‘We need work, nutrition, proper treatment and child doses’

Meena, a 30-year-old woman from Bangalore, works with Milana Family Support Network, an ActionAid initiative for people living with HIV and AIDS.

At Milana, she counsels people living with the virus and gives them the confidence to lead a healthy life. They discuss good nutrition and hygiene. Raising awareness on HIV and AIDS in schools and colleges is also part of her work. Milana workers tell parents of HIV positive children what they can do at home to offset small diseases like fever, diarrhoea and vomiting.

Milana also distributes nutritious food to poor persons with HIV.

Meena has been HIV positive for 13 years. She has four children. Meena is not on anti-retroviral (ARV) medicines but her eldest daughter, in her teens, relies on them.

Meena’s husband, a truck driver, was in the last debilitating stage of AIDS when she was six months pregnant with their youngest son. She got tested and discovered she was also positive. Her husband died in 2001.

Both Meena and her husband faced severe discrimination, even from their immediate family. At home, they were not allowed to use the drinking water. Her husband was sent out to live on a raised platform on their farm.

Doctors from private clinics where they were tested told the whole family about their HIV status without consulting Meena or her husband. They also sent her husband away without any medicines, saying he would die within six months.

“For as long as my husband was still alive, we lived on rice given by villagers. After his death, my husband’s brother sent me and my children to live in Bangalore in a hostel meant for HIV+ people. I lived there for two years, after which I got to know about Milana,” says Meena.

Meena’s work also involves educating those families that practise discrimination at home. “Families fear a lot. We give them information about how it is spread, how it can be tackled,” says Meena.

Not suitable for children

Her colleague’s 10-year-old son is facing medicine related problems. He is on the third line of ARV treatment having become resistant to the two previous formulations.

Former US president Bill Clinton launched a high profile initiative with the Indian government to provide paediatric formulas of AIDS drugs to 100,000 HIV positive children in 2007 of children in India, but vast majority of HIV positive children who need them still don’t have access to ARV pill or syrup in the dosage they require.

An adult capsule, which has granules, has to be halved, and the halved portion in turn needs to be halved to get the child dose (one-fourth of the original capsule), leaving parents with a nagging doubt as to whether they have given their child too little or too much today. The whole process jeopardises hygiene and sometimes destroys half the medicine, as granules tend to spill onto the floor.

ARV side effects pose more problems – swelling of stomach and legs, nausea, vertigo. Some people can handle these side effects, those who can’t may die.

No money for treatment

If a mother is positive with four kids and little money, she has no means to seek medical treatment for any opportunistic infection explains Meena.

“Banks refuse to give loans to HIV+ persons as they say we are going to die soon. From the government, we don’t just want ARV but also nutritious food and work and to raise awareness in villages where few women have even heard of AIDS.”

“Apart from the usual skill-enhancing courses like tailoring and making incense sticks or papads, the government needs to offer more profitable expertise to village women and get them work or facilitate self-employment through easy loans for a dairy business,” she adds.

The HIV virus infects vital cells in the human immune system such as helper T cells, especially CD4 cells, so testing CD4 count tells how far HIV has advanced. Government offers CD4 count testing and medicines for side infections only to those who are already on anti-retro viral treatment. Side infections include tuberculosis, fever, cryptococcal meningitis and even brain tumour.

“In Bangalore, HIV positive people are asked to go to National Institute of Mental Health and Neuro Sciences for CD4 testing. But the institute says the machine meant to test CD4 count is not working at their hospital,” says Meena.

I get my CD4 testing done at a private clinic for Rs 500, every three to six months, especially when side infections increase,” she explains. But for many, private treatment is not an option.

While campaigning with HIV positive people around the world for access to treatment, ActionAid is helping to connect people living with the virus in India to anti-retro viral drug programmes run by government and non-governmental organisations.

Why discriminate?

People think long and hard before choosing disclosing their status – they have to think about their jobs and marriage of loved ones – and usually choose to keep it secret. For many the fear of discrimination prevents them taking a test, let alone getting the treatment and care they require explains Meena.

“Why should there be any discrimination? Why should people be thrown out of their homes? Positive or not, human beings are human beings. Treat them like human beings,” says Meena.

Stepping Stones

Changing in attitudes and behaviour is one of the biggest challenges but one that ActionAid and partners are tackling head on.

An important tool used in AIDS prevention work with communities is Stepping Stones This innovative approach helps people to discuss taboo issues or vexed questions within their peer groups and make collective proposals to each other for change. For example men’s groups appealing to other men in their community have helped reduce alcohol abuse and wife-beating.