A few months ago, Asokan - an AIDS patient - was admitted to the Government Medical College in Thrissur, Kerala. The doctor operated on him without anaesthesia - "People like him need to suffer," he said. Asokan suffered until the Council of People Living with HIV/AIDS in Kerala (CPK+) - an organization of HIV+ persons in the state - took up the issue. The media joined in as well, and Asokan was finally provided with counseling and placed in a welfare home. The matter is currently in court.
In Kerala - a state that boasts of high development parameters (literacy, life expectancy, population growth rate etc) - Asokan's is not an isolated instance. Many HIV+ persons have been denied access to wells, or even decent burials; and in healthcare settings, the staff has refused to attend to HIV+ persons.
With approximately 70,000 HIV+ persons, Kerala is one of the low prevalence states on the HIV map of India. The first recorded instance of AIDS in the state was in 1987. Since then, the state has recorded some of the worst cases of discrimination against HIV+ persons.
Braving the stigma, CPK+ - a group of positive persons - came together to work towards ensuring HIV+ persons the right to live with dignity. Formed in January 1999, it now serves as the voice of HIV+ persons in the state.
"We had only 25 members in the beginning, and we constituted a seven-member committee to give direction to our activities," says P B Bindu, general secretary, CPK+. "Initially, we were clueless. Those who had not disclosed their HIV+ status had not met others infected with the virus, and hence felt emotionally isolated. We went out in search of such people - visited hospitals, collected details of those who tested HIV+, went to their homes, met with family members, shared our experiences - and urged them to come out from behind the veil," she recollects.
"We told them we have a right to live like everyone else and that we need medicines, food and clothing for our children when we are no more," Bindu explains. The group grew with time, and has 508 adult members today. "Although the organization does not admit children as members, we take care of their food and education wherever we can," says T K Sheeba, treasurer, CPK+. Today, they help nearly 90 children and the organization has district-level registered offices in Thiruvananthapuram and Kasargod. Offices in Palakkad, Pathanamthitta, Thrissur, Kottayam and Kozhikode are in the process of being set up.
Each CPK+ member has a story to tell - of how s/he contracted the virus and what she went through as a result of societal prejudices. The organization was instrumental in bringing to light many stories of deception and ostracisation towards HIV+ persons. Bindu herself was duped by a fake 'doctor' who claimed to have developed a medicine called Immunocure to completely cure HIV. CPK+ went to court against the quack and, in 2001, the High Court of Kerala issued a stay order on supplying the medicine. The 'doctor' has since wound up activities.
"People started contacting us after the 'AIDS medicine case'. We used this opportunity to stress the need for proper treatment and dissemination of correct information. We had bitter experiences with doctors, so sensitizing them became one of our initial concerns," says Bindu.
"After my husband died of AIDS, my neighbors refused to take water from our well. Fearing that mosquitoes would carry the virus, they started building fires in the backyard so that mosquitoes would not fly from my house to theirs. Also, many of us were turned away by doctors who thought that an accidental needle prick would infect them," says Sheeba.
Now, says Sheeba, when something like that happens there are people who inform CPK+. On its part, the organization sends members to the spot. These members talk the issue over with the local people and give out information on how HIV spreads.
In Pathanamthitta, for example, the organization sought justice for two children who were denied admission to school after their parents died of AIDS. CPK+ and its supporters then approached then Union health minister Sushma Swaraj to visit the spot. She embraced the children to demonstrate that HIV does not spread through casual contact.
For advocacy and networking, CPK+ receives funding from the Kerala State
AIDS Control Society (KSACS). In 2000, it began collaborating with the State Management Agency, the project support unit of KSACS, and started visiting the Partnership for Sexual Health (PSH) projects that are in progress in the state to prevent the spread of HIV infection. In 2004, with aid from UNDP, CPK+ has been able to set up branches in more areas, and spend more resources on care and support of HIV+ persons.
Office-bearers at CPK+ are well-equipped to handle their jobs. They receive training - in office management, on advocacy, and HIV/AIDS issues - from INP+, Chennai (the Indian Network of People Living with HIV/AIDS, the oldest organization of HIV+ persons in India). There are also regular training sessions on the latest research, medicines and events in HIV/AIDS, and efforts are now on to strengthen care and support for HIV-affected persons.
"As HIV has a latent period (before the infection progresses to AIDS) of many years, more cases are being exposed now. It is important to provide them physical assistance through anti-retroviral therapy (ART) and mental support through counseling," Bindu stresses. CPK+ has a trained counselor on its team to handle this.
CPK+ is also linking up with the state health department, social welfare department, women's organizations, politicians and the media to gain more support for their program. There are also income-generation programmes, like pickle and soap-making, for members.
"Even now, the major issue we face is stigma at every level of social interaction - in healthcare settings, job settings, and at the family level in the form of ostracisation and denial of love. Initially, hotels refused to give us space for meetings and training sessions, saying that their customers might not like it. We don't face that problem anymore. We are happy that we have been able to make a change, however small," Bindu sums up.