(It’s World AIDS Day on 1 December. With more than 21 million HIV positive people, India has the third highest number of HIV-AIDS patients after South Africa and Nigeria.)
After shuttling between ministries and lying in limbo for over ten years, the crucial HIV Bill is set to be passed by the Parliament in the current winter Session. The entire text of the Bill has been made available for public consumption only this week.
For the 21 million HIV positive people in the country, a Bill which criminalises discrimination would bring unprecedented joy; after all for decades, people carrying the virus have suffered stigmatisation, humiliation and denials. However, if you read the fine print, you will find the current version of the Bill might have its heart in the right place but it is flawed and watered down at many levels.
Here’s an explainer:
Remove the “As Far As Possible” Clause
Access to lifesaving treatment is a basic thing a country can do for people suffering from diseases as crippling as AIDS, but even today, almost two-thirds of HIV positive transgenders and just a third of female sex workers have access to free ART in India.
Either doctors show these vulnerable high-risk groups the door or they are so stigmatised by the hospital that they prefer to die in the anonymity of their homes than seek treatment for the virus. These startling findings are from the latest study published in medical journal, The Lancet.
This Bill brings a rights-based approach to AIDS treatment. ART, or the lifesaving HIV medication, will be a legal right for positive people “as far as possible”. And that’s where the catch lies. Section 14 of the Bill makes fair access to ART a right but shies away from making it legally tenable in the court of law. So now with this loophole, the Centre and states can take preventive measures for the provision of anti-retroviral therapy against the spread of HIV only “as far as possible”.
Last year, there was not a single ART centre in Maharashtra or Karnataka, the two states with very high HIV prevalence. HIV medication is so expensive that more than one-third patients seek treatment at the free government ART centres. The lifesaving medicine supply for millions of patients was stuck because of a lack of public health funds and ‘red-tapism’ at the government’s end.
In scenarios like this, or when a transgender HIV positive person is denied medication because the doctor says they don’t know how to treat them, the loophole, “as far as possible” can and will be exploited.
“As far as possible” limits free and fair treatment for the vulnerable section. The HIV activists held a press conference in Delhi this week “to appeal members of the Rajya Sabha to delete this phrase, ‘as far as possible’ for a comprehensive treatment for all”.
The Sketchy Role Of the Ombudsman
Let’s say that an insurance company denies cover to an HIV positive person. The Bill provides for an ombudsman at the state level to deal with all discrepancies and violations in healthcare services.
Now when the Bill was drafted by civil society, an ombudsman at the district-level was envisioned so that HIV positive people, who mostly don’t wish to be identified and are of fragile health, don’t have to approach the courts for matters of discrimination. Dragging an issue to court would also mean hiring a lawyer and repeatedly appearing for hearings for a long time. So an ombudsman with judiciary powers would be a quick and efficient way for addressing grievances.
However, in the current Bill, the powers and capacity of the ombudsman have not been defined. The official would be an ordinary government servant working at the state-level and not district. So imagine the workload dumped on one person with no prior experience of dealing with HIV cases.
Confidentiality Protection Is Sacrosanct
Confidentiality is sacrosanct for HIV patients. The Bill does not force patients to reveal their status without consent. Even though confidentiality is in NACOs’ (the country’s HIV-AIDS arm) objective, that is at the policy level. Now that it is a law, no hospital or clinic or the HR guys in offices can mess up the confidentiality norms because they can be taken to court.
The Bill will be presented in the winter session of the Rajya Sabha. In the current state, with the sticky points up in the air, there is a lot of scope for improvement in the Bill. But you have to give it to the government for at least clearing a health Bill which has been tossed around in various ministries from a decade. It is important that at least the ball has started rolling.