Treatment without literacy can be dangerous

Over five million people in India are HIV-positive, but there is precious little information on drug treatment for most of the population, who are not fluent in English and live on the margins of society.

A new handbook in Hindi, India's national language, seeks to bridge this glaring information divide by providing vital facts about antiretroviral (ARV) drugs, which help to prolong life, in a simple, non-technical manner.

"In our monthly support group meetings, we found that many people on ARVs did not even know the names of the medicines they were taking and were unaware of the side effects. Several people could identify drugs only by the colour of the packaging and many others did not know that taking ARVs is a life-long commitment. We want people to make an informed choice and the ARV information booklet in Hindi, the first of its kind, is a major step in that direction," said Mike Tonsing, Vice-President of the Delhi Network of People Living with HIV and AIDS (DNP+).

The handbook, prepared by DNP+, has been already distributed in antiretroviral therapy (ART) clinics in New Delhi, the capital, and HIV-positive support groups from Hindi-speaking states, such as Bihar and Uttar Pradesh, are providing copies to their members.

Fifty percent of those who come to DNP+ support group meetings are either unlettered housewives or daily wage-earners who have not been to school, said Tonsing. The next step is an audiocassette targeting illiterate people in the HIV-positive community.

The initiative by DNP+ is part of a wider campaign supported by International Treatment Preparedness Coalition (ITPC), a community-based funding mechanism driven by people living with HIV and their advocates.

"It is not enough to raise issues at meetings and conferences. You have to do everything possible to make sure that each and every HIV-positive person has a chance to live a long, healthy and productive life. For that, you need not only treatment advocacy but also treatment literacy," said Loon Gangte, ITPC's South Asia Regional Coordinator.

In 2004 the Indian government launched an ambitious programme to provide free ARVs to selected groups in states with the highest HIV prevalence. Two and half years down the line, AIDS activists across the country argue that without greater treatment literacy, adherence and advocacy, the ARV rollout faces a bleak future.

There are no reliable figures for the numbers of people on ART, but according World Health Organization estimates, of the 770,000 in need of ARVs at the end of 2004, only about 12,000 were enrolled in the government's programme by August 2005.

Many people living with HIV/AIDS (PLWHA) have access to treatment outside the national programme. For example, Indian Railways and the security forces have their own ART programmes for their employees. A strategy document for the National AIDS Control Programme estimates that a total of nearly 40,000 PLWHA might be receiving ART from the public and private sectors.

The large numbers of people not on treatment are all the more glaring in India, one of the world's leading manufacturers of generic ARV drugs.

"There has to be a movement led by PLWHA to advocate for ARVs. India does have the resources - it is a matter of melding political will with peoples' movements, but many of the PLWHA are poor and disempowered, and do not speak up," said Gangte.

"They also need to be made treatment literate," he added. "Without being treatment literate, you cannot be a treatment advocate. And without this, even those on ARVs can develop drug resistance because they do not understand the importance of adhering to a prescription."

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