HIV epidemics, particularly among key populations, continue to be fuelled by stigma and discrimination, gender inequality, violence, lack of community empowerment, violations of human rights, and laws and policies criminalizing drug use and diverse forms of gender identity and sexuality. These socio-structural factors limit access to HIV services, constrain how these services are delivered and diminish their effectiveness.
Thus, it is important to understand the varied political, geographic and social contexts in which key populations live and where HIV services for them are delivered. It also needs to be recognized that each key population group is heterogeneous, and effective programmes must account for this diversity.
Despite the challenges of marginalization, criminalization of the behaviour of certain key populations and in some settings direct human rights abuses, it remains necessary and feasible to deliver HIV-related services and to do so in ways that protect the safety and well-being of people from key populations and of service providers. Health-care providers have an ethical obligation to care for and treat people impartially and equitably. Programmes and countries can ensure confidentiality of services, facilitate access by people from key populations to mainstream health services, improve quality, train and sensitize health-care providers, and reduce stigma and discrimination. As safety allows, people from key populations should be encouraged and supported to participate in designing and delivering HIV prevention and response efforts. Despite legislative restrictions people from key populations in most countries persevere, still finding ways of acting in association to provide support, and they may also be reached online and through regional networks.
Integrating HIV and related health services into primary health care can contribute to increased and more equitable access to HIV services for key populations. To increase the effectiveness of HIV services in primary health care, health-care providers will benefit from understanding gender identity and the diversity of sexual behaviours and identities, as well as drug use and dependence, and how to address these when providing services. The health sector can take action to change the attitudes and behaviours of health-care providers to reduce stigma and discrimination, particularly that relating to homophobia, transphobia, sex work and drug use. Health-care workers should be given the necessary resources, training and support to provide services to key populations. At the same time, health-care providers should be held accountable when they fail to meet standards based on professional ethics and internationally agreed human rights principles (1). Monitoring and evaluation is important to ensure not only technical quality and impact of services but also the spirit in which they are provided and, thus, their acceptability to people from key populations.
“Critical enablers”, as used in this document, means strategies, activities and approaches that aim to improve the accessibility, acceptability, uptake, equitable coverage, quality, effectiveness and efficiency of HIV interventions and services. Enablers operate at many levels – individual, community, institutional, societal and national, regional and global. They are crucial to implementing comprehensive HIV programmes for key populations in all epidemic contexts. Critical enablers aim to overcome major barriers to service uptake, including social exclusion and marginalization, criminalization, stigma and inequity. If left unaddressed, such barriers will undermine the provision of HIV services, especially for key populations (2).
The barriers and critical enablers outlined in this chapter apply to both adults and adolescents in key populations. For adolescents from key populations, these factors may be further exacerbated by their rapid physical and mental development and complex psychosocial and socioeconomic vulnerabilities. Also, adolescents from key populations experience socio-structural barriers to services, notably policy and legal barriers related to age of consent. Those close to people from key populations, including partners and children, also can experience stigma and discrimination and so face the same difficulties in access to services. Thus, including dependents in the provision of HIV services can be important.
Successful implementation of critical enablers requires collaboration across different sectors.
The health sector has an important role to play, but successful implementation of critical enablers requires collaboration across different sectors, such as health, justice, housing, welfare and labour. It also requires multiple partners from government, civil society and the private sector. Full involvement of key populations and people living with HIV also is crucial (3, 4).
This chapter outlines a range of barriers that compromise access to appropriate and good-quality HIV services for key populations, identifies critical enablers to overcome these barriers (as illustrated in ) and makes a number of good-practice recommendations. These good practice recommendations are based on earlier WHO documents addressing key populations. While these barriers and enablers are interrelated, we attempt to discuss each individually.
Critical enablers for key populations.
5.1. Law and policy
5.1.1. Legal barriers
Sixty percent of countries report having laws, regulations or policies that are barriers to effective HIV services for key populations and vulnerable groups (5). In particular, over 100 countries criminalize some or all aspects of sex work. At least 76 countries criminalize sexual relations between people of the same sex. Indeed, some countries impose the death penalty for convictions under such laws.
Additionally, transgender people are legally unrecognized in many countries (5) and face restrictive policies toward their gender expression. In many settings punitive policies on drug use call for harsh penalties for the possession of small amounts of drugs for personal use, and in some settings policies mandate compulsory detention as “treatment” for people who use or inject drugs (5). In many prisons and other closed settings, HIV services are sub-standard or entirely lacking (6).
While laws vary, in many settings adolescents under 18 years of age are classified legally as minors and, therefore, must have parental consent for medical care, including HIV-related services. Such laws and policies can be barriers to or can discourage adolescents from seeking services (7). These restrictions may create complex dilemmas for providers who endeavour to act in the best interest of their clients but who may have concerns about their own legal liability as well as for the safety of their young clients.
5.1.2. Critical enablers
Reviewing laws and policies
Laws and policies can help to protect the human rights of key populations – both those living with HIV and those at risk for HIV. Legal reforms, such as decriminalizing sexual behaviours and drug use, legal recognition of transgender status, and lowering the age of consent and considering exceptions to a standard age of consent policy (such as mature minors), are critical enablers that can change a hostile environment for key populations to a supportive environment (8). Specific consideration should be given to such legal reforms as part of any revision of policies or programmes for key populations. For example, in many countries possession, use and sale of clean needles and syringes or of condoms remains justification for arrest. If so, this warrants review.
Decriminalizing the behaviour of key populations
Without protective policies and efforts to decriminalize the behaviour of key populations, barriers to essential health services will remain.
Supporting the health and well-being of key populations whose sexual behaviours, drug use, gender expression or perceived sexual orientation are currently criminalized may require changing legislation and adopting new policies and protective laws in accordance with international human rights standards. Without protective policies and decriminalization of the behaviour of key populations, barriers to essential health services will remain; many people from key populations may fear that seeking health care will expose them to adverse legal consequences (9).
Laws, legal policies and practices should be reviewed and, where necessary, revised by policy-makers and government leaders, with meaningful engagement of stakeholders from key population groups, to allow and support increased access to services for key populations (10, 11, 13).
Good practice recommendations concerning decriminalization
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ALL KEY POPULATION GROUPS
Countries should work toward decriminalization of behaviours such as drug use/injecting, sex work, same-sex activity and nonconforming gender identities, and toward elimination of the unjust application of civil law and regulations against people who use/inject drugs, sex workers, men who have sex with men and transgender people (10, 11, 12, 13, 14). |
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MEN WHO HAVE SEX WITH MEN
Countries should work toward developing policies and laws that decriminalize same-sex behaviours (11). |
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PEOPLE WHO USE AND/OR INJECT DRUGS
Countries should work toward developing policies and laws that decriminalize injection and other use of drugs and, thereby, reduce incarceration. Countries should work toward developing policies and laws that decriminalize the use of clean needles and syringes (and that permit NSPs) and that legalize OST for people who are opioid-dependent. Countries should ban compulsory treatment for people who use and/or inject drugs ( 12, 13, 14).
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Good practice recommendations concerning age of consent policies and laws
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ADOLESCENTS FROM KEY POPULATIONS
Countries are encouraged to examine their current consent policies and consider revising them to reduce age-related barriers to HIV services and to empower providers to act in the best interest of the adolescent ( 7). It is recommended that sexual and reproductive health services, including contraceptive information and services, be provided for adolescents without mandatory parental and guardian authorization/notification ( 15).
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Case study: Decriminalizing drug use in Portugal
GIRUBarcelos, APDES, Portugal
http://www.apdes.pt/en/
As of 2012, 21 countries globally had taken steps to decriminalize drug use and possession (16). For example, Portugal changed its legislation in 2001 to turn possession of controlled drugs into an “administrative offence”, with those caught with drugs for personal use being sent to a “dissuasion board” rather than face prosecution and possible jailing. An independent study (17) examined the impact of the changes and found that:
The number of drug users in treatment expanded from 23 654 in 1998 to 38 532 in 2008.
Between 2000 and 2008 the annual number of new cases of HIV among drug users fell from 907 to 267, a decrease attributed to the expansion of harm reduction services.
Contrary to predictions, major increases in drug use did not take place; instead, evidence indicated reductions in problematic use, drug-related harms and overcrowding of the criminal justice system.
Community organizations continue to be essential to tackling stigma and discrimination and improving access to services. Agência Piaget para o Desenvolvimento (APDES), founded in 2004, works with vulnerable people and communities on access to health care, employment and education, seeking to empower these populations and reinforce social cohesion. They run GIRUBarcelos, a multidisciplinary outreach team working primarily with heroin and cocaine users and sex workers in northern Portugal, focusing their efforts on harm reduction. Through their efforts, discrimination towards people who use drugs, including by health-care professionals, has been reduced following regular meetings, mediation efforts between communities and service providers, debates and a radio programme on a local radio station entitled “GIRU Conversations”. The presence of a peer educator on the team and the constant involvement of people who inject drugs are the cornerstones of GIRUBarcelos' interventions and considered critical to its success.
Addressing other policy issues for key populations
Along with decriminalization efforts, there are other policy changes that can enable people from key populations to exercise their human and health rights. Some common current policies limit access to the justice system and to health services. Key considerations are these:
Recognize transgender people in the law. For transgender people the legal recognition of preferred gender and name may be important to reduce stigma, discrimination and ignorance about gender variance. Such recognition by health services can support better access, uptake and provision of HIV services (11).
Case study: In Uruguay a national dialogue supports legislative change
In 2010 the United Nations Development Programme (UNDP) launched the Global Commission on HIV and the Law to develop actionable, evidence-based answers and recommendations for a response to HIV that protects and promotes the human rights of people living with and who are more vulnerable to HIV (http://www.hivlawcommission.org). The Commission's work focuses on generating constructive dialogues between civil societies and governments on issues related to HIV and the law, going beyond identifying problems to develop and share practical solutions.
In Uruguay a national inter-sectoral commission was organized jointly by the Ministry of Health, the Ministry of Social Development, trade union organizations, the National Council for HIV/AIDS Response (CONASIDA), the Federation of Sexual Diversity and the Parliamentarian Commissioner for Prisons. This commission called for a national dialogue on HIV and human rights to harmonize and improving national legislation related to the HIV response. Conducted with the strong support of the UNDP Regional Office, UNFPA and UNAIDS, the two-month initiative provided an opportunity for people affected by and vulnerable to HIV to present evidence on issues that have been silenced or were unknown. Individuals and civil society organization presented almost three dozen selected cases of human rights violations. Those involved, in particular civil society organizations, provided technical support for the development and presentation of HIV-related issues of sexual orientation and gender identity; discrimination in health services, employment and education; sex work; police brutality; access to treatment; intellectual property; and the human rights of people living with HIV.
This national dialogue contributed to the on-going development of a new, comprehensive HIV law. The final report of the dialogue, presented to parliament in May 2014, identifies gaps in legislation, laws detrimental to the HIV response and the lack of implementation of laws that would promote the response. In addition, it suggests best practices and makes recommendations from a human rights perspective. The advocacy and mobilization of civil society , in particular people living with HIV and lesbian, gay, bisexual and transgender groups have driven this dialogue, along with the concerted efforts and the partnerships of UN agencies, the government and academia.
CONASIDA-CMM (National Council for the Prevention and Control of HIV/AIDS – Country Coordination Mechanism) will implement and follow up the main recommendations from the dialogue to support the HIV Law Project. Additionally, the recently developed National Institute on Human Rights in Uruguay, also affiliated with the dialogue, is now committed to contributing, monitoring and advocating the implementation of the updated laws.
Improve access to justice and legal support for key populations. Policies that criminalize and punish the behaviour of key populations constrain people from obtaining justice and legal services. Policies and procedures are needed to ensure that individuals from key populations can report rights violations such as discrimination, gender-based violence, issues with policing, violations of informed consent, violations of medical confidentiality and denial of health-care services. Reporting options beyond going to the police will encourage reporting of human rights violations. For example, persons from key populations can be trained as paralegals; an organization that works with key populations can serve as a third-party reporter of complaints.
Improve policies on access to health services and information. Ensuring that people from key populations are aware of their legal and human rights as individuals, specifically their right to health, can increase their access to health services. Since key populations are often the target of exploitation, marginalization, criminalization, stigma and discrimination, programmes are particularly needed to ensure that key populations know their legal and human rights, including applicable protective laws and where and how to obtain legal services and report violations. Health literacy, sexuality education and support programmes can help improve awareness (18). If better informed, key population groups can better organize to advance their rights and raise awareness of their rights, needs and the policies and legal issues that critically affect them (10, 19, 20).
Additionally, countries can review laws that penalize health-care providers for working with key populations (e.g. laws that make it illegal for outreach workers to carry condoms or clean needles and syringes for distribution).
Law enforcement can play an important role by ensuring that the human rights of key populations are not violated. Police should receive continual training on ways to support – or at least not to impede – key populations' access to essential health services, including not arresting people leaving drug treatment clinics; avoiding confiscation of drug treatment medication; avoiding surveillance of harm reduction centres; and not using possession of clean needles or condoms to justify arrest. Systems to promote good policing practices and to provide safe avenues for reporting human rights violations will help ensure that police are protecting both the public health and the human rights of all persons. Ensuring that medical records are kept confidential is one step that health-care providers can take to increase trust between health services and key populations.
Good practice recommendations for other policy issues
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ALL KEY POPULATION GROUPS
Countries should work toward developing non-custodial alternatives to incarceration of drug users, sex workers and people who engage in same-sex activity ( 12). It is recommended that third-party authorization requirements be eliminated, including spousal authorization requirements for women obtaining contraceptives and related information and services ( 15).
Additional remark: It is important that countries secure political commitment, with appropriate investment in advocacy and adequate financial resources for HIV-related key population programmes and health services. |
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PEOPLE IN PRISONS AND OTHER CLOSED SETTINGS
As countries work toward developing non-custodial strategies, targets can be set for reducing prison overcrowding generally ( 12).
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SEX WORKERS
The police practice of using possession of condoms as evidence of sex work and grounds to arrest sex workers should be eliminated ( 10). The wide latitude of the police to arrest and detain sex workers without cause, including police extortion, should be eliminated ( 10).
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TRANSGENDER PEOPLE
Countries should work towards legal recognition for transgender people ( 11).
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Case study: In Indonesia methadone maintenance treatment in prison
Australia Indonesia Partnership for HIV (AIPH) – HIV Cooperation Program for Indonesia (HCPI)
Methadone maintenance treatment (MMT) for incarcerated injecting drug users was pilot-tested in Kerobokan Prison, Bali, in 2005 after prison officials visited MMT programmes in Australian prisons. Accomplishments of the Kerobokan Prison pilot project include:
Establishment of comprehensive harm reduction services (including MMT) and high levels of participation among prisoners with opioid dependence;
The scaling-up of MMT, education and care, support and treatment services in 11 other prisons, detention centres and parole services; Kerobokan prison provides ongoing mentoring to many of these facilities;
High levels of integration with other community health services in Bali, ensuring smooth transition from prison to community MMT programmes (and vice versa) and early or continuing access to HIV treatment.
Additionally, HIV testing and treatment now have been efficiently implemented in many prisons. More than 90% of high-risk prisoners have been tested, and a high proportion of those testing positive have begun ART.
As part of mainstreaming this initiative, in 2013 the Ministry of Health (MOH) and the General Directorate of Corrections signed a memorandum of understanding that the MOH would fully cover the cost of methadone. HCPI continues to provide training and limited financial support.
5.2. Stigma and discrimination
5.2.1. Barriers
People from key populations are often particularly subjected to stigma, discrimination and negative attitudes related to their behaviour – and doubly so if also living with HIV – by their families, communities and health workers. Such stigma is common in many health facilities and law enforcement services. It may seem to be tacitly endorsed by the lack of national laws and policies against discrimination. The effects of such HIV-related stigma and discrimination against key populations can be delayed HIV testing, concealment of positive serostatus, and poor uptake of HIV services (21, 22, 23, 24, 25). It can undermine the efforts of national health programmes to effectively link people to HIV care and to engage and retain them in long-term care (26, 27).
Within the health sector stigma and discrimination can take many forms at the individual and systems levels. The lack of training and educational programmes to inform health workers of the needs, health issues and strategies and interventions for key populations contributes to marginalization. It leaves providers ill-equipped to address health needs and perpetuates stigmatizing and discriminating practices, even to the point of refusing services.
5.2.2. Critical enablers
Efforts to reduce stigma and discrimination at a national level, such as promoting antidiscrimination and protective policies for all key populations, can foster a supportive environment, particularly within the health-care and justice systems (20). Policies are most effective when they simultaneously address individual, organizational and public policy factors that enable or allow stigma and discrimination (28). Programmes, within and outside the health sector, need to institute anti-stigma and antidiscrimination policies and codes of conduct. Monitoring and oversight are important to ensure that standards are implemented and maintained. Additionally, mechanisms should be made available to key populations to anonymously report occurrences of stigma and/or discrimination when they try to obtain health services.
Good practice recommendations for implementing and enforcing anti-stigma and antidiscrimination and protective policies
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ALL KEY POPULATION GROUPS
Countries should work towards implementing and enforcing antidiscrimination and protective laws, derived from human rights standards, to eliminate stigma, discrimination and violence against people from key populations. Policy-makers, parliamentarians and other public health leaders should work together with civil society organizations in their efforts to monitor stigma, confront discrimination against key populations and change punitive legal and social norms ( 3, 10, 11, 12, 13, 19).
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Providing key population-friendly services
It is important to make health services available, accessible and acceptable to key populations and to tailor these services to their needs (20). Interventions and services for key populations, including adolescents from key populations, can adopt principles friendly to key populations, paying particular attention to accessibility and the expertise and attitudes of staff members (7).
Approaches to making services friendly to key populations include:
integrated health services, involving co-locating interventions and cross-training providers, such as providing ARVs at drug treatment centres;
scheduling service hours that are regular, dependable and suit the intended clients;
locating services strategically where key populations congregate or transit;
involving the peer community in service development, promotion, delivery, and monitoring and evaluation;
training staff to work with different key populations;
taking steps to ensure that law enforcement activities do not interfere with clients' access to HIV services (
11,
12,
13,
20).
Case study: Sensitizing health-care workers in South Africa
South African National AIDS Council and the South African Department of Health, South Africa http://www.health.gov.za/ and http://www.sanac.org.za
Discrimination by public health-care providers towards people from key populations and “unfriendly” health facilities are barriers to access to services, contributing to poorer health outcomes (29). A multi-partner project in South Africa has developed an integrated approach to sensitizing health-care providers on issues affecting key populations and to empower public health staff members to interact appropriately (regarding both their attitude and their clincial expertise) with people from key populations. Trainings have been conducted in preparation for the implementation of the National Operational Guidelines for HIV, STIs and TB Programmes for Key Populations in South Africa. The full training programme includes in-person training and mentoring. Thirty trainers participated in an initial training of trainers (TOT) workshop and were linked to local training centres and health facilities. In turn, they trained 420 health-care workers in six months.
Where these trainings took place, people from key populations have reported improvements in health-care workers' attitudes. Communities' trust has increased, and so has use of health facilities, where the sensitization training has been linked with peer outreach and the prevention activities of civil society organizations. Further evaluation is planned to inform scale-up.
Training and sensitizing health workers
Creating inclusive health services requires sensitizing and educating providers and other staff members in health care and social services. This can be done in both pre-service and in-service training, through on-the-job support and supervision, and by creating an organizational norm of inclusiveness and non-discrimination.
Attitudes. Health-care providers working with adults or adolescents from key populations should be non-judgemental, supportive, responsive and respectful and should understand the issues that people from key populations face (7
10, 11, 20). Training, with the involvement of key population representatives and groups, can be developed to sensitize and educate health workers on issues specific to key populations, non-discriminatory attitudes and practices, and key populations' right to health, confidentiality, non-coercive care and informed consent.
Skills. It is important that health workers be able to respond to the specific needs of key populations and provide quality services, know what interventions, tools and materials are available to provide information, can advise on HIV risk reduction strategies, and know how to support treatment adherence and retention in care (20).
Improving and maintaining providers' attitudes and skills is a continual process consisting of multiple components such as formal training events, job aids, supportive supervision, training follow-up and mentorship. Multi-disciplinary trainings and work environments can strengthen linkage to community-based providers so that referrals and adequate follow-up are more available. Particularly where there are workforce shortages, it is important that all providers receive adolescent-specific training, including lay counsellors, to enable task-shifting (7).
Health services should be made available, accessible and acceptable to people from key populations, based on the principles of medical ethics, avoidance of stigma, non-discrimination and the right to health (3, 7, 10, 11, 12, 13, 15).
Good practice recommendations for providing key population-friendly services
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ADOLESCENTS FROM KEY POPULATIONS
Services for adolescents from key populations should include psychosocial support, through counselling, peer support groups and networks, to address self-stigma and discrimination. Additional provision of counselling for families, including parents – where appropriate and requested by the adolescent – may be important to support and facilitate access to services, especially where parental consent is required ( 7). Health-care providers should ensure adolescents from key populations know their rights – to confidentiality, health, protection and self-determination – so that they can advocate for themselves and seek the types of support they are entitled to ( 7). Services should provide developmentally appropriate, comprehensive information and education, focusing on skills-based risk reduction ( 7). Services should be safe spaces that increase protection from the effects of stigmas and discrimination, where adolescents can freely express their concerns, and where providers demonstrate patience, understanding, acceptance and knowledge about the choices and services available to the adolescent ( 7).
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Case study: In South Africa expanding competence to serve men who have sex with men
Health4Men, Anova Health Institute
www.anovahealth.co.za
The Health4Men project addresses men's diverse sexual health needs, particularly those of vulnerable and marginalized groups including men who have sex with men. The project's goal is to institutionalize competence in serving men who have sex with men in existing public clinics. The process involves:
sensitization, to change attitudes
medical training, to expand knowledge
mentoring, to translate knowledge into skill
on-going technical support including consultation, training and mentoring and provision of educational materials.
Under the leadership of the Anova Health Institute, Health4Men has developed two MSM Centres of Excellence, in Cape Town and Johannesburg, each supported by satellite clinics. The clinics provide services for men who have sex with men, while outreach activities stimulate demand for services.
Health4Men has developed innovative training content and materials to equip nurses, counsellors and medical officers to respond to the special needs of men who have sex with men in a sensitive and empathic manner. In partnership with provincial departments of health, the project establishes at least one Regional Leadership Site in each province to serve as the hub for competency development; nurse mentors and outreach teams operate from these sites. As of mid-2014, over 3000 health workers have been trained, 584 clinicians have been mentored and 64 clinics in four provinces have been declared medically competent to serve men who have sex with men. By the end of 2014, there will be over 120 competent sites across six provinces and, by the end of 2015, over 160 sites nationally.
5.3. Community empowerment
5.3.1. Barriers
Key populations often have little or no control over HIV risk factors driven by the legal, political and social environment and the context of their lives. For instance, sex workers are frequently exposed to HIV and other STIs, but they may not have the power to negotiate consistent condom use (30, 31). This lack of control is exacerbated if people are unaware of available HIV-related services and of their legal and human rights, specifically their right to health, and what to do if these rights are violated.
In particular, few young people from key populations receive adequate information and education for their sexual lives. Instead, they receive conflicting or confusing messages about gender and sexuality. This leaves young people vulnerable to coercion, abuse and exploitation and to unintended pregnancy and STIs, including HIV (18). The lack of community empowerment, too, and of community-wide awareness and knowledge limits the overall effectiveness of interventions to reduce HIV risk (10, 20).
5.3.2. Critical enablers
Evidence shows that health policies and programmes are more effective and have a more positive impact on health outcomes when affected populations take part in their development (32). Community empowerment is a guiding principle for all HIV programming and activities. Community empowerment is a collective process that enables key populations to address the structural constraints to health, human rights and well-being; make social, economic and behavioural changes; and improve access to health services (10). Community empowerment can foster the wider reach and greater effectiveness of services for key populations (10). Community empowerment has been undertaken in various settings, such as for sex workers ().
Key elements of community empowerment among sex workers (20). While this figure refers to sex workers, these community empowerment elements could be adapted for other key populations.
Community empowerment is a critical enabler for improving key populations' living conditions, developing strategies for health and rights interventions and redressing violations of the human rights of people from key populations. Community empowerment can take many forms, such as meaningful participation of people from key populations in designing services, peer education, implementation of legal literacy and service programmes, and fostering key population-led groups and key population-led programmes and service delivery (10, 20).
Key populations are heterogeneous and mobile. Therefore, to be effective, programmes must account for the diverse legal, political, social and health environments in which people from key populations live and must remain sensitive to a diversity of cultures (20). This flexibility, responsiveness and adaptability are essential to community empowerment initiatives. Initiatives should be able to evolve over time to meet the changing needs of key populations.
Programmes led by key-population organizations
It is important to foster and support services, facilities and research led by organizations of people from key populations. Key population-led organizations, collectives and networks can play key roles in training the staffs of health services, police and social service agencies, facilitating interaction with the communities of key populations, and managing services. In fact, they may have special strengths in providing community-based and outreach services.
Case study: Building health literacy among young injecting drug users in Mexico
Programa de Política de Drogas (Espolea, A.C), Mexico
http://www.espolea.org/
Espolea, a youth-led organization in Mexico City, opened its Drug Policy and Harm Reduction Programme in 2008 and has since developed online and face-to-face channels to provide objective information about drugs and risk reduction to young people ages 15–29 years.
The organization has found that information is most effective when disseminated at places where young people use drugs, particularly electronic dance music festivals, rock concerts and cultural gatherings. At these events Espolea sets up a stand as a safe space for young people to obtain information about drugs that may be being consumed. The organization also facilitates workshops in schools and in communities with concentrations of most-at-risk young people.
Espolea has an active outreach strategy, using social media, including Facebook and Twitter as well as Internet blogs. One blog – www.universodelasdrogas.org – serves as a databank on drugs and has become the axis of the programme's harm reduction campaign. Staff members, collaborators, and young people produce the information. Printed materials offer facts and recommendations about nightlife, alcohol consumption, risky sexual behaviours, HIV and other STIs.
Meaningful participation
Even if key population-led organizations are not taking the lead, the meaningful participation of representatives of the community in programming is critical to assure the appropriateness and acceptability of services to the intended clientele. It is also important for building trusting relationships between the community and service providers, who may be accustomed to establishing the parameters by which services are provided and prescribing how relationships or partnerships are to be conducted (20). Meaningful participation means that key populations: 1) choose whether to participate; 2) choose how they are represented, and by whom; 3) choose how they are engaged in the process; and 4) have an equal voice in how partnerships are managed.
Policies and programmes are more effective when affected populations take part in their development.
Meaningful participation can mean not only having a voice in decision-making but also contributing to service delivery. For example, adolescents from key populations can be given opportunities, empowered and trained as peer educators, counsellors, trainers and advocates (33). Peer education is a successful strategy for improving young people's HIV knowledge, testing and counselling, and linking to care; it is more likely to lead to behaviour change than many other interventions. Additionally, peer education can help to mobilize communities and social networks (34).
Partnerships are crucial, but they must be built and maintained in a way that risks no harm to the persons involved. The success of interventions that facilitate participation is measured not only by effectiveness of outcomes but also by the degree to which key populations are engaged and by the process and mechanisms of engagement (35).
Key population-led groups and organizations should be made essential partners and leaders in designing, planning, implementing and evaluating health services.
Good practice recommendations for community empowerment
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ALL KEY POPULATION GROUPS
Programmes should implement a package of interventions to enhance community empowerment among key populations ( 10, 11, 12, 15). Programmes should be put in place to provide legal literacy and legal services to key populations so that they know their rights and applicable laws and can receive support from the justice system when aggrieved ( 10, 11, 12, 15).
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MEN WHO HAVE SEX WITH MEN
Men's health groups and organizations of men who have sex with men are essential partners in providing comprehensive training on human sexuality and delivering services and so should be actively engaged. They also can facilitate interaction with members of sexually diverse communities, thereby generating greater understanding of their emotional health and social needs and the cost of inaction against homophobia ( 11).
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PEOPLE WHO USE AND/OR INJECT DRUGS
Community empowerment and mobilisation are important elements in addressing the stigma and marginalisation of people who inject drugs within the health sector. Involvement of people who inject drugs in planning and delivering services is crucial, in particular peer education and training on safer injecting, harm reduction, and broader issues regarding their rights and health ( 25, 39).
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TRANSGENDER PEOPLE
Organizations of transgender people are essential partners in delivering comprehensive training on human sexuality and gender expression. They also can facilitate interaction with members of communities with diverse gender identities and expressions, thereby generating greater understanding of their emotional health and social needs and the cost of inaction against transphobia ( 11).
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ADOLESCENTS FROM KEY POPULATIONS
It is recommended that sexuality education programmes for adolescents, both in and outside of schools, be scientifically accurate and comprehensive and include information on contraceptives, including how to use them and where to get them (15). |
Case study: In Nepal meaningful participation of people who inject drugs
Bridging the Gap: Health and Human Rights for the Key Population, Naya Goreto, Nepal www.nayagoreto.org.np
Recognizing the lack of specific laws or policies in Nepal to support people who inject drugs and the lack of services at the community level, Naya Goreto created “Bridging the Gap: Health and Human Rights Programme for the Key Population”. This programme aims to engage stakeholders across the spectrum, from parliamentarians to local councillors, public health officials to health volunteers, in advocacy on issues of concern to people who inject drugs.
Naya Goreto emphasizes the meaningful participation of people who inject drugs at all levels of the programme. More than 200 people from the community have been trained to lead activities ranging from situation analysis to advocacy campaigning and programme monitoring. The programme also has brought together various stakeholders, including former politicians, councillors, public health personnel, and the community to create a committee that lobbies for the health and human rights of people who inject drugs. Empowerment activities have included the following:
conducting advocacy programmes in stigma-free small group environments, such as meetings at a local cafe, which make possible more personal and meaningful discussion of issues;
forming key population-led networks such as Lalitpur Drug User's Advocacy Network;
linking people who inject drugs with experts and other concerned stakeholders for easy access to adequate information on programmes and budgets;
mobilization of trained people from the community to participate in consultation meetings with key governmental bodies, lobbying with duty bearers for the health and human rights of people who inject drugs.
Naya Goreto has built strong partnerships among people who inject drugs, creating a shared feeling of solidarity to collectively address the issues that directly affect them. Such issues are now included in the yearly action plans of local government and civil society organizations. Annual budgets have been secured from local government bodies to conduct drug awareness programmes by and for communities. There is now a seat for a community member on the District AIDS Coordination Committee. At a civil society level, there has been a rise in positive community awareness – for example, through national media – of issues that affect people who inject drugs.
Case study: Youth-led advocacy, leadership, and empowerment of young key populations
Youth LEAD, NewGen leadership programme, Asia–Pacific
http://youth-lead.org/
Youth LEAD is a network of and for young key populations most affected by HIV in 20 countries across Asia and the Pacific. In 2011 Youth LEAD created the NewGen Asia leadership course, a five-day youth-led programme for young people in advocacy, leadership, and empowerment. The course was pilot-tested in the Philippines; evaluations led to revisions and the development of training materials. A seven-day training of trainers took place the following year with 21 participants from five countries. This led to the implementation of NewGen and the adaptation of national trainings in Myanmar, the Philippines and Indonesia.
NewGen uses a range of participatory activities to help young people to think critically about the way in which social, political and institutional environments influence the well-being of members of key populations. Participants learn formal advocacy and communication skills and the use of data through speech-making and participation in meetings as representatives of their communities.
Overall, participants rate NewGen very highly. Participants find the training particularly useful for learning new leadership and advocacy skills, and they enjoy the participatory training methodology. Through working and learning together, participants develop a sense of community. Course graduates have helped establish new community networks of young people from key populations in many countries, often through social media.
5.4. Violence
5.4.1. Barriers
Violence against people from key populations has been shown to be a risk factor for HIV acquisition (36). Such violence is common. It can take various forms – physical, sexual or psychological (37). Violence is fuelled by the imbalance in the power dynamics of gender and by prejudice and discrimination against persons perceived to depart from conventional gender and sexuality norms and identities. Also, multiple structural factors influence vulnerability to violence, including discriminatory or harsh laws and policing practices and cultural and social norms that legitimate stigma and discrimination.
Women, especially young women, from key populations, including female drug users, female sex workers and transgender women, experience particularly high rates of physical, sexual, and psychological abuse (38, 39, 40). Reported rates of violence against sex workers and transgender women are high (41, 42, 43) but nonetheless are likely to be underreported where certain behaviours of key populations are illegal.
Homophobic violence, too, is increasing in some countries, as more policies and laws have banned same-sex activity and made it a criminal offense (44). This is likely to increase HIV risk (45).
5.4.2. Critical enablers
Efforts to address violence against people from key populations must involve other sectors along with the health sector. Together, they must create an enabling environment to promote physical, sexual, and emotional well-being and safety. Critical enablers include mechanisms for documenting and monitoring violence, training people from key populations and other stakeholders to understand human rights and fostering the accountability of law enforcement officials to prevent and respond to violence and infringements of human rights (46).
Prevention of violence against key populations
Law enforcement practices can increase the risk of violence faced by key populations. Indeed, law enforcement officers themselves can be perpetrators. Work with law officers can involve training on the human rights of key populations as well as promoting accountability for rights-based law enforcement (46). Efforts to prevent violence can be promoted through advocacy for law and policy reforms that protect the rights and safety of key populations, by increasing awareness of reporting mechanisms and disciplinary action, by conducting sensitization workshops for people with pivotal roles in the community (e.g. government officials, police, media, health-care workers and religious leaders), through the creation of safe spaces, and by creating early warning and rapid response mechanisms with the involvement of key population community members, health workers and law enforcement officials. Integrating community representatives into these efforts also helps to create channels of communication among key populations, civic officials and police (47).
Support for persons experiencing violence
Those who experience sexual violence need timely access to post-rape care, including emergency contraception, post-exposure prophylaxis for HIV and other STIs, hepatitis B immunization and psychosocial care and support, as well as referrals to police and legal services. HIV prevention, treatment and care should include clinical and psychosocial care and support for survivors of violence, in line with WHO guidelines for responding to sexual violence (46). Survivors may need treatment for physical injuries and longer-term mental health care. Health services also can document medico-legal evidence, which can assist survivors' access to justice. Supportive services also include hotlines staffed by trained peer counsellors to offer psychosocial support as well as crisis response interventions, with multi-disciplinary teams, linking survivors to various services and safe spaces (10).
It also is important to monitor and document incidents of violence, both as evidence for advocacy and to inform programme design. Documenting the levels of violence faced by key populations is often the first step in creating awareness.
Good practice recommendations for reducing violence
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PEOPLE IN PRISONS AND OTHER CLOSED SETTINGS
Prison authorities should provide adequate staffing, effective surveillance, disciplinary sanctions, and education, work and leisure programmes for prisoners. Prisons and other closed settings and their staffs should make efforts to change institutional culture that tolerates rape and other sexual violence. Prisons should adopt multiple approaches to combating sexual violence, including policies and programmes for prevention (e.g. prisoner education, classification, and structural interventions such as better lighting, better shower and sleeping arrangements), staff training, investigation, disciplinary action, victim services (e.g. medical and mental health) and documentation of incidents ( 12).
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Case study: Building partnerships in India to address violence and improve legal literacy
The Karnataka Health Promotion Trust (KHPT)
http://www.khpt.org/
Addressing violence against sex workers is complex and requires partnership among like-minded organizations. The Karnataka Health Promotion Trust (KHPT) has been working on HIV prevention among sex workers in Karnataka, India, for the last 10 years. Sex workers have strongly expressed the need to prevent and respond to violence. KHPT has sensitized law enforcement police and the judiciary and advocated that they not perpetrate or condone violence against sex workers. In partnership with KHPT:
The state's Women and Child Welfare Department made services for violence against women available to sex workers.
Community-based organizations worked with sex workers in 30 districts to alert them to their rights.
The Alternative Law Forum and the National Law School of India developed and conducted legal literacy training for sex workers.
The Centre for Advocacy and Research, a nongovernmental organization, conducted media advocacy and trained sex workers as media spokespersons to talk about the violence they face, their resilience and actions to prevent and respond to violence.
