Believe It or Not: Global Leaders Mark World AIDS Day With No Mention of Youth

Nicole Cheetham

Last week I attended a World AIDS Day Event at the World Bank. Yet despite the fact that in many countries young people are at greatest risk of HIV and there are 3 billion people under 25 worldwide, not one expert mentioned youth.

This article is part of a series on global AIDS issues to be published
by Rewire throughout December.  To find other articles in this series, search "global AIDS 2009."  

Last week I attended a World AIDS Day event that was hosted at the World Bank, with prominent global HIV/AIDS stakeholders on a panel, including Ambassador Eric Goosby, the US Global AIDS Coordinator; Michel Kazatchkine, Executive Director of the Global Fund to Fight AIDS, TB and Malaria; Joy Phumaphi, Former Minister of Health of Botswana; Julian Schweitzer, Acting Vice President of the Human Development Network at the World Bank, and Beldina Atieno, a teacher and mother living with HIV in Kenya.

While the event was focused on linking HIV/AIDS, food security and maternal and child health, it surprised me that not once during the 1hour and 45 minute presentation did anyone mention young people.

It is no secret that 45 percent of all new HIV infections globally are among young people 15-24 years of age.  It is also no secret that complications due to pregnancy and childbirth are the leading cause of death among young women ages 10-19 around the world.  And it is no secret that infants of adolescent mothers are 1.5 times more likely than those of older mothers to die before their first birthday. 

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Or wait: Are these facts in fact still secrets?? You might think so.

It wasn’t until index cards were collected with questions from the audience that anyone (the moderator reading the question on my index card) mentioned youth—and in answering the question, abstinence was the only strategy put forward by one of the panelists as working to prevent HIV, without any rebuttal or inquiry from other panelists. 

This, at the World Bank, with prominent leaders on the stage.  This despite the release of the 2009 UNAIDS Report stating:

A central weakness of many prevention initiatives for young people is that they do not speak frankly or provide the accurate, comprehensive information that young people need. Many countries that require HIV education in schools have curricula that prioritize abstinence-focused programming, discouraging forthright discussions about condoms and safer sex. However, no study in low- and middle-income countries has found this approach to be effective. 

In fact, studies have shown that providing comprehensive information about HIV that is linked with sexual and reproductive health and includes honest, accurate information about condoms is a proven strategy for reducing HIV infection in young people.  So, if the United States is supposedly supporting evidence-informed HIV prevention through the President’s Emergency Plan for AIDS Relief, then why is comprehensive HIV prevention for young people not being mentioned? 

And speaking of comprehensive approaches, I also found it noteworthy that the word "condom" was not mentioned until 15 minutes prior to the end of the program.  In the context of the limited discussion on prevention (except by the World Bank’s Julian Schweitzer who managed to squeeze in emphasis on prevention on a few occasions), mention of condoms came after multiple references to Anti-Retroviral Therapy as prevention, prevention of mother-to-child transmission (where the mother herself already has HIV, by the way) and male circumcision (which does not preclude needing to use condoms).  This is not to say that these approaches are not critical to the fight against HIV/AIDS, but why do we keep excluding one of the most important viable and proven approaches when we have so much at stake?

So, what does this all mean?  It clearly must mean that we have to keep raising our voices to put young people on the radar and unequivocally demand policies that support comprehensive, evidence-informed HIV prevention programming for youth.  There are, after all, 3 billion people under the age of 25 on the planet today.  This is not fiction, this is not hyperbole–this is about public health and this is about human rights.  

Commentary Sexual Health

Fewer Young People Are Getting Formal Sex Education, But Can a New Federal Bill Change That?

Martha Kempner

Though the Real Education for Healthy Youth Act has little chance of passing Congress, its inclusive and evidence-based approach is a much-needed antidote to years of publicly funded abstinence-only-until-marriage programs, which may have contributed to troubling declines in youth knowledge about sexual and reproductive health.

Recent research from the Guttmacher Institute finds there have been significant changes in sexuality education during the last decade—and not for the better.

Fewer young people are receiving “formal sex education,” meaning classes that take place in schools, youth centers, churches, or community settings. And parents are not necessarily picking up the slack. This does not surprise sexuality education advocates, who say shrinking resources and restrictive public policies have pushed comprehensive programs—ones that address sexual health and contraception, among other topics—out of the classroom, while continued funding for abstinence-only-until-marriage programs has allowed uninformative ones to remain.

But just a week before this research was released in April, Sen. Cory Booker (D-NJ) introduced the Real Education for Healthy Youth Act (REHYA). If passed, REHYA would allocate federal funding for accurate, unbiased sexuality education programs that meet strict content requirements. More importantly, it would lay out a vision of what sexuality education could and should be.

Can this act ensure that more young people get high-quality sexuality education?

In the short term: No. Based on the track record of our current Congress, it has little chance of passing. But in the long run, absolutely.

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Less Sexuality Education Today

The Guttmacher Institute’s new study compared data from two rounds of a national survey in the years 2006-2010 and 2011-2013. It found that even the least controversial topics in sex education—sexually transmitted diseases (STDs) and HIV and AIDS—are taught less today than a few years ago. The proportion of young women taught about STDs declined from 94 percent to 90 percent between the two time periods, and young women taught about HIV and AIDS declined from 89 percent to 86 percent during the same period.

While it may seem like a lot of young people are still learning about these potential consequences of unprotected sex, few are learning how to prevent them. In the 2011-2013 survey, only 50 percent of teen girls and 58 percent of teen boys had received formal instruction about how to use a condom before they turned 18. And the percentage of teens who reported receiving formal education about birth control in general decreased from 70 percent to 60 percent among girls and from 61 percent to 55 percent among boys.

One of the only things that did increase was the percentage of teen girls (from 22 percent to 28 percent) and boys (from 29 to 35 percent) who said they got instruction on “how to say no to sex”—but no corresponding instruction on birth control.

Unfortunately, many parents do not appear to be stepping in to fill the gap left by formal education. The study found that while there’s been a decline in formal education, there has been little change in the number of kids who say they’ve spoken to their parents about birth control.

Debra Hauser, president of Advocates for Youth, told Rewire that this can lead to a dangerous situation: “In the face of declining formal education and little discussion from their parents, young people are left to fend for themselves, often turning to their friends or the internet-either of which can be fraught with trouble.”

The study makes it very clear that we are leaving young people unprepared to make responsible decisions about sex. When they do receive education, it isn’t always timely: It found that in 2011-2013, 43 percent of teen females and 57 percent of teen males did not receive information about birth control before they had sex for the first time.

It could be tempting to argue that the situation is not actually dire because teen pregnancy rates are at a historic low, potentially suggesting that young people can make do without formal sex education or even parental advice. Such an argument would be a mistake. Teen pregnancy rates are dropping for a variety of reasons, but mostly because because teens are using contraception more frequently and more effectively. And while that is great news, it is insufficient.

Our goals in providing sex education have to go farther than getting young people to their 18th or 21st birthday without a pregnancy. We should be working to ensure that young people grow up to be sexually healthy adults who have safe and satisfying relationships for their whole lives.

But for anyone who needs an alarming statistic to prove that comprehensive sex education is still necessary, here’s one: Adolescents make up just one quarter of the population, but the Centers for Disease Control and Prevention estimate they account for more than half of the 20 million new sexually transmitted infections (STIs) that occur each year in this country.

The Real Education for Healthy Youth Act

The best news about the REHYA is that it takes a very broad approach to sexuality education, provides a noble vision of what young people should learn, and seems to understand that changes should take place not just in K-12 education but through professional development opportunities as well.

As Advocates for Youth explains, if passed, REHYA would be the first federal legislation to ever recognize young people’s right to sexual health information. It would allocate funding for education that includes a wide range of topics, including communication and decision-making skills; safe and healthy relationships; and preventing unintended pregnancy, HIV, other STIs, dating violence, sexual assault, bullying, and harassment.

In addition, it would require all funded programs to be inclusive of lesbian, gay, bisexual, and transgender students and to meet the needs of young people who are sexually active as well as those who are not. The grants could also be used for adolescents and young adults in institutes of higher education. Finally, the bill recognizes the importance of teacher training and provides resources to prepare sex education instructors.

If we look at the federal government’s role as leading by example, then REHYA is a great start. It sets forth a plan, starts a conversation, and moves us away from decades of focusing on disproven abstinence-only-until-marriage programs. In fact, one of the fun parts of this new bill is that it diverts funding from the Title V program, which received $75 million dollars in Fiscal Year 2016. That funding has supported programs that stick to a strict eight-point definition of “abstinence education” (often called the “A-H definition”) that, among other things, tells young people that sex outside of marriage is against societal norms and likely to have harmful physical and psychological effects.

The federal government does not make rules on what can and cannot be taught in classrooms outside of those programs it funds. Broad decisions about topics are made by each state, while more granular decisions—such as what curriculum to use or videos to show—are made by local school districts. But the growth of the abstinence-only-until-marriage approach and the industry that spread it, researchers say, was partially due to federal funding and the government’s “stamp of approval.”

Heather Boonstra, director of public policy at the Guttmacher Institute and a co-author of its study, told Rewire: “My sense is that [government endorsement] really spurred the proliferation of a whole industry and gave legitimacy—and still does—to this very narrow approach.”

The money—$1.5 billion total between 1996 and 2010—was, of course, at the heart of a lot of that growth. School districts, community-based organizations, and faith-based institutions created programs using federal and state money. And a network of abstinence-only-until-marriage organizations grew up to provide the curricula and materials these programs needed. But the reach was broader than that: A number of states changed the rules governing sex education to insist that schools stress abstinence. Some even quoted all or part of the A-H definition in their state laws.

REHYA would provide less money to comprehensive education than the abstinence-only-until-marriage funding streams did to their respective programs, but most advocates agree that it is important nonetheless. As Jesseca Boyer, vice president at the Sexuality Information and Education Council of the United States (SIECUS), told Rewire, “It establishes a vision of what the government could do in terms of supporting sex education.”

Boonstra noted that by providing the model for good programs and some money that would help organizations develop materials for those programs, REHYA could have a broader reach than just the programs it would directly fund.

The advocates Rewire spoke with agree on something else, as well: REHYA has very little chance of passing in this Congress. But they’re not deterred. Even if it doesn’t become law this year, or next, it is moving the pendulum back toward the comprehensive approach to sex education that our young people need.

CORRECTION: This article has been updated to clarify Jesseca Boyer’s position at the Sexuality Information and Education Council of the United States.

Commentary Sexual Health

Building Solidarity to Overcome Invisibility: Sex Workers and HIV-Focused Activism

Anna Forbes

Even as federal agencies and public health organizations have taken steps to address HIV in vulnerable populations, sex workers have been left out of the conversation.

Researchers from the Centers for Disease Control and Prevention (CDC) in February published a study of HIV rates among female sex workers in the United States. The authors of the review—which was limited to female sex workers because research on genderqueer, transgender, and male sex workers in the United States is almost nonexistent—acknowledged that the prevalence of HIV in this group is high. They also noted, however, that they had little material to work with: The paper reviewed 14 studies, of which only two were done in the last decade. Thus, the authors note, “The burden of HIV among this population remains poorly understood.”

This shocking paucity of recent data is a result, in large part, of the withdrawal of federal funds for research on “prurient” topics imposed during the George W. Bush administration. That shift to the right had a chilling effect on the federal HIV response as a whole—an effect that has been most enduring with regard to sex workers. Overwhelmingly, even as federal agencies and public health organizations have taken steps to address HIV in other vulnerable populations, sex workers have been left out of the conversation. This omission is one that HIV-focused activists, at the urging of sex worker rights organizations, are starting to notice.

Most countries recognize men who have sex with men (MSM), people who inject drugs, and sex workers as their primary “key populations”—defined, in United Nations terms, as “groups of people who are more likely to be exposed to HIV… and whose engagement is critical to a successful HIV response.” The U.S. government, however, recognizes the first two, among others, as key populations, but not sex workers. Virtually no federally funded HIV prevention and care services are targeted specifically to sex workers in the United States, although, ironically, U.S. funding does support some good HIV prevention programming for sex workers overseas.

Here at home, they remain largely overlooked. The CDC’s HIV Behavioral Surveillance System (HBSS) only alludes to sex workers indirectly as a subgroup of “heterosexuals at risk of HIV infection” who “exchange sex for money or drugs”—a designation that, obviously, ignores their diversity on multiple levels.

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Meanwhile, the National HIV/AIDS Strategy Update, a federal blueprint for our national response written by the Department of Health and Human Services’ Office of National AIDS Policy, mentions gay and bisexual men 35 times, youth 23 times, transgender people 19 times, people who inject drugs 18 times, and incarcerated people twice. It does not mention sex workers—as such or by any euphemism—even once.

This virtual invisibility was reflected at this year’s National HIV Prevention Conference in Atlanta, billed as the “preeminent conference for scientists, public health officials, community workers, clinicians, and persons living with HIV.” Of the hundreds of abstracts presented via panels, posters, and roundtable discussions, only four mentioned sex workers as a distinct and relevant population to consider at this conference.

At a “listening session” on the NHPC’s third day, I asked Conference Co-Chair Jonathan Mermin—the director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention—about the lack of data on sex workers and HIV. He acknowledged that the CDC has not collected the kind of data on HIV vulnerability among sex workers that it collects on other key groups.

This lack of inclusion is nothing new. In 2012, when the massive bi-annual International AIDS Conference took place in Washington, D.C., many foreign attendees with sex work or drug-using histories couldn’t get U.S. visas to attend.

Four blocks away from the two adjacent luxury hotels where NHPC was held, the HIV Prevention Justice Alliance (HIV-PJA) convened a free “People’s Mobilization on the National HIV/AIDS Strategy Counter Conference.” Nearly 100 participants signed in at its meeting space—some of them unable to afford NHPC registration and some dividing their time between the two conferences.

In the middle of the NHPC’s opening plenary, AIDS Foundation of Chicago organizer Maxx Boykin walked unannounced onto the stage, along with seven other Counter Conference participants, to protest the omission of sex workers from the National HIV/AIDS Strategy Update. “At this conference we talk about getting to zero new infections and ending the epidemic,” he said, “but we will never get there without tackling sex workers’ rights.” The group left the stage to substantial applause.

In contrast to the NHPC, the Counter Conference offered a striking example of HIV-focused advocacy groups joining sex worker rights organizations to address this exclusion. In the process, the collective also examined how structural factors such as housing, gentrification, and displacement affect people’s HIV risk and their HIV prevention and treatment choices.

Rather than choosing among hundreds of presentations, Counter Conference attendees met in plenary with experts leading discussions on topics that included the intersections of HIV criminalization, mass incarceration, and the war on drugs; the barriers to reproductive and sexual health care facing youth and women living with HIV; the escalating difficulty of getting HIV prevention and care in southern states without Medicaid expansion; the links between unemployment, economic injustice, and disparities in HIV-related outcomes; the health care and quality-of-life challenges faced by transgender people; and the need to develop solidarity between HIV and sex worker rights advocates.

At the latter panel, four leaders in sex worker rights organizations recommended that HIV activists learn more about their local and state laws on sex work. Magalie Lerman, representing the Sex Workers Outreach Project, observed that “the political and social environment in the [United States] contributes to negative outcomes for people in the sex trade” in all kinds of ways.

It is not unusual, for example, for police and prosecutors to use the possession of multiple condoms as evidence of someone’s intention to sell sex. This practice has been exposed and subsequently prohibited in a few cities, but is still a common practice elsewhere. It both discourages condom use—thus heightening HIV risk—and provides another tool for unjustly arresting marginalized people, including sex workers and those profiled as sex workers, which frequently includes transgender women of color.

Lack of funding for sex worker-specific HIV prevention and outreach work is another issue where joint advocacy is needed. Lerman urged HIV-focused organizations to “deal us in on HIV prevention funding streams” and collectively demand resources to support local, peer-led empowerment programs that have proven effective in reducing HIV rates. Such projects received less than 1 percent of all HIV prevention funding worldwide in 2009, the most recent year for which data is available. Domestic data on funding for this is, of course, nonexistent.

Another high priority was staff training and program adaptations to make HIV service agencies more accessible to sex workers. Panelist Deon Haywood represented Women With a Vision, a New-Orleans based organization providing harm reduction and HIV prevention services to Black women since the 1980s. She mentioned the need to “make the people running the organization look more like the people coming through the door.” She said this could be done by hiring peer counselors with lived experience in the sex trade and ensuring that their jobs were designed with room for advancement.

Panelist Cassie Warren from Chicago’s Howard Brown Health Center, meanwhile, talked about how agencies could expand their hours, locations (using mobile van services), and strategies to reach street-based youth engaged in survival sex. While the process of investigating and resolving existing barriers to care is labor-intensive, she said, HIV-focused service providers can’t expect to engage with high-risk youth without doing such work.

Building cross-sectoral communication and trust is another major challenge. Panelist Stella Zine, founder of the peer-driven support group Scarlet Umbrella Southern Art Alliance, pointed out that sex work can be a “heavy term” for some people. She urged participants to learn how to talk about HIV and sex work carefully, using language acceptable to people who need services but do not self-identify as sex workers.  

When working with organizational partners rather than clients, on the other hand, Haywood cited a willingness to name the issues on the table explicitly—and to point out incidents where issues are misnamed or avoided—as essential to solidarity building. For example, Haywood commended the Counter Conference for bringing an explicit racial analysis to its discussions, an aspect she found missing at the NHPC.

The central theme of the session was “nothing about us without us.” Having been ignored and forcibly silenced in so many other settings, the panelists emphasized that sex worker rights advocates will partner with allies willing to ensure that sex workers are at the table whenever funding, policy, and strategy decisions affecting sex workers are under discussion.

After the sex workers panel, some of us walked back to the NHPC to attend the “listening session” mentioned above, where I raised the issue of sex worker invisibility. Dr. Mermin responded by acknowledging the gap and advised us of the CDC review published in February. He warned us, however, that this new paper would not contain the kind of key population data on sex workers that is being collected in other countries.

Indeed, the CDC’s website currently states that “there are few population-based studies of sex workers in the United States or globally” (emphasis added) due to their illegal status. In international terms, that assertion is badly outdated. A plethora of studies on sex workers and HIV have been published in the last five years, showing clearly that punitive approaches to sex work exacerbate HIV spread. Public health and rights-based approaches, on the other hand, not only reduce HIV rates substantially, but are cost-saving to boot.

Silencing groups by excluding them from pivotal conferences and omitting them in national strategic planning are forms of overt discrimination, as is simply refusing to include them accurately in population surveys. If uncounted, they do not officially exist and do not have to be served. This political decision results in an absence of much-needed evidence.

Dr. Mermin added, however, that we don’t have to wait for solid numbers or data to increase national efforts to deliver services successfully targeted to sex workers. Was he signalling a federal shift, at last, toward the public inclusion of sex workers in our national HIV response? Hard to tell—but the odds of that occurring are undoubtedly better if pressure for such inclusion escalates.