The challenge of HIV prevention

The challenge of HIV prevention In spite of recent government and civil society efforts that have noticeably improved AIDS-related morbidity and mortality, the expanding numbers of people infected with HIV is a major concern. A welcome increase in access to AIDS treatment has been offset by a dangerous decline in HIV prevention interventions. In its 2006 Report on the Global AIDS Epidemic, UNAIDS asserts that implementation of comprehensive HIV prevention measures could avert 28 million new infections between 2005 and 2015 - more than half of those projected to occur during this period. Yet, after more than 25 years since the epidemic began, those populations most vulnerable to HIV infection have not yet been effectively reached by prevention interventions, not necessarily because of lack of efficient approaches, but rather - and most unfortunately - because political commitment/willingness/interest is lacking among many policy-makers to implement strategies that have proven successful all over the world. This is of particular importance for those populations experiencing rapidly rising or already high HIV infection rates. These include sex workers (SW), men who have sex with men (MSM, including gay men, transvestites, transsexuals, and bisexual men), and injecting drug users (IDU). These groups are the focus of this technical guidance. While it is well understood that these particular groups are more susceptible to HIV infection because of their behavioral, cognitive, and programmatic environments, they are among the most stigmatized and discriminated-against populations in society. In fact, they are often victims of “layered” stigma. On top of the already existing social stigma against SW, MSM, and IDU, the association with AIDS, as well as with race, gender, and poverty contributes additional layers of discrimination. In most countries SW, MSM, and IDU are excluded from meaningful participation in the decision-making processes that design, implement, monitor, and evaluate HIV prevention interventions. As a result, resources directed to their specific HIV prevention needs and interests are vastly disproportional to their risk of becoming infected. Work around the world has shown that effective prevention strategies focusing on those most vulnerable populations must necessarily adopt an approach that combines: Community-determined and led actions to change individual and social behaviors that reduce risk of HIV infection; A guarantee of equal access to comprehensive quality health services, including care, support and treatment; and Promotion of respect for fundamental human rights, while empowering vulnerable groups to focus on the “enabling environment,” particularly the underlying conditions that make marginalized communities vulnerable to HIV/AIDS. The challenge lies in reaching a balance of outputs from each of these three strategic components - dealing equally and simultaneously with individual knowledge and behavior; providing access to quality, relevant, and friendly counseling and health services; and empowering the community to address the underlying structural barriers that increase their vulnerability. All the while, program design must be predicated on protection of human rights, considering the specific needs and interests of the served population. Ensuring success in the four strategic areas poses one of the biggest challenges in intensifying the scale and scope of HIV prevention. International Efforts In 2001, during the UN General Assembly Special Session (UNGASS) on HIV/AIDS, a Declaration of Commitment on HIV/AIDS identified the prevention of HIV infection as the key response to the epidemic (see Box 1). To address crucial prevention issues, signatory governments to the 2001 Declaration committed themselves to a detailed set of targets and programs. As follow-up to the 2001 Declaration, UNAIDS published the “Policy Position Paper for Intensifying HIV Prevention” in 2005, a key resource document presenting a set of principles for effective HIV prevention (see Box 2). Similarly, Pathfinder International’s 2005-2008 Organizational HIV/AIDS strategy argues that effective HIV programming must (see Appendix A): Be based on evidence; Provide comprehensive and integrated services; Protect individual human rights; Provide universal access to quality HIV prevention, treatment, and care. Despite the apparent political commitment demonstrated by these declarations, most governments failed to achieve the agreed-upon set of both international and national indicators by 2006. That year the UN’s new draft declaration voiced concern about the slow progress, but did little to demonstrate real political leadership in the fight against the pandemic. The document did mention the concept of “vulnerable groups” and proposed intensified efforts to eliminate all forms of discrimination and to ensure fundamental freedoms, as well as to scale up prevention, treatment, care and support efforts. But, by not naming the groups that have the highest vulnerability to HIV/AIDS, the UN Draft Declaration failed to address their specific needs and to counter the stigma and discrimination fueling the epidemic, thereby further violating people’s fundamental human rights . Likewise, although the 2006 Draft Declaration acknowledged the current feminization of the epidemic worldwide, conservative governments have prevented efforts to recognize the specific need to empower girls to protect themselves from HIV infection, e.g. through education and laws punishing rape and sexual coercion. Some conservative governments continue to promote abstinence only and faithfulness programs, despite absence of scientific proof of their effectiveness. In fact, sound evidence shows that they cause infection and death by ignoring the need for youth and married women (two highly vulnerable groups) to prepare themselves for safer sex. To prioritize such strategies without promoting condom use promotes the spread of the AIDS virus and other sexually transmitted infections (STI). Such limited interventions are far removed from the reality of most countries and cultures. Consequently, organized HIV/AIDS civil society groups and some governments have increased their own commitment to promote, maintain, and surpass the important achievements of past years. More than ever, acknowledgment of human rights and the recognition that sexuality and reproduction are included in those rights, must be the ethical paradigm, as well as the practical necessity, in the design, implementation, and strengthening of HIV/AIDS prevention interventions, particularly with vulnerable groups, like SW, MSM, and IDU. Strategies and Tactics Thinking strategically - risk versus vulnerability In the first decade of the AIDS epidemic, the term “at risk group” was applied to those social groups in which the first cases of the disease were diagnosed - MSM, SW and IDU. Individuals thus labeled had their humanity questioned, were presented as the only ones susceptible to the disease, and were considered dangerous. As a result, the general population failed to identify themselves as “at risk.” Not surprisingly, that period was marked by limited drug research and large scale increase in social stigma and prejudice. In the early 90s, the term “at risk group” drew criticism, particularly from the organized gay movement in some Northern countries, because it implied that all members of those groups were at risk, rather than that “behaviors” of some group members were risky. Instead, the concept of “risk behavior” emerged, pointing to specific characteristics and behaviors that could maximize the susceptibility of individuals to HIV infection. Unfortunately the concept of risk behavior also has limitations. With its focus on the responsibility and protection of individuals, the concept does not take into account the sociocultural construction of risk. e.g., what in their environment drives people to take risks, (e.g., hiding their sexuality or drug use, getting paid more for sex without a condom, the power inequities in social and interpersonal relationships). More importantly, what in their environment can help them not to take risks? In 1996, with the publication of the book “AIDS in the World II,” Jonathan Mann and Daniel Tarantola introduced the concept of “vulnerability” and expanded the arsenal of knowledge necessary for a broader response to the epidemic in the social, economic, and political arenas. According to UNAIDS, “risk can be defined as the probability of an individual becoming infected by HIV, either through his or her own actions, knowingly or not, or via another person’s actions. For example, injecting drugs using contaminated needles or having unprotected sex with multiple partners, Vulnerability to HIV reflects an individual’s or community’s inability to control their risk of HIV infection. Poverty, gender inequality, and displacement as a result of conflict or natural disasters are all examples of social and economic factors that can enhance people’s vulnerability to HIV infection. Both risk and vulnerability need to be addressed in planning comprehensive responses to the epidemic.” In the prevention of HIV/AIDS, the influence of vulnerability is now widely integrated into the elaboration of strategic responses. This concept enabled a qualitative leap in designing prevention action proposals, since it shifts emphasis from the individual towards a careful look at the social/cultural context in which the subject lives, without overlooking his/her needs or rights. The concept of vulnerability illuminates how inequity, stigma, discrimination, and violence can accelerate the spread of AIDS, as well as the reasons why some individuals or groups are automatically more vulnerable to HIV infection. To better understand the influence of vulnerability on HIV infection, and to adequately apply it when designing prevention strategies, Mann and collaborators defined three interdependent and interactive vulnerability components: • Individual vulnerability • Programmatic (or political) vulnerability • Social (or collective) vulnerability Individual vulnerability Individual vulnerability derives from personal behaviors, knowledge, and attributes that affect the possibility of preventing HIV infection. Such behaviors and attributes are linked to the social environment where individuals live, and they reflect a level of self-awareness and the potential power to change one’s personal behavior. Key factors related to individual vulnerability that can be effectively addressed by prevention interventions with SW, MSM, and IDU include awareness and behavioral factors, personal characteristics, and social relations (see Box 3). Programmatic vulnerability By their design, programs and services can increase or reduce vulnerability to HIV/AIDS among those people most susceptible. Programmatic vulnerability relates to the quality of information, education, and communication in a program, as well as the existence of quality medical and social services that are easy to access, periodically monitored and evaluated. Quality programs must adopt effective mechanisms to eliminate discrimination (see Box 3). Social vulnerability Social vulnerability incorporates those social factors that influence the capacity to reduce individual vulnerability. It focuses on policies and laws, like the criminalization of SW, MSM, and IDU in some countries. It also includes the sociocultural and economic environment and factors such as level of education, income, employment rates, equity status for women and minority groups, religious beliefs, race, sexual orientation, geographical or regional origin. For vulnerable populations like SW, MSM, and IDU, the key social factors to address are stigma and discrimination, gender, and sexuality. (See Box 3). Stigma and discrimination: Reducing the stigma and discrimination associated with both HIV/AIDS and a marginalized group is fundamental for any HIV prevention strategy. Stigma refers to a negative mark or characteristic differentiating some people from others. Such a mark may not be visible, and most often individuals are stigmatized due to their behaviors, physical attributes, or social conditions. The driving forces behind HIV-related stigma include lack of knowledge, distorted beliefs or fears about HIV transmission, and collective denial that stigma exists. As a consequence, stigma is manifested on three different levels: Individual (guilt, isolation, shame, denial of HIV positive status) Programmatic (condemnation, expelling HIV+ children from school, HIV screening tests for job applicants, loss of job), and Social (punishment, exclusion, rejection, violence) Especially in the health sector, stigma and discrimination against HIV-infected people and most vulnerable populations of SW, MSM, and IDU is serious. The health sector should therefore be one of the first places where concrete interventions against stigma and discrimination are undertaken. Gender: The idea that STI are primarily transmitted by women still prevails, despite the fact that it is easier for a HIV+ man to infect a woman than the reverse. Married women are frequently suspected if they ask their husbands to use condoms, which is probably why many women become infected with HIV at home. Women testing positive during antenatal care are blamed, as the first in the household to be identified. Cultural norms condoning men having different sexual partners and refusing to use condoms contribute significantly to spreading HIV and are especially hard to change in most societies. Gender and power inequities contribute to increased HIV vulnerability of individuals and groups. Women’s position within the society, usually submissive to men, greatly increases their individual vulnerability to HIV/AIDS. In many countries and all regions, cultural and ethnic beliefs, taboos, and myths can place the woman in extremely vulnerable conditions. For example, in parts of Africa it is believed that when infected by HIV, a man can free himself from the disease through sexual intercourse with a virgin. Such beliefs lead to rape of younger women, girls, and even infants. These examples show us how power imbalance increases vulnerability for many people. Sexuality: Being mostly sexually transmitted, the HIV/AIDS epidemic reinforces the misconceptions that gay men, transvestites, transsexuals, and sex workers are responsible for transmission of the disease, and that anyone infected is promiscuous. Healthy development of sexuality depends on satisfaction of fundamental human needs, such as desire for contact, intimacy, emotional expression, pleasure, affection, and love. Sexual health, as with health in general, must be understood as a basic human right based on freedom, dignity, and equity for all. All sexual rights should be recognized, promoted, respected and defended to ensure healthy sexuality and stop the AIDS epidemic (see Box 4). This will be important for the willing participation of those most vulnerable in HIV prevention programs. Poverty: The poorest people have the greatest probability of acquiring HIV/AIDS worldwide, since they are seldom reached by prevention strategies, have little or no access to counseling, treatment, and care services, and are discriminated against by society. While poverty increases HIV/AIDS vulnerability, the epidemic itself increases poverty among infected people, their families, and communities. Prevention programs should therefore give utmost priority to addressing the most destitute members of vulnerable populations. Empowering communities to promote an enabling environment To promote any change that is primarily social, effective organizing and networking of those affected is crucial. Networks of SW, MSM, and IDU must work to ensure their human rights and assert their own health demands and protection. Their alliances with public health, law and policy, and human rights communities are critical to reducing stigma and allowing them to emerge from isolation and hiding and receive the information, services, and resources they need. Networks and “ownership” of prevention programs lead to sustainable behavior change in vulnerable populations. But where they are isolated, focusing on protecting their anonymity, information, and services must still be made available and strategies found to prevent their infection. In some countries, conservative policies and political pressure have increasingly jeopardized important achievements in HIV prevention made in recent years. For example, many anti-condom campaigns have ties to conservative funders and religious or “cultural norms.” Where illegal activity increases vulnerability (use of drugs, sex work, homosexuality), harmful laws must be challenged if they block access to information and health care that are important to preventing HIV. Working with SW, MSM, and IDU communities requires a community development approach. Understanding the principles of this approach helps to support organizing for prevention among vulnerable groups. Community development interventions empower community members to undertake actions for local structural change actively. These interventions promote the potential social competencies of individuals, groups, and institutions so they can overcome structural barriers that, for example, deny sex workers and gay men access to resources and participation in social, economic, political and cultural relations. For effective results, community development interventions should promote interactions between individuals and their social networks to enhance social integration, social capital, and social inclusion (see Box 5). Empowering highly vulnerable groups People living with increased vulnerability to HIV infection are as varied as the general population, differing in age, gender, education, and sexual orientation, in addition to having different occupations and professions. However, as discussed, some individuals and groups face greater stigmatization than others, independent of their HIV status. On the one hand, children, youth, women, and truck drivers, are generally not stigmatized by society, despite the fact that they face high individual, programmatic and social vulnerability to HIV/AIDS. They become stigmatized only when they are thought to be living with HIV or to have developed AIDS. On the other hand, male and female sex workers, MSM, and IDU are victims of strong social stigma, independent of their HIV status, and this ingrained and harmful stigmatization considerably increases their vulnerability to HIV infection. The widening awareness and commitment of governments, donors, and NGOs to fight the AIDS epidemic has created an opportunity to overcome barriers, laws, and attitudes that keep vulnerable groups isolated. This new climate can bring those groups out of the darkness of “illegality” and “immorality,” and into the light, where problems can be solved on a human and realistic level. All vulnerable groups must develop their own organizations for prevention and rights recognition. Such civil society organizations can give voice to the community and develop a network of partnerships with other community-based and government entities. This may be the most ambitious intervention and, in the long run, offer the greatest potential for impact on community-led structural changes. It promotes all pivotal components of collective empowerment of vulnerable groups: social integration, social capital and social inclusion (see Box 5). Each of these components forms an integral part of a total package of interventions. Many key activities are intended to overlap, and all are designed to address individual, programmatic and social vulnerabilities of the community served, including subgroups, such as brothel or street based SW, transgender individuals, bisexual men, or non-injecting or injecting drug users. Behavior change It is not easy to convince people that by changing their behavior they will reduce their vulnerability to HIV infection. Behavior change is a complex process that takes time. Individual choice cannot change behavior alone, but social and economic factors, such as gender, cultural norms, and poverty must be addressed as well. The majority of HIV/AIDS prevention programs have achieved little progress beyond raising basic awareness about HIV transmission and, to a lesser extent, promoting the use of condoms. Behavior change communication Despite large sums invested in programs of Behavior Change Communication (BCC) over the last three decades, the adopted public health communication model has not achieved significant changes in individual or collective behavior in Africa, Asia, Latin America, or the Caribbean. By focusing on the dissemination of information related to “healthy” behaviors, which is usually designed without the participation of vulnerable group members, these efforts fail to change attitudes and mold behavior by simply providing large amounts of information. In addition to “information,” many messages focus on what someone “must do” or “must not do” (e.g. “always use condoms“, “never share needles,” etc.). Such a strategy not only dismisses the health-related needs of vulnerable populations, but also tries to assume control over the social body, with behavioral mandates doomed to failure. Somebody else’s “must do’s” seldom have meaning in the priorities and daily struggles of vulnerable communities. For example, if a female sex worker doesn’t know if she will have food that day to feed her children, or she can make significantly more money, she will agree to sex without a condom even if she knows she may get HIV. Cultural sensitivity within the AIDS epidemic means listening to and respecting the cultural diversity of individuals vulnerable to HIV/AIDS: their life styles, sexuality, values, norms, and rules for daily living. The process of developing communication campaigns and educational materials absolutely must include the participation of the groups to be reached, if they are to be relevant and effective (see Box 6). Behavior change beyond the individual Behavior change interventions must address individual as well as societal change. Strategies adopted should recognize the influence of the environment on personal motivation and practices, and the consequent need to link behavior communication interventions with providing other services and for creating a more favorable social environment. Therefore, collective action (meetings, campaigns, advocacy, social mobilization) must be promoted to overcome stigma and prejudice associated with vulnerable populations, questioning the social and religious norms that perpetuate gender inequalities, as well as traditional views about what it means to be a man or a woman. On the other hand, behavior change messages for those who do not identify themselves as vulnerable to HIV infection are better channeled anonymously, through hotlines, web sites, and large awareness-raising events, such as International AIDS Day, gay pride parades, music festivals, International Women’s Day, among others. This is an effective way to raise awareness and “desensitize” the larger society to behaviors that are not always accepted as mainstream. Comprehensive, Quality Health Services In designing HIV-prevention interventions for vulnerable groups, their access to quality, comprehensive health services, such as management of sexually-transmitted diseases and HIV voluntary counseling and testing (VCT), must be ensured. Sex workers, MSM, and IDU should receive medical services from providers preferred/chosen by themselves -- private, if affordable, or at public services with health workers adequately trained to deal with these clients’ specific needs and interests (e.g. able to show respect, uphold confidentiality, etc.). At the same time, respect and confidentiality cannot replace discussing sensitive topics of interest and health, like sexuality and sexual practices, domestic violence, and sexual orientation. When inter-personal confidence between vulnerable groups and health providers is promoted and well-established, there is hardly any topic that cannot be the subject of interesting and health-promoting interpersonal dialogue. Effective providers and counselors need to be able to talk frankly about sensitive issues to address the real practices and behaviors that make HIV transmission more likely. Actually, ingrained stigma and discrimination are constant impediments to appropriate interaction between health providers and vulnerable populations. An alternative is care delivery at specialized clinics, normally run by local NGOs (in countries like Brazil and Mozambique, these services are provided by the public health system). However, despite the assurance of a stigma-free environment and the reinforcement of social integration, these NGO services tend to be project-dependent and generally not sustainable in the long run. These specialized services can also have the negative effect of perpetuating social stigma by portraying SW, MSM, and IDU as “risk groups” in need of segregated services. Quality Care and Treatment Treatment for sexually-transmitted infections (STI), opportunistic infections (OI) (including Cotrimoxazole for prevention of OI), and Highly-Active Anti-Retroviral Treatment (HAART) should be stressed. All providers must be trained in accurate diagnosis and treatment of STI (including Hepatitis B and C), and the need for regular blood tests and laboratory studies for SW, MSM, and IDU. IDU should be guaranteed prejudice-free and appropriate medical treatment for abscesses and other infections and potentially life-threatening reactions associated with their drug use. Referrals and access to care and treatment for HIV/AIDS Referral information, linkages, systems for voluntary HIV counseling and testing and medical services must be part of any prevention or support program for vulnerable groups. Expediting access to lab services (CD4 counts, liver function tests), psychological support services, nutrition counseling and supplements, social services, physiotherapy (including eliminating barriers of affordability), are necessary referrals and services. Providers should be both savvy and capable of helping navigate those systems. Peer educators/community members must not just provide information, but actually accompany their peers to the services to provide courage against stigma and fear. Critical information, such as the availability of Cotrimoxazole, or the dangers of TB and HIV co-infection, and how to access effective treatment, must also be provided. In-service training and sensitization In-service training and sensitization teaches health workers to take their cues from vulnerable groups regarding the services they need, rather than deciding for them. Vulnerable populations should be the key designers of their own services and programs, sensitizing service providers and managers to designing services that will not “miss the mark” and block access. Providers must learn how to provide appropriate care for specific groups, such as transgender individuals, and reduce stigma and discrimination at health facilities. Community members need to be able to talk openly about the fabric of their lives, and providers need to be able to listen and not mandate. Peer counselors should be available in clinics to act as liaison between MSM or IDU and providers if needed. In Pathfinder’s Mukta Project in India, the presence of trained sex worker paramedics in clinics has strengthened community ownership and involvement. This active engagement in the design and provision of health services is necessary not only for client comfort, but also to create systems they will accept and in which they can actively participate. A regular supply of prevention tools – IEC materials, condoms (male and female) and harm reduction supplies is critical for effective prevention efforts. Strategies to provide free as well as socially-marketed condoms should be considered and discussed with the community. The provision of these prevention tools must be carefully integrated into the outreach and behavior change strategy, as well as easily available at clinics, local community/drop in centers, and all venues where the community members congregate.