The HIV Prevention and Control Bill 2017, passed by the Parliament on Wednesday is a progressive piece of legislation that people living with HIV, and public health activists have been waiting for at least two decades. Although considerably late and not without some failings, it's expected to help normalise the lives of more than two million people living with the virus, and those who might be infected in future.
Despite some of its tentative provisions, the Bill is a good instrument that could empower people - men, women and children - who are living with HIV, and prevent new infections considerably, if applied in letter and spirit.
Availability of ARVs (anti retroviral) and the rapid improvement in their efficacy have converted HIV from a "killer disease" to a chronic condition such as a diabetes and hypertension. From a fistful of drugs multiple times a day, that too with debilitating side effects and uncertain efficacy, ARV medication has now become so sophisticated that one or two pills a day can keep an infected person healthy and normal.
If they have access to the right ARV and treatment for associated conditions, people living with HIV are likely to die of old age or other diseases than HIV. People still get infected and they still die, but not on the apocalyptic scale that the the world was originally made to believe. People living with HIV can now lead normal and productive lives. In fact, the originally ballyhooed scare is almost invisible because of ARV.
People with HIV are denied jobs (mostly through pre-employment screening), denied treatment, and are excluded from communities, schools and public places. The Bill makes all this illegal.
However, the biggest obstacle to the lives of people living with HIV is stigma, discrimination and a host of rights violations. Although in western countries, and even in countries such as Thailand, living with HIV is perfectly normal and picking on them for their HIV-status is illegal, in India, they are subjected to discrimination everywhere - in the community, at workplace, hospitals, schools and so on. People are denied jobs (mostly through pre-employment screening), denied treatment, and are excluded from communities, schools and public places. They are often tested without their consent and their HIV-status is made public.
The Bill makes all this illegal.
People living with HIV or those who don't know their HIV-status cannot be denied jobs based on HIV tests because pre-employment screening is illegal now. Similarly, it's impossible to undergo surgery, however minor it is, in India without an HIV-test. Hospitals and surgeons routinely test their patients before surgery and reject them if they are found to be HIV-positive, however life-threatening their condition is. In the entire West as well as many other countries, this is illegal. They don't care about the HIV status of the patient and use universal precautions to protect themselves from getting infected during surgery. In India, instead of making universal precautions mandatory and stricter, people with HIV are outrightly excluded. The Bill puts an end to this.
HIV-positive people also face severe discrimination in schools, households and communities. This happens mainly because of the unethical disclosure of their status by others. It's routinely reported in Indian media how people have been beaten to death or excommunicated because they were either HIV positive or suspected to be HIV positive, and how children have been expelled from schools because both school authorities and parents of other children were anxious about the spread of the virus. With the Bill, such disclosures and expulsions become illegal.
The Bill does promise ARV and treatment for associated conditions (opportunistic infections), but doesn't make it an absolute guarantee. This is a major failing.
The Bill also has many other provisions that seek to strengthen confidentiality including in courts.
Although stigma and discrimination are as debilitating as HIV itself, the core of the global response that normalised the epidemic is access to treatment - not the ARV alone, but also other medications that HIV-positive people may require because of their immuno-compromised condition and drug-resistance that they may develop over a period of time. The Bill does promise ARV and treatment for associated conditions (opportunistic infections), but doesn't make it an absolute guarantee. This is a major failing.
According to the Bill, "The measures to be taken by the central or state governments under section 13 shall include measures for providing, as far as possible, anti-retroviral therapy and opportunistic management to people living with HIV or AIDS." This ambiguity has come under fire from both activists and the parliamentarians themselves, but instead of amending it, the health minister would only promise that all the affected would get treatment. We do not have to write this in the Bill, reportedly he said.
ARV comes under threat whenever there is a budget-squeeze. Health and social sector are the first on the chopping board when government tries to be austere. In the recent past, there were major shortages in the supply of ARV.
Will the hospitals stop screening people for HIV before surgery and stop denying them treatment if they are found to be HIV-positive?
Providing treatment for all infected by HIV is a huge undertaking because it's complex and also requires a sophisticated diagnostic infrastructure across the country. With funds from both the government of India and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), a large number of people have been brought under treatment. However, with global funding for HIV on the wane, the government will have to keep its allocation commensurately high. Although it's a manageable condition in majority of cases, when affected by complications and co-infections, HIV can be messy and expensive as well.
Another shortcoming in the bill is the lack of social protection for people affected by HIV. Large scale studies across the world have clearly established that HIV can push people and households into irreversible poverty and the only safeguard against it is some form of social protection. In fact, many countries have included HIV - along with old age, widowhood etc - as a condition for social protection. Some Indian states have taken a lead in this direction, but the Bill has failed to recognise its significance.
The new legislation is a major step in the right direction; but the challenge is its implementation without which it's not even worth the paper it's printed on.
Will the hospitals stop screening people for HIV before surgery and stop denying them treatment if they are found to be HIV-positive? Will companies stop pre-employment screening for HIV? Will society as a whole learn how to respect confidentiality and privacy? It will need a paradigm shift, and probably the Bill can be the starting point.
Also on HuffPost India