Lifting the Burden of HIV/AIDS

10/09/2012 21:33 BST | Updated 10/11/2012 10:12 GMT

At 13, the only dream Ganesh has, is to live.

His parents and brother - all died of AIDS. Of the family of four, he is now the only survivor and HIV positive.

Unlike cheery teenagers of his age, Ganesh from Pune, India, is consumed with thoughts of disease and death. "I wish I could enjoy life like everyone else," he says.

Orphaned and left homeless, Ganesh moved in with his grandmother and aunt who themselves are grappling with extreme poverty. "My paternal uncle passed away recently after a long illness. He was the sole breadwinner. We don't know what we will do now."

The tragic loss of his family, his own health worries and his current circumstances have taken a huge toll on Ganesh's body and mind. "I hope I will be able to continue my education if my health improves and if I feel strong," he says.

Ganesh got HIV from his mother and is among more than 100,000 children below the age of 15 who are living with HIV/AIDS in India. More than two-thirds of these children are not receiving any treatment. Studies suggest where diagnostics, care and treatment are not available 35% of infected children die in the first year of life, 50% by their second birthday, and 60% by the time they turn three.

Mother-to-child transmission is by far the most significant route of HIV infection among children which occurs during pregnancy, child birth and breastfeeding. Globally, almost 330 000 newborns become infected with HIV every year because they are born to mothers living with HIV. According to UNAIDS, without treatment, up to 40% of babies born to HIV positive mothers will start life infected.

Preventing this is one of the most significant investments in combating the disease. The elimination of mother-to-child transmission of HIV is possible and has been achieved in the developed world. Measures like HIV testing during pregnancy, access to antiretroviral medication for infected mothers and their own lifelong treatment have made this a reality.

The situation in the developing world, however, remains grim. In India, for example, despite advances in its prevention and treatment, HIV screening during pregnancy is still low which is reflected in the number of children living with HIV/AIDS. Women too often go untested for HIV often with serious consequences for themselves and their newborns.

Luckily for Ganesh, his HIV treatment has started. He has been enrolled for anti-retroviral treatment (ART) at a local government hospital and is receiving nutritional support and counselling by children's organisation Plan India. Ganesh is one among hundreds of children being reached by Plan which is running a dedicated home and community based care and support programme for children affected by AIDS in the states of Maharashtra and Andhra Pradesh since 2007. The programme, supported by the Global Fund to fight AIDS, Tuberculosis and Malaria, is aimed at addressing the factors that exacerbate the overall burden of HIV/AIDS on children besides reducing morbidity and mortality among them.

With HIV come social isolation, stigma and discrimination - all of which compound the psychological impact of the disease on sufferers. This is in addition to the direct burden of HIV itself in the form of treatment and nutritional needs which most poor patients are unable to afford often leading to faster progression of the disease. Many households lose their only breadwinners and children often have to drop out of schools and take up work to support their families' income.

"The combination of poverty and HIV weakens the capacity of families and communities to care for and support their children who are rendered most vulnerable," says Vinayakan Ellath, Plan's Senior Program Manager. "As an effective solution to tackle the burden of HIV/AIDS we are using a holistic approach that involves medical care, nutritional support, educational assistance, psychosocial help and economic empowerment."

Plan's efforts to create an enabling environment for people affected by HIV/AIDS in their homes and communities have met with encouraging results. "We have worked with affected families, communities and local government agencies and together provided an effective support system," says Ellath.

Following an HIV/AIDS awareness session, Nanda was accepted by her community.

Take the example of 35-year-old Nanda. Her husband and his second wife both died of AIDS and left Nanda with their six-year-old girl. Plan outreach workers referred both Nanda and her step-daughter to a local HIV screening centre where they tested positive. Nanda was shocked and distressed about their future. "I was convinced that both of us were going to die soon," she says.

They were immediately provided counselling and registered for treatment at the local hospital. "I was encouraged to join positive peoples' support group and soon realised that there were many others like me," she says.

However, after her status became known, Nanda faced opposition and discrimination from her community. "Everyone broke ties with me and wanted me out of my job as a cook at the local municipal school," she says. Already struggling to make ends meet Nanda was in real danger of losing her livelihood.

Plan's partner organisation had to convene a meeting of all villagers and conduct a counseling and awareness session on basic facts about HIV. "We dispelled many unfounded fears and doubts that had gained ground in the minds of people mostly due to lack of knowledge and information on HIV/AIDS," says Ms. Romee Hijam, Plan's HIV Project Coordinator.

Nanda managed to keep her job. She was subsequently given financial assistance by Plan to repair her house and open a shop for selling bangles which she has since developed into a successful small business. The attitude of her community towards her has also changed and many of them are now her regular customers. "I just can't imagine what I would have done or where I would have landed if this support was not available," says Nanda.

For a nation with an estimated 2.4 million people with HIV infection, India alone accounts for almost half the people living with HIV/AIDS in entire Asia. Even though new HIV infections have declined by more than half over the last decade due to robust healthcare measures, the country is a long way from providing universal access to HIV prevention, treatment, care and support.

A small but sure start by Plan is very much part of meeting this huge challenge. You only have to ask Ganesh and Nanda the difference it has made to their lives.

(Names of case studies have been changed.)