Assessment item 3: Case study part 2

Assessment item 3: Case study part 2
Introduction
Viral hepatitis remains a prominent global health concern, claiming over 1.4 million lives yearly
worldwide. Despite the existence of several strains, this case study will focus on the prevalence of
hepatitis E in the city of Ahmedabad, Gujarat, India (World Hepatitis Summit, 2015).
After providing a contextual basis for this issue and examining previous mitigation efforts, a two-part
human rights-based strategy will then be proposed. Potential challenges to implementation as well as
methods for sustainability, monitoring, and evaluation will also be discussed.
The hope is that this study will allow the reader to see beyond mere disease statistics, perceive
hepatitis through the lens of equity and human rights, and appreciate the complexity of why it still
persists today. Ultimately, this study seeks to implement a rights-based approach to aid in the
reduction and eventual eradication of hepatitis E not only in Ahmedabad, but throughout India.
Background
Despite being an ancient civilization, India has struggled with the lasting effects of colonialism, only
gaining its independence from Britain in 1947 (Know India, 2015). Since the 1990s, the country has
seen a marked shift toward government decentralization, putting more power and responsibility into
the hands of the state governments (Tenhunen & Sӓӓvӓlӓ, 2012). Despite current growth in the
industrial and service sectors, an initially slow post-independence economic recovery combined with
rapid urbanisation and the remnants of a rigid caste system see the country experiencing a ‘perfect
storm’ of its own political, cultural and economic histories (Jha, 2008).
As a result, India bears the burden of both endemic and emerging communicable and noncommunicable diseases. While vast improvements in public health have been made since the 1950s,
a rapid demographic and environmental transition has seen the effects of climate change and
urbanisation on India’s citizens. Exacerbating existing economic, social and political inequalities, this
evolution is now taking a very real toll on the country’s health (Chauhan, 2011).
Viral hepatitis remains one of the country’s most significant health issues. While there are 5 main
hepatitis viruses, our focus will remain on hepatitis E in Ahmedabad, Gujarat, the strain implicated in
numerous significant epidemics (Abraham, 2012). The main environmental determinant of this
disease is the availability of clean water and proper sanitation infrastructure in order to facilitate its
provision (Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report,
2015).
As health and human rights are often inextricably linked, any potential strategy to combat hepatitis E
in this region will need to address these elements.
India ratified both the ICCPR (Articles 2, 3, 6 and 24) and ICESCR (Articles 11, 12, 15 and General
Comment No. 6 & 15) on 10 April 1979, both of which contain several articles relevant to the provision
of health, clean water, and sanitation infrastructure for its citizens (United Nations Human Rights:
Office of the High Commissioner, n.d.). These rights are also outlined in the Convention on the
elimination of discrimination against women (ratified 9 July 1993), the Convention on the rights of the
child (ratified 11 Dec 1992), and the Convention on the rights of persons with disabilities (ratified 1
Oct 2007), as well as in a number of other international human rights documents, thereby applying
these rights to all citizens in all countries (WaterAid, 2011).
It is important to note that while the ICCPR implicates an immediate obligation to these rights, those
included in the ICESCR are meant to be progressively realised. Regardless, these documents were
both ratified 37 years ago (United Nations Human Rights: Office of the High Commissioner, n.d.) and,
as previously mentioned, a host of others relevant to this issue have been added since.
Previous Efforts
The Environmental Sanitation Institute (ESI) is an NGO that was born of the Safai Vidyalaya
(“Sanitation Institute”) in 1985 and is based in Ahmedabad. Interestingly, Safai Vidyalaya is a branch
of the Harijan Sevak Sangh, which was Gandhi’s 1932 initiative to decrease inequalities faced by the
Harijan (untouchables) by helping advocate for, amongst other things, better sanitation and sanitation
technologies. Per the website, the ESI appears to have been very active until 2008, having conducted
water/sanitation surveys, latrine construction, the Water Awareness Project, and offering training
programmes involving implementation of the Total Sanitation Campaign (TSC), among other
initiatives (Environmental Sanitation Institute, 2014).
The Government of India then launched the Central Rural Sanitation Programme (CRSP) in 1986 to
accelerate sanitation coverage in rural areas. In 1999, this programme was restructured and renamed
the Total Sanitation Campaign (TSC). The main goals of this programme were increased rural
sanitation availability and acceptability as well as education regarding water and sanitation-related
diseases. Interestingly, the programme is stated as intending to be ‘community-led’ and ‘peoplecentered’, both very important elements included in a human rights-based approach to health
(Ministry of Rural Development, n.d.). However, in a recent study in the state of Madhya Pradesh,
Patil et al. (2014) found the TSC’s impact to be only modestly helpful in increasing sanitation
availability and behaviours, but insufficient in improving associated child health outcomes. However, it
is important to note that this study was carried out in rural villages in another state. Outcomes may
very well be different when looking at Ahmedabad, the largest metropolis in Gujarat and seventh
largest in India (Collectorate – District Ahmedabad, 2016).
Since the mid-1980s, WaterAid India (WAI) has also worked closely with the Government of India and
civil society organizations on people-led initiatives in water and sanitation in the country (WaterAid,
2011).
In response to a 1994 study called “Dynamics of Drinking Water in Rural Gujarat”, a meeting was
called to discuss the results. Attended by scholars, experts, and representatives of over 60
organisations, it culminated in the forming of PRAVAH- an active platform launched to create mass
awareness and subsequent advocacy with regards to drinking water and sanitation issues in the state
of Gujarat. PRAVAH has carried out a number of diverse programs (including Village Water
Availability Monitoring, Abhiyans (local and regional campaigns), and Lokmanchs (People’s Forums)).
Notably, the Lokmanchs are focused on the education of water and sanitation issues as well as the
human rights associated with them (PRAVAH, 2011).
Begun in 2006, The World Hepatitis Alliance (WHA) has done more than just raise awareness about
the disease. They have since achieved the adoption of a viral hepatitis WHO resolution, the first WHO
Official World Hepatitis Day, and the establishment of the WHO Global Hepatitis Programme in
Geneva (World Hepatitis Alliance, 2015).
Lastly, there do appear to be ongoing studies in reference to this issue as well, but not all have
websites or updated materials. It then becomes difficult to discern whether these studies and/or
organizations are still functioning and if not, why they became defunct in the first place (Centre for
Development Alternatives, n.d.).
Out of interest, the Gujarat State Human Rights Commission has been contacted for more information
on water-related complaints and to inquire as to whether human rights are at all involved when
addressing water and sanitation-based complaints or initiatives within the region. At the time of
writing, no response had yet been received (Gujarat State Human Rights Commission, 2016).
Strategy for a rights-based approach
To address the continued burden of viral hepatitis in this region, an integrative rights-based strategy,
combining both advocacy and policy frameworks is proposed.
This approach would begin by establishing a partnership between PRAVAH and the World Hepatitis
Alliance, consulting with both regarding the drafting of an integrative rights-based strategy
appropriate for the city of Ahmedabad.
Once this partnership is established, continued education will remain the focus in educating the city’s
communities on their rights to health, water, and sanitation. This will include several community
forums, hosted by a representative from each NGO and a few leading community members, that are
solely focused on providing information and the communication of rights. By incorporating fellow
community members with the NGO representatives, the free, meaningful and effective participation of
a wider audience will be encouraged. This method will also directly promote and protect the right to
education regarding health issues. It will also assist in articulating the government’s obligations in
respecting, protecting and fulfilling human rights associated with the continued prevalence of viral
hepatitis and hepatitis E outbreaks in the city.
After the initial forums have been held, the focus will shift toward the formation of more permanent
community groups, with each electing several internal leadership roles. Subsequent meetings can
then be run on a more regional and intimate level, but with the assistance of an NGO representative
(PRAVAH and WHA on a rotating roster). Holding regular meetings in this manner may help
encourage the attendance of those individuals who were initially hesitant to do so. Therefore, this
method will promote the inclusion of vulnerable and marginalised groups and attempt to address
existing inequalities and freedom from further discrimination, as experienced by group members
within the community. The inclusion of the NGO representative will help the groups by serving as a
connection to the resources and network both organizations have worked to establish.
Leadership and attendees will work together to continue educating and informing their communities
further, including children, whose futures will be most impacted by current actions being taken.
Presentations will also be made at the school level to help children understand the basics of hygiene,
their rights to health, clean water, and sanitation. As stated in a 2008 WaterAid study, teaching
sanitation in schools has little impact on behaviour if appropriate emphasis on hygiene education is
not also incorporated (WaterAid, 2008).
These community groups will importantly encourage the inclusion and participation of current hepatitis
patients as well as the participation of their health professionals, as supported by the WHA. The WHA
toolkit will be utilised for community groups to continue pushing for a comprehensive viral hepatitis
strategy via the next step in our approach: policy change (World Hepatitis Alliance, 2015).
Once the group has prepared a solid message/communications strategy, they will move to execute it
by contacting local and federal government officials via a combination of traditional and modern
methods. For instance, persistent letter-writing, online petitions, the creation and regular usage of
social media accounts on all relevant platforms, and regular contact with local media via emails/press
releases will form part of a well-integrated communications approach to keeping hepatitis E on the
agenda.
Again, the targeted audience of these communications will not only be other members of the public,
but also global and national policymaking bodies and those responsible for the writing of health,
economic and development-based policies, as recommended by Gruskin & Tarantola (2013). The
group will lobby for the inclusion of human rights language into these documents and strategies, if
they exist. If not, the group will work to educate those in power via informed lobbying for their creation.
The groups will continue to lobby government officials by targeting specific health policies that are
relevant to hepatitis (water and sanitation policies in the state of Gujarat). For example, the Total
Sanitation Campaign, even though it hasn’t been proven absolutely effective, still remains a mere
guideline (WaterAid, 2008).
Through a fusion of advocacy and policy rights-based strategies, the ultimate goal of this approach is
the implementation of a nationally-enforced sanitation policy that clearly articulates the
government’s policy and position and the human rights protected within it.
Challenges to implementation
Within an advocacy framework, there are several junctures in the implementation process where
obstacles may present themselves.
Poor design due to improper planning could lead to poor preparation and potential failures early on in
the process.
In addition, inadequate or uncoordinated implementation and lack of contextual understanding within
the approach could serve to impede progress. Context, in the form of bias, corruption, and
hierarchical societal structures must be taken into consideration when plotting a strategy and all
attempts should be made to minimise their effects upon the strategy itself (Filmer-Wilson, 2005).
Backlash is another potential post-implementation obstacle to this approach. There may be an initial
resistance to work with yet another NGO, much less two of them, however, the empowerment of
individuals within the community by being elected to take on leadership roles may help them to see
this approach a little differently, as leaders rather than followers.
Within a policy framework, there also lie several points where challenges may occur.
Drafting rights-based policies is not always a straightforward task. Andreopoulos & Arat (2014) note
that rights are essentially “general propositions that offer little guidance as to the specific policy
prescriptions that would be consistent with adherence to the relevant norms” (Andreopoulous & Arat,
2014, p. 7). Therefore, the equal inclusion and participation of community members in each step of
this process is critical in ensuring equal representation for all.
As policies can often take time to not only draft but enact, once they are approved, their subsequent
enforcement needs to be monitored carefully. Several procedures for doing so are outlined in the
following section.
Sustainability, monitoring and evaluation
Equally as important as the establishment of a nationally-enforced sanitation policy is the subsequent
monitoring and evaluation of these efforts.
Quarterly anonymous surveys of community groups and leadership will be carried out to assess the
effectiveness of both advocacy and policy efforts, thereby ensuring equal accessibility and
participation in feedback. As advocacy is complex and often unpredictable, this ongoing evaluation
process will be critical toward making any necessary adjustments to the current strategy (Devlin-Foltz
et al., 2012).
Through grants and/or the NGOs themselves, water quality test kits will be made available to random
members at each community group meeting, with the results compiled and published in a quarterly
publication made available to both members and the community-at-large. Of course, proper training of
kit usage will be critical in the viability of the data obtained, but once a protocol is achieved, data will
then be relevant and comparable amongst the groups. Randomisation will not only generate better
data but also ensure equality and freedom from discrimination in choosing participants to test
samples.
In addition, the continued encouragement of health professionals’ participation in disease surveillance
will also play an important role in monitoring the success of this strategy.
Finally, the above data will culminate in the publication of an annual report. This will serve as an
important tool not only for the groups’ reference but also as a comprehensive tool to be presented to
government officials for their use in drafting and/or modifying any related policies. It would help link
the health issues at hand with human rights, referencing their relationship to current international
human rights norms and standards.
Conclusion
Combating the prevalence of hepatitis E in Ahmedabad will be no easy task. India’s history has made
this issue anything but black-and-white. It remains as a result of a complex web of economic, political,
and social interactions that persist today.
While a significant amount of advocacy has been undertaken to address viral hepatitis and its
determinants, a one-framework approach doesn’t appear to be enough to produce lasting results.
Therefore, a combined advocacy and policy-based human rights-based approach has been proposed
to tackle this issue.
In short, this isn’t going to be a battle that’s won overnight. However, with an integrated strategy that
includes a greater focus on the incorporation of human rights into both the design and execution,
there remains hope for the future.
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