Reaching out for better care and attention

Millions of people living with HIV/AIDS in India are disappointed with the delay in passing of HIV/AIDS Bill
Saturday, October 1, 2011

On July 5 this year, the Union Health Minister Ghulam Nabi Azad seemed to have reinvented the wheel by saying that the government may not be in a position to foot the treatment bill of those living with HIV. The provision of free treatment is one of the key features of the draft HIV/AIDS Bill which has been hanging fire for last five years and this disownment is not acceptable to the community. It wants the government to acknowledge that those living with HIV have no other choice but to take lifelong medications and the costly second and third line treatments are beyond their reach.

Though the second line treatment is being provided for free, it can be discontinued any time and the action can’t be challenged in the court of law. This is the reason why the community wants the HIV/AIDS bill to carry a guarantee for free treatment. It remains to be seen whether our country, which doles out billions of dollars in grants to African nations, will offer indefinite succour to its own people.

How it all started

A demand for the HIV/AIDS Bill was first raised in May 2002 during the ‘International Policymakers Conference on HIV/AIDS’ where the then Prime Minister A B Vajpayee and Leader of Opposition in the Lok Sabha Sonia Gandhi underscored the need for an effective response to the epidemic. Several cases of discrimination against people living with HIV/AIDS were being reported from across the country. Whether it was denial of treatment in a hospital, dismissal from jobs, expulsion of HIV-affected children from schools, absence of informed consent or non-maintenance of confidentially, the HIV positives or their families were being denied their fundamental rights on various fronts. The discrimination continues to this date.

Though India has a National AIDS Prevention and Control Policy, it does not have the status of law and is not binding on or enforceable in court. A person claiming that she has lost her job because of her HIV status cannot ask for a remedy by urging that this goes against the national policy. On the other hand, presence of a nationally applicable law would lend consistency, clarity and predictability and courts would be able to effectively pass judgment in HIV/AIDS cases. In addition, the law was also needed to fulfil India’s international obligations. In 2001, the United Nations General Assembly adopted the UN Declaration of Commitment on HIV/AIDS and India as a signatory to this declaration is committed to general obligations such as the prohibition of discrimination. So an advisory working group on the draft legislation was convened and Lawyers Collective HIV/AIDS unit (LCHAU) was requested to undertake the work.

Though India has a National AIDS Prevention and Control Policy, it does not have the status of law and is not binding. A person claiming loss of job because of his HIV status cannot ask for a remedy by urging that this goes against the national policy.

Nationwide consultations on the Bill were conducted involving people living with HIV, high risk groups including injecting drug users, men having sex with men and commercial sex workers, women and children’s groups, healthcare service providers, trade unions, lawyers and other civil society organisations. Regional level consultations were organised in the North, South, East, West and the Northeast of the country. It was because of this exercise, that a comprehensive bill was prepared which caters to almost all aspects of HIV/AIDS. If one compares the draft legislation with present laws in Cambodia, Vietnam or Sierra Leone, the Indian bill covers all the issues in much more detail.

However, despite submission of the bill in 2006, it is yet to see the light of the day. It remained with the law ministry for two and a half years because the ministry had reservations about important provisions. It modified the bill to include provisions of mandatory testing and isolation of those living with HIV/AIDS which was not at all acceptable to the community. After a lot of protests and advocacy initiatives, the law ministry was forced to drop these clauses. After several rounds of arguments and counterarguments, the sixth draft was found to be acceptable and the ministry cleared it in 2010. But now the bill is pending with the health ministry which is taking its own time to clear it.

What does this Bill mean? 

The draft bill specifically prohibits discrimination in private and public sector. No person may be discriminated against in employment, education, healthcare, travel, insurance etc. just on the basis of his/her HIV status. The bill also accepts that HIV positive face discrimination in hospitals because doctors and other healthcare providers are not provided universal protection against infections. This is why the bill imposes a duty on the health institutes to ensure universal precautions and training to their staff. Anybody being tested, treated or considered for research regarding HIV/AIDS should be properly informed and should approve of the procedure. The bill also specifies the exact protocol for and circumstances in which a healthcare provider can inform the partner of an HIV positive person of his/her status. There are exceptions to this clause. For instance, if such a disclosure can lead to violence against women, the notification is avoided.

The bill also imposes a duty on those living with HIV/AIDS to prevent transmission by disclosing their status to their partners or by adopting safer sex practices. The interventions like promotion of condom usage among commercial sex workers and safe needles among injecting drug users are protected from criminal or civil prosecution. This does not mean that commercial sex or drug usage is legal but the advocacy of these safe methods can’t be stopped just because they promote such behaviour.

The bill imposes a duty on those living with HIV/AIDS to prevent transmission by disclosing their status to their partners or by adopting safer sex practices

Institutional grievance redressal machinery is also envisioned with health ombuds in each district, independent and accountable HIV/AIDS authorities and special court procedures which ensure quick trials without disclosure of identity. The bill specifically recognises certain rights for women, children and persons in the care and custody of the state like prisoners who due to social, economic, legal and other factors find themselves more vulnerable to HIV. It provides for registration of marriages, provision of maintenance and the right of residence for HIV positive women. Special provisions addressed at children and young persons provide for protection of inheritance and property of HIV affected children.

This law is for you and me 

One important misconception is that the HIV/AIDS Bill is only for HIV positive persons. It should be recognised that only by protecting the rights of the most vulnerable, can we hope to tackle the epidemic and thereby protect all of us. By getting protection against discrimination, confidentiality and access to treatment, people feel encouraged to come forward for testing with the understanding that there will be no adverse consequences if they are found to be HIV positive and if there are, the law will offer protection. By recognising the rights of women, they are empowered to demand information and safer sexual practices from their partners.

Only by protecting the rights of the most vulnerable can we hope to tackle the epidemic and thereby protect all of us from HIV

By protecting needle exchange, condom promotion and sexual health information programmes, those who are ostracised by the society on the basis of morality and law can protect themselves and others from HIV. By recognising the right of all citizens to question their government the government bodies are made accountable, consultative and democratic. The epidemic has to emerge from the underground so that HIV/AIDS is no longer a synonym for fear, neglect, discrimination and violence but for empowerment, compassion, united action and triumph. 

But that can happen only if the government accepts the HIV/AIDS Bill in its true spirit and recognises the greater good it will bring to the country. Till then, many more will get the HIV virus, several will be discriminated against and deprived of the care they so rightly deserve.

This write up is based on an interaction with Raman Chawla, a senior advocacy officer at Lawyers Collective HIV/AIDS unit, and information given in the Lawyers Collective’s newsletter

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