Commentary Sexual Health

Forgotten Women: UNAIDS, PEPFAR, and ‘Keeping Mothers Alive’

Ann Starrs

UNAIDS and PEPFAR recently released a report on progress toward achieving an AIDS-free generation. Though there has been great progress, the report almost completely ignores the second target of the groups' Global Plan: mothers.

Cross-posted with permission from The FCI Blog.

Two years ago, in July 2011, Joint United Nations Programme on HIV/AIDS (UNAIDS) launched a joint initiative with PEPFAR, the U.S. President’s Emergency Plan for AIDS Relief, to help achieve the goal of an AIDS-free generation. The ambitious, if clumsily named, “Global Plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive” included two global targets:

  • Reduce the number of new HIV infections among children by 90 percent
  • Reduce the number of AIDS-related maternal deaths by 50 percent

Tuesday, UNAIDS and PEPFAR released a new report on progress in this important initiative. The report and accompanying press release highlight the very welcome news that seven countries (Botswana, Ethiopia, Ghana, Malawi, Namibia, South Africa, and Zambia) have reduced mother-to-child-transmission of HIV by 50 percent or more, with two additional countries (Tanzania and Zimbabwe) close to achieving that rate of reduction.

UNAIDS, PEPFAR, and all of their global and country partners deserve sincere congratulations for this tremendous accomplishment, achieved in a relatively short span of time. Progress toward the Global Plan’s first target has been truly impressive.

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But their report almost completely ignores the plan’s second target, and in fact the second part of its long title: “…and keeping their mothers alive.” Perhaps a more accurate title for the initiative, at least as reflected in this report, would have been “Global plan towards the elimination of new HIV infections among children, and keeping their mothers alive just as long as they are pregnant or breastfeeding (but after that, not our concern…).”

OK, maybe I’m being a bit too harsh. But in the report’s 15 pages of text, there is at best one glancing reference (being generous) to the fact that women with HIV who are eligible for treatment should receive antiretrovirals because they have a right to treatment for the sake of their own lives and health. And the target for reducing maternal deaths is not even mentioned in the report’s text (though, to be fair, it is included as an indicator in the country profiles that make up the second part of the report).

What gives?

Well, the report makes it clear. “Many more women,” it states, have access to antiretroviral medicines to reduce the risk of HIV transmission to their children than four years ago [my emphasis, here and below].” And again, “Special attention is needed in all countries to ensure access to and retention on antiretroviral medicines for pregnant and breastfeeding women living with HIV to cut these numbers of children acquiring HIV infection.” The report betrays, alarmingly, a view of women exclusively as bearers and feeders of children.

It does, at a couple of points, vaguely acknowledge that women’s lives have value even when they are not carrying or breastfeeding babies. “The number of women acquiring HIV infection has to be reduced,” the report states, “and all women living with HIV eligible for antiretroviral therapy must have access to it for their own health.” But this commitment, for which many advocates have fought long and hard, must be translated into concrete action to prioritize antiretroviral (ARV) treatment for HIV-positive women who are not pregnant, or who have finished breastfeeding. Too often, still, these women do not have access to the life-saving medicines they need, or are dropped from programs when they no longer qualify through their children.

The report does, thankfully, acknowledge the significance of access to family planning as a means of preventing unintended pregnancy, and thereby of preventing infants from being born with HIV:

Reducing unmet need for family planning will reduce new HIV infections among children and improve maternal health. Increasing access to voluntary and noncoercive family planning services for all women, including women living with HIV, can avoid unintended pregnancies. Family planning enables women to choose the number and spacing of their children, thereby improving their health and wellbeing.

Kudos to UNAIDS and PEPFAR for being forthright about this crucial element of PMTCT (preventing mother-to-child transmission) programs, even though family planning is still far too rarely included in HIV/AIDS-prevention efforts.

But in other respects, the agencies need to do better, both in their programs and in the messages they send through reports like this one. Michel Sidibé and Eric Goosby, the heads of UNAIDS and PEPFAR, have both, in many speeches and statements, acknowledged the importance of women, and the right of women living with HIV to get ARV treatment for their own health. This report should have reflected that awareness, and that principle (as, for instance, this one in 2012 did). I hope and expect that the next progress report for the Global Plan will include a clear discussion of the link between HIV infection, maternal mortality, and women’s health more generally, and what the agencies are doing to address it.

Commentary Human Rights

Tackling Zika: Have We Learned Our Lesson on Rights?

Luisa Cabal

Local governments and public officials should look to the reproductive rights and HIV and AIDS movements for insights into the ways in which they can more effectively center the needs of those most marginalized while fighting the Zika virus outbreak.

Read more of our articles on the Zika virus here.

The Zika virus outbreak and the increase of babies being born with birth defects seemingly linked to the mosquito-transmitted disease have generated a series of prescriptions from governments of the most affected countries about what people need to do and not do. These include asking women to delay pregnancies—until 2018 in El Salvador, for example.

Sadly, these recommendations do not match what is in the realm of possibility for many women living in or near Latin America, the region from which we hail. We propose instead local governments and public officials look to the reproductive rights and HIV and AIDS movements for insights into the ways in which they can more effectively center the needs of those most marginalized while fighting this crisis.

Calls to delay pregnancy in several countries where the Zika virus has spread have revealed gaps in health systems resulting from unfulfilled demands for sexual and reproductive health-care services. While women in Latin America generally have access to contraception—a real demonstration of decades of activism and leadership—in some Central American countries such as Guatemala, over 26 percent of married young women who do not want to become pregnant have an unmet need for birth control, and therefore are at risk of an unintended pregnancy.

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In the regions that have seen a spike in Zika cases, there are also high rates of sexual violence. The World Health Organization reports that one in three women experience violence in her lifetime. Those rates in Peru, where health officials in late January confirmed the nation’s first case of Zika, appear to be higher: A 2005 report found more than half of women in Lima and Cusco experienced physical or sexual violence by a partner some time in their life.

Without access to contraception, many women, including some young girls, will experience unintended pregnancies. And once pregnant, women and girls do not have control over their own reproduction as the laws provide limited options for termination. In countries that have very restrictive abortion laws, women and girls face an even greater health crisis should they experience an unintended pregnancy, become infected with the Zika virus, and want an abortion.

In light of this situation, how realistic is it to expect the public to delay their pregnancies as they are prescribed to do? Is this top-down approach to tackling a health-care emergency grounded in the realities and needs of women? Are policymakers once again “instrumentalizing” women to solve a threat or a global challenge?

Activists have known for a long time what is needed at a structural level to ensure that women’s health and rights are respected and promoted. Reproductive rights and HIV and AIDS advocates have said it all along.

The response demands long-term commitments to three rights pillars: First, access to information and services. Women need access to information about the virus, including how to prevent transmission. They also have a right, as UN bodies have argued, to access the type of sexual and reproductive health services they need, including a range of contraceptive options. If pregnant, every woman should be able to decide if they will carry to term their pregnancy—and have access to safe abortion or maternal health care and social support services.

Second, governments and stakeholders need to scale up their commitments to protect women’s agency. Women have to be empowered to make choices regarding their own health, and those choices need to be respected. Women living with HIV have shared their painful experiences of being subjected to coercive sterilization or abortion and of having their right to reproductive autonomy erased. Advocates and policymakers need to reinforce the rights and dignity of women and show that respect for their decisions is at the center of any policy and health intervention. As we learned from the AIDS response, this work of fighting a global health crisis must start with the concerns of those most vulnerable and marginalized, and their voices must be heard at all times.

Lastly, in a world where leaders look for magic bullets and advance biomedical approaches as one-size-fits-all solutions to health challenges, governments and different stakeholders need to bolster all efforts aimed at eliminating discrimination and violence against women and girls. These efforts should include removing obstacles to reproductive health services, investing in the empowerment of adolescents, and training health providers to protect and promote women’s sexual and reproductive decision making. These interventions will ensure that when a crisis hits, all persons—whether women or those from other marginalized groups—are enjoying the legal, policy, and cultural conditions that recognize them as full citizens and agents of their health and lives.

The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of UNAIDS.

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.