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HHR

Health and Human Rights Journal

Using a Reporting System to Protect the Human Rights


of People Living with HIV and Key Populations:
A Conceptual Framework

R. Taylor Williamson, Peter Wondergem, Richard N. Amenyah

Abstract

Human rights of people living with HIV (PLHIV) and key populations most affected by
HIV are often violated, with negative implications for health outcomes. To facilitate access to
justice in Ghana, a consortium of partners developed a web-based discrimination reporting
system. The reporting system links the Commission on Human Rights and Administrative
Justice (CHRAJ) to civil society organizations through case reporting, follow-up, and aggre-
gated reported data use. A reporting system can form a critical part of a country’s human
rights protection network. In Ghana, the combination of a supportive legal framework, an
institutional home, and engaged stakeholders have created a favorable environment for de-
veloping such a system. Other institutions may learn from Ghana’s experience by adapting
these lessons.

R . Tay l or Wil liam son , MPH, is Health Governance Specialist for the Health Policy Project in the International Development Group at
RTI International, Washington, DC, USA.
P ete r Wonde rge m , MS c , M PH , is USAID Team Leader/Senior Health Advisor, US Embassy, Yaounde, Cameroon.
R icha rd N. A m e n yah , MD, MPH, was Director of Technical Services at the Ghana AIDS Commission, Accra, Ghana. He is currently
the Technical Assistance and Capacity Building Manager for the UNAIDS Technical Support Facility for West and Central Africa, Ouagadougou,
Burkina Faso.
Corresponding author: R. Taylor Williamson, email: rtwilliamson@rti.org
Competing interests: None declared.
Copyright: © 2014 Williamson, Wondergem, and Amenyah. This is an open access article distributed under the terms of the Creative Commons
Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distri-
bution, and reproduction in any medium, provided the original author and source are credited.

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Introduction
In 201 1 , th rou gh its Political Declaration on veloped to schematize operational steps to reduce
HIV, the United Nations General Assembly affirmed discrimination, examines the role of existing policy,
that its members should “create enabling legal, so- mechanisms for accessing justice, and capacity de-
cial and policy frameworks in each national context velopment strategies that influenced the reporting
in order to eliminate stigma, discrimination and system design. Together, the Commission on Hu-
violence related to HIV…provide legal protections man Rights and Administrative Justice (CHRAJ),
for people affected by HIV…and promote and pro- the Ghana AIDS Commission, HPP, and other hu-
tect all human rights and fundamental freedoms.”1 man rights institutions applied the framework to
Following this agreement, the Joint United Nations develop a system for individuals in Ghana to report
Programme on HIV (UNAIDS) identified strength- instances of HIV-related discrimination. In this pa-
ening legal support services for people living with per, we outline the process and design principles
HIV (PLHIV) as one of seven key programs for used to develop the discrimination reporting sys-
HIV responses.2 tem. We also present considerations for other coun-
For member states to protect the human rights tries that seek to provide legal services to PLHIV
of PLHIV and key populations, by which we mean and key populations when their human rights are
men who have sex with men, sex workers and peo- violated. Human rights commissions, ombudsman’s
ple who inject drugs, clear guidance on human offices, and international assistance agencies can use
rights protections relevant to these populations is our experience to inform efforts to protect PLHIV
required. Building on existing human rights frame- and key populations.
works, the UN outlined human rights principles
relevant to HIV, including equal protection, priva-
Using a reporting system to protect the
cy, education, work, security, the highest attainable
human rights of people living with HIV and
standard of health, and participation in public life.3
key populations: A conceptual framework
These principles should guide government respons-
es to HIV.4 Guidance on HIV and human rights makes clear
Despite UN declarations and guidance, PLHIV that national HIV responses must account for var-
and key populations are still denied basic human ious factors, such as relationships among institu-
rights globally such as housing, education, health tional actors, legal and political environments, and
services, livelihoods, and travel.5 Legal protections social determinates of stigma and discrimination.9
are important because enshrining rights-based ap- Building on these concepts, the authors identified
proaches in legislation discourages discriminatory three main issues to consider when strengthening
practices.6 Legal services, however, must comple- legal services for PLHIV and key populations: the
ment legislation. Unfortunately, as of 2012, only 55% strengths and weaknesses of the existing legal en-
of countries provide HIV-related legal services.7 vironment, the capabilities of institutions that pro-
Where services are available, pursuing litigation mote access to justice, and the mechanisms that link
is costly and stigma can inhibit demand among PLHIV and key populations to legal services.
PLHIV and key populations.8
This article presents a conceptual framework HIV-related legal and policy frameworks
for an HIV and key populations-related discrimi- Throughout the world, legal frameworks have a sig-
nation reporting system in Ghana, supported by nificant impact on PLHIV and key populations.10
the Health Policy Project (HPP), a USAID-funded While no specific legislation outlaws HIV-related
technical assistance project. The framework, de- discrimination in Ghana, the country’s legal frame-

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work does provide broad human rights protections. in the Ghanaian public health system from dis-
Within Ghana’s 1992 Constitution, Articles 17 and 29 crimination based on culture, ethnicity, language,
provide for equal protection before the law, define religion, gender, age, type of illness, or disability.23
“gender, race, colour, ethnic origin, religion, creed Through the prohibition of discrimination by type
or social or economic status” as protected classes, of illness, the Patient’s Charter forbids HIV-relat-
and specify rights for disabled persons.11 Through ed discrimination. The Ghana AIDS Commission
the previously defined protected classes, legislation (GAC) also has a National HIV/AIDS Policy that
protects Ghanaian citizens from discrimination in bars pre-employment HIV tests.24 These policies
employment, education, housing, and privacy.12 may be enforceable within certain institutions, such
Regardless of these broad human rights provi- as public health clinics, but are less relevant for the
sions, case law rarely defines how these provisions wider health system or labor markets. The mili-
apply to PLHIV and key populations. As a result, tary and police, for instance, continue to conduct
there is ambiguity about which rights are legally pre-employment screening.25
actionable.13 Of the aforementioned human rights
principles, only the right to keep one’s HIV status Institutions that promote access to justice
confidential has been upheld in Ghanaian case law.14 Ensuring access to justice for PLHIV and key popu-
However, examples of case law from other countries lations also requires strong institutions for resolving
that protect these rights for PLHIV and key popula- disputes. Examples of existing web-based discrimi-
tions are common.15 nation reporting systems and human rights institu-
Disability protections in the Ghanaian constitu- tions are instructive for identifying how institutions
tion and in the Persons with Disability Act can be protect the rights of PLHIV and key populations.
understood to include PLHIV, though these pro- Before designing the discrimination reporting sys-
tections have also not been codified by Ghanaian tem for Ghana, the authors studied many of these
case law.16 Internationally, such protections have examples, both internationally and within Ghana.
been enshrined through case law but their appli- We reviewed the Jamaican Network of Seropos-
cation in these contexts is controversial due to the itives (JN+) experience with a web-based National
implication that PLHIV are disabled.17 International HIV Related Discrimination Reporting and Re-
experience highlights the need for supportive legal dress System, where the importance of institutional
frameworks. Unlike that of Ghana, the legislative capacity to support access to justice was clear. We
framework in Jamaica has not been interpreted to found that JN+, the institutional home for the sys-
apply to HIV-related discrimination.18 As a result, tem, only receives complaints; it must refer cases to
obtaining court-based redress is difficult.19 other institutions to seek redress.26 Furthermore,
Punitive provision for HIV transmission and JN+ has difficulty closing cases due to staff turnover,
criminalization of homosexuality and sex work can weak investigative capacity, and poor systems for
also weaken human rights protections.20 In Ghana, referring criminal cases to prosecutors.27 As a result
men who have sex with men and sex workers ex- of these challenges, case reporting is limited, with
ist in a legal limbo; certain consensual sexual be- 180 complaints documented from 2005 to 2009.28
haviors among adults are officially illegal, but are Created in 2012, Kenya’s HIV and AIDS Tribu-
difficult to prosecute due to high evidentiary stan- nal is charged with enforcing human rights protec-
dards.21 Regardless of criminalization, Ghanaian cit- tions for PLHIV, including confidentiality breaches,
izens who are members of key populations retain health service access and discriminatory laws and
human rights protections through the equal protec- policies.29 Though it received 400 complaints in its
tion clause of the Constitution of Ghana.22 first year of existence, it only delivered two judg-
Health-specific policies that do not carry the ments.30 The tribunal had difficulty navigating the
force of law can also provide a basis for protecting complex structures of Kenya’s government bureau-
human rights. A Patient’s Charter protects patients cracy that delayed redress for PLHIV, which could

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cause PLHIV to lose faith in the tribunal.31 not enough to ensure legal service for PLHIV and
In Ghana, numerous state and non-state actors key populations. Mechanisms, such as networks
have legal protection mandates. CHRAJ is the main and partnerships, must exist to link legal services to
government institution, which has the mandate of people who need them. This is the final element of
an ombudsman’s office, an anti-corruption agency, our framework.
and a human rights commission. This broad man- In India, grassroots outreach strengthened legal
date gives it the ability to oversee State agencies, service scale-up in Tamil Nadu and Adhra Pradesh
mediate civil disputes, and conduct investigations. states, where a partnership between UNDP and the
Though CHRAJ does not have previous institution- National AIDS Control Organization created legal
al experience working with PLHIV or key popula- clinics. This partnership connected networks of
tions, the commission handled 12,900 complaints in PLHIV, the State AIDS Control Societies, and legal
2010, the vast majority of which focused on child aid attorneys to provide legal services.35 In each clin-
support, child abuse, and gender-based violence.32 ic, staff conducted intake interviews, raised aware-
Like HIV-related and key population discrimina- ness about rights and services, and referred cases to
tion, these complaints have elements of abuse, con- pre-identified attorneys.36 UNDP noted that strong
fidentiality, shame, and gender norms and dynam- partnerships with networks of PLHIV were critical:
ics. In considering how to protect the human rights they supported outreach efforts to create demand.37
of key populations, CHRAJ invoked the concept of Government institutional ownership and buy-in
equal protection: all citizens of Ghana have invio- were also important to project success.38
lable rights. The Commission has a strong national As there was little documented information on
presence, with more than 700 staff, a head office in functional mechanisms in Ghana that link PLHIV
Accra, 10 regional offices, two sub-regional offices to legal services, the authors also held discussions
and 96 district offices. Other state agencies, such as with technical working groups, human rights orga-
the Ghana AIDS Commission and the Ghana Police nizations, CHRAJ, PLHIV, and key populations in
Service’s Domestic Violence and Victim Support Ghana to understand existing mechanisms for link-
Unit (DOVVSU), have a significant role in respond- ing PLHIV and key populations to legal services.
ing to discrimination through outreach, coordina- These discussions revealed significant service frag-
tion, and case intake. mentation, few referral procedures, and little trust
Non-state human rights organizations current- between civil society, PLHIV, key populations, and
ly provide small-scale, fragmented legal services legal service providers.
in Ghana. These organizations include the Human As a result of this fragmentation, GAC and
Rights Advocacy Centre (HRAC) and Internation- CHRAJ, with HPP support, began designing a dis-
al Federation of Women Lawyers (FIDA), Ghana, crimination reporting system for Ghana that would
which operate stand-alone legal clinics, paralegal be institutionalized within CHRAJ. This reporting
services, and legal aid clinics to bring services to system built on the three elements of the concep-
PLHIV and key populations.33 These services are tual framework by utilizing the legal environment,
concentrated in Accra and operate with limited building on existing institutional capacity, and
state resources. Though Ghanaians have the right to strengthening ties between PLHIV and legal ser-
representation, the Legal Aid Scheme is poorly re- vices.
sourced and staffed.34 As a result, the scheme is not
often accessed by members of key populations who
Reporting system development process
face criminal proceedings.
Following the decision to develop a discrimination
Mechanisms to link people living with HIV and key reporting system, the authors conducted further
populations to legal services key informant interviews and focus groups to better
Supportive legal frameworks and institutions are understand the legal environment, further define

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institutional actors, identify system requirements, and key populations reporting cases of discrimi-
and specify barriers to access. HPP, CHRAJ, and nation. To that end, the Reporting System Com-
GAC created a multisectoral oversight body, the mittee is building demand by engaging PLHIV
Reporting System Committee, that included civil and key populations in peer-to-peer outreach and
society and affected populations to guide and mon- incorporating outreach into CHRAJ’s public edu-
itor implementation of the system. The committee cation strategy. Future evaluation will consider the
included representatives from the various organiza- effectiveness of these approaches through counting
tions that provided input on improving legal sup- in-person contacts and system referrals.
port services. Its mandate was to oversee reporting
system implementation, providing a forum for civil
System design
society, GAC, and CHRAJ to discuss policy devel-
opment, demand generation, and progress of cases. Based on the conceptual framework, Reporting
As the first step to institutionalize the system System Committee input, and focus groups with
within CHRAJ, HPP conducted an assessment PLHIV, the authors designed a system for PLHIV
of CHRAJ’s capacity to manage HIV-related dis- and key populations to report cases of discrimina-
crimination cases. This assessment identified four tion to CHRAJ. This reporting system uses both a
main areas of need: 1) policy and procedure gaps; web-based and an SMS (short message service) re-
2) CHRAJ staff training; 3) information technology porting system to build on existing structures. If us-
(IT) infrastructure; and 4) demand generation. ing the web-based system, a complainant has two
CHRAJ addressed policy and procedural gaps options. First, an individual may bring the case to
by creating a Health Rights Task Team to oversee the attention of a partner human rights organiza-
case routing and develop a new privacy and confi- tion, which then reports it to CHRAJ through the
dentiality policy. CHRAJ is currently taking cases web-based reporting system. Second, a complainant
through the reporting system, conducting case in- may report a case directly through the web-based
vestigations, and finalizing a privacy and confiden- system. The first mechanism allows clients to re-
tiality policy. main anonymous and provides the institutional
CHRAJ officers also needed training to sensitive- backup of the civil society partner, while the second
ly and professionally manage cases of discrimina- option allows clients to work directly with CHRAJ,
tion against PLHIV and key populations. In January but will not allow them to remain anonymous if
2013, HPP conducted a stigma reduction training, they are seeking redress. If they are not seeking re-
and in November, a more targeted training focused dress and only wish to report a case of discrimina-
on the Health Rights Team. As front desk staff were tion, complainants may retain anonymity, regard-
also likely to come in contact with clients, they re- less of the procedure used.
ceived a condensed version of the stigma-reduction An SMS reporting option also exists. People liv-
training, which was then embedded into CHRAJ ing with HIV and key populations who have expe-
on-boarding training procedures to ensure institu- rienced discrimination may text complaints direct-
tionalization. ly to CHRAJ. The limited information carried by
CHRAJ also faced a number of IT challenges SMS requires CHRAJ staff to call, text, or request
such as outdated servers, US-based web hosting, an in-person interview with the client to process a
and a non-functional case management system. To complaint.
streamline case reporting and monitoring, the re- Following case submission, CHRAJ moves the
porting system had to be integrated into existing complaint through a three-step process:39
CHRAJ systems. Integration, however, required up-
dates to CHRAJ’s IT infrastructure, including serv- • Mediation: The parties seek to resolve their
ers and web hosting. differences through CHRAJ-facilitated nego-
The success of the system depends on PLHIV tiation.40

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• Investigation: CHRAJ researches the com- suggested different methods of generating demand:
plaint and provides a recommendation.41 ensuring redress options, facilitating reporting, and
• Adjudication: CHRAJ can enforce its recom- grassroots engagement.
mendation through a court order.42 Possible Building on the elements of the conceptual
remediation options include fines, reinstate- framework, the authors identified lessons for the
ment, and sanctions against public officials.43 development of future reporting systems:

The reporting system also facilitates accountability • Ensure a legal basis for redress exists and that
by allowing human rights organizations to access lawyers understand it
updates for cases they submitted, contact CHRAJ • Institutionalize the system within the right
case officers to inquire about progress, and provide organization
case-relevant documentation. Aggregated data on • Engage a variety of partners at multiple steps
reported complaints are also available and can in-
form future advocacy efforts. With aggregated data, Experience from Jamaica suggested that underuse
the CHRAJ Health Rights Task Team can calculate of legal services was driven by poor redress options
case submission, response, and closure rates, as for PLHIV and key populations. Civil society part-
well as the average time for cases to move through ners in Ghana wanted the reporting system to be
the system. These metrics will be provided to the more than a database of complaints; they thought
Reporting System Committee and compared with that the system must help CHRAJ ensure access to
CHRAJ standards to evaluate system performance. justice for complainants. CHRAJ’s ability to enforce
Finally, the system allows CHRAJ to refer cases recommendations through the court system is a sig-
to legal service organizations. Situations in which nificant strength and addresses concerns about how
CHRAJ may be unable to act on a complaint in- to ensure redress.
clude: if a lawsuit has already been brought to court, The Jamaican and Indian examples, as well as
if an incident occurred more than 12 months ago, stakeholder discussions in Ghana, demonstrated a
and if CHRAJ deems the complaint to be trivial or number of critical attributes for any institutional
frivolous.44 home: a human rights mandate, trust with affected
communities, knowledge of human rights frame-
works, connections with legal service providers,
Implications for other countries
the ability to coordinate stakeholders, geographic
There are similarities and differences among the reach, strong institutional commitment to address
experiences in Jamaica, India, and Kenya, and the discrimination, supportive policies and procedures,
system in Ghana. In Jamaica, the web-based report- and up-to-date IT infrastructure. CHRAJ’s human
ing system is managed by a network of PLHIV, not rights mandate was a key factor in the decision to
a government agency. JN+ must refer cases to other institutionalize the reporting system within the
organizations that provide legal services. In India commission. Significant senior management sup-
and Kenya, legal service capability is embedded in port improved institutionalization: they continue to
the institutional home, but no web-based platform lead planning sessions, oversaw system design, and
exists to connect clients and legal service providers. devoted resources to fill institutional gaps. CHRAJ
India used low-tech methods to build demand, and also had challenges to overcome, such as its lack of
its experience highlights the importance of grass- experience with PLHIV and key populations, weak
roots outreach. In Kenya, the HIV and AIDS Tribu- IT infrastructure, and poor privacy and confidenti-
nal was embedded in the judiciary, without specific ality policies. In other countries, different needs and
legal representation for PLHIV or key populations. concerns may arise during system development and
All three country examples revealed that underre- use in other settings.
porting was a significant problem. These examples Finally, civil society, governments, PLHIV, key

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populations, legal support organizations, and social cInnis, Health Policy Project/Futures Group, who
service providers must be engaged to guide system worked on the conceptualization and oversight of
design, generate demand, and oversee implementa- the reporting system; and Kip Beardsley, Health
tion. They can also provide key technical guidance Policy Project/Futures Group, for his insights on in-
on country-level issues, such as the specifics of the ternational efforts upon which the Ghana reporting
country’s HIV epidemic and civil society struc- system builds.
tures. In Ghana, stakeholders are engaged at mul- This paper was supported by the Health Policy
tiple points in planning, designing, and implement- Project, a five-year cooperative agreement funded
ing the system, helping to make the system more by the US Agency for International Development
user-friendly, identify and fill technical gaps, hold under Agreement No. AID-OAA-A-10-00067, be-
CHRAJ accountable, and build demand. ginning September 30, 2010; this activity was also
A reporting system can form a critical part of a supported by the US President’s Emergency Plan
country’s human rights protection network. In Gha- for AIDS Relief (PEPFAR). We would like to thank
na, the combination of a supportive legal frame- USAID for its ongoing financial support for the re-
work, an institutional home with the right mandate porting system.
and capacity, and engaged stakeholders have creat-
ed a favorable environment for developing such a
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15. For a list of comparable case law in Africa, see, for ex- 31. UNAIDS, “Q&A with Ambrose Rachier, Chair of the
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500.; MX v. ZY (1997) AIR 1997 Bom 406 in India; and Sap- Justice, Seventeenth Annual Report (Accra, Ghana: Commis-
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tections against HIV-related human rights violations: Experi- about/.
ences and lessons learned from national HIV laws in Asia and 34. Leitner Center, Access to justice in Africa: The experi-
the Pacific. (Bangkok, Thailand: UNDP, 2013), pp. 24—27. ence of the legal aid scheme in Ghana (New York, NY: Leit-
18. Jamaican Ministry of Health, National HIV/STI Pro- ner Center, 2013). Available at http://www.leitnercenter.org/
gramme Annual Report 2010 (Kingston, Jamaica: Jamaican news/94/.
Ministry of Health, 2011). Available at http://www.nhpja- 35. S. Thapar. UNDP-Supported Legal Aid Services for
maica.org/files/documents/AnnualReport2010.pdf. People Living with HIV in Tamil Nadu and Andhra Pradesh
19. Jamaica’s Country Coordinating Mechanism for HIV/ (New Delhi, India: UNDP, 2009).
AIDS Response (JCCMHAR), Transitional Funding Mecha- 36. Ibid, pp. 9—10.
nism (TFM); Single Country Applicant (Kingston, Jamaica: 37. Ibid, pp. 17—18.

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38. Ibid, p. 28.


39. S. Sondem, “National human rights institutions: The
Ghanaian experience,” Journal for European Issues Eurodia-
logue. 2012(16).
40. Ibid.
41. Ibid.
42. Human Rights Advocacy Centre and United Nations
Population Fund, Study on human rights abuses of female sex
workers by the Ghana police service (Accra, Ghana: Human
Rights Advocacy Centre, 2011).
43. Ibid.
44. Commission of Human Rights Act 1993, Act 456 (July
6, 1993).

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