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

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.

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.

Comprehensive violence-response services in the Dominican Republic: A spotlight on CEPROSH

LINKAGES would like to thank the clinical staff members of CEPROSH, the police chief, and the key population members in Puerto Plata who contributed to this interview.

LINKAGES has the privilege of working with many incredible community-based organizations throughout the world that offer violence-response services to key populations. Below is an interview with The Centro de Promoción y Solidaridad Humana (CEPROSH), an HIV/AIDS awareness and prevention organization based in the northern region of the Dominican Republic. CEPROSH works to improve regional capacity to deliver quality services related to HIV and gender-based violence to key populations

1. How are key populations affected by gender-based violence in Puerto Plata? What types of violence do they most experience?

Intimate partner violence, hate crimes, and stigma and discrimination are significant issues faced by transgender people and sex workers in the Dominican Republic (DR). Transgender people also face difficulty in securing employment and are often rejected because of their gender identity or sexual orientation. Transgender people who engage in sex work also experience violence at the hands of the police. Police will often handcuff them, spit on them, and pull their hair.

Stigma and discrimination against key populations are prevalent in the DR. A patient at CEPROSH relayed her experience with transphobia, which she said humiliated her and left her in a great deal of pain:

“I got in a taxi and when the driver realized that I was trans, he stopped the car, got out, opened my door, and said, ‘Get out my car you *expletive*! I don’t allow *expletive* in my car!’ In that moment, I wanted nothing more than the ground to open up and swallow me. Everyone was looking at me, and only one onlooker showed any kind of indignation at the taxi driver. I will never forget that kind of humiliation for as long as I live.”

2. What are some of the links between violence and HIV for key populations in the Dominican Republic?

The links between violence and HIV that we see through our work at CEPROSH stem mainly from:

  • Social and family exclusion
  • Lack of knowledge among key populations about their health and human rights
  • Lack of will to seek health services
  • Poor mental health
  • Stigma and discrimination

3. What kind of services does CEPROSH offer to support key populations who have experienced violence?

We work with peer outreach workers and counselors at the clinic, and counsel key populations on their rights in an effort to empower them. We also have agreements with their supervisors at their jobs (for those who are able to work), which permit key populations to leave work in order to make their appointments at the clinic. For those who are not able to visit the clinic, we offer community-based HIV testing. Additionally, we take a comprehensive approach toward offering health services to key populations by offering the following:

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CEPROSH Peer Educators

  • Crises response services
  • Clinical services
  • Psychosocial support
  • Rapid HIV testing
  • Post-exposure prophylaxis
  • STI testing and treatment
  • Emergency contraceptive
  • Mental health services
  • Legal services
  • Support groups

 

 

 

 

 

 

4. What is something you learned during your time working with key populations who have experienced violence?

We learned that it is very difficult for someone to leave the circle of violence that entraps them. We have seen how violence can rob you of your identity, your profession, your family and friends, and your willpower. We also learned that through counselling and violence-response services, you can return a sense of confidence, strength, and self-worth to victims so that they can move forward.

5. What is a lesson that you’d like to share with other organizations that offer services to key populations who have experienced violence?

In order to help key populations who have experienced violence, you need to train organizational staff and health workers on key population service delivery. This includes helping staff to confront and address any negative biases they may have toward key populations, to dismantle any myths or negative stereotypes about key populations, and to deliver correct health information in a stigma-free environment.

6. How does CEPROSH work with other members of the community (police, doctors, religious leaders) to address gender-based violence toward key populations?

We sensitize community stakeholders through informal meetings and workshops with key populations to help them to understand the ways in which systemic violence is a violation of human rights for all people. We explain that often this violence comes from a fear of the unknown, or from people operating with misinformation about key populations. We work to reverse those preconceived notions and prejudices about key populations. We also form alliances among various community services that could work to protect the health and human rights of those most vulnerable.

7. How have the attitudes of CEPROSH staff and the community members mentioned above changed as a result of the LINKAGES project?

There have been many positive changes, but there is still work to do. Many of us recognize that before receiving gender sensitivity training from the LINKAGES project, we treated key populations with disrespect. Some of us growing up were even taught to hate them because they were different. Since the trainings, we have recognized the need to not treat key populations differently, but rather, treat them with the kindness, respect, and dignity they deserve.

The urgent need for violence response systems within HIV programming

Written by Tisha Wheeler, Senior Technical Advisor for Key Populations, U.S. Agency for International Development (USAID)

Never before have HIV prevention, care, and treatment programs for key populations been available in so many countries. Key population access to HIV services globally is expanding at a rate we can see changing monthly. However, structural barriers that key populations face persist, and violence, stigma, and discrimination continue to pose significant roadblocks to achieving meaningful progress toward an AIDS-free generation.

The wide-ranging manifestations of violence that key populations (transgender people, men who have sex with men, sex workers, and people who inject drugs) routinely face are often socially sanctioned and institutionally perpetuated. As criminalized and discriminated groups, key populations experience violence that is exacerbated by the lack of recourse available for addressing these abuses, compared to those offered to the general population. This lack of support and violence manifests in the family, among police, partners, landlords, in schools serving the children of key populations, and in many other facets of life. The violence and resultant trauma faced by key populations lead to a lack of stable housing and schooling for their children, a lack of agency in sexual negotiation, riskier sexual behavior, lower service uptake, and eventual increase in HIV incidence among key populations. It is obvious to conclude that HIV programming for key populations will continue to be incomplete and ineffective without basic violence response mechanisms at the community level.

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Bithia, a sex worker and a peer navigator of CHAMP Cameroon

For many of the key population individuals in HIV programs, addressing violence is of greater importance than HIV. If prompted, a member of the key population community will speak with deep emotion and fluency about the far-ranging violence that they and their friends face. If you ask that same person to speak about HIV testing services, it is unlikely that you will hear the same level of urgency in their voice despite their knowledge about HIV diagnosis and treatment. I recently had the opportunity to sit down with Bithia,* a sex worker, and a peer navigator of CHAMP Cameroon, about her lived realities dealing with violence and the steps she has taken to advocate for change in her community:

“There are three main types of violence, number one is police. Two, the clients and people around in the bar, and yes three, health facilities that don’t receive us well. They all see who we are and they don’t like us. They see we are dressed half naked, they know what we do. I have started to work with my friends, the other sex workers who are around where I work. We started a group called Glamour Girls. We talk about issues of violence and we find ways to help each other. We have been able to meet in the drop-in clinic, but we don’t have money for anything. Still, change is possible. We just need to plan and work together.”

In order for HIV programs to be effective, they need to be designed to address these realities. In the past five years, the international donor community has made significant strides to work toward this. Recognizing the importance of key population programs both to control the HIV epidemic, and to address the human rights of key populations who face violence and discrimination, PEPFAR has funded the largest scale-up of key population programming by any single donor through the LINKAGES project. The Global Fund, Robert Carr Civil Society Networks Fund, Elton John Foundation, and USAID have been recognized for their dedication to funding comprehensive HIV programming. Moving forward, the vision is that governments will build upon this momentum to further scale up key population programming beyond the levels we might have imagined just five years ago and that they will do this hand in hand with local key population civil society groups, who should drive the programming on the ground to best meet their needs.

We know that inadequate funding for global HIV programming will always be a persistent challenge. However, even in the face of resource constraints, we must reframe the conversation to focus on how to prioritize funding to address stigma, discrimination, and violence in key population programs and institutionalize those approaches in national program planning. For example, the Kenya national program under the leadership of Dr. Martin Sirengo has included violence as an indicator in its national key population HIV dashboard, and PEPFAR has included a budget line item for violence programming in their HIV expenditures. More countries need to follow this example.

To support national programs, PEPFAR also needs to go further to invest in policy change, to bring new funding opportunities, and to work on creating country budgets for key population programs that include violence. By taking these important steps, we can gain a better understanding of how to scale up violence response work through key-population-led approaches and create the changes needed to fast-track the end of the epidemic.


*The author and the LINKAGES project would like to thank Bithia and the staff at CHAMP Cameroon for their contributions to this post.