Print version ISSN 0042-9686
Bull World Health Organ vol.87 n.11 Genebra Nov. 2009
Raoul Fransen-dos Santos*
International Civil Society Support, Van Diemenstraat 192, Amsterdam, 1013 CP, Netherlands
One quarter of the world's population is made up of 1.7 billion young people aged 10-24, 1.5 billion of whom live in developing countries where HIV/AIDS has reduced their chances of living to the age of 60 by 20%.1 Despite their vulnerability to HIV infection, young people's needs are often overlooked when national AIDS strategies are designed and implemented.1
Half of all new HIV infections occur among young people, aged 15-24.2 In 2007, an estimated 33.2 million people were living with HIV, 5.4 million of whom were aged 15-24 years. In sub-Saharan Africa, there are 3.2 million young people living with HIV, with a ratio of three young women infected for every young man.3
In 2001, governments committed that 90% of young people would be able to correctly identify modes of HIV transmission and prevention by 2005.4 Yet, by 2007 only 40% of young males and 36% of young females had accurate HIV knowledge.4
Until recently, these statistics were only used to address youth as a target group for prevention messages, rather than allowing each new generation to work through the issues themselves. We are slowly recognizing youth as a resource and actively involving them in finding solutions. Is it too little, too late?
One of the great challenges in HIV prevention is that today's young people have never known a world without AIDS; they did not experience the shocking early days of the "new disease". Improved (access to) treatment has changed HIV and the image of AIDS from a fatal disease to "just a sexually transmitted infection". Many young people are fatigued by prevention campaigns that are out-dated or unrealistic. Not all youth experience the same HIV vulnerabilities. An impoverished young girl in a rural village in Malawi has different needs in terms of effective HIV prevention than emerging gay youth in the favelas of Rio. The key lies in providing young people with the information and tools they need to make safe and healthy choices. But they must be true choices, not based on other people's ideologies.
Girls and boys
Young women and girls are disproportionately vulnerable to contracting HIV/AIDS due to biological factors and structural elements of culture, economic and social inequalities. Marriage and long-term relationships do not protect them from contracting HIV and insisting on abstinence is simply not realistic.
To address the global feminization of the epidemic, policies, programmes, legislative frameworks and social norms must guarantee women's rights, ensure protection from gender-based violence and discrimination. Despite the numerous references in national and international documents to the rights of women and girls, few countries have actually implemented and enforced policies and laws that protect such rights.
While the focus on young women and girls remains necessary, particularly in areas such as sub-Saharan Africa where more than 75% of those living with HIV are female, it risks excluding the very group whose involvement is essential if we are to successfully turn the tide on HIV; namely, young men, particularly those living with HIV.5 The engagement of young men is also essential to improve their own health outcomes.
The importance of directly engaging young men and boys in shaping the response to HIV and AIDS is clearly reflected within the 1994 International Conference on Population and Development Programme of Action. Commitments to ensure special efforts around this have been reiterated in several key international declarations since then.6
Traditional sex education and HIV prevention often focus (intentionally or otherwise) on young women and do not adequately address the needs of young men.7 Sexual and reproductive health clinics are often perceived, and indeed sometimes promote themselves, as "feminine spaces". Young men often feel uncomfortable visiting these clinics, which frequently lack services catering for their specific needs. There is a shortage of male service providers, who have a vital role in helping young men articulate their thoughts and feelings about sex and sexually transmitted infections. Programmes need to be gender-transformative, changing preconceived gender notions and promoting relationships between men and women that are fair and just.8
Too often, prevention activities focus merely on the biological or medical facts or provide ideological approaches to sexuality and choice, rather than addressing the needs of young people living with HIV and enabling them to continue living positively.
Young people who contract HIV around birth experience unique challenges. Interventions targeting this group to date have tended to emphasize delaying sexual debut, reducing the number of sexual partners and condom use, rather than providing comprehensive information and support on sexual reproductive health and rights. With an increasing number of young people born with HIV reaching adolescence, it is more important than ever to address the specific needs of this group.
Young people living with HIV have their own specific needs and desires for sexual reproductive health. Greater focus is needed on the specific prevention, treatment and care required by this group, including psychosocial support and sexuality counselling. Such activities should be implemented in a "positive prevention" framework9 that aims to protect their sexual health, avoid other sexually transmitted infections, delay HIV/AIDS disease progression and avoid onward HIV transmission, including mother-to-child transmission, based on the following guiding principles.10
Promotion of human rights
This should ensure the right to privacy, confidentiality, informed consent and voluntary disclosure. Stigma and discrimination - including self-stigma - drive people underground and make prevention even more difficult. A supportive and enabling legal environment is a fundamental cornerstone as it recognizes that prevention strategies based on coercion and criminalization are not the answer.
People living with HIV must be involved in the decisions relating to their life. In accordance with the Greater Involvement of People Living with HIV (GIPA) principle, the active engagement of people living with HIV in determining their own prevention approach is key to success in ensuring relevance, efficacy and applicability.
Positive prevention places the responsibility for reducing HIV transmission on everybody and removes the undue burden on people who are aware of their status. Safer and responsible sexual behaviour is the responsibility of all partners - irrespective of status. Promoting a culture of shared responsibility could also improve communication and equality within relationships.
Recognition of diversity
People living with HIV are heterogeneous and represent a cross-section of all sectors of society. Issues of race, ethnicity, gender, orientation, age, language, and risk profile will all have an effect on how positive prevention initiatives need to be tailored, including approaches adopted in service delivery and programming as well as in advocacy efforts. With clinical settings being one obvious venue for interventions, positive prevention also needs to reach out to networks, organizations and support groups of people living with HIV. Specifically tailored information and support also needs to be provided to key vulnerable populations (sex workers, men who have sex with men and injecting drug users).
Positive prevention has to be conceived as part of the comprehensive prevention agenda. Moreover, HIV programmes should deliver a comprehensive package of inclusive messages - irrespective of status - which could act as a modality for stigma reduction. At a technical consultation held by the Global Network of People living with HIV (GNP+) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) in April 2009, people living with HIV reinforced the importance of a supportive and protective legal and policy environment free of stigma and discrimination in a new framework: "Positive Health, Dignity and Prevention,"11,12 promoting a more holistic approach to prevention, including equitable access to voluntary HIV testing, treatment, care and support services and the need to address psychosocial, economic, educational and sociocultural vulnerabilities, gender and sexuality. In this way positive prevention does not become an excuse for shifting the responsibility for prevention onto people who are already marginalized and particularly vulnerable. Furthermore, it does not aim to have disclosure as an end point - as disclosure does not guarantee safe behaviour(s).
Counselling and testing
Most young people living with HIV do not know their status. Most young people, who have been at risk of HIV infection, have never been tested.13 Merely increasing access to testing will not solve most of the issues around this. Rather than rolling out provider-initiated testing or even mandatory testing, we need to address the obstacles to HIV testing. Focusing efforts on increasing the number of people who know their (positive) status does not mean we will have made any improvements in fighting stigma and discrimination or in providing better care and prevention. Moreover, the different role and concept of counselling in voluntary versus provider-initiated counselling and testing needs to be seriously revised. The importance of good quality counselling (pre- and post-test, but also sexuality counselling) has not been sufficiently recognized in developing or revising strategies to get more people tested.
Possibly the greatest challenge is the increasing complexity of HIV. Nearly 30 years into the epidemic, HIV treatment has improved, quality of and access to medication, care and services are improving, but HIV-related stigma is getting worse in many settings, even in western Europe and North America. If we continue to fail to acknowledge, protect and celebrate people's rights and diversity, we are far from pushing back the epidemic. With governments and United Nations agencies struggling to adapt effective strategies on comprehensive sexuality education and counselling - even to mention such wording in publications - and with sexual rights still not much more than a concept, we will not be able to improve the quality of life of so many (young) people. Today's young people will be responsible for sustaining the response to HIV/AIDS. We have to enable new generations to take on this task.
Competing interests: None declared.
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(Submitted: 3 April 2009 - Revised version received: 9 September 2009 - Accepted: 14 September 2009)