News that the HIV Bill has been approved by the cabinet is to be welcomed. The government, and in particular Arun Jaitley, deserve kudos for getting it to this stage. Hopefully, it will be passed by Parliament in the coming winter session with the support of all parties, it being non-partisan from the beginning.
Some changes were made by the government to the last draft that was made public on demand of the People Living With HIV (PLHIV) community. First, the amendment made by the government to the draft Bill included the provision to the effect that Anti Retroviral Treatment (ART) would be available to PLHIV “as far as possible.” We know the government understood the fallacy of that expression and deleted the same. The Bill now provides that treatment would be provided to all PLHIV as needed. Indian generic companies supply ARVs to all PLHIV in developing countries. It would have indeed been ironical for the law not to do that for PLHIV in India.
Second, the government amended the draft Bill to remove the protection to the Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) community. The protection to the LGBTI community was included in the draft Bill as it is understood that it is because of their vulnerability and lack of protection for them in the law that HIV also spreads. It is not known what decision the government has taken on this issue. That will be known only when the HIV Bill approved by the cabinet is made public. Nevertheless, the approval by the cabinet of the Bill is a milestone, which must be welcomed. The Bill has had a tortuous journey for over 10 years, shuttling between health and other ministries, apart from being kept in limbo in the law ministry for a long period.
There are about 21 lakh PLHIV in India. Despite the fact that new infections are going down, the total number of PLHIV will not decrease significantly for the next few decades. Further, despite all the sensitisation on the issue, PLHIV are routinely discriminated against. So, the HIV Bill is much needed, premised on a rights-based approach and on the assumption that to ensure the rights of all members of society, the rights of PLHVI have to be protected.
The Bill is significant in numerous ways. Apart from the fact that it provides for measures relating to discrimination against PLHIV, it is the first time that the law will address discrimination in the private sector. The Constitution provides for addressing discrimination in the “state” sector.
However, it is the private sector where discrimination is rife, whether in health, employment, education, renting property, insurance, standing for office or otherwise. The Bill tackles that. On PLHIV becoming known, they are often thrown out of their households. The HIV Bill provides that a PLHIV under 18 years has the right to reside in a shared household.
The Bill also recognises the autonomy of PLHIV in terms of testing and treatment and provides for consent for the same as also for confidentiality on testing. No person can be compelled to disclose his or her status except with informed consent or by an order of a court of law. Entities disclosing the status of PLHIV would be liable under the Bill.
Another first is a creative measure for redressal in case of denial of treatment to a PLHIV person, both at the institutional level and at the local district level. Discrimination is rife in the health sector, especially in surgeries involving PLHIVs. If the surgery required is not done immediately, a PLHIV can first approach the appropriate authority in the health care facility which is mandated to address the issue in a time-bound manner.
This would, over time, tone the health facilities to respond to complaints. If that fails, the PLHIV can approach the local ombudpersons, mandated to give directions to the health facility to provide the required treatment, even on an emergency basis and/or in a time-bound manner.
Ombudspersons are required to be set up at the district level to allow for grievances to be redressed.
No law can mandate a healthcare worker to provide treatment when undertaking the procedure would be a risk without safety measures, like provision of gloves, addressed for the worker. This often results in denial of treatment of PLHIV. The HIV Bill, for the first time, mandates the authorities to provide a “safe working environment” to healthcare workers. Only with that kind of environment will doctors not hesitate to treat patients who would otherwise pose a significant risk to them.
Most importantly, the HIV Bill is a result of numerous consultations with all the communities affected by HIV and other stakeholders, within and out of government, standing together to prevent the spread of HIV. The success of the Bill is partly guaranteed because of the PLHIV community, which has the highest stake, has been involved at each turn the Bill has taken. When it becomes law, the HIV Bill will not suffer for lack of persons pushing its implementation. However, its success will have far-reaching impacts on other health legislations that need to be enacted.
(This article first appeared in the print edition under the headline ‘A Bill for better health’)