Early Lessons from South Africa’s Rollout of Oral PrEP to Sex Workers

This blog has been reposted from Prepwatch.org; the original posting can be found here. Contributed by Neeraja Bhavaraju and Daniela Uribe from FSG, a member of the OPTIONS Consortium.

In June 2016, South Africa’s National Department of Health began making oral pre-exposure prophylaxis (PrEP) available to sex workers. This represented the first time that any PrEP product was made available outside of a research study or demonstration project in an African country. In the first six months, hundreds of women have started taking PrEP from a network of 11 sites across five provinces in South Africa.

Maria Sibanyoni, program manager of the sex worker program at Wits RHI, a research institute focusing on sexual and reproductive health, HIV and vaccine preventable diseases, shared some early insights on what she has learned about delivering PrEP. These are some of the first “real world” insights that we have about PrEP delivery, and they will be invaluable to the wider rollout of PrEP in South Africa and beyond.

Lesson #1: Meeting people where they are increases access and uptake

A multi-channel strategy supports PrEP uptake

“One of the approaches that we use to provide services is through fixed facilities. Sex workers are able to access these facilities anytime. The second approach is outreach. We go out with a package of services—medicines, equipment, and HIV test kits—and reach out to the sex workers in brothels. When we get to the brothels we request a room and set up a clinic to provide services in the brothel itself. The third approach is a mobile van. We are targeting those who are street-based, whether they are operating at the bush, on the highway, under the bridge, wherever, to reach those sex workers using a mobile van where we provide a comprehensive package of services. The fourth approach is using the peer educators, who form a link between the clinic and the sex workers because they do lots of referrals, they go out there, they mobilize, they also provide HIV testing services including finger pricking, give health talks, they talk about PrEP quite a lot, but also they make sure that they link the sex workers to our services so that they are able to access PrEP.”

Lesson #2: Those with high HIV-risk perception more frequently use and adhere to PrEP

Raising awareness among potential PrEP users about their own risk is a strategy to generate demand for PrEP and ensure higher levels of adherence.

“With sex workers, the ones who see themselves at risk are keen to take-up PrEP. However, those who are just worried will start coming up with excuses: ‘I can’t take a pill every day.’ They are worried for now but they are willing to take the risk. Those who see themselves being at risk know PrEP will help them. People know their lifestyle and who they engage with, they know the factors that are pushing them to request it.”

Area for further study
While it is clear that some women are “self-selecting” to use PrEP, we still don’t know whether those women who are “self-selecting” are those at highest risk for HIV transmission. Further study on this issue could mitigate concerns about the “worried-well” driving PrEP demand and will help inform plans for broader PrEP introduction.

Lesson #3: Creating a community of support increases adherence

From peer educators to friends, having a community to create accountability can make all the difference.

“We have looked at different strategies of adherence. We look at a buddy system – who are they bringing or identifying as their support person or support structure that will ensure that they take treatment on time and they come in for their check-ups. We also keep a register to ensure that those who do not honor their appointment are traced, telephonically and physically. We have peer educators who do the physical tracking. They go to the brothels to find the sex workers, even though they are mobile; the peer educators have been in the area and have a relationship with the community, and they will have feedback and information about where they are.”

Lesson #4: Engaging and supporting health care workers is essential

While PrEP represents a “breakthrough,” it also represents a significant new workload.

“PrEP is new, and as with anything that is new people will react differently. Some of the health care workers see PrEP as a breakthrough. But others see PrEP as an added responsibility that will increase their workload. A clinician used to see someone who was HIV negative and say “’stay negative and we will see you in 6 months or a year’s time.’ But with PrEP now we have to initiate you, call you after a week, call you after a month, call you after three months. So some might think ‘this is actually increasing my workload.’”

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Photos by: Dawn Greensides, Wits Reproductive Health and HIV Institute

Key Population Heroes: Finding meaning and renewed purpose after my HIV diagnosis

Written by Christio Wijnhard, Project Coordinator for the LINKAGES Project at Foundation He+HIV, Suriname

Even though Clarence suspected that he might HIV-positive, the 24-year-old was shocked when he first learned his status. “I cried and I cried. I wanted to commit suicide. I thought it was the end for me.”

When Clarence first accepted his sexuality, he just began experimenting and never thought about practicing safe sex. But he lived in a small village where news traveled fast. When people started talking about two of his former sexual partners being HIV-positive, he realized the risks involved.

The young Surinamese man met a health navigator working for Foundation He+Hiv (FHH), a LINKAGES implementing partner. They had met before on social media, but the health navigator invited him for a one-on-one conversation at FHH.  The health navigator then determined that Clarence had been risky in his behavior and advised HIV testing. “At first I was reluctant to go for an HIV test. But, after thinking about it, I agreed.” Clarence’s health navigator motivated him to not be afraid and pointed out the importance of knowing his status for sure. Finally, on November 7, 2016, the health navigator accompanied him to a health care facility.

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Clarence looks out the window.   Photo credit: Christio Wijnhard

 

The outcome was devastating at first. “I have two dogs, Bruce and Chulo, and I could see their chain in front of me because that was what I wanted to use to kill myself.” Clarence was embraced by his health navigator, who shared with him some surprising information that changed the way he would view his HIV-positive status.

 

“He told me he was also infected with the virus. At first I would not believe it because he was a normal-looking man on the outside.” Looking back, Clarence can honestly say that this moment changed his life. “Hearing and seeing someone that was also infected, but looked very healthy, took away the feeling of being alone and lonely. It took away my fear of dying.”

When the time came to start medication, Clarence had some difficulties. The side effects were too much to handle, and he even stopped taking his medication because of them. His health navigator and the specialist at the Academic Hospital had serious talks with him. The doctor even told him bluntly: “If you don’t take your medication, you will die. Is that what you want?” Finally, the health navigator decided to bring Clarence for a talk with the project coordinator.

The project coordinator asked Clarence about his dreams and his goals. Clarence shared that he was worried about his cousin.  “She is my favorite cousin. I love her very much but she is risky in her behavior, like I was.” Then, they started talking about the possibility of her being HIV-positive as well. When the project coordinator asked Clarence what he would do if his cousin was infected and did not take her medicine, Clarence replied, “I would tell her not to be stupid and take her medication of course!”

Clarence paused for a moment, before saying, “Okay, I get it!”

Today, Clarence is still working on accepting his status. Twice a month he attends MSM support group sessions, which focus on self-empowerment. He meets up once every few weeks with his health navigator. He also uses the psychosocial care services at FHH, and he joined the group for the annual retreat of key population members who are living with HIV.

“I feel super fantastic! Because of the coaching, I was able to define what I liked. I am very interested in photography and I would like to take dance classes, and I might pursue a career as a male model someday.” Clarence also told his health navigator that he no longer wanted to be accompanied by him when he needs to visit the health care facility. “I feel empowered enough to visit health care facilities on my own.” Clarence also started writing about his feelings in a dairy.

“I feel great, really. And I want to work on improving myself because I want to be a good example for other people dealing with acceptance of their HIV status. I want them to know that it is not easy but if I can make these changes and be happy and work towards a good life living with HIV, so can they! I want to be their inspiration.”

 

WE NEED TO TALK ABOUT “REGGIE”: THE IMPORTANCE OF INTEGRATING LGBTQ MESSAGING WITH HIV INFORMATION

Written by Georgia Arnold, executive director and founder of the MTV Staying Alive Foundation, and executive producer of the award-winning “edutainment’ campaign, MTV Shuga.

MTV Shuga is a 360 mass media campaign that uses the power of entertainment to generate positive sexual and reproductive health outcomes amongst young people. At the core of MTV Shuga is a TV drama, which follows the lives of a group of young friends as they encounter sexual, social, and educational challenges throughout their adolescent years. Following on from two seasons in Nairobi and another two set in Lagos, the fifth season has been produced in South Africa for the very first time.

The issue of HIV and AIDS among young people is as important today as it has ever been. Every day, 1,300 adolescents around the world are infected with HIV.

In the run-up to National Youth HIV & AIDS Awareness Day on April 10, we are reminded of the need to challenge the stigma surrounding HIV and AIDS and empower young people to take charge of their sexual and reproductive health.  One of the ways we can achieve this is by breaking down the taboos surrounding adolescent sexuality.

Across many countries in the world, the idea of sexual activity among young people carries strong negative connotations. Accurate and judgement-free conversations with young people about sexual behaviors or safe sex practices are few and far between, meaning that many teenagers are uninformed and misguided when it comes to sexual health.

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Photo Credit: MTV Shuga

This is particularly true in the case of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community who, in the rare cases where information on sex and sexuality are provided, are often entirely ignored or are described as wrong.

Holding open, in-depth, and inclusive discussions about sexuality is imperative in our efforts to reduce HIV transmission and ensure that those living with HIV have access to care. Such conversations allow us to break down rigid norms attached to young people’s sexual behavior and sexual orientation.

This represents the first, and most important step, in ensuring that all young people feel able to access the necessary information and sexual health services available. After all, you can’t get information that protects you from HIV if you are afraid that your questions about your sexual behavior will be met with discrimination and disdain from your health care provider.

As part of our work on MTV Shuga, we aim to challenge harmful norms by fusing hard-hitting entertainment with important social, sexual health, and educational principles.  In our latest series set in South Africa, a new character Reggie – who is trying to understand his own sexual orientation – represents the medium through which LGBTQ messaging and HIV information can be successfully merged.

In Africa, where MTV Shuga is primarily broadcast, most countries have anti-homosexuality legislation and members of the LGBTQ community are often marginalized. Even in South Africa, where LGBTQ rights are legally enshrined, 55% of LGBTQ people live in fear of discrimination because of their sexual orientation. These data emphasize the need to talk about and create empathy for the “Reggies” of this world, but in a way that is carefully produced to maximize our potential impact.

This is a particularly complex endeavour as we broadcast in countries where LGBTQ storylines are not permissible. Although we cannot change existing laws, we can traverse state borders through our mass-media approach. Making use of digital platforms, such as YouTube, has allowed us to reach those living in places where LGBTQ stories are rarely told, and circumnavigate broadcasting regulations.

Young people face so many challenges throughout their formative years; the added burden of hidden sexual orientation has adverse implications for their health and well-being. We need to create safe spaces where all young people are free to explore who they are, including their sexual orientation, and get the information they need to live healthy and productive lives. While our approach may vary depending on the environment, the end-goal must always remain the same: to challenge harmful norms and affect a positive change in all young people’s sexual lives. Incorporating LGBTQ messaging in a sexual health context is an important way to realize this goal.


For more information on the important work being carried out in the LGBTQ community in South Africa, ANOVA and OUT represent two leading organisations in this field. These groups promote the need to incorporate HIV information with LGBTQ messaging as a means of generating positive sexual health outcomes among South Africans.

 

Commission on the Status of Women & Transgender Women

Written by Beyonce Karungi, Executive Director, Transgender Equality Uganda

The Commission on the Status of Women (CSW) is the largest international gathering of governments and civil society dedicated to developing an agenda that promotes progress for women and girls. Each year, the UN brings together women and girls from all over the world to discuss issues that affect women from all spheres of life. Despite the sense of total inclusion, transgender women and girls are often underrepresented in this crucial space. Consequently, the transgender community faces a challenge in raising and addressing the issues specific to them.

The CSW recently emphasized inclusion of transgender people in its sustainable development goals. The discussion surrounding trans inclusion was unprecedented and a major credit to the UN organizers. Hopefully, this discussion continues to provide an ongoing dialogue that will work toward the improvement of the status of all women – including trans women – around the world.

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Beyonce Karungi presenting at a sex worker panel during CSW

I was one of the few transgender women present at the latest CSW. While there, I participated in many forums including development of the UN Women’s Strategic Plan development (2018-2021) at the UN headquarters. We lobbied UN women to include the transgender community in the strategic plan by connecting us with country offices and registering us to participate not only in trans-specific events but also in the main CSW discussions that typically include all women and girls.

At CSW, I also participated in a sex worker session focused on the conditions faced by this key population. Internationally, policy discourse has shifted in many ways to defend sex work as real work. Still, efforts to criminalize clients are unaligned with what sex workers need in order to be able to thrive as workers.

I was also involved in the Lesbian Bisexual Transgender Intersex (LBTI) women’s session. LBTI women are not explicitly mentioned as a vulnerable group in many spaces. This cultural stance and attitude is in large part internalized by LBTI people, which creates a strong obstacle to self-identification. The stigma surrounding LBTI women makes them a socially invisible community within general society. The result is that, with a few exceptions, the most vocal leadership of LBTI women’s rights has traditionally been men.

CSW participants discussed many issues, including peace and security for women and human rights defenders, sexual and reproductive health and rights, maternal health, gender-based violence, and family planning. Transgender women and girls continue to be excluded from the economic, political, and social sectors, which limits their access to education, health services, and employment.

While one of the main goals of the CSW is to empower all women and girls, transgender women remain unfairly marginalized.

The CSW needs to ensure that transgender people are represented and that data collection is supported so we can begin to advance the livelihood and well-being of transgender women everywhere. It is within the power of the CSW to include all women in discussions on women’s status in the world, and doing so will increase the awareness and importance of transgender inclusion, health, and rights.

Zero Discrimination Day: LINKAGES uses SMS to collect feedback on health services for continuous program improvement

Written by Ben Eveslage, Technical Officer, LINKAGES

LINKAGES is working to increase key populations’ (KPs’) engagement and retention in the cascade of HIV services, thereby preventing new infections, increasing the quality of life for those living with HIV, and helping to meet UNAIDS 90-90-90 treatment targets.  However, stigma and discrimination at health facilities are among the most significant and persistent factors[1] that limit KPs’ access to and use of HIV services.

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Figure 1: Taking the SMS survey on a phone 

[1] Stigma and discrimination of KPs at health facilities was listed as the top challenge to program performance across the cascade of HIV services, according to a survey of LINKAGES’ program managers in 19 countries in December 2016.

In 2016, LINKAGES developed a system for monitoring the quality of health services from the perspective of both KPs and health care workers. With the SMS Service Quality Monitoring System (SMS2), peer outreach workers send text messages to KPs who have attended health services, asking a few simple questions about their satisfaction with the care they received. Using this system, health care workers can also complete short SMS surveys quarterly to assess their own facility’s performance and their personal performance. See Figure 1 for an example of how the SMS survey is administered. LINKAGES field teams will use the resulting data, collected at the facility or regional level, to:

  • Target and track the outcomes of efforts such as health care worker trainings to improve service delivery
  • Initiate a feedback loop among clients, project staff/community based organizations, and providers to improve health services (because providers get real-time feedback from KPs on their performance)
  • Continuously engage providers and patients/clients through SMS to encourage both high-quality service provision and positive health behaviors

The system is customizable and can be administered by community members, health care providers, and through messaging campaigns (opt-in method). By building on ongoing community activities, using simple phones that people already have, and employing an expandable SMS platform, this system can produce high volumes of regularly-collected data that can be used to improve programs quickly and track changes over time. See illustrative examples of data use maps and graphs in figures 2.

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Figure 2: Potential use of SMS2 data – Create maps of health facilities with KP ratings to identify facilities that require quality improvement interventions (data in map are only illustrative)

 

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Potential use of SMS2 data – Track average ratings of health facilities over time and assess outcomes of quality improvement interventions (data in graph are only illustrative)

 

LINKAGES will be piloting the SMS2 system in Lilongwe, Malawi beginning in March 2017 among peer outreach workers and KP members. SMS2 is scheduled for roll out in Burundi, Haiti (see Figure 4), Cote d’Ivoire, and a few other countries from March to May 2017, and the programs will continue to use the system throughout the year.

 

 

International Day to End Violence Against Sex Workers

The Global Network of Sex Work Projects (NSWP) exists to uphold the voice of sex workers globally and connect regional networks advocating for the rights of female, male, and transgender sex workers. NSWP represents 264 sex-worker-led organizations in 79 countries.

Globally, sex workers of all genders face physical, psychological, and sexual violence. Gender-based violence against sex workers has particularly acute repercussions, given that in many countries, sex workers do not have equal protection under the law and therefore are unable to seek due justice. Perpetrators of violence against sex workers are often:

  • Members of the general population (including state actors) who pose as clients in order to target sex workers
  • People who facilitate sex work and abuse their power—for example, managers, brothel keepers, receptionists, maids, drivers, landlords, and hotels keepers
  • State actors, including police and health care providers.
  • Anti-sex-work organizations that seek to “rehabilitate” sex workers and work with the police to “raid and rescue” sex workers and their children

Issues faced by sex workers vary from region to region depending on laws and social and cultural contexts. One common issue faced by all sex workers is their vulnerability to and experience of violence.

Violence against sex workers in Kenya drew international attention when Philip Onyancha confessed to murdering 17 sex workers in the town of Thika in 2010. Bar Hostess Empowerment and Support Program (BHESP) led demonstrations to highlight the violence and to demand justice. More recently, the Kenya Sex Workers Alliance drew attention to the murders of sex workers in Nakuru County, while NSWP drew attention to the mass arrest and mandatory testing of Kenyan sex worker in Kisii County in 2015.

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Key populations fight erasure during High Level Meetings on Ending AIDS in New York. Photo Credit: MSMGF

Transgender Europe (TGEU) tracks violence against transgender people in Europe. According to TGEU a majority of the transgender people murdered in Europe in 2016 were sex workers. This year, NSWP highlighted the high levels of violence faced by transgender sex workers in Turkey. NSWP called for urgent action to uphold the human rights of male, female, and transgender sex workers in their country. However, transgender sex workers in Turkey still face on-going violence with little or no protection from the law. On 12 August 2016, Hande Kader was murdered, which drew international attention to the extreme violence faced by transgender people in Turkey.

Sex workers also experience stigma and discrimination when their voices are disregarded or when they are silenced as they speak about the realities of their lives to the media, programmers, and policymakers. People often assume to know what is in the best interests of sex workers, without meaningfully consulting sex workers themselves. When sex workers are silenced or disregarded in the development of policies and programmes that directly affect their lives, it leads to policies and practices that are harmful to sex workers and is a form of violence against marginalized populations. For example, this year at the United Nations High Level Meeting on Ending AIDS, member states adopted a political declaration that did not meaningfully include key populations, including sex workers, men who have sex with men, transgender people, LGBT people, and people in prisons. NSWP wrote a joint statement documenting the devastating effects of this exclusion.

NSWP calls on those who fight gender-based violence to support the global sex workers movement on the 17 December, the International Day to End Violence Against Sex Workers.