Pearl Terry

June 4, 2015
HONORS 392B: Final Paper
Attacking Upstream: Community Mobilization and
Empowerment on the Path to HIV/AIDS Eradication in India
I would like to begin on a personal note, to at first lay the
groundwork for the following discussion. In attempting to achieve a
holistic understanding of the HIV/AIDS epidemic in India, I found myself
more than once falling into the rabbit hole of snowball research; the
most challenging demand of this assignment, in my experience, was
the need to narrow down my focus of study. India, with a rich and
controversial political and cultural history, extreme variability in
language, social conditions, ethnicities and structural development, is
hardly a region one can contextualize with sweeping statistics or public
health intervention. Because of this, evidence based initiatives and
survey methods tend to focus on singular cities, districts, or states.
While MDGs in India are often considered on track or achieved, when
looking at regional data it is clear to see recent HIV infection trends as
decreasing in high prevalence states, while increasing in previously low
prevalence areas (UNAIDS 2015; UNAIDS 2014a; The 90-90-90 Solution
to AIDS Pandemic n.d.). Studies dissecting the difference between HIV
awareness and understanding between rural and urban populations,
high-risk groups, and regional health infrastructure all emphasize the
extreme variability in HIV/AIDs epidemic challenges. Though nationally
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centralized initiatives to achieve universal access to ARTs and

organized care is critical, the NACP-IV public health strategy, finalized
in 2012, is finally beginning to address the need for locally specific
attention and upstream prevention tactics.
In conducting my research I became familiar with an
extraordinary amount of literature, spanning critiques of Indias
international position as a primary generic pharmaceutical producer, to
the movement for the legalization of gay rights in India. Indiasnational
HIV/AIDSpreventionserviceprogramsarenumerous,diverse,andhighlyvariable
betweenstates,andhavebeenlargelyattributedtodifferencesinpublichealth
infrastructuredevelopmentinandbetweenregions.Nationallyspearheadedprevention
campaignshaveincludedtargetinghighriskgroupsandbridgepopulations(FemaleSex
Workers(FSW),MenwhohaveSexwithMen(MSM),Transgender,InjectingDrug
Users(IDU),truckersandmigrants),needlesyringeexchangeprograms,prevention
interventionsformigrantpopulationatsource,transitanddestinations,preventionand
controlofSTIsviareproductivetrackinfections,bloodsafetyandscreeninginitiatives,
HIVcounseling,preventionofparenttochildtransmissionservices,condompromotion,
massmediacampaignsonbehaviorchange,socialmobilizationandyoutheducation,and
workplacescreeningandeducationinitiativesthelistgoeson,provingincreasingly
complex and exhausting. For this reason, I found it necessary to select
one of the most prominent campaign strategies in Indian prevention
policy; absence of other initiatives and legislation should not be

interpreted as determinations of insignificant, but rather as a personal

decision given the necessarily limited scope of this paper.

Millennium Development Goals and Modifications

In September of 2000 the Millennium Declaration was adopted

by the UN General Assembly, setting new standards for the right to
development in the form of measurable benchmarks; targets were set
to be met by the year 2015. The Millennium Declaration was organized
as a series of 8 Millennium Development Goals (MDG): (1) the
eradication of extreme poverty and hunger, (2) universal primary
education, (3) promoting gender equality and empowerment, (4)
reducing child mortality, (5) improving maternal health, (6) combating
HIV/AIDS, Malaria and TB, (7) promoting enduring environmental
sustainability, and (8) developing global partnerships for development.
From these goals, specific targets and associated indicators of
measure were established, for Goal (6), two major targets for HIV/AIDS
were set, with corresponding indicators of measure:

Target 6.A: Have halted by 2015 and begun to reverse the spread of
HIV/AIDS

6.1 HIV prevalence among population aged 15-24 years

6.2 Condom use at last high-risk sex
6.3 Proportion of population aged 15-24 years with comprehensive
correct knowledge of HIV/AIDS
6.4 Ratio of school attendance of orphans to school attendance of nonorphans aged 10-14 years
Target 6.B: Achieve, by 2010, universal access to treatment for
HIV/AIDS for all those who need it
6.5 Proportion of population with advanced HIV infection with access to
antiretroviral drugs (UN Statistics Division 2008).

Though India accepted the MDG framework modeled after this

international standard, some revisions were made to indicators based
on national prevalence. Revisions made to Goal (6) pertain to condom
use; while the UNDG indicator 6.2 considers condom use rate from all
contraception use irrespective of age, gender, or marital status, India
has revised this indicator to measure only currently married women 1549 years (Ministry of Statistics and Programme Implementation 2014).
Publishedinits2014MDGCountryreport,Targets6.1and6.2,whichareofthe
trendreversaltype,wereclaimedbythecountrytobefullyrealized,asthetrendinHIV
prevalencehasbeenmeasuredatadeclineoverall(MinistryofStatisticsandProgramme
Implementation2014).Condomuserates(condomuseasapercentofoverall
contraceptiveuseamongcurrentlymarriedwomen,1549years)were5.2%.The

CondomPromotionImpactSurvey2010estimatedthenationalrateofcondomuseat
lasthighrisksexat74%however,defininghighrisksexasnonregularsexpartnersages
1524(MinistryofStatisticsandProgrammeImplementation2014).Accordingto2006
BehavioralSurveillanceSurveys,thenationalestimateforproportionofpopulationaged
1524yearswithcomprehensiveknowledgeofHIV/AIDSwas32.9%,anincreaseof
~10%from2001reporting;morerecentnationaldatahasnotyetbeenpublished
(MinistryofStatisticsandProgrammeImplementation2014)

Data Ambiguity

In discussing the epidemiological trends of HIV/AIDS prevalence

and prevention prior to, and surpassing the 2015 Millennium Goal
benchmark, one major point of contention must be addressed.
Between 2006 and 2007, changes in WHO sampling methods caused a
significant decrease in the number of people estimated to be HIV
positive in India (Steinbrook 2007a; Steinbrook 2008). Until 2006,
Indias AIDS Control Organization (NACO) data was based solely on
data collected by government sentinel surveillance sites (Pramit Mitra,
Vibhuti Hate, and Teresita Schaffer 2007). These sites measured,
almost exclusively, surveys of pregnant women receiving prenatal care
from government clinics in high prevalence districts, skewing data.

These numbers did not prove accurate as national predictors of

population HIV rates when compared to National Family Health survey
data, which measured 109,041 randomly selected households
containing 515,507 persons, of whom 102,946 were tested for HIV
(Steinbrook 2008). In 2007, a joint effort by UNAIDS, the WHO, and the
Indian Health Ministry resulted in a revised study, which utilized this
additional survey sources in its estimation methodologies. The
inclusion of data from the National Family Health Survey conducted
between 2004-2005, as well as additional data gathered from high-risk
population studies produced an estimation of ~2.5-3.1 million, nearly
one half of the 2006 estimation of 5.7 million (Steinbrook 2008). In
several analyses published by various sectors of the Indian national
government, as well as private NGOs, this major reduction in people
living with HIV/AIDS (PLHA) is marked as a major HIV prevention
success. I will not use a direct comparison of 2000 and 2015 data as a
measure of national progress towards HIV/AIDS MDG here, as I find the
two estimation methodologies are incompatible. Following 2006,
National Family Health Survey methods of estimation were employed
to back calculate HIV prevalence to 2002; analysis suggests that given
the revised numbers the epidemic in India has remained relativity
stable over time, with a slight decline in 2006 (Venkatesh and
Kumarasamy 2008).

Moving beyond HIV/AIDS specific survey results however, some

general ambiguities regarding Indian baseline health statistics must
too be referenced. The Registrar General of India conducted a
household survey to gauge mortality patterns in the Million Death
Study; while more than 3/4 of deaths in India occur at home, half of
these lack a certified cause. Only 1/3 of deaths in India were reported,
according to data collected prior to 2006 (Birn et al. 2009:223). This
study tracked 14 million people within India from 1998-2014, though
final analysis for 2006-2014 has not yet become available (Center for
Global Health Research 2015). While all data used in this discussion
has been verified by a multitude of sources, most prominently UNAIDS,
a certain degree of skepticism must always be maintained. In a country
with nearly 800 million uninsured, and health services limited at best,
HIV/AIDS estimations hold a variable degree of uncertainty.

Key Effected Groups

Beginning with the first recorded case in 1986, the HIV/AIDS epidemic
remained largely confined to the FSW community until the mid 1990s;
as HIV crossed over to the general population, women became at
increasing high risk, with unprotected male to female marital sex being
one of the primary modes of transmission (Hahn and Inhorn 2009). The

accessibility of the FSW community has made its members the

primary target of high-risk group behavioral interventions; FSW
communities in 2013 still have prevalence rates up to thirty times
greater than the general population (Beattie et al. 2014). Unprotect
paid sex in considered by NACO to be the major HIV/AIDS transmission
route, particularly in Indias southern states. Mathematical modeling,
published by the WHO in 2002, showed that a focused, behavioral
intervention among FSW could eliminate the epidemic in India, where
as conventional programs for STI treatment, ART programs, and ART
programs for FSW only could not produce these effects (Blanchard et
al. 2002).
MSM, while certainly comprising a significant number of at risk
men and boys, are very difficult to target in India, where homosexually
is currently illegal. In 2009 MSM sex conduct was decriminalized by the
Delhi High Court, in 2013 however, Indias Supreme Court recriminalized same sex conduct, again reinforcing major roadblocks for
MSM HIV/AIDS prevention interventions (HIV & AIDS in India 2013).
Though local and international human rights groups are working to
change this, conducting studies requiring men to openly identify as
MSM is neither productive nor ethical. Although I did find data on MSM
prevalence rates, none of these sources provided sound methodologies
to support their analysis, and were for this reason not included in my
recommendations.

Intravenous drug users are only now emerging as a potential

high-risk group, cited as the main vector for increasing prevalence
rates in previously low priority northern states. In addition, truckers as
well as migrants have been identified as bridge groups, given their
close interaction with FSW in particular (Ministry of Statistics and
Programme Implementation 2014).

A Brief History of Public Health and HIV/AIDS in India

Following independence in 1947, India immediately began to

construct a soviet-style health system, investing heavily in
infrastructure development, facility construction and health personnel
training (Birn et al. 2009:613). In 1986 the first AIDS diagnosis was
made to a FSW in Chennai; rapidly following this initial diagnosis,
several hundred cases within the FSW community came to light.
Screening centers were immediately set up in selected high-risk areas,
and from 1987-1992 the NACO (National AIDS Control Organization),
NACP (National AIDS Control Program) and associated government
HIV/AIDS control organizations were established. HIV/AIDS blood
screening and health education campaigns were initiated for the first
time. This reaction to the budding HIV epidemic in India is considered
the first wave of the NACP public health action plan NACP-I (AIDS in
India: Statistics, History, and Treatment 2014).

In the early 1990s, the chronically underfunded soviet era public

health system finally fell apart; reaching out to the IMF and World
Bank, India cut health sector spending and initiated recommended
market reforms, privatizing the health system and setting up two major
publically financed health insurance programs (Birn et al. 2009). It was
in this environment, in 1999-2000, that the MDGs were accepted, and
the second phase of NACP (NACP-II) was rolled out. HIV prevention
strategies refocused on promoting behavior change, preventing mother
to child transmission, and taking initial steps towards universal ART
access (AIDS in India: Statistics, History, and Treatment 2014; United
Nations Millennium Development Goals 2014). The sentinels
surveillance system acted as Indias formal tool for measuring HIV
prevalence; data collected from this system was used to estimate HIV
rates in India until 2007 (Venkatesh and Kumarasamy 2008).
In 2007, following the release of a radical reduction in estimated
HIV prevalence, the NACP again reformed its efforts (NACP-III),
decentralizing prevention work to local health centers and NGOs; this
phase was the first to explicitly site its goal of reversing the epidemic
by 2012 (Ministry of Health & Family Welfare 2014a). High risk groups
became the re-emphasized target of HIV prevention and control, as did
ART access (Pramit Mitra, Vibhuti Hate, and Teresita Schaffer 2007).
Increase access to ART is considered largely responsible for the
decreased number of AIDS deaths per year; these numbers continue to

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drop as support and treatment services continue to grow (UNAIDS

2012).

Current Public Health Strategies: NACP-IV

As discussed in course lecture, the extreme variability in

HIV/AIDS prevalence is due to a variety of biological, behavioral, and
structural variables. HIV/AIDS Public Health funding in India reflects
behavioral indicator measures set forth by the MDGs; of these
indicators, condom use and HIV/AIDS education are emphasized
(United Nations Millennium Development Goals 2014; Pramit Mitra,
Vibhuti Hate, and Teresita Schaffer 2007). In 2012, NACP-IV was rolled
out, and will remain the primary HIV/AIDS strategy manual until 2017
(AVERT 2014). NACP-IV has set its immediate goal of reducing annual
new HIV infections by 50% by targeting HIV treatment, education, and
care for the general population. Interventions targeting key affected
high risk groups emphasized by NACP-III will continue to be a major
point of focus (Ministry of Health & Family Welfare 2014a).

The Two Pillars of HIV/AIDS Reduction

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Two major pillars of NACP strategy have been consistent

throughout the previous two decades Prevention and Treatment
services. Treatment service has been largely focused on universal ART
access expansion, while prevention initiatives consist primarily of a
variety of methodologies aimed to reduce high-risk behavior amongst
target groups. While ART access plays a vital role in the reduction of
AIDS deaths and prevention of HIV transmission, it is the behavioral
component of NACP strategies that I found most prominent in my
research. In dissecting behavioral methodologies however, a plethora
of critique immediately comes to surface. Particularly when addressing
disenfranchised high-risk groups rural women, FSWs, those living in
conditions of extreme poverty, the illiterate etc., certain psychosocial
factors must be taken into consideration. In order to effectively
communicate the urgency of practicing safe behaviors, particularly
among high risk groups, human rights centered approaches are the
most efficient and sustainable way of creating long term behavioral
change; stigma associated with HIV/AIDS, homosexuality, FSW, etc.
must at first be broken down. Given the evidence I have encountered
throughout my literature review, awareness campaigns, community
mobilization and holistic development approaches will be the key in not
only eliminating HIV/AIDS in India, but further achieving all previously
set MDGs.

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A Note on Indias ART Distribution Program

India started its universal ART distribution program in April of

2004; currently, UN independent studies report 19.6% of adults and
35.1% of children diagnosed with advanced HIV infection were
receiving free ART in December of 2007. Although the benchmark for
universal access defined at 80% is far from realization, the number of
people with HIV in India receiving ART is rising steadily, though slowly.
Estimates predict that ~ 15,000,00 lives have been saved due to free
ART, reducing AIDS death rates in India by 29% since 2004 (Ministry of
Health & Family Welfare 2014a).

A Human Rights Approach

In recent years, human rights discourse has become the lingua

franca of international heath policy. India, as the largest democracy in
the world, has played a vibrant role in this discourse. Issues of
extreme social inequality, modern slavery, political and social
corruption, colonial legacies of exploitation, and a history of religious
and cultural tension amongst competing national and international
groups are merely a few of the many major factors contributing to the
public health and subsequent HIV/AIDS prevalence rate in India today.
The HIV/AIDS epidemic has been increasingly realized as socially and

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culturally produced, with upstream health determents influencing not

only risk behavior, but health care access (Rhodes T et al. 2005). A
human rights based strategy , in the context of HIV/AIDS prevention
and treatment efforts, is something I have found to be extremely
lacking in HIV/AIDS initiative methodologies, and is the topic of focus I
have chosen to dissect in this paper. Given the extreme social and
economic disparities present in the country today, sustainable
upstream development has proven to not only positively affect risk
taking behaviors and HIV transmission rates, but provide long-term
economic stimulation, lower crime and increase primary education
enrollment. By targeting human rights and community mobilization
strategies, long term effects can be made across all 8 MDGs, often
times in a more efficient and powerful manner than selective, targeted
HIV behavioral risk education campaigns.

Recommendation: Redirecting Behavioral Prevention

Strategies through Community Mobilization

A study published in 2009 measuring the association between

social capital and HIV stigma in Chennai, India found clear evidence
that association and identification with stable community institutions
were directly association with lowered fear of transmission, and

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reduced perceptions of stigmatization due to HIV status (Sivaram et al.

2009).

StudiesintheUnitedStatesandelsewheresuggestthatsocialisolation
andlackofcohesivenessinacommunityareassociatedwithpoverty,whichin
turnpredictspoormentalhealthoutcomes,riskbehaviors,andunsafe
communities(Sivarametal.2009)

Preventative strategies typically focus on behavioral reform

methodologies, emphasizing the importance of safe sex practices to
the individual through condom promotion, education campaigns, and
sexual health services (Foss AM et al. 2007). Though heath education
remains critical, attempting to promote condom use without directly
addressing upstream variables of FSW disenfranchisement and
disempowerment practices proves behavioral reform measures largely
ineffective. FSWs, regardless of HIV transmission vector awareness,
often feel unable to negotiate condom use with clients or long-term
partners. The ability to adopt safe sex practices requires a certain level
of baseline social support, development of which has not been a
primary focus of Indias HIV AIDS public health strategy. Community
mobilization has been recognized as an essential tool in structural and
social development efforts associated with HIV/AIDS prevention; the
strategy involves bringing FSWs together, and providing them with the
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space, resources, and opportunity to organize and act as a collective

(Beattie et al. 2014). Empowerment in this context is defined as the
process by which those who have been denied the ability to makes
choices acquire such an ability (Kabeer 1999). Assisting in the
organization of FSWs to demand rights and protections is sustainable
as a prevention strategy, as it shifts the burden of safe sex negotiation
from the individual to the community.
The Sonagachi Program in Kolkatta, established in 2004, was one
of the first rights based HIV prevention programs directed at FSWs.
Integrated behavioral, biological assessment surveys conducted at the
close of the 2004-2013 program measured the effects of the
intervention program on biological measures of HIV/AIDS infection
shows a significant increase in condom use rates among both one time
and repeat partners, HIV and STI service uptake, and reduced
chlamydia and gonorrhea prevalence. The effects of such a prevention
strategy however proved multidimensional; measured rates of
violence, harassment, stigma, risk behaviors, and vulnerabilities
decreased (Beattie et al. 2014). Analysis, conducted between 20042006, showed condom use at last sex increased from 65%-90%, with
regular partners from 7%-30%. STI prevalence declined significantly
syphilis from 25%-12%, trichomonas from 33%-14%, and chlamydia
form 11%-5%. HIV prevalence remained relatively stable, hovering at
~25%, though detuned assay testing showed a decline in HIV infection

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rates (Reza-Paul et al. 2008). Similar methodologies of community

mobilization have been utilized by NGOs targeting child labor, human
trafficking, gang violence and rural poverty throughout India, and have
seen similar social and economic stimulation a result for their efforts
(Sharma, Sharma, and Raj 2004; Brysk and Choi-Fitzpatrick 2012; Walk
Free Foundation 2013; Bales and Soodalter 2009; Sen 2008)
The Health Belief Model (HBM) is useful in this discussion as a
framework for behavioral HIV/AIDS prevention theories. The model is
claimed to be one of the first to integrate behavioral sciences with
health promotion strategies; it is a psychological model that focuses on
the attitudes and beliefs of communities and individuals in an attempts
to explain and predict health behaviors (Glanz, Rimer, and National
Cancer Institute (U.S.) 1997; Heimann 2015). This model, initially
designed in the US as a tool of analysis for underutilized health
screening and prevention program services, has been utilized in India
to asses sexual risk behavior and the transmission of HIV/AIDS. Key
variables for the HBM include perceived threat, susceptibility and
severity, perceived benefits, perceived barriers, and cues to action,
among others (Lopez et al. 2013). While FSWs have been clearly
targeted as the most high-risk group in India, prevention campaigns
have often failed to address one or more of these HBM variables. One
study, published out of BioMed Central in 2011, used behavioral survey
data collect from over 5,400 FSWs throughout southern India; although

17

FSWs could self-asses high risk behavior when not using a condom with
occasional clients, FSWs who identified as not wearing a condom with
regular costumers and non-paying sexual partners self identified as low
risk for HIV transmission (Jain et al. 2011). This study, concluded and
published in 2011, includes survey data of FSWs who had been
exposed to eleven years of post MDG HIV/AIDS strategic public health
planning interventions. While it is clear that public health messages
directed at this targeted group have had some effect, a significant gap
in perceived risk is evident.

Recommendation: Building Awareness

A study published in 2009 through the Indian Institute of Public

Health assessed 2005-2006 National Family Health Survey Data,
measure HIV/AIDS transmission awareness and education. It was found
that prominent gaps in knowledge in rural communities particularly
rural women, were particularly severe. Five years after MDG HIV public
awareness campaigns had been initiated, 61% of women and 84% of
men had heard of HIV/AIDS; these rates measure against 1997-1998
data show a major increase prior to the 2000 MDG awareness
campaigns, less than 41% of the total population responded as being
aware of HIV/AIDS (Indrajit Hazarika 2010).

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In surveying rural communities throughout southern India, less

than 1/5th of respondents new about drugs to treat HIV, 50% were
aware of HIV/AIDS testing sites, less then 5% of the study sample had
undergone HIV testing, and there was a continued perception that
unsafe injection practices were not a risky behavior. Condom use,
corresponding with national data remains below ~5% (AIDS in India:
Statistics, History, and Treatment 2014; Buscher AL 2012; Ministry of
Statistics and Programme Implementation 2014). Building awareness
across all sectors of India both urban as well as rural, is absolutely
necessary. As HIV/AIDS begins to move out of cities and into the
countryside via migrant worker vectors, education in the form of
culturally appropriate and community based awareness will prove
paramount, particularly among youth. Behavioral changes among
young people in India has been cited as one of the primary causes of
Indias HIV prevalence decline. These behavior changes, strongly tied
to targeted campaigns aimed at high-risk groups and youth, have been
analyzed through statistical modeling to account for up to 50% of HIV
incidence decline (Bello G et al. 2011).

Moving Forward: 90/90/90

The 90-90-90 goals, announced and designed by UNAIDS in July

2014, aim to further the work done by MDG targets and initiatives.

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These goals set the ultimate objective of ending the spread of HIV by
2020 and eliminating the disease entirely by 2030 have been lauded
by many as ambitious, but achievable nevertheless. Requirements for
this target have been defined as ensuring 90% of PLHA are tested and
diagnosed, getting 90% of those diagnosed on ART, and, as a direct
result of these measures, having at least 90% of those infected attain
an undetectable level of virus in their bodies (The 90-90-90 Solution to
AIDS Pandemic 2013.).
According to NACO projections, there are currently 1.8 million
high-risk individuals and 11 million bridge individuals living in India;
the current NACP-IV strategy aims to cover 80% of those at risk
communities with tested primary prevention series, like treatment for
STI, condom provision, behavior change communication, creating and
strengthening an enabling environment with community involvement
and participation, linkages to care and support services, and
community organization and ownership (Garg and Singh 2013). Given
Indias remarkable success in halting the prevalence of HIV, I believe
the current trajectory of Indias NACP focus and resulting outcomes
make the 90-90-90 goals achievable. By fully supporting the
development of both Prevention and Treatment public health pillars,
India is well on its way to potentially achieving major HIV/AIDS
infection rate decrees. Although a significant amount of work and
development is necessary to achieve the 90-90-90 goals, I believe

20

recognition of human rights facilitated community mobilization, and

awareness campaigns may prove powerful beyond measure; though it
will certainly prove a long and challenging journey, all research I have
conducted over the past 10 weeks supports the conclusion that
eradication of HIV/AIDS in India has the potential to become reality
during my generation.

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