Lessons from India
According to this 123-page document from Panos India, access to antiretroviral drugs (ARVs) has become the subject of a major debate in India. As a result of campaigns by civil society activists and groups of HIV-positive people, as well as commitments at national and international levels, today more people in India have access to ARVs than two years ago. Yet, as stated in this report, a collection of viewpoints by journalists of 14 Indian states indicates that a great majority with HIV/AIDS, particularly the most marginalised, still cannot obtain these drugs.
This report, part of a world-wide study conducted by the Panos Global AIDS Programme, contains a collection of articles from 14 states and union territories in India on issues around access to ARVs. As India enters its third phase of a national AIDS control programme, the report finds that a key lesson learned from the second phase of the programme is that marginalised groups like out-of-school youth, married adolescents, and rural populations do not get attention and, thus, have low levels of the following: HIV/AIDS awareness, condom usage, and behaviour changes.". The third phase intends to increase communication outreach to these groups. The current efforts include a decentralised focus and emphasis on greater participation and involvement of HIV-positive people and other vulnerable groups in prevention and control efforts.
This document recommends that AIDS prevention and control programming expand beyond the Ministry of Health to ministries like Social Justice and Empowerment, as well as Women and Child Development. It also recommends restructuring guidelines on implementing intervention programmes to make it less difficult for programme managers to meet the varying needs of vulnerable groups.
The report reviews the history of world-wide attention to the distribution of ARTs and the roll-out of an initiative in India in 2003, which, as stated here, despite being a producer of generic HIV and AIDS drugs, treats 20 percent of its population in need of them.
In this collection of journalistic articles from 14 states and union territories, journalists offer insights into what it means to get ART from the government programme and outside the government’s scheme. They identify the obstacles that need to be overcome to ensure universal access. They include the voices of HIV-positive people, vulnerable groups, health professionals, public health experts, government officials, industry representatives and others involved with the programme.
Some of the current communication related elements of the effort to broaden ART treatments are:
- Opening of paediatric treatment centres with free testing services.
- Public-private partnerships, including corporate sponsorship, prioritising marginalised populations.
- Centres with free antiretroviral drug therapy (ART)for children under 18 months.
- Support for positive people's groups. Positive people's groups across the country are involved in patient referrals and follow-up and provide consultation on expanding access to vulnerable groups. Stigma still prevents the increase of these support networks, but in Andhra Pradesh, the appointment of a consultant to increase their involvement has resulted in the formation of more support groups.
- Adequate facilities at centres. In addition to increasing facilities and equipment, where queues are long, the recommendation is that “the government should ensure adequate facilities such as drinking water, proper seating arrangements, sanitary facilities and shelters/waiting rooms at the ART centres.”
- Uniting counselling with treatment. The recommendation is that ART centres and voluntary counselling and testing services need to be offered in each centre, not in split facilities.
- Increased counselling. As stated here, "[c]ounselling remains the weakest component in the ART programme." Counsellors are too few in number, but their services essential if drugs are to be taken according to the correct dosages and side effects are to be understood, as well as the possibility of drug resistance. Counselling needs private space, sufficient time and counsellor training, and a general increase in staffing to ensure quality of service.
- Public knowledge on drug stocks. The report suggests that information about drug stocks and possible shortages be in the public domain.
- Strategies for treatment consistency for migrants. Since migration is a factor in obtaining and adhering to treatment, a pilot project is the
‘Health Smart Card’ for monitoring patients on ART, whereby patients can get treatment anywhere by showing the card.
The document cites a need for a stronger ART availability communication campaign including simpler, understandable materials in local languages on drug availability, programme enrolment procedures, drugs and possible side effects, and the importance of treatment adherence. Channels of communication, including television and newspapers, need to expand to reach marginalised groups. More generalised needs are nutrition programmes, along with social supports (including health, literacy, and freedom from indebtedness, among others) for those in extreme economic poverty.
Email from Annushree Mishra to The Communication Initiative on July 3 2007.