Social stigma dulls impact of World AIDS Day in India
Discrimination remains widespread for people with HIV
World AIDS Day every December 1 is celebrated as an occasion for people to unite and fight the human immunodeficiency virus, show support for people living with it and commemorate those who have died from the infection, which can cause acquired immune deficiency syndrome, or AIDS.
NGOs use the day to disseminate information about the virus, discuss health issues, undertake fund raising, distribute red ribbons and hold programs to promote awareness on behalf of people with HIV/AIDS.
Politicians and governments undertake public campaigns extolling achievements in mitigating HIV/AIDS. After all, with the WHO estimating about 35 million people having died from HIV/AIDS since the first cases came to light in 1981 and with roughly the same number living with the infection, it does remain society’s most devastating pandemic.
India has a special place in all this. With 2.4 million Indians contributing significantly to this pandemic, it ranks second after South Africa for people living with HIV/AIDS.
In keeping with this year’s World AIDS Day theme of "Getting to Zero: Zero New Infections. Zero Deaths. Zero Discrimination," the recent UNAIDS Report-2013 on HIV has lauded India for reducing new infections by as much as 57 percent since 2001.
India was held up as an example in providing consistent support for large scale prevention. It now ranks second in terms of the total number of people receiving free lifesaving drugs, said the report.
Moreover, independent estimates like that from the Global Burden of Disease study corroborate Indian government findings that show the annual death rate from AIDS declining by up to 29 percent between 2007 and 2011.
But if this is cause for celebration we are missing the wood for the trees. The reason I say this is because any achievement in fighting against HIV is nullified by the widespread discrimination and stigma people with the virus have to live with.
India, with its low literacy rate and entrenched social hierarchy has a long way to go in combating stigma and discrimination toward people living with HIV/AIDS.
While it may be possible to reach zero new infections and zero deaths through clinical intervention, achieving zero discrimination is difficult because it deals with people's attitude which in India’s case is particularly non-quantifiable.
An anti-discrimination bill for people affected by HIV has been sitting in parliament since 2006 for want of this or that clarification.
Drafted through a joint government and civil society initiative, it states that no person may be discriminated against in travel, employment, education, healthcare, insurance or residence because of their HIV status. Obviously, this prohibition cannot work if it is not enacted by parliament.
As a volunteer at a community care center listening to those living with the virus, one hears of how stigma attached to HIV is worse than the disease itself.
One family threw out anything touched by the HIV-positive family member – personal clothes, bed sheets, blankets, utensils - before he was sent away to fend for himself. The family now lives in fear of being ostracized if others in the neighborhood might come to know of their family member’s status.
Worse, even doctors and nurses who should know better are not exempt from perpetrating discrimination, traumatically scarring HIV patients.
Tales of them breaching confidentiality, refusing to treat other family members once it is known that a person was infected, are common. HIV-positive people cannot just walk into a hospital, either private or public, and get treated for a common illness without causing some sense of panic and incurring exorbitant costs.
Others face rejection, verbal and physical abuse from neighbors and relatives, dismissal by employers and sometimes even denial of the last rites. HIV-positive children or those whose family members are known to have the virus are often ostracized and denied a place in school.
It is often only the extreme cases of discrimination that get the media’s attention, as when a pregnant woman was paraded at a government hospital with a sticker on her forehead saying HIV-positive, or when five children orphaned by AIDS were thrown out of their village and made to live in a graveyard.
“Living with the virus is not as bad as being defined by it. It takes superhuman effort to continue to live my life with dignity and not be made to feel limited because of how others view me,” said one person living with HIV/AIDS.
“If I were to tell someone I have cancer or TB, there is bound to be some degree of sympathy. When I say I have HIV, there is some degree of judgment,” said another.
To test if this were true I asked an educated person and a regular churchgoer if this were so. She told me that people with HIV deserved what they have because of the depraved lives they lead. My effort to ask how that could be so for babies and children living with the virus seemed to have no effect.
It is bad enough that people with HIV have to live a stressful life with a chronic manageable disease. Over and above that, they have to live a life of shame, fear and anxiety because of the social stigma attached, a doctor dealing exclusively with infected persons told me.
HIV/AIDS in India today is very much part of the general population and not just limited to drug users, gay people, commercial sex workers and their clients, as it was once thought, the doctor said, adding that if it were babies who were the first documented cases instead of those associated with having sex, there might have been no such stigma.
So while World AIDS Day is being celebrated, there really is not much cheer for those who actually live with HIV in India. Unless there is a serious attempt by individuals and society to collectively combat discrimination, any celebration is premature.
Ivan Fernandes is a journalist and commentator based in Hyderabad.
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