“We are not the problem but part of the solution,” said K.K. Abraham emphatically. Mr. Abraham, who is the President of the Indian Network for People Living with HIV/AIDS (INP+), Chennai, was explaining the role of non-governmental organisations (NGO) such as his, which are comprised of members who are infected with HIV.
Mr. Abraham has a reason to say so. INP+ is one of the many NGOs that are fighting for the cause of those infected with the virus, including stigma and discrimination. The National AIDS Control Organisation has indeed, though belatedly, realised the pivotal role that such organisations play in containing the disease, educating and counselling, and fighting the twin issues — stigma and discrimination — that haunt those infected.
INP+, that was started in 1997 in Chennai with just 12 members, is now a 15,000 strong organisation with presence in 18 States and 70 districts. It was his personal experience and the way people living with HIV were portrayed that motivated him and others to come together. “We had to come out into the open to fight our cause,” he noted.
One of the biggest changes that the network has been able to bring about is the way society sees people infected with HIV. “People look at us and see for themselves how productive we are and this has brought about a change (in the way we are treated),” Mr. Abraham said. “Initially we faced some problems with people in the neighbourhood. But our landlady was very supportive. She still supports us.”
In the same breath, he also points out the society’s fear and ignorance about the infection and those living with it. “Many think people who are infected will not be healthy and those who are healthy are not infected,” he said.
This ignorance has proved to be one of the banes affecting the society. People visiting sex workers unwittingly deduce infection status based on the sex worker’s health and many a time refuse to use a condom if the sex worker appears healthy.
The most important message he spreads around is the compelling need for early diagnosis. “If you are diagnosed early, you can lead a healthy and long life even without medication. Antiretroviral (ART) is the last resort,” he stressed. It has been known that good food and exercise delay the progression of the infection to AIDS state.
“I came out and got tested early. Hence I am healthy,” he reiterated to bring out the importance of early diagnosis.
But with stigma and discrimination being rampant, what are chances of people going in for early diagnosis? “By knowing one’s status early, one can lead a healthy life and avoid discrimination,” he pointed out. He was diagnosed in 1993.
Discrimination could start in one’s immediate family and society, at workplace and in the healthcare system. According to Abraham, there is a positive change happening in families and healthcare systems, especially in the metros.
“There is discrimination (in the healthcare system),” echoed Asha Ramaiah, National Advocacy Officer of INP+ based in Bangalore. “But there are some changes happening (for good). When surgery or even injection is involved then government hospitals create problems.” Private hospitals do treat HIV infected people but at double or even treble the cost.
Mrs. Ramaiah recalled one of the many instances when INP+ had fought for the cause of students who were discriminated and denied admission to schools. “They (school authorities) were ignorant of the disease. But once made aware, children were admitted,” she said. This is possible only in government run schools.
Discrimination at work place is real. “Only a few (private) companies take people who are HIV positive at the time of employment,” said Mrs. Ramaiah. “Most of the private companies do mandatory testing for HIV. Those found to be infected are denied jobs.” The reasons cited are different though.
Not much is known of such discrimination as those people (who are denied jobs) are unwilling to seek legal remedy fearing wide publicity of their positive status. But the recent judgment passed by the Karnataka Administrative Tribunal is a shot in the arm for those willing to seek legal help. The Tribunal has directed the Karnataka State Government to provide R. Ramesh Rao of Shimoga, who was denied a police constable’s job owing to his HIV positive status in 1999, that he be given the job with retrospective effect. And it went further to correct the course by directing the State Government to ensure that HIV infected people are not denied government jobs due to their positive status.
Stigma stems from the way society links the person’s positive status with his morality. “In South (India), HIV is linked to the person’s sexual behaviour. Stigma is maximum if infection is through sexual route,” she said. “It is least if it is through drug abuse. So people say they got infected through drug abuse.”
INP+ provides education, emotional support, counselling and a platform to provide peer support for those infected with HIV. It is for these reasons that many come forward and disclose their status. According to Mrs. Ramaiah, about 40,000 people (who are not members of INP+) come to INP+ for these reasons.
This allows INP+ to be in touch with reality. “We need to be consulted on any issue — prevention, education, counselling — if any programme has to be successful,” Mr. Abraham underlined. Mrs. Ramaiah concurred, saying “We can have icons and the President of India talking about AIDS. Only people affected with HIV can convey the message best.” Is there a Magic Johnson in India?
INP+ in Chennai can be contacted at the following telephone numbers: (044) 2432 9580, 2432 9581 and 2432 2461.