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This post originally appeared in Pathfinder’s Field Journal and can be accessed here. Written by Callie Simon, May 2011.
Last week, Archbishop Desmond Tutu called upon the next generation of young leaders to “bring about positive change in attitudes and actions” to address HIV and AIDS. In a meeting in South Africa convened by UNAIDS, Tutu and others emphasized the power of young people to transform their communities—and thus, the world. The Archbishop’s statements reflect a growing acknowledgment that young people have the power to change the reality of HIV and AIDS.
At Pathfinder, we echo these sentiments. In the 21 countries where we work, we invest in developing youth leadership and building skills and knowledge around HIV prevention, treatment, care, and support, because young people are effective agents of change and advocates for other youth in their community.
In 2009, we launched the 3 Billion Reasons campaign, to draw attention to the largest generation of young people in world history—some 3 billion people under age 25—and the tremendous opportunity that they represent for improving global reproductive and sexual health. Acting to protect and promote the sexual and reproductive health and rights of today’s 3 billion young people is a matter of urgency for donors, developing country governments, and the international health community alike.
Emma Brathwaite is a senior adolescent/youth health technical advisor at the Nossal Institute for Global Health (University of Melbourne) with 10 years of experience in HIV, AIDS, and sexual reproductive health. Her expertise focuses on program design and implementation and operational research for advocacy to develop national HIV responses. She specializes in HIV prevention programming with and for most-at-risk adolescents and youth and HIV and adolescent sexual reproductive health integration.
Millions of young people around the world face very high risks of HIV infection and other negative outcomes. In Asia, 95 percent of new HIV infections among young people are in “key populations at higher risk,” who comprise only 5 percent of young people.
Two behaviors of greatest risk for the transmission of HIV are penetrative sex (vaginal or anal) with multiple partners without using condoms, and sharing used needles and syringes to inject drugs. Unprotected vaginal sex is a risk not only for HIV transmission but also for other sexually transmitted infections and unplanned pregnancy.
The public health response has focused primarily on risk-reduction behavior change models for HIV prevention, which essentially rely on people being willing and able to change their behavior to reduce their own individual risk.
Sound easy? Perhaps not.
We asked young people in Indonesia what they thought. These young people are peer educators. Many of them sell sex and use drugs (sometimes both), and all of them are actively involved in HIV prevention activities.
They explain that behavior change is not easy. They say it takes time, practice, and patience. Behavior change takes much more than education alone. There are many characteristics of young people that need to be taken into consideration, especially for programs and also for policy. These include age and sex, whether or not they are attending school or work, what type of work, marital status, economic dependence, family relationships (and support), friendships (and peer pressure), and where they live (in urban or rural environments). All of these factors are interconnected, shape how young people act and interact, and can be a source of both risk and protection.
Adi explains: Sometimes you are the student, the son, the friend, sometimes you have to make money for the family – it’s like being an actor, you know. You play different roles all the time and this can be hard when you’re young because there’s so much going on. You’re not a child but you’re also not an adult – but people expect you to make adult decisions but then treat you like a child!
Adolescence is also a period of curiosity, risk-taking, and first-time experimentation with many things, sometimes including drugs and alcohol.
Friends have a really big influence on what we do, how we dress, the music we listen to, the type of phone we have…but also on the things you do—like having sex, trying drugs, motorbike racing. It depends on what group you’re hanging with, like punks, emos, b-boys. It’s not like they are pressuring you by saying “hey, try this” but it is the non-verbal pressure to do things, try things, and keep up. Being part of a group is important.
Perception of risk is a very important factor for adopting protective behavior, and it is critical in applying behavior change HIV prevention models.
It’s not just the risk behavior you have to think about. Most of us know the risk factors from trainings—unsafe sex, sharing needles. We know this! Everyone tells us “don’t do this, don’t do that!” But when we think about ourselves and our friends and we really think about whether we are at risk, then it becomes a bit personal and much harder. We might know (deep down) that we are in the “risk” category because of something we do, but it’s hard to admit that to ourselves, and admitting that, really knowing your own risk status means you have to make big changes in your life, and sometimes those changes are hard because it means changing who you are.
There remains much we don’t know about what influences risk perception, especially in youth, and the multi-level influences on behavior and health. Currently, the majority of youth HIV prevention programs operate on a series of overlapping assumptions: that young people are able to assess their own risk and know their risk status; that their individual perceptions of risk fit with program definitions of risk; that young people identify as belonging to an “at-risk” population; and that young people are suitably skilled, resourced, and empowered to access relevant services or attempt behavioral changes. As we work toward effective HIV prevention for young people, we also need to consider the following:
- Adolescent risk behavior is often less fixed than adult behavior.
Sex and drug use are sometimes experimental and might not continue. Sometimes young people might try something just to see what it’s like—it might be risky but it’s not permanent.
- Young people are less likely to identify as a member of a high-risk or at-risk group.
- Young people are more easily exploited and abused.
Getting clients [of sex workers] to use condoms is very difficult because the clients have all the power. When you first start working, you don’t even know what you’re entitled to, what your rights are, how to negotiate safety, where to get advice. Sometimes clients are violent, and for young people with less experience, it’s hard to know how to get out of the situation safely.
- Young people are often less willing to seek out services.
Even if you know you need to see the doctor or need some advice, actually knowing where to go can be a barrier for some young people. But also, some things are illegal, like pre-marital sex, and so young people worry that if they go to a health service they might get in trouble or they worry that their parents will be informed and they worry they will bring shame to the family.
Aceh Partnerships in Health
The 2006-2008 Aceh Partnerships in Health (APiH) Facility was a health program designed to develop the capacity of local organizations to deliver quality health services. The first phase of the program commenced in February 2006. The facility focused on HIV, adolescent health, disability, policy, mental health, and organizational development. Phase two and phase three of this program continue its work in adolescent health, with a special focus on including HIV prevention in preparation for a coordinated provincial HIV response; HIV prevention among most-at-risk young people (particularly young transgender sex workers, young female sex workers, male street youth, and young drug users); design and implementation of the Life Skills in Schools Program; and a life skills out-of-school program. For further information: click here.
Peer educators: The youth-friendly medical clinic is co-located with a youth drop-in center (considered the headquarters for the peer education groups) and linked to the peer education programs. Together they provide a safe and supportive environment for young people, helping to increase clinic access, fostering positive peer/adult relationships, building HIV knowledge and communication/negotiation skills, and strengthening protective factors for young people. There are four main groups of peer educators connected to this program. All are actively working in Aceh Province in Indonesia. These young people are critical to the success of the program.
All young people involved in this story have given their consent (for photos and narrative). Names have been changed to protect their identity.
For more information, contact Emma Brathwaite: firstname.lastname@example.org
Robyn Dayton is a technical officer at FHI where she works on the research utilization portfolio of youth reproductive and sexual health activities.
If there were an intervention that helped young people protect themselves from STIs, HIV, and unplanned pregnancy, while increasing the chances that they will grow up to be adults with healthy and fulfilling sex lives, would it be made widely available?
Since there is such an intervention – sexuality education – this isn’t a theoretical question. But in many places, the answer is flatly no. In these locations, a desire to protect future generations is outweighed by the fear that openly discussing sex, including the prevention of some of its harmful consequences, would cause more young people to engage in sexual activity.
What if the intervention were proven not to increase sexual activity or risky sexual behaviors, but instead to delay sexual debut and increase the use of safer sexual practices – would that be enough to assuage any fears and ensure access worldwide?
Again, a look at the response to the evidence on sexuality education leads to an answer of “no, it’s not enough.” Issues of sexuality, and especially youth sexuality, are so contentious that even data from randomized controlled trials doesn’t carry enough weight to counter strongly held beliefs and visceral reactions.
But what if access to that intervention was considered a human right?
Here, we move to the theoretical, but not for long, as it is an answer that the world is in the process of finding out.
In a July 2010 report, Vernor Muñoz, Special Rapporteur on the right to education to the United Nations, unequivocally proclaimed that sexuality education is a right.
In the report, he addresses why sexuality education, and specifically comprehensive sexuality education, should be offered to all. He states that the already established right to the highest attainable standard of physical and mental health “obviously includes sexual health” and that achieving this standard is “possible only if we receive comprehensive sexual education from the outset of our schooling and throughout the educational process.” He also describes the right to sexuality education as “both a human right in itself and an indispensable means of realizing other human rights.”
In terms of comprehensive sexuality education, he notes that sexuality education cannot be reduced to reproduction and that there is “no valid excuse for not providing people with the comprehensive sexual education that they need in order to lead a dignified and healthy life. Enjoyment of the right to sexual education plays a crucial preventive role and may be a question of life or death.”
Additionally, he grounds this right in several international conventions, including the Convention on the Elimination of All Forms of Discrimination against Women and the Convention on the Rights of the Child.
Whether the Special Rapporteur’s report will make a difference in how widely sexuality education is made available remains to be seen.
What I can say at present is that his well-chosen words have reminded me not only how important sexuality education is for young people but also the daily injustice being done when they are unable to access it.
Elizabeth Futrell is an associate technical officer at FHI, where she works on activities related to community-based family planning and youth sexual and reproductive health.
“The story of Lazarus is a story of hope. Jesus pulled Lazarus’ dead body out of his tomb and said, “Lazarus, wake up!” Miraculously, Lazarus came back to life.” -The Lazarus Effect
In the 1990s, I volunteered at a Chicago residence for people living with AIDS. When I began my weekly visits, many of the residents suffered from AIDS dementia, wasting syndrome, and Kaposi’s sarcoma. Those not dealing with opportunistic infections were ravaged by the brutal side effects of their medication, which, for some people, involved swallowing 70 pills a day. I remember giving one man a back rub shortly before he died and feeling every bone in his body. In those days, the residence served largely as a hospice, where people who had lost everything would go to die.
Then everything changed. At the end of the 20th century, antiretroviral therapy (ART) became widely available in the United States. I watched people shed their skeletal frames for strong, healthy bodies in a matter of months. One of my closest friends at the house, Wayne, had arrived on the verge of death. A year later, I cheered as he crossed the finish line of Chicago’s 500-mile AIDS Ride. The house was no longer a hospice but a transitional residence where people could regain their health and wellbeing and go on with their lives.
A decade later, Africa is witnessing this same shift. In 2003, the Global Fund and PEPFAR started funding free ART to countries in need. Today, nearly 4 million people in Africa who would have otherwise died are receiving ART and thriving. The Lazarus Effect, a recent HBO documentary, highlights the transformative effect of ARTs by following several people in Zambia as they experience a rebirth of sorts. By strictly adhering to a regimen of two pills, which costs roughly 40 cents a day, the people in the film journey from near-death to vibrant health in a matter of months.
Bwalya Margaret Liteta weighed 24 pounds when she started ART at age 11. A bright girl who wanted to be a teacher, Bwalya not only returned to school, but finished at the top of her class after several months on ART. She glowed with joy at her newfound vitality in the film. Yet despite the ability of ART to prolong her life briefly, Bwalya died of complications from AIDS last August at the age of 12. One wonders whether she could have survived had she had access to treatment sooner. All of the other people featured in the film are still living.
The Lazarus Effect highlights the power of ART to improve the course of not only millions of individual lives but of an entire continent so gravely affected by the AIDS pandemic. It is critical to ensure that children and adolescents living with HIV in Africa and across the world have access to ART. It is just as important to guarantee access to ART for their parents in order to prevent mother-to-child transmission and to ensure this new generation, on which rests the future of the planet, does not grow up orphaned. Each day, 3,600 people die of AIDS in sub-Saharan Africa. The Lazarus Effect eloquently shows that this does not need to be the case.
“If the ARVs had not come, I believe this country would have been crippled.” – Constance Mudenda, The Lazarus Effect
Click here to watch The Lazarus Effect.