Freedom from discrimination

Recently, when the government cleared the amendments in the HIV/AIDS (Prevention and Control) Bill, 2014, making “discrimination and laxity in treatment” a criminal offence Daisy David, a HIV-positive activist, finally breathed a little easy.

“It has been a long struggle since 2002 when activists had first proposed strong action against discrimination. It’s taken the government more than two years to prepare the Bill with the new amendments; it had been tabled in the Upper House in January 2014.

Once the amended Bill is passed in the Lower House discrimination and negligence in treatment will become a criminal offence,” says David, who has been advocating for the rights of the Most at risk Populations (MARPs) for several years now.

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Recently, the government cleared the amendments in the HIV/AIDS (Prevention and Control) Bill, 2014, making “discrimination and laxity in treatment” a criminal offence and yet there’s a lot that will still need to be done before those suffering from one of the most life-threatening diseases are able to live with dignity

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David is one among an estimated 2.4 million HIV-positive people in India, the third highest number after South Africa and Nigeria. According to government data, the epidemic is presently “concentrated” among high risk groups such as female sex workers, men-who-have-sex-with-men and injecting drug users, also known as MARPs.

But even though the new Bill states that it is important for these groups to be able to gain access to critical services including availability of condoms, clean needles and syringes, as well to treatment for Sexually Transmitted Infections and HIV testing, to prevent spread of disease to the general population, they haven’t been included yet.

Indeed, while concerted advocacy and awareness programmes have definitely brought down the number of new infections to half, containing further transmission continues to remain a major challenge. David, therefore, is quite vocal on the demand for equitable treatment opportunities and an anti-discrimination law.

“Treatment is the primary concern. Since people have been living with a deadly virus in their body it is the duty of the government to provide adequate availability of treatment facilities,” she asserts, adding, “it is sheer discrimination that makes our already difficult lives all the more complex.”

Like David, this new Bill has given L Deepak Singh, 49, reasons to hope albeit with caution. When he had been tested positive and was seeking treatment on the quiet all those years back his greatest fears had not revolved around living with the disease but about being discovered.

Today, he is on Anti-Retro Viral (ART) treatment and happily married with a daughter whose safety he wants to ensure. “The Bill to criminalise discrimination and penalise the guilty is highly warranted,” he states, “After all, it is the second generation that is at high risk of being left out with no access of proper treatment.”

The newly amended Bill is expected to be made law during the upcoming winter session of parliament, if other highly political issues do not take priority. With it, for the first time, private health service providers will be bound to render compulsory and emergency treatment for HIV people.

Additionally, no one will be tested or treated for HIV without their knowledge and consent. The status of a person, too, will remain a private matter and will not be disclosed without the person’s informed consent. A breach will be deemed a criminal offence.

For years, activists have expressed concern over persecution of family members and/or children of HIV positive people. They concur that it’s the worst form of discrimination and needs to be dealt with under the law.

Just last year a couple with two children had committed suicide in Howrah district of West Bengal after their status was made public in a government hospital and doctors denied their children treatment. Similar incidents were made public in Goa when a reputed public school decided to throw out students suspected of HIV status.

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The newly amended Bill is expected to be made law during the upcoming winter session of parliament, if other highly political issues do not take priority. With it, for the first time, private health service providers will be bound to render compulsory and emergency treatment for HIV people

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Apprehension and anxiety brought on by such prejudiced attitudes forces many to avoid seeking treatment. Children of HIV positive parents face blatant discrimination at school, in their neighbourhoods and even within their own families.

The second generation HIV positive youngsters also have their share of problems to contend with. Take Prakriti Thomgbam, 17. Born HIV positive she has lived her entire life on ART. She was in her teens when her status was made public by a pharmacist to whom she had gone for medication to treat her lung infection.

Doctors usually mention the status of the patient in their prescription which makes it impossible to maintain confidentiality and usually leads to gross victimisation. Thomgbam remarks, “The main reasons for seeking protection under the law are to get rid of the kind of ill-treatment that drives people like me into living in anonymity and to ensure continued and easy availability of ART.”

“Once the Bill is passed, discrimination against HIV positive people will attract a minimum of three months imprisonment with a maximum of two years or a fine of up to one lakh rupees or both.

“Penalisation will be a deterrent for blatant discrimination, especially in treatment,” says Dr Anita Victor, Director-Health, World Vision India, a humanitarian organisation working with people living with HIV/AIDS.

“However, there is a glitch regarding the inclusion of the phrase ‘as far as possible’, especially considering a general sense of laxity and indifference, while providing free treatment,” she adds.

Clause 14 of the HIV/AIDS Bill 2014 states: “The measures to be taken by the Central Government or State Government shall include the measure for providing, ‘as far as possible’, Anti-Retroviral and Opportunistic Infection Management to people living with HIV or AIDS.” In light of this, activists feel that the victory that came with free treatment being a legal right has been diluted.

Although the Bill has a rights-based approach and raises issues like “inclusion” for “protected persons” it does not specifically include “Most at risk Populations (MARP)”. By omitting them from the category of “Protected Persons”, the Bill has denied them the protection of their rights i.e., the right to equality, right to informed consent for HIV test and treatment, and right to confidentiality.

MARPs are now lobbying for the addition of a sub-section to the definition of “Protected Persons” that will include them as well.

If MARPs are singled out and denied healthcare, education and jobs – simply on the basis of their high-risk activities – then they become all the more vulnerable to HIV as it will compel them to avoid seeking information or accessing healthcare.

By protecting these groups the government can ensure that they remain mainstream and are able to use available testing and treatment services. This is one way of controlling transmission of HIV to the general population.

As such, it’s the status of children with HIV that remains the most susceptible as not only have they ‘inherited’ the disease they also have a long way to go. Currently, an estimated 1,38,456 children are living with HIV (NACO Technical report, 2015) in India.

The government plans to draw up a district-specific implementation plan with specific resource allocation for treatment and diagnosis of HIV people, including children, in every state.