Reflections on the HIV Program in India

Anita Rego Global Education Magazine

Anita Rego

Independent Consultant Social Development

e-mail: anitarego@yahoo.com

 

Abstract: The Indian HIV program has put in place a public health program that has gone beyond the traditional health care and has moved towards developing an enabling environment from a multi-dimensional perspective.  This article attempts to capture these experiences and the lessons it has provided during the process of implementing the program. The program has been able to make an impact due to the multi-pronged approach which included clinical services along with partnership with communities, policy changes and program management system. The learnings can be useful for addressing health problems what have been difficult to deal due to social circumstances that communities face such as being on the margins, hidden and difficulty to penetrate.

Key words: HIV/AIDS program, India, Enabling environment

Introduction

It has crossed thirty years since the official global reports of HIV and two and a half decades in the Country.  Approximately 172,000 people died of AIDS related causes in 2009 in India (NACO, No year). Rate of new HIV infections has fallen by more than 25% between 2001 and 2009 in 33 countries  (Harvard School of Public Health, December 1–2, 2011 ) and by 50% in India (NACO, No year) providing evidence that prevention has been effective. Expanding access to treatment has contributed to a 19% decline in deaths among people living with HIV between 2004 and 2009 (Harvard School of Public Health, December 1–2, 2011 ).

From the early days of the epidemic, it was clear that HIV and AIDS was much more than addressing a disease.  Social conditions had profound effect on risks and vulnerability and hence responding to HIV and AIDS would require to responding the underlying issues such as poverty, illiteracy, hunger, and marginalisation.  Health and development of the affected communities was closely related to social attitudes, legal and justice frameworks.  It required a multi-dimensional and multi-sectoral response where countries played an active role.  India has stood up to these in an arena where poverty and marginalisation is high.

This paper will provide for reflections from the Indian sub-continent; this will be useful for professionals worldwide to replicate and learn from in their fight against the virus or in other health problems.  It is story of hope and commitment by the State and communities who joined hands to halt of the spread.

Indian response to HIV/AIDS

It is estimated that 2.27 million individuals are infected with HIV in the country.  The epidemic is concentrated in high-risk populations, such as sex workers, men who have sex with men, transgender, injecting drug users, and clients of sex workers. Unprotected sex (87.1% heterosexual and 1.5% homosexual) is the major route of HIV transmission.  This is followed by transmission from Parent to Child (5.4%) and use of infected blood and blood products (1.1%). Injecting Drug Use accounts for 1.7% of HIV infections nationally, this is predominant seen in the North Eastern states. What is a cause of concern is that the infection is spreading form high prevalence to low prevalence areas (NACO, No year).

The Indian government put in place the National AIDS committee in 1987 within a year after the first HIV case was identified. This was evolved as the National AIDS Control program in the year 1992.  The response of the government has evolved over the years through the National AIDS Control program, NACP.

NACP-1 (1992-1999), launched in 1992, was later extended from 1997 to 1999. NACO set on itself to develop a national public health programme in HIV/AIDS prevention and control and set up State AIDS Control Societies as the instrument to support the initiative. In the second cycle NACP II, operational from 1999 to 2007, attempted to reduce the spread of HIV infection primarily through strengthening testing services and behaviour change, a shift from the predominant mass awareness program for prevention to a targeted intervention approach focussed on risk populations.   In the third cycle, NACP-III (2007-2012) the program sought to halt and reverse the epidemic by providing an integrated package of services for prevention, care, support and treatment.  Saturating the coverage of high risk groups through targeted intervention and expanding prevention messages to general population to prevent new infection, the program also put in place systems for providing care, support and treatment to people living with HIV/AIDS.  The Country is currently in the fourth five year cycle of programming for HIV (NACP IV).  The draft strategy for the National AIDS Control Program (NACP) phase-IV for 12th Five Year Plan that has been presented to the Planning Commission aims to curb the cases of new infections by 80% in the country.

Testing, treatment, care and support

The National program set up testing and counselling centres across the country at the peripheral and referral institutions of the government. Testing is carried free of cost and mechanisms have been put in place to ensure that the report could be received on the same day.  Counsellors provide pre and post test counselling services.  The introduction and upscale of ART centres and link centres across the country within a public system model since 2004 ensures free access to ART services thus making services equitable and resulted in decline in the number of deaths. The corridor for services approach promoted easy access.   The national program has rolled out the ART program across the country.  As some individuals developed resistant to first line ART drugs, through consistent advocacy by civil society organisations and the PLHIV networks, second line ARTs centres were introduced.

The PMTCT (prevention of parent to child transmission) rates currently at 5.4% (UNICEF, 2010) are now set to change with the recent introduction of the WHO Triple ARV prophylaxis.  This revised guideline promotes single, universal regimen both to treat HIV infected pregnant women and to prevent MTCT of HIV termed Option B+ on a pilot basis in some high prevalence states.

Community care centres were established.     The involvement of peer counsellors and the establishment of positive networks reduced stigma.  The peer outreach workers and counsellors across the country that mobilised continued treatment among positive communities.  Systematised tracking mechanisms ensured that those who were loss to follow up or had dropped out were counselled to come back to the folds of treatment.

Partnering with high risk groups for prevention

The common package of services under the targeted intervention includes behaviour change communication; access to condoms, STI services and HIV treatment, care and support; provision of enabling environment through drop in centres and community mobilisation.    With a focus on prioritisation and saturating coverage of high risk group, the NACP III channelized prevention resources on interventions for female sex workers and men who have sex and for the bridge and vulnerable groups largely through mainstreaming strategy.

Female sex workers are estimated to be 830,000 – 1,250,000 (NACO, No year) in the country.  Female sex work is deeply rooted in inequalities that are evidenced as illiteracy, poverty, disadvantaged situation and familial responsibilities.  Sex workers face violence within the family as well as from the sex trade. Collectivisation of sex workers into local level networks led to sex workers forming district, state and national level collations advocating for their rights leading to the recent judgement for extending State responsibility towards promoting social equity for sex workers. Focused approach to reach various categories such as bar girls and younger girls is not yet robust.  Greater involvement of sex workers in policy making bodies has been weak if not absent.  Strategy to reach to regular partners and clients has been through the sex worker rather than direct, making condom use and reduction of violence a kneejerk response. Lubricants are not made available thus undermining the existence of anal sex among sex workers.

It is estimated that 2,350,000 MSM live in the country and of them 235,000 are male sex workers (NACO, No year).  Infection among men who have sex with men has not shown a downward trend.  The coverage of men who have sex with men was dismal during the NACP II days.   In NACP III, concerted efforts were made which resulted in a reach of 2,74,000 through 155 exclusive and 200 composite.  This is a seven-fold increase from NACP-II and is expected to increase through the MSM CBOs and efforts on community systems strengthening. Surveillance sites for MSM have also been increased. Lubricants have been incorporated into the national program and the country has recently launched the male version of female condom for MSM. The national strategy for MSM was recently revisited to incorporate mental health, family support, violence reduction, extension services to partners and reach to communities over the internet for those do not prefer to seek services at the DICs.

Men who have sex with men face stigma in the form of homophobia.  In 2009, the Delhi High Court decriminalized consensual sex between adult men acknowledging that Section 377 of the Indian Penal Code obstructed effective HIV prevention (Godwin, 2010). Involvement of the LGBTI organisation and networks are seen in the formulation of national policy and guidelines related to HIV.

Initially, the transgender were clubbed with the MSM intervention, but with concerted advocacy by the community and an appreciation of the specific problems they face, the national program is formalising a program incorporating specific needs through standalone or composite MTH interventions.  In the State of Tamil Nadu, the State Government has established the Tamil Nadu Aravanigal (Transgender) Welfare Board (TGWB) to address the social protection needs of hijra by linking them tosocial welfare programmes with the aim of reducing vulnerability to HIV and AIDS (Godwin, 2010). Advocacy is on to develop similar models of social protection programmes for hijra in the other parts of the Country.  It is noteworthy to mention that the efforts have resulted in the inclusion of the third gender as an option in the voter card, recognition of transgender as a category requiring special attention in the national plan document and opening of free legal aid services and expanding welfare services.

It is estimated that 96,000 -189,000 male; and 10,000 – 33,000 female Intravenous drug users (IDUs) (NACO, No year) are living in the country. Intravenous drug use was thought to be prevalent only in the North East, however, during the NACP III phase, it was realised that smaller numbers were found in the other peripheral parts of the country.  Special attention is being paid to female IDUs to deal with multiple issues such as sex work and violence. Composite and exclusive interventions through needle exchange were set up in select pockets across the country for regular and irregular users.  Oral substitution programs using buprenorphine was established in the North East. What needs attention is that intravenous drug users have several needs and the program has not been able to provide for a continuum of care that is required.

Migrant population and transport workers form an important bridge population for the transmission of HIV. The 2.3 million long distance truckers in India have an estimated HIV prevalence of 3-7% and 1-7% percent have at least one STI (NACO, No year). The transport worker intervention moved from an exclusive NGO led intervention to involvement of transport sector through the National Networking of Truckers TIs (NNTI) for managing the interventions. The migrant intervention has also seen changes in the program strategy from a predominantly halt point strategy to a corridors approach which incorporates source – transit -destination points as part of interventions. Generating an enabling environment through the support of labour department, industry and social welfare required coordination, advocacy and efforts.  Reaching to families of truckers and migrant workers has not got adequate attention.

Enhancing service uptake by PLHIV

The national program mobilised PLHIV into district level networks and national network of people living with HIV and AIDS.  The networks formed an important lifeline for several PLHIV and the advocacy helped bring about recognition of the rights of PLHIVs and greater involvement of people living with AIDS.   The program supported them to establish drop in centres across the country (201 as of 2011) and they provided psychosocial support and linkages to services. In addition women living with HIV and AIDS established specific drop in centres for women in six states (as of 2011). The national program established   community care centres to provide for care and support services. The peer counsellors supported the national program to follow on left out and drop out, bringing several PLHIV into the folds of continued treatment.

When PLHIV and their families faced stigma and discrimination, the networks independently or in collaboration with other stakeholders worked towards reducing rights violations, some of them being reintegrating affected children back to schools or reinstating people back to work place or providing legal access for accessing their property rights. PLHIVs have been also been helped to access social welfare and social protection measures; such efforts have greatly improved their lives.

Gender

The impact of HIV and AIDS goes beyond health; there are several social and economic consequences. In India, women account for around 2 million of the approximately 5.2 million estimated cases of people living with HIV in 2005, constituting 39 percent of all HIV infections (Sundar & Sundar, 2006). Among ever-married women aged 15–49, only 55 per cent of had heard about AIDS.  More than 90 percent of women acquired HIV infection from their husbands or their sexual partners; not due to their own sexual behaviour, but because they are partners of men who belong to the high risk group (HRG). The wider implication of this situation is that in almost six percent of cases in 2008, the route of transmission of infection was from mother to child.

Anal transmission routes may be practiced by women, however receives limited attention.  Interventions for women are primarily through the parent to child transmission (PPTCT) program.  Antenatal woman learn on their status during routine pregnancy related testing.  Women who are not in the reproductive cycle may not seek reproductive health services and hence are greatly disadvantaged.    Gender inequality and unequal power relations between and among women and men continue to be major drivers of HIV transmission. These are not only associated with the spread of HIV but also experience as a consequence to testing positive. The women who at risk and are affected face targeted violence. Women experience multiple risks such as access to information and services which are often located in their disempowered status.  Women hold lower status which is reflected in early marriage, trafficking, sex-work, migration, lack of education, gender discrimination and malnutrition.  The study carried out by NCEAR, UNDP and NACO established that women face greater consequences of HIV/AIDS at the household level.

Rural women are at risk primarily as their husbands migrate to cities for work that increases their risk.  The link worker program was an initiative that primarily reached out to women in rural area and served as is the main source of information but this program is downsized to reach only in specific pockets.   On the other hand, members of the Panchayat Raj Institutions, women of self help groups, auxiliary nurse midwives, Registered Medical Practioners and Private practioners are brought into the folds of HIV program and encouraged to facilitate testing and access to medical and other welfare services.  An integrated approach to integrate SRH and HIV may help in expanding services to women, which may improve access to services and reduce the stigma and discrimination attached to HIV.

Addressing the Needs of the Vulnerable and Specific Children and adolescents

Children and adolescent have not received the needed attention except for the Adolescence Education Programme (AEP); the program aims at provide correct information to youth in the age group of 15-29 years. The red ribbon clubs and the Integrated Child Development Services Kishori Balika program reach to the youth.

It is estimated that there were 160,000 children and adolescents living with HIV in Asia in 2009. In 2007, the Indian government rolled out the Policy framework for children and AIDS (NACO; UNICEF;MWCD, 2007)  for desirable actions within a life cycle approach.  Some states have developed specific plans for linkages with social sector programmes for accessing social support for infected through outreach and transportation subsidy to facilitate ART uptake and follow up and for accessing nutritional, educational, recreational and skill development support.

Our work in building synergy for children affected by HIV and AIDS in the district of Koppal involved linking parents of children who are tested at the Integrated testing and counselling centre and children on paediatric ART to the District child protection services and thereby providing linkages for a comprehensive child care program that includes scholarship, education services and residential care if necessary.  The program in a pilot stage has potential to be scaled across the country.

Mainstreaming

The involvement and coordination from the various sections of society was crucial for a sustained response to the underlying issues of HIV and AIDS. Government has actively involved the industries.  Nineteen government social protection schemes have been amended and 41 directives by the State Council on AIDS have enabled social protection of the marginalized groups.  Several private sector industries and industrial confederation in the country have initiated HIV interventions for employees. Programs have been conducted for various categories of the uniformed services and for training institutes for the police. HIV program is positioned to be integrated with the national health program as part of NACP IV and efforts are on to strengthen it.

Creation of an enabling environment

Creation of an enabling environment is considered as an important element in containing the epidemic in the National AIDS Program.  Involvement of communities through collectives of sex workers, men who have sex with men and people living with HIV and AIDS brought the affected communities who are socio-politically on the margins to the centre stage of epidemic control.  PLHIV and core communities have been involved in training programmes, advocacy workshops and outreach activities as resource persons/ positive speakers.  The drop in centres made functional through the CBOs and CSO have provided psychosocial support, counselling and referral services and linkages to welfare schemes to core populations and PLHIV.

Positioning HIV programs as rights based where the affected communities have a right to live a life of dignity and without stigma and discrimination created an environment that supported communities to seek help with confidence.  When communities did face issues, the District and State AIDS Committees facilitated the process of redressal of grievances and getting justice.  Legal aid was provided by civil society organisation working on legal issues which led to reforms.  Insurance program for HIV has been piloted in some states.

Several national programs such as Right to Education Act, the National Rural Employment Guarantee Scheme and the Anna Antodaya Scheme had tweaked their criteria to make it HIV sensitive.  Linkages were made with shelter homes and care homes under Ministry of Women and Child Development or the Ministry of Social Justice & Empowerment to open them to women and children living with HIV.  Free legal aid has been expanded in some states for legal suits related to property and insurance claims faced by people living with HIV and AIDS.  Decriminalisation of same sex behaviour was made possible by the repeal of Section 377.

What made success a possibility 

The Indian story of implementation is globally acknowledged as a story of success; there are several lessons to be learnt especially when the country is battling with large base of people living with the virus and rampant poverty.

• Responding to HIV within a national public health programme

The National AIDS Control program establishes the program base forming Societies within the Government structure and later district AIDS Prevention Control units as mechanisms to work with the district administration. Program planning from NACP III has followed a bottom up approach which ensures local needs and prioritisation and fund allocation flow in tandem.  The program was incrementally decentralised through the institutional structures.  Visionary leadership at the national, state and district level have played a major role in ensuring relevance, effectiveness and efficiency in the program.

• Resourcing for program delivery

Financing the response largely depended on the global assistance that came through the World Bank, DFID and BMGF to name a few.  The global recession resulting in advocacy for greater engagement by the Government to take responsibility through domestic expenditure for furthering gain made in containing the epidemic.  The Government of India has on principal agreed to fund the NACP IV; the commitment is yet to be formalised.

• Focus on saturated coverage

From the NACP III, the focus was on saturating coverage.  Districts were mapped to classify them based on the epidemic presentation.  Gaps in programs were identified and necessary prioritisation was set to ensure coverage.  Peer based approaches and community managed interventions were put in place. Micro-tools for easy tracking and sharpening interventions brought communities to the folds of essential actions for prevention and care.

• Community as partners and community led intervention

The partnership with core communities and PLHA networks created an enabling environment which brought hidden communities to the centre stage and helped in addressing issues of stigma, discrimination, legal and ethical concerns. Communities became advocates for prevention and services.  People Living with HIV and core communities represented their concerns and actively engaged in decision making forums and committees.

• Partnership with international, national and local organisations

Organisations were encouraged to work in partnership with the Government and institutional mechanisms to facilitate multi-partner engagement was made possible through technical resource groups, consultative forums, intervention partnerships and research support.
The three ones strategy aligned strategy, program and information management across partners.

 Evidence based programming

Placing the HIV services within the system and periodic research studies such as behavioural sentinel studies and health sentinel studies helped the government to generate needed information to inform actions.  These researches have been carried out by independent organisations and widely disseminated to bring in alternate opinions and actions.

• Galvanizing political will and momentum

Strong advocacy was put in place to galvanise support from the political arena.  Media was engaged to bring out the right messages and focus on pertinent areas.  This led to parliamentarians getting engaged in HIV discussions and provides support for synergetic actions within the plan process.   Both media and political leaders were taken on cross visits and forums were created to encourage for exchanges and learning.  Media helped in message penetration and building facilitative environment.

• Good management practices

Programs were followed across the country using a standard operating procedures and systems that brought about uniformity across programs.  The nationwide Strategic Information Management System was synchronised and development partners shared data with the national program.  Quality in human resources was assured through setting in minimum qualifications, appraisal systems and selection processes.  Supply chain mechanisms were put in place so that stock out was minimised.

Way forward

The India program is here to stay; it needs to continue to be dynamic and vibrant to improve access to services through intensifying and consolidating quality programs through innovative and long-lasting mechanism.  From the perspective of AIDS-specific funding, these shifts have been made possible through the synergising with the health program.  The health program would have to learn a lot from the HIV program to continue momentum.  It means moving away from the current political sphere where medical fraternity dominance to inviting sociological and anthropological perspectives to inform programs.  This signals an opportunity to critically evaluate lessons learnt from the three decades of response and re-visit the fundamental ideological position and approaches that addresses the structural determinant of vulnerability.

People who are living with HIV and AIDS have higher rates of non communicable diseases as well as opportunistic infections.  With the ARTs, people are living longer and hence likely to develop both HIV and non HIV related health conditions.  More and more people are getting resistant to drugs that treat infections like tuberculosis.  Despite the sufficient information and evidence flowing in, the response has been lukewarm and insufficient.

The dynamics of the spread of infection is fluid and responds to the changes in the larger environment.  Patterns of core group behaviour is constantly evolving and changing.  Government programs are mostly static and often complex to have cycles that gear to the local contexts.  A delayed response can make infection spread.  The momentum built as of now will need to be maintained to ensure that the spread of the epidemic is reversed.  New challenges such as the penetration of drug abuse across the country, home based sex work, and so on need to be deliberated and planned processes need to be considered within the program.

Conclusion

HIV program has been provided solutions on how public health program reaching to the margins of society should be evolved and built.  Often within a health program, there is very little space provided for responding to the underlying structural issues that are barriers to access to services.  The HIV program in India has made some concrete steps to move infection control beyond the traditional approaches.  This required leadership from the national program which is inclusive to newer ideas emerging from experiences, research and from community needs.  Translating such actions in a program base and provide directions and standard for practice to make it operational helps in taking the step forward.   Tracking programs to see the process as well as the results and building and responding to feedback loops ensured quality in program.  The Indian program for HIV has been successful and is working towards making change possible.  The momentum needs to be sustained to ensure that we truly are able to reverse the epidemic.

References

Godwin, J. (2010). http://asia-pacific.undp.org/practices/hivaids/documents/874_UNDP_ExecutiveSummary.pdf. Retrieved March 20, 2013, from www.asia-pacific.undp.org.

Harvard School of Public Health. (December 1–2, 2011 ). Proceeding of the symposium AIDS @ 30. . Engaging to End the Epidemic. Harvard: Harvard School of Public Health .

NACO. (No year). http://www.nacoonline.org/upload/IEC%20Division/Parliamentarian%20Forum%204-5%20july%202011/NACO%20Monograp%20NACP.pdf. Retrieved March 20, 2013, from www.nacoonline.org.

NACO. (No year). http://www.nacoonline.org/upload/IEC%20Division/Parliamentarian%20Forum%204-5%20july%202011/NACO%20Monograp%20NACP.pdf. Retrieved March 20, 2013, from www.nacoonline.org.

NACO; UNICEF;MWCD. (2007, July 31). http://ww.nacoonline.org/…/Policy_Framework_for_Children_with_AIDS. Retrieved March 20, 2013, from www.nacoonline.org.

Sundar, B. K., & Sundar, R. (2006). http://www.undp.org/content/dam/india/docs/gender.pdf. Retrieved March 20, 2013, from www.undp.org.

UNICEF. (2010). http://www.unicef.org/aids/files/IndiaFactsheet_PMTCTFactsheet_2010.pdf. Retrieved March 20, 2013, from www.unicef.org.

This article was published on April7th: World Health Day in Global Education Magazine.

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