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.pdfCHAPTER 26
RESPONSE TO THE HIV EPIDEMIC IN INDIA
Abstract
The first phase of NACP (NACP-I) was launched in September 1992 in all states and union territories as a 100 per cent centrally sponsored project. NACP-I was completed in March 1999. Innovative grassroots programmes have been launched at the community level, but due to India’s size and diversity, these community-based efforts need to be increased to face the challenge posed by the HIV epidemic. Networks of HIVinfected persons were established in the 1990s. These groups are striving to break the stigma and discrimination within Indian society. Some private sector companies have initiated HIV-related workplace programmes and Indian pharmaceutical companies have reduced the price of ARV drugs, adopted dual pricing strategies, and launched drug donation schemes.
Key Words
Activism, Advocacy, Community response, Corporate response, Government’s response
26.1 – GOVERNMENT’S RESPONSE
NACP was launched in 1987. When the gravity of the epidemic became evident, NACO was established in 1992, to manage and coordinate the programme (MOHFW, 1999; NACO, Training Manual for Doctors). A Strategic Plan was prepared for the 5-year period 1992–1997, which received support from World Bank, WHO, and other international agencies. NACP phase I (NACP-I) was launched in September 1992 in all states and union territories as a 100 per cent centrally sponsored project, which was completed in March 1999. The objectives of NACP-I were to prevent HIV transmission, to decrease mortality and morbidity associated with HIV infection, and to monitor the socio-economic impact of HIV epidemic (MOHFW, 1999). The initial years of the programme focussed on reinforcing programme management capacities, targeted IEC activities, and surveillance in the epicentres of the HIV epidemic. The actual preventive activities that gained momentum only in 1992 were education and awareness programmes, ensuring blood safety, hospital infection control, condom promotion, and strengthening of clinical services for controlling STIs and HIV. NACP-I has utilised the entire credit of US$84 million provided by the World Bank and its supervisory mission monitored the project (MOHFW, 1999).
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The contribution of the Government of India for the second phase of NACP (NACP-II) is US$38.8 million, while the International Development Association (IDA) has provided an interest-free credit of US$191 million to cover the total cost, estimated at US$229.8 million (about Rs. 11,550 million). In addition, US Agency for International Development (USAID) has provided Rs. 1,660 million for the 7-year (1999–2006) AVERT project in Maharashtra. DFID has also offered financial assistance of Rs. 1,540 million for a 5-year (1999–2004) project in the states of Andhra Pradesh, Gujarat, Kerala, and Orissa (MOHFW, 1999).
26.2 – NATIONAL LEVEL PROGRAMME MANAGEMENT
For managing NACP at the national level, the following organisations were established:
National AIDS Committee: This was constituted in 1986 under the Chairmanship of Union Minister for Health and Family Welfare in order to bring together various ministries, NGOs, and private institutions for coordinated implementation of the programme. This committee is the apex body thdt provides policy directions, monitors programme performance, and forms multisectorial collaborations (MOHFW, 1999).
National AIDS Control Board: Constituted under the Chairmanship of Secretary (Health), Ministry of Health and Family Welfare, Government of India, the Board has been entrusted with functions, which were being performed by Technical Advisory Committee under the chairmanship of the Director General of Health Services. It is not necessary to approach the Ministry of Finance for funding planned activities since it is represented on the Board. The Board meets at least four times a year or when required by Chairman of the Board or Project Director of NACO. The functions of the Board include:
(a) reviewing policies, approving annual operational plan budget, and reallocating funds between programme components; (b) exercising financial and administrative powers beyond the power of Additional Secretary and Project Director (NACO); (c) expediting sanctions, approving procurement and awarding contracts to private agencies; and (d) forming managerial teams and appointing senior programme staff (MOHFW, 1999).
National AIDS Control Organisation (NACO): This was established by the Government of India in 1992 to function as an executive body in the Ministry of Health and Family Welfare, New Delhi. An Additional Secretary as its Project Director heads this executive body. Its Secretariat consists of an Additional Project Director, subject specialists, technical, and administrative staff. The WHO has provided a technical assistance of US$1.5 million to NACO (MOHFW, 1999). NACO aims to:
(a)Create an expanded response to the HIV epidemic and monitor the epidemic in all States by effective surveillance
(b)Provide technical support to State AIDS Control Societies
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(c)Ensure public awareness about the HIV epidemic and its prevention and target interventions at high-risk groups
(d)Reduce vulnerability of people to HIV by ensuring blood safety and promoting condoms for safer sex
(e)Promote community and family-based care for HIV-infected persons in a conducive environment free of stigma and discrimination and to develop support services for HIV-infected individuals
(f)Alleviate adverse socio-economic impact due to the HIV epidemic
Twelve technical groups were constituted for priority areas of the programme such as epidemiology and HIV testing, targeted interventions, legal and ethical issues, HIV prevention in the workplace, and blood safety and transfusion services. The technical groups act as a technical resource and are mainly responsible for providing operational know-how and to recommend action plans for improving the quality of programme design (MOHFW, 1999).
26.3 – STATE-LEVEL PROGRAMME MANAGEMENT
AIDS control societies were first created in Tamil Nadu and Pondicherry on experimental basis. Due to successful functioning of these societies, the Union Government advised other states/union territories to constitute a registered society, exclusively devoted to implementation of NACP, under the chairmanship of the Secretary (Health). These broad-based societies have members representing various ministries NGOs.
26.4 – FIRST PHASE OF NACP
26.4.1 – Components of NACP-I
Programme Management: Establishing managerial organisations to strengthen programme management at national and State levels, as mentioned above.
IEC and Social Mobilisation: The objectives of IEC programmes are to improve knowledge of HIV and STIs by mobilising all sections of society, promote desirable practices and behaviour (avoiding multiple sexual partners, use of condom, sterilisation of needles and syringes, and voluntary blood donation), and create a conducive environment to care for and support HIV-infected persons. NACP envisages a multisector approach, involving diverse ministries. NGOs have been provided financial support to take up awareness and targeted intervention programmes for vulnerable groups such as commercial sex workers, truckers, intravenous drug users, street children, and migrant labourers. A National Counselling Training Programme has been launched to train grassroots-level counsellors. National AIDS helpline has been set up with a toll-free telephone number “1097” so that the caller can avail of counselling services in an atmosphere that maintains privacy and confidentiality of the caller. School AIDS Education Programme has been launched on a pilot basis in 15 states to provide lifestyle
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education and HIV-related information to high school students (MOHFW, 1999; NACO Training Manual for Doctors).
Blood Safety: As per the directives of the Supreme Court of India, national and state-level blood transfusion councils have been constituted as registered societies to supervise all aspects of blood safety programme. Zonal blood testing centres provide linkage with other blood banks and test blood samples from blood banks in the zone and send the HIV test reports on the same day. Blood component separation facilities have been set up to reduce the wastage of whole blood transfusion. Licensing of all blood banks has been made mandatory. Unlicensed blood banks are not permitted to provide blood transfusion services. Currently, as per national blood safety policy, it is mandatory to test every unit of blood for infections such as HIV-1 and HIV-2, hepatitis B/C, malaria, and syphilis. Drugs and Cosmetics Rules have been made more stringent regarding procedures for collecting, processing, storing, and distributing blood and blood products. Blood donation by professional blood donors has been completely banned in India since 1 January 1998. National HIV testing policy containing key issues such as HIV testing procedures, mandatory screening of all blood units, confidentiality has been framed (MOHFW, 1999; NACO Training Manual for Doctors).
Condom Promotion: Unprotected and multipartner sexual activity is a major cause of HIV transmission in India. Disadvantages of free distribution of condoms are difficulty in ensuring supplies and doubts about their actual use. NGOs and voluntary organisations are involved in condom promotion. The target group for condom promotion for STI prevention differs from that for family planning. Schedule R of the Drugs and Cosmetic Rules has been modified in 1995 and NACO has introduced quality control parameters as specified by the WHO. Condoms are available at a subsidised rate from many types of outlets, including the recently introduced condom-vending machines. Social marketing increases acceptability and provides easy accessibility. Condom promotion programme also involves informing potential clients that condoms prevent deposition of semen and urethral discharge, exposure to penile lesions, and unwanted pregnancies; and demonstrating the correct method of use. Potential clients are also informed about the common causes of failure of condoms: damage to condoms due to exposure to heat, moisture, sunlight, and prolonged storage, failure to expel air while wearing condoms (causes tearing), and incorrect use, particularly under influence of alcohol and/or drugs (NACO Training Manual for Doctors).
Surveillance: Voluntary testing centres have been established in all government medical colleges. Regular nationwide sentinel surveillance monitor the trends in HIV infection in different risk groups in the population. MIS has been established for monitoring trends in HIV infection and progress of NACP (MOHFW, 1999).
Control of Sexually Transmitted Infections: Early diagnosis and treatment of STIs is one of the main strategies in prevention and control of HIV infection
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because the virus is transmitted more easily in the presence of other STIs and similar high-risk behaviours lead to transmission of both STI and HIV (NACO, Training Manual for Doctors).
Targeted Interventions: Projects for targeted interventions include those for sex workers (ASHA project of Mumbai Municipal Corporation and APAC Project in Tamil Nadu), projects for IDUs in Manipur, Nagaland, and Assam, and for truck drivers in Rajasthan (MOHFW, 1999; NACO, Training Manual for Doctors). NGOs have been encouraged to undertake targeted intervention programmes for high-risk groups such as sex workers, migrant labourers, transport workers, and out-of-school youth. Bilateral agencies such as the USAID have supported targeted interventions (MOHFW, 1999).
26.4.2 – Outcome of NACP-I
Adult HIV prevalence rate was maintained at below 1 per cent. Capacity building in managerial and technical aspects has been successful nationwide in government organisations and NGOs. There has been an expansion in capacity to treat STIs and opportunistic infections. A network of blood surveillance centres has been established along with sentinel sites to monitor the epidemic. The estimated blood safety is nearly 100 per cent, as compared to only 30 per cent in 1992. Condom use has increased from less than 10 per cent to a range of 50–90 per cent in targeted groups of sex workers and the volume of condoms distributed through social marketing has increased by 50 per cent. Knowledge of prevention of HIV has reached a range of 54–78 per cent in urban areas. Laws concerning humane treatment of HIV-infected persons have been enacted. Groups and networks of HIV-infected persons have emerged as forces for advocacy and activism (World Bank, 2002; Motihar & Sharma, 2003).
26.4.3 – Limitations of NACP-I
As a consequence of centralised planning and implementation, regional differences were not considered. In the early years of NACP-I, State AIDS Cells were handicapped by administrative bottlenecks and procedural delays, which hampered the pace of programme implementation. Hence these Cells were subsequently converted into broad-based State AIDS Control Societies. Initially, sentinel surveillance was not conducted in all the states/union territories resulting in inadequate information regarding the progress of the HIV epidemic. In most states, targeted interventions were not implemented for groups practising high-risk behaviour (MOHFW, 1999). Due to the high school-dropout rates in India, out-of-school youth need targeted intervention programmes tailored to their needs (Motihar & Sharma, 2003). Procurement of stores and equip-ment was slow due to delays in formulation of specifications for equipment and - inadequate understanding of the purchase procedures of the World Bank (MOHFW, 1999).
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26.4.4 – Lessons Learnt from NACP-I
Control of HIV epidemic was conceived as a public health programme. But, spread of the epidemic is driven primarily by individual behaviour, and has human rights, legal and socio-economic implications. Hence, the epidemic is to be treated as a national calamity that impinges on multiple sectors and its control would call for coordination between different arms of the government, voluntary organisations, and the community. Activities need to be decentralised at planning and implementation levels. Surveillance data is important for tracking prevalence of HIV infection in general population and in specific high-risk groups. Best practices for targeted interventions and care of HIV-infected persons have been documented for action. A comprehensive system for monitoring, evaluation, and quantitative measurement of performance would be integrated in NACP-II. Technical resource groups have been established to strengthen technical support and capacity for research. High priority has been given to mobilising the community, private sector, and other stakeholders from health and other sectors. NACO has assigned responsibility of timely purchase of stores and equipment to a professional procurement agency (MOHFW, 1999).
26.5 – SECOND PHASE OF NACP
NACP-II aims to reduce the spread of HIV infection in India and to strengthen the country’s capacity to respond to HIV epidemic on a long-term basis.
Targeted Interventions: Participatory methods are to be used to identify highrisk groups such as sex workers, IDUs, migrant workers, MSM, and patients attending STI clinics. Services provided for these groups will include counselling, client-based IEC, treatment, and condoms.
Community-Based Interventions: Locally appropriate IEC and awareness campaigns, VCT, strengthening infrastructure for ensuring blood safety, and preventive interventions in hospitals and occupational environment.
Low-Cost Community-Based Care for HIV-Infected Persons: Improving the quality and cost-effectiveness of treatment of opportunistic infections such as tuberculosis and establishing new sources of support in partnership with NGOs.
Strengthening Capacity of Institutions: NACP-II would assist in improving the technical, managerial, and financial sustainability of programmes at various levels by enhancing managerial capacity for planning and implementation; training in areas of management and provision of interventions; enhancing quality, quantity, and timeliness of surveillance for HIV, STIs, and behavioural patterns; augmenting capacity for ongoing monitoring and evaluation; and aiding high-quality, peer-reviewed operational research agencies.
Intersectoral Collaboration: Strengthening HIV-related programmes in the public, private, and voluntary sectors and supporting social mobilisation and sharing of information among Central Government ministries, private, and voluntary sectors.
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26.5.1 – Targets for NACP-II
Blood Safety: Reducing blood-borne transmission of HIV to less than 1 per cent of the total transmission, introducing mandatory screening test for HCV, establishing 10 new modern blood banks in uncovered areas, upgrading 20 major blood banks, establishing 80 new district-level blood banks in uncovered districts, setting up 40 additional blood component separation units, and increasing share of voluntary blood donation to at least 60 per cent of total blood donation, and to increase the total blood collection in India to 5–5.5 million units by the end of the project.
Training: To train at least 600 NGOs in conducting targeted intervention programmes among high-risk groups and to achieve condom use of not less than 90 per cent, and to promote control of STIs through NGOs.
Awareness: To attain awareness level of not less than 90 per cent among youth and persons in reproductive age group with priority given to folk arts and street theatre in rural areas, to cover all schools students studying in classes IX and X through school education programmes, to cover all universities through University talk AIDS programme, and to reduce prevalence of STIs and RTIs in the general population.
Voluntary Testing: Every district in the country is to have at least one voluntary testing facility.
Self-Help Groups: Provision of financial support to organisations of HIVinfected persons.
26.5.2 – Lacunae in NACP-II
Almost 60 per cent of NACP-II funds have been allocated for prevention and control. Paradoxically, preventive activities for general population have been allocated more funds as compared to that for high-risk groups. Only 14 per cent of the funds are earmarked for care and support of HIV-infected persons (Motihar & Sharma, 2003). There is no national information grid that collects HIV test reports from private laboratories. Hence, prevalence estimates are exclusively based on sentinel surveillance (Solomon & Ganesh, 2002).
26.6 – NATIONAL HIV POLICY
The thrust areas include reduction of MTCT and future load of HIV-infected children in the community, counselling and HIV testing of pregnant women, and confidentially perform tests to establish HIV status, and provision of ARV therapy to already identified infected women. The prevention of transmission of HIV/AIDS is the main stay of the national response to the epidemic. However, care and support for those infected and affected by HIV/AIDS are inseparable elements of an effective national response and must be integrated in the
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comprehensive approach to deal with the epidemic (NACO, Training Manual for Doctors).
26.6.1 – Salient Features of HIV Policy
●HIV status of a person should not come in the way of his or her right to education and employment.
●Mobilisation of resources from government and private sources to build a continuum of care and support services, comprising clinical management, nursing care, counselling, and psychosocial support, through home-based care.
●CME to sensitise health care providers to prevent discrimination of HIVinfected persons, and to train health personnel in diagnosis, treatment and fol- low-up of HIV-related illnesses.
●Since there is no public health rationale for mandatory HIV testing, the policy promotes voluntary testing with preand post-test counselling.
●As per decision of the Supreme Court of India, partner notification has been included as a policy. All HIV-infected individuals should be encouraged to disclose their HIV status to their spouse/sexual partners. However, the attending physician should disclose the HIV status to spouse/sexual partners, only after counselling (NACO, Training Manual for Doctors).
26.7 – COMMUNITY RESPONSE
India’s tradition of socio-political activism has yielded some innovative grassroots programmes. The Sonagachi project in Kolkata (one of the world’s largest programmes for sex workers) has empowered sex workers, who refuse unprotected sex with clients. Given India’s size and diversity, these community-based efforts should be scaled up to meet the challenge posed by the HIV epidemic. Networks of HIV-infected persons that emerged in the 1990s are striving to break the stigma and discrimination within Indian society (Motihar & Sharma, 2003). Affected and Infected Women Association, Churachandpur (AIWAC) operates in Churachandpur district of Manipur. CPK+ is a network for people living with HIV in the state of Kerala. Manipur Network of Positive People (MNP+) provides care and support to HIV-infected persons in the state of Manipur. Telugu Network of People living with HIV/AIDS (TNP+), registered in Vijayawada (Andhra Pradesh) is a support group for HIV-infected persons and their families (UNDP, 2006). Other patient support groups include Indian Network of People Living with HIV (INP+), Association of People Living with AIDS (APWA), and Positive Women’s Network (PWN) (Shreedhar, 2002).
26.8 – PRIVATE SECTOR’S RESPONSE
A mid-2005 study of the World Economic Forum revealed that only 11 per cent of Indian corporates had a written policy to combat discrimination based on HIV status, 14 per cent had an active policy to protect workers, with 29 per cent
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providing access to voluntary testing facilities (UNDP, 2006). According to a Reuters Report, many business organisations in India unsure about how much money they should spend on HIV/AIDS prevention and education programmes or how investments in HIV prevention programmes will save them money in the future. Some companies may have effective HIV prevention programmes for their core staff that do not trickle down to the informal workforce (usually migrant workers hired on a contractual basis). As per estimates of the International Labour Organization (ILO), the cost of treating one HIV-positive employee in India with ARV drugs is about US$431 per year, which does not include the costs of absenteeism and treating opportunistic infections. The ILO estimates that later intervention is 3.5–7.5 times as costly as prevention (Kaiser Network, 2006).
The Confederation of Indian Industries (CII) and leading corporates such as the Tata Group, Mahindra & Mahindra, and Bajaj have initiated HIV-related workplace programmes. In Septermber 2005, CoRE-BCSD India, a forum of 52 companies aiming to achieve sustainable development, identified three possible areas where Indian corporates could initiate or scale up HIV-related activities. These areas included
(a)HIV prevention programmes at the workplace
(b)Upgrading clinical facilities and training clinical personnel
(c)Supporting or scaling up HIV prevention efforts among high-risk or vulnerable communities such as transport and migrant workers, with whom companies interact regularly
In March 2006, CII initiated a project involving business process outsourcing companies (UNDP, 2006).
Indian pharmaceutical companies have started producing cheaper ARV drugs (Motihar & Sharma, 2003). The Indian pharmaceutical industry has responded by reducing prices of ARV drugs, adopting dual pricing strategy, and launching drug donation schemes. Since tuberculosis is a major opportunistic infection in HIV-infected persons, the Bill and Melinda Gates Foundation pledged US$ 89 million for research on tuberculosis vaccine. In 2003, the pharmaceutical company AstraZeneca has established a Tuberculosis Research Centre in Bangalore (Bebaruah, 2004).
26.9 – CONCLUSION
HIV prevention and education efforts in India are complicated by social stigma and presence of numerous languages and dialects. India has multiple diverse HIV epidemics. HIV prevalence of over 1 per cent has been reported among pregnant women in Andhra Pradesh, Karnataka, Maharashtra, and Tamil Nadu. In the north-eastern states of Manipur, Nagaland, and Mizoram, all of which lie adjacent to the drug trafficking “Golden Triangle”, the HIV epidemic is driven by injecting drug use. Though there is no national policy for harm reduction, some states such as Manipur, have adopted their own harm reduction policies (Fredriksson-Bass & Kanabus, 2006).
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India is one of the biggest producers of cheap generic ARV drugs that are sold to many countries all over the world. Ironically, millions of Indians in need of ARV treatment are not receiving it because free-of-charge treatment is available only in selected government institutions in certain cities. It is alleged that as the epidemic continues to spread in India, persons in positions of power are confused about the “right strategy” to be adopted and that some still advocate promotion of “abstinence and faith”. The Indian Government has been criticised for clinging to the idea that the epidemic is limited to high-risk groups and that targeting them is the best strategy to contain the epidemic. Harassment of AIDS outreach workers and peer educators by law enforcement agencies was reported in 2002. Some government officials have supported mandatory premarital testing for HIV and have proposed related legislation (Fredriksson-Bass & Kanabus, 2006).
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Bebaruah S., 2004, The new weapons. India Today. 31 May, pp 60–62.
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Motihar R. and Sharma M.V., 2003, Strengthening India’s response to HIV/AIDS. www.kit.nl/ils/exchange/
National AIDS Control Organisation (NACO). Training manual for doctors. New Delhi: Government of India.
Shreedhar J., 2002, India’s HIV. Arlington, VA: Family Health International. www.fhi.org/NR/ Shared/enFHI/
Solomon S. and Ganesh A.K., 2002, HIV in India. In: Topics in HIV medicine. International AIDS Society – USA 10(3): 19–24.
World Bank, 2002, Project update. www.worldbank.org/aids