juveniles are defined as girls under 18 and boys under 16

[23] Section 292 and 293 of the Indian Penal Code

[24] The discussion and results of the key issues should aim at Identifying and determining the use of the above described existing laws and mechanisms in order to optimally expand the response/reach children and youth to remedy their vulnerabilities

[25] This background paper is partly based on the 1999 Needs Assessment Study of People Living With HIV/AIDS by the Indian Network For People Living With HIV/AIDS and the INP+ Strategic Plan for 2000-2002.

[26] This background paper is based on the deliberations at the “Looking into the next Millennium” conference conducted by the Humsafar Trust at Mumbai in the month of May 2000. Sexual minority groups and individuals attended this conference from all over the country, including Andhra Pradesh, Bihar, Delhi, Karnataka, Maharashtra, Orissa, Tamil Nadu and West Bengal. The process may not, however, be considered to be representative of all sections of sexual minorities. Hijras, for example, were represented only to a limited extent. Similarly, participation of lesbian groups at this meeting was limited. To address this limitation, this paper was sent out to various experts and consultants in the field for their comments and inputs. These have been considered and incorporated to the extent possible.

[27] This paper is based on interactions with groups and individuals working with injecting drug users in the states of Manipur and Delhi. As such, the identification of issues may not be exhaustive and in the case of some states, may not be reflective of the actual situation. At the same time, the paper attempts to provide an overview of issues of concern that are general in nature, while only referring to the specific contexts of Manipur and Delhi. This paper also does not deal exhaustively with specific issues around drug use and women, owing to the limitations of the consultative process. To address this limitation, this paper was sent out to various experts and consultants in the field for their comments and inputs. These have been considered and incorporated to the extent possible.

Annex D            International Guidelines on Human Rights and HIV/AIDS[1]

[1] Source: <www.unaids.org>, UNAIDS, 08 December 2000.

Committee on the Rights of the Child, General Discussion, 5 October 1998

The Committee on the Rights of the Child periodically devotes one day of general discussion during its official sessions to a specific article of the Convention on the Rights of the Child (CRC) or to a theme in the area of the rights of the child in order to enhance understanding of the contents and implications of the Convention.

The Committee decided to devote one day of general discussion to the issue of “Children living in a World with HIV/AIDS” on 5 October 1998.

In an outline prepared to guide the general discussion, the Committee pointed out that the HIV/AIDS epidemic has drastically changed the world in which all children live. Millions of children have been infected and died worldwide since the beginning of the epidemic. Initially considered to be only marginally affected, later research has pointed out that women and children are increasingly becoming infected, with the majority of new infections in many parts of the world taking place in young people between the ages of 15 and 24. Younger children are predominantly infected by HIV-positive mothers who are not aware of their infection and transmit the virus to their children before or during birth or through breast-feeding. Adolescents are also highly vulnerable to HIV/AIDS, and more so because their early sexual experiences often take place without access to proper information. The epidemic has also increased victimization of children living in particularly difficult circumstances, who are at greater risk of infection, which in turn leads to stigmatization and greater discrimination.

The Committee also stressed the relevance of the CRC to prevention efforts, recalling that HIV/AIDS is often seen primarily as a medical problem, while the holistic, rights-centered approach, required by the Convention, is more appropriate to tackle the much broader range of issues involved

The Committee identified five main areas to be considered during the day of general discussion:

·         Identifying and understanding the rights of children living in a world with HIV/AIDS and evaluating their status at national level;

·         Promoting the general principles of the Convention in the context of HIV/AIDS, including non-discrimination and participation;

·         Identifying best practices in the implementation of rights related to the prevention of HIV/AIDS infection and the care for, and protection of, children infected or affected by the epidemic;

·         Contributing to the formulation and promotion of child-oriented policies, strategies, and programmes to prevent and combat HIV/AIDS;

·         Promoting the adoption at the national level of approaches inspired by the International Guidelines oh HIV/AIDS and Human Rights, jointly issued by the Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS.

On the basis of the recommendations of the discussion groups and the general discussion that followed on the various issues, the Committee formulated the following recommendations:

(a)    States, programmes and agencies of the United Nations system, and NGOs should be encouraged to adopt a child's rights approach to HIV/AIDS. States should incorporate the rights of the child in their national HIV/AIDS policies and programmes, and include national HIV/AIDS programme structures into the national monitoring and coordinating mechanisms for children's rights.

(b)   States should adopt and disseminate the International Guidelines on HIV/AIDS and Human Rights and ensure their implementation at the national level. Programmes and agencies of the United Nations system as well as NGOs should contribute to the dissemination and implementation of the Guidelines.

(c)    The right of children to participate fully and actively in the formulation and implementation of HIV/AIDS strategies, programmes and policies should be fully recognized. A supportive and enabling environment should be provided, in which children are allowed to participate and receive support for their own initiatives. The proven effectiveness of peer education strategies, in particular, should be recognized and taken into account for its protential contribution to the mitigation of the impact of the HIV/AIDS epidemic. The key objective of HIV/AIDS policies should be to empower children to protect themselves. 

(d)   Access to information as a fundamental right of the child should become the key element in HIV/AIDS prevention strategies. States should review existing laws or enact new legislation to guarantee the right of children to have access to HIV/AIDS related information, including to voluntary testing. 

(e)    Information campaigns targeting children should take into account the diversity of audience groups and be structured accordingly. Information on HIV/AIDS should be adapted to the social, cultural and economic context, and it should be made available through age-appropriate media and channels of dissemination. In the selection of target groups, attention should be given to the special needs of children who experience discrimination or who are in need of special protection. Information strategies should be evaluated for their effectiveness in leading to a change of attitudes. Information on the Convention of the Rights of the Child and on HIV/AIDS issues, including the teaching of life-skills, should be incorporated into school curricula, while different strategies should be designed to distribute such information to children who cannot be reached through the school system. 

(f)      HIV/AIDS data collected by States, and by programmes and agencies of the United Nations system, should reflect the Convention's definition of a child (human beings under eighteen years of age). Data on HIV/AIDS should be disaggregated by age and gender and reflect the situation of children living in different circumstances and of children in need of special protection. Such data should inform the design of programmes and policies targeted to address the needs of different groups of children.

(g)    More information should be collected and disseminated on best practices, in particular on community-based approaches to HIV/AIDS which have positive outcomes.

(h)    More research should be carried out on mother-to-child transmission, and in particular on the risk and alternatives to breast-feeding.

(i)       Information designed to raise awareness about the epidemic should avoid dramatizing HIV/AIDS in ways that can lead to further stigmatization for those affected by the epidemic. 

(j)      States should review existing laws or enact new legislation to fully implement article 2 of the Convention on the Rights of the Child, in particular to prohibit expressly discrimination based on real or perceived HIV status and to prohibit mandatory testing.

(k)   Urgent attention should be given to the ways in which gender-based discrimination places girls at higher risk in relation to HIV/AIDS. Girls should be specifically targeted for access to services, information, and participation in HIV/AIDS related programmes, while the gender-based roles predominant in each situation should be carefully considered when planning strategies for specific communities. States should also review existing laws or enact new legislation to guarantee inheritance rights and security of tenure for children irrespective of their gender.  

(l)       Prevention and care strategies designed to deal with the epidemic should focus on children in need of special protection, including those living in institutions (whether social welfare ones or detention centres), those living or working in the streets, those suffering from sexual or other types of exploitation, those suffering from sexual or other forms of abuse and neglect, those involved in armed conflict, etc. States should, in particular, review existing laws or enact new legislation to protect children against sexual exploitation and abuse and to ensure rehabilitation of victims and the prosecution of perpetrators. Particular attention should also be given to discrimination based on sexual orientation, as homosexual boys and girls often face acute discrimination while being a particularly vulnerable group in the context of HIV/AIDS.  

(m)  HIV/AIDS care should be defined broadly and inclusively to cover not only the provision of medical treatment, but also of psychological attention and social reintegration as well as protection and support, including of a legal nature.  

(n)    Barriers to the provision of youth friendly health services should be identified and removed. States should review existing laws or enact new legislation to regulate the minimum age for access to health counselling, care and welfare benefits. The formulation of adolescent reproductive health policies should be based on the right of children to have access to information and services, including those designed to prevent sexually transmitted diseases or teen-age pregnancy.

(o)   States should review existing laws or enact new legislation to recognize the specific rights of the child to privacy and confidentiality with respect to HIV/AIDS, including the need for the media to respect these rights while contributing to the dissemination of information on HIV/AIDS.

(p)   States, programmes and agencies of the United Nations system, and NGOs should explore the possibilities for new partnerships which could bring together organizations that deal with human rights, children-centred ones and AIDS-focused ones to look together for ways to respond to the epidemic, and to work together in reporting to the Committee on the Rights of the Child.