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.


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.


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)



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.



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.


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.

Launch of “HIV epidemics among transgender populations: the importance of a trans-inclusive response.” A JIAS Supplement guest edited by Tonia Poteat, JoAnne Keatley, Rose Wilcher, and Chloe Schwenke.

Re-post from The JIAS Blog:

Launched at the 21st International AIDS conference, the Journal of the International AIDS Society is pleased to announce the publication of the special issue entitled ‘HIV epidemics among transgender populations: the importance of a trans-inclusive response’. The articles in this special issue cover a wide range of topics focusing on the unique concerns of transgender communities. This supplement was guest edited by Tonia Poteat (Johns Hopkins School of Public Health), JoAnne Keatley (Center of Excellence for Transgender Health), Rose Wilcher (FHI360/LINKAGES Project), and Chloe Schwenke (Georgetown University).

Transgender people are disproportionately affected by HIV, and yet they are underrepresented in the global HIV response. In addition to high HIV prevalence, transgender people experience stigma, violence and human rights abuses which hinder their access to care and increase their risk for HIV-related morbidity.

This supplement expands the evidence base on HIV among transgender populations and aims to make the latest research widely accessible–to better enable funders, policymakers, and implementers around the world to develop HIV policies and programs based on the most current trans-specific knowledge. The studies present new epidemiological and behavioral data addressing HIV risk and prevalence, as well as document progress and gaps in implementing HIV programs with trans communities. These studies represent research and programmatic efforts from a range of geographic and social contexts. A much needed focus is also provided on specific sub-populations such as transgender youth and transgender men who have sex with men. The supplement comprises original research articles, case studies, and calls to action, all of which highlight the urgent need for an effective, tailored HIV response for transgender communities.
We encourage readers to discuss and share this timely issue within their social networks as well as our Facebook and Twitter sites.

To access the supplement, please click here:

There is no passion to be found in playing small

Written by Kevin Osborne, Project Director of LINKAGES

LINKAGES burst into the global scene with big and bold goals but no one imagined in its second year LINKAGES would be this big or this bold.  We did not anticipate this pace of growth or the sizeable interest that would be sparked. Now, entering our second year, LINKAGES has 27 global partners and 50 sub-partners, and these numbers will continue to grow. Twenty-four countries have bought into LINKAGES, and these will increase. The project has collaborated to create seven toolkits, frameworks, and resources, which will continue to expand. LINKAGES is moving full steam ahead, scaling up, working with acceleration teams and following the words of the late Nelson Mandela, “there is no passion to be found in playing small.” This rapid growth shows the sense of urgency that exists around addressing the needs of key populations. The demand is high and the need is great, going far beyond LINKAGES, far beyond our partners. This is bigger than us.

Kevin Osborne, LINKAGES Project Director, opens up the Rights in Action Event with a few remarks.

Kevin Osborne, LINKAGES Project Director, opens up the “Rights in Action” Event with a few remarks.

LINKAGES is a designed beauty of synergy that is about passion, partnership, and rethinking the way we address HIV, with the end goal that all members of key populations from Jamaica to Juba will have access to comprehensive health care services that are respectful of human rights and will enjoy a high quality of life regardless of who they are, what they do, or who they have sex with. This is a big goal.

The passion behind this work is evident with all LINKAGES partners. Partnership is something often talked about but rarely brought to scale at its potential. This project requires deep, meaningful, broad partnerships among national governments, international organizations, civil society, as well as the private sector. LINKAGES will continue to form and expand existing partnerships, meaningfully engaging members of each key population group as principal decision makers. This is a big task.

In every country where LINKAGES is present, we are fighting to increase access to and demand for HIV services while strengthening accountable, community-based prevention, treatment, and adherence programs. As work begins in the field we are witnessing numerous promising practices take shape:

  • A LINKAGES-supported drop-in center in South Sudan has provided HIV testing services for more than 1,200 female sex workers, where 26% tested HIV positive and have been linked to care and treatment services.
  • The LINKAGES HIV Cascade Framework has been completed and will serve as the backbone for the program and as a roadmap for the development of future HIV programming.
  • The LINKAGES South2South toolkit is being launched in Malawi and the LINKAGES Health Care Workers Manual is in the final stages of completion, addressing stigma and discrimination and the unique needs of each key population group in health care facilities.

In addition, LINKAGES is working to make PrEP available to members of key populations and while there is still ambiguity in the arguments for using Prep, we know that ending the epidemic is only possible if recent scientific advances, interventions, and tools are available to everyone who needs them. This is big ambition.

Despite these successes and opportunities, LINKAGES and its partners will continue to face formidable hurdles to addressing the deep-rooted, complex set of issues that members of key populations face. We will continue to face legal barriers, lack of resources, and stigma and discrimination. But across the globe, members of key populations are organizing in the struggle to leap over these hurdles and we will continue to join and support these efforts, for often times with something so big there will be great struggle. But without struggle there will not be progress.

LINKAGES is big and it is bold but with this type of size, growth, and excitement comes great responsibility: a responsibility to leave a global legacy for key population work; to have wisely invested resources to create a sustainable, relevant impact; to have formed meaningful partnerships; and to have pioneered new strategies and opened doors for purposeful engagement of all key population groups in civil society, leaving a road map that will exist long after the 5 years of LINKAGES has ended.

LINKAGES, along with its partners, is working to leave an impact and acting with the sense of urgency that exists around addressing the needs of key populations. We have tremendous work ahead, for the demand is high and the need is great, going far beyond LINKAGES, far beyond our partners. This is bigger than us and there is no passion to be found in playing small.

Working with Key Populations in Zambia: An Introduction to the Standard Operating Procedures of an HIV/STI Prevention Program for Sex Workers

Joseph Kamanga is the Chief of Party/Project Director for the Corridors of Hope III project in Zambia. The COH III project is implemented by FHI 360 with two local NGOs, in 10 major border and transport hubs of Zambia.

HIV and AIDS continue to be a major developmental challenge for Zambia, as well as other countries in sub-Saharan Africa. The HIV prevalence in Zambia is currently estimated at about 13% among the sexually active population, which remains one of the highest HIV prevalence rates in the world.

The Revised National AIDS Strategic Framework (R-NASF 2014-2016) for Zambia recognizes female sex workers as one of the key populations in the HIV response in Zambia. Current evidence shows that a female sex worker is over two times more likely to become infected with HIV and other STIs than are other women in the general population. There are numerous reasons for this scenario, which include engaging in unprotected sex for higher pay, inability to negotiate safer sex (including consistent use of condoms), lack of access to appropriate health services, social stigma and criminalization, sexual violence, and drugs and alcohol abuse. Sex workers’ clients, the majority of whom may be married men and may have other girlfriends, contribute to transmission of infection to and from sex workers and into and from the general population.

It has been 30 years since the first case of HIV was reported in Zambia. Despite targeted interventions to provide HIV treatment to key populations, sex workers, in particular, continue to face barriers to accessing quality HIV prevention and treatment services. In November 2012, I and some other FHI 360 staff in Zambia visited the Bridge Project implementing the Aastha Project in Mumbai, India to gain insight on how to tailor services to the needs of key populations.

Motivated by what we learned from our trip to India, the Corridors of Hope III project/FHI 360 in Zambia, with support and endorsement of the National AIDS Council of Zambia, produced and launched the minimum package of services for sex workers (MPSSW) and standard operating procedures (SOPs) to ensure quality HIV/STI prevention services for sex workers in Zambia. The MPSSW and SOPs were developed with active participation of female sex workers. After these documents were developed, the COH program trained 145 female sex workers as peer promoters of the guidelines.

The SOPs and MPSSW were designed with the aim of helping implementing agencies effectively design, implement, manage, and monitor quality HIV interventions for female sex workers in Zambia in a harmonized and coordinated manner. The SOPs provide step-by-step guidance on how to standardize service delivery mechanisms and assess and improve the quality of the interventions.

Though the MPSSW and SOPs are a work in progress, they provide context and detailed steps for the development of the strategy, structure, individual responsibilities, and monitoring plan for an HIV/STI prevention program. While the minimum package and SOPs were developed for the Corridors of Hope III project, they can be replicated in any setting because the documents explain the fundamental concepts of each strategy. Each SOP has been written to provide the reader with a comprehensive understanding of that specific strategy, as well as links to other related programs to provide a broader perspective. On behalf of COP, I would like to thank our partners and community members who have been instrumental in testing and implementing the strategies described in the documents. It is my hope that the SOPs and MPSSW included here (Final SOP Zambia 7-3-2015Final MPS Zambia 6-10-2014) will guide your work in ensuring that sex workers achieve the highest quality HIV/STI prevention services possible.

People who inject drugs as equal partners in finding solutions

Written by Jennifer Hegle, Senior Program Manager, LINKAGES and Catherine Todd, Scientist at FHI 360

This month, The Lancet published an open letter to Indonesian President Joko Widodo from a group of prominent Indonesian academics and experts decrying their country’s response to illicit drug use. The letter’s authors called on the government to commit to proven public health approaches for addressing drug use and to urgently discontinue counterproductive strategies, such as involuntary rehabilitation and the death penalty. The authors urged the Indonesian Government to scale back punitive measures; expand evidence-based interventions such as opioid substitution therapy, needle and syringe programs, and HIV treatment and care for people who use drugs; invest in collecting better quality data on the scale and nature of drug use in Indonesia; and form an independent national committee on drug use—comprising relevant ministries, researchers, practitioners, and drug-using community representatives—to review drug-related data, set priorities, recommend evidence-based actions, and monitor progress. A harsh, criminalized, ill-informed approach to illegal drug use violates the human rights of people who inject drugs (PWID); hampers HIV-related research; and cripples HIV prevention, care, and treatment efforts among this key population. LINKAGES’ work on these very issues is grounded in an evidence- and rights-based approach to reducing HIV among key populations and their partners and improving their enrollment and retention in care across the HIV cascade. On May 15, 2015, LINKAGES hosted a technical consultation in Bangkok with 51 subject-matter experts in drug user advocacy; harm reduction; and HIV surveillance, monitoring, and evaluation to discuss strategic information issues for people who inject drugs. Strategic information is the systematic collection, analysis, and dissemination of information to optimize programming. Collaboratively, the participants identified gaps in strategic information collection methods, indicators, and use, particularly in ways that respect the rights and needs of people who inject drugs. The participants noted that people who inject drugs are the best source for understanding how to provide services and their involvement in data collection is critical to ensuring a rights-based approach. Edo Agustian, National Coordinator of Persaudaraan Korban Napza Indonesia (PKNI) / Indonesian Drug Users Network shared a positive example of greater community involvement in Indonesia, where PWID networks conduct research in their own communities, often with greater success in finding hidden subpopulations, such as women who inject drugs. Beginning in 2013, PKNI, in collaboration with Oxford University, initiated “Women Speak Out,” a cross-sectional study among approximately 700 women participants. Researchers investigated the factors associated with HIV risk among this subgroup and potential interventions. PKNI established a community advisory group comprising women who inject drugs to inform questionnaire design and guide all ethical and operational aspects of the study. The community-led team received on-going capacity-building from researchers, allowing them to develop marketable skills and knowledge while playing a substantive role in implementation. Outcomes included a strong sense of community ownership of the research and active participation from female respondents in the projects. PKNI’s work demonstrated the value of a transparent, peer-reviewed data collection process that works with the drug-using community as equal research partners rather than research subjects. Unfortunately, in Indonesia, the inclusion of people who inject drugs in strategic information collection is occurring within the context of the country’s “war on drugs.” PKNI reported that increased punitive approaches hampered their recruitment rates. Also, distrust among participants, and their fear of providing information to researchers or health workers, potentially caused reporting bias and increasingly results in hidden communities and higher potential for risky drug use practices. LINKAGES is partnering with people who inject drugs to address barriers like these and many others faced by key populations. We are working to enable greater involvement of people who inject drugs in strategic information data collection, analysis, and dissemination; improved access to integrated HIV and drug treatment services; and greater respect for the human rights of people who inject drugs.