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.

Key Population Hero: Addressing stigma and discrimination among LGBT people in Kenya

Written by Levis Nderitu, co-founder, Sullivan Reed

Sullivan Reed is an organization in Nairobi, Kenya that specializes in the economic and social empowerment of LGBT people in Kenya, where homosexuality is criminalized and HIV prevalence is almost three times higher among men who have sex with men than the general population.

Many lesbian, gay, bisexual, and transgender (LGBT) people in Kenya are facing stigma and discrimination silently. They may not know how to access HIV services and, even if they do know, they wonder how will they be treated when they get there.

LGBT-friendly services do exist and we encourage people to use them. But not every provider is affirming. People are worried that they will be outed by medical staff, and with good reason. I’ve heard LGBT people talk of nurses calling other nurses over and “making an example” of them. I’ve heard of young LGBT people having their parents called. You can imagine how traumatizing this is.

People’s fears about accessing health care are compounded when they face other stigmatizing, even violent, situations. I saw this clearly recently when my friend’s boyfriend celebrated his birthday. He invited a few friends to his home, all of whom are LGBT. Then men, armed with sticks, broke in and started beating people. They said they did not want “people like [my friends]” in the neighborhood. Despite living there for two years without any complaints against them, my friends were evicted. It’s a tight-knit community and rumors soon spread. All those who had been there were scared; they had been exposed as LGBT and their lives were at risk.

Lots of LGBT people look at a situation like this and think “if I can’t even be happy in my own neighborhood, around people who know me, how do I then go to the hospital?” The impact of this type of intimidation is huge.

To help, we applied for funding through the International HIV/AIDS Alliance’s Rapid Response Fund, which issues emergency grants of up to $20,000 in 29 countries when stigma, discrimination, and violence threaten HIV services for LGBT people and MSM. Since its inception in October, the fund and has already received more than 235 applications.

The money came through quickly. We relocated all those in fear to a safe house and linked many of them to LGBT-friendly health services. Through the fund you can also apply for support for initiatives that will have a longer-term impact. I’m developing a mobile app to enable people to find LGBT-friendly services near them, and again I have turned to the Rapid Response Fund for help.

Many Kenyans are hostile to LGBT people, mainly because of the legal framework. But among younger people and in more cosmopolitan communities, attitudes have been improving. We have a new crop of people who believe in diversity and inclusion. I believe more and more straight people will begin to champion LGBT rights here and bring this community out of the margins.

We need to look at the issue of economic empowerment as many LGBT people struggle to find work. Some turn to sex work, which increases their vulnerability to HIV. We must enable people to support themselves; it’s a critical component of change.

As long as the existing penal code is in place, the fight will be tough. But when I look around me I see a lot of hope. Things are changing. Everyone should be able to live a full life, regardless of who they are and whom they love. We are working to make that happen.


To learn more about the Alliance’s Rapid Response Fund visit rapidresponsefund.org

 

 

Reducing Gender-Based Violence Against Women Who use Drugs: The Right to be Free

Written by Judy Chang, Board Member, International Network of People who use Drugs

Globally, it is estimated that one out of three women experiences gender-based violence (GBV) in her lifetime. Data on women who use drugs and their experiences of violence are scarce; this is not surprising given our status as an invisible population. As a result of criminalization, discrimination, and stigmatization, women who use drugs are disproportionately affected by violence. Women who use drugs commonly experience violence at the hands of state actors, notably the police, and when violence comes from intimate partners and the wider community, it is often perpetrated with impunity.

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Tanzanian Network of People who use Drugs. Photo by Ruth Birgin.

GBV against women who use drugs manifests as a result of a range of interrelated structural, systemic, and sociocultural drivers. Our experiences of GBV are both driven and compounded by stigma and discrimination and inequality. In 2015, the International Network of Women Who Use Drugs (INWUD), along with Women and Harm Reduction International Network, released a statement for the International Day for the Elimination of Violence against Women. The statement included a number of testimonials from women who use drugs and have been affected by violence. One woman shared her story.

“The insidious creep of abuse of domestic violence makes it hard to speak out. But when police fail to act on a charge, it becomes a double act of injustice. The neighbours called the police to my house, after I had just gone through a window. Under questioning he [my partner] told the police officer I was a drug user. Tearful and shaken, I found the tables turned on me. Rather than pursue a clear case of domestic violence, he chose to search me for drugs. It only took those two little words of ‘drug user’ for the police officer to see me not as a victim of domestic violence, but as a woman not deserving of equal protection under the law. At a time when I felt the most broken, I had to bear the force of a broken system which treats women who use drugs as undeserving of the same rights as other women.” (INWUD Virtual Consultation, 2015)

Our current value system that embraces prohibition places an inordinate amount of focus and effort on regulating and controlling what a woman puts into her body, rather than what is being inflicted on her body, more often than not by those with more power. Driven by political ideology and moral attitudes, the damage that the war on drugs wages on women’s bodies needs a political solution. INPUD argues that community organizing, community mobilization, and solidarity building remain the most effective and protective barriers against abuses and violations. Historically, we have seen these used as political tools to make critical gains in labor rights, civil rights, liberties, and in the HIV movement.

Ruth Birgin, INPUD’s Women’s Policy Officer has been catalyzing women who use drugs in countries in Asia and across Africa. She has been working with women from national drug user networks and supporting them to come together, develop plans and strategies to meet their community-defined needs, and create mechanisms for collective support. In Indonesia, for instance, INPUD supports the activities of PKNI, the national drug user network, that contributes to broader goals of increasing understanding and awareness of violence against women who use drugs and developing elements of protection. In Tanzania, INPUD’s Women’s Policy Officer is coordinating with women from the Tanzanian Network of People who use Drugs (TANPUD), who will be running their own activities, including a public event on December 10. A women’s advocacy team comprised of TANPUD members has been formed.  They are currently developing a statement on violence against women who use drugs, which is to be presented to the Ministry of Community Development Gender and Children on the 2016 International Day for the Elimination of Violence against Women.

The upcoming years are crucial. As we prepare for increasing onslaughts on the rights of women worldwide—including sexual and reproductive health rights, the right to bodily integrity and self-determination, and the right to be free from violence and sexual assault—women who use drugs need to come together to organize and strengthen our networks and communities. This is the first, crucial step to challenging damaging political realities. Now more than ever, the status quo will no longer suffice.


Judy Chang (MIntDev) is a board member of INPUD; a consultant with Coact, which is a technical support agency specializing in HIV and drug use; and an MPhil Candidate at the National Drug Research Institute (NDRI) in Australia.

INPUD is a global peer-based organization that seeks to promote the health and defend the rights of people who use drugs. INPUD challenges stigma, discrimination, and criminalization of people who use drugs and the impact they have on the drug-using community’s health and rights. The International Network of Women Who Use Drugs is a subnetwork comprised of those who self-identify as women and who use drugs.

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.