AIDS patients still fight stigma

Ahead of World AIDS Day on December 1, Metrolife talks to NGOs about the status of patient care

Many organisations in Bengaluru are working in the area of HIV-AIDS care and counselling. Metrolife spoke to some about their problems, challenges and successes.

Accept Society

Raju Mathew, founder-chairman of Accept Society, Doddagubbi, says his centre provides assistance to HIV-infected individuals who also suffer from TB and cancer.

“People come here at different stages,” he says. The space includes a 35-bed building for grown-up patients, and a 25-bed one for children.

“We have children from 12 to 18 staying with us and they are sent to school and college,” he says.

Accept conducts awareness programmes in schools and colleges and takes out an annual rally on December 1.

“Earlier, we had support from Karnataka State AIDS Prevention Society and National AIDS Control Programme, but the policies have changed,” he says.

HIV+ children’s lives are filled with challenges, including discrimination in education, he explains.

Desire Society

Desire Society, JP Nagar

Desire Society Foundation has been working with AIDS-affected children.

Subhash E M, vice president, talks about an institutional care home (ICH) in JP Nagar 8th Phase the foundation has been running since 2008.

“The home houses about 30 children between five and 18 and they are taken care of and provided with education opportunities,” he says.

Nutritional supplementary camps are hosted by the foundation. “Affected children are registered with district hospitals and they are taken for treatment and medicine collection every month. We work with about 100 children in Mandya and Ramanagara,” he says.

The NGO also hosts a three-day summer camp for the 100 affected children it works with. “They stay at our care home, get school supplies and then go home,” he says.

Challenges are aplenty when working with the HIV+ community.

“Most private schools do not admit them; they are scared parents of other children will object,” he says.

The foundation works from a rented place and hopes to get a permanent place soon. “Our rent increases every year and we do not have enough funds,” he says.

Asha Foundation

Asha Foundation runs a helpline for patients (23543333/ 23542222) that works from 9 am to 5 pm, Monday to Friday.

Children with volunteers wearing masks they
made at a camp hosted by Asha Foundation.

Dr Glory Alexander, founder, says the foundation receives five to 15 calls a day and about 1,700-1,800 calls a year. Most calls are from people who are at risk and want to know what to do and how to test for AIDS.

“Some call for information and others to know about care and help for the infected,” she says.

The foundation provides counselling on many aspects, including how to remain HIV- and prevent transmission of AIDS from mother to child.

It holds awareness programmes among Metro construction employees, contract labourers and mill workers, and provides medical, nutritional and educational support for HIV+ affected children and their siblings.

Every year, Asha Foundation hosts Camp Rainbow for children between 10 and 16.

“These are children who have grown up with stigma and discrimination. We teach them life skills, team-building skills, health and hygiene,” she says. Children from Mandya, Mysuru, Tumkur, and Kolar are included in the camp.

Prevention of transmission of HIV from mother to child is an area of focus.

Glory says the programme has been effective. “Without treatment, there is a 45 per cent chance of transmission of HIV to a newborn child but this can be brought down to less than 5 per cent,” she explains.

The foundation provides training for teachers at three-day workshops. Each teacher is given resource manual to teach students in the age group of 13 to 16.

The manual consists of lessons about friendships virtual and real, infatuation and love, marriage, and sexual intimacy, and medical topics like HIV/AIDS, STDs, alcohol and drug abuse and smoking.

Freedom Foundation

Dr Ashok Rau, executive trustee and CEO, says the foundation works with orphaned children affected with HIV.

“We have a residential care home located near Rampura Cross which can accommodate up to 30 children. Every year we take new admissions accordingly,” he says.

When such a child is referred to the organisation, the staff check if there is any family support available. “If we find it exists, we extend support in other ways like nutrition, medicines, and education,” he says.

If the child has no form of support, residential care is provided.

“We admit them at the beginning of the academic year so they can be sent to school. The children continue staying with us for 10-15 years. We have children from 6 to 19 years,” he says.

The foundation vouches for its many success stories: children have grown up and found jobs in big companies.

The organisation supports about 150 children and 80 families. Rau says the funding is inadequate. “Stigma and discrimination continue to be a problem,” he adds.