Three ways to turn science into practice to reduce HIV among key populations

Written by Rose Wilcher, Director, Research Utilization, FHI 360, and Hally Mahler, Project Director, LINKAGES

This blog post was originally featured on FHI 360’s Degrees.


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Photo: Jessica Scranton, FHI 360

Next week, leading scientists and cutting-edge thinkers will gather at the International AIDS Society’s 9th IAS Conference on HIV Science in Paris to discuss the latest scientific discoveries in HIV prevention, care and treatment. These discoveries hold the potential to accelerate progress toward the global 90-90-90 targets set forth by the Joint United Nations Programme on HIV/AIDS (UNAIDS). And, they are especially important for key populations — including men who have sex with men, sex workers, transgender people and people who inject drugs — who shoulder a disproportionate burden of HIV. UNAIDS estimates that 45% percent of all new HIV infections among adults worldwide occur among these key populations and their sex partners. Reaching these groups with new technologies and approaches is essential to ending the epidemic.

The headway on display at IAS will, we hope, leave us feeling optimistic. However, science cannot have impact unless it is applied in policy and programs. We are working to translate evidence of what works into widespread practice for key populations through the Linkages across the Continuum of HIV Services for Key Populations Affected by HIV (LINKAGES) project, which is funded by the U.S. Agency for International Development (USAID) and the U.S. President’s Emergency Fund for AIDS Relief (PEPFAR). But progress is slower than it should be, largely because the issues that drive the spread of HIV in key population communities — unrelenting stigma, discrimination, violence and, in many cases, criminalization — also mean that these groups are often the last to benefit from scientific discoveries.

To ensure that new technologies and emerging evidence-based practices reach those who want and need them most, we should do three things.

We need more community-led demand for the latest evidence-based innovations. Even the most compelling evidence does not put itself into practice, especially for the benefit of the most marginalized. When members of key populations demand access to innovations that could make a difference in their lives, that is often the needed catalyst to move research to practice. Organizations led by key populations are chronically underfunded and undervalued, but their voice and engagement are critical to ensuring that evidence-based practices reach them in a way that is safe, appropriate and responsive to their needs.

For example, great strides have been made in recent years using pre-exposure prophylaxis (PrEP) as a new HIV prevention option, and it is sure to be a hot topic at the IAS conference. But, PrEP implementation, particularly for key populations, is complex and moving slowly. The International Treatment Preparedness Coalition (ITPC), a LINKAGES partner, recently convened a global think tank meeting with stakeholders representing the communities that are most affected by HIV to discuss how best to increase access to PrEP. “This was the first time that people from different communities from across the globe sat together in one room to discuss how to demand PrEP on their own terms,” said Solange Baptiste, executive director of ITPC. The discussions at that meeting are informing an upcoming global policy brief and an activist toolkit on PrEP that can accelerate implementation.

We must create an environment that enables the delivery and uptake of evidence-based interventions among those who need them most. Even when the latest prevention, care and treatment options and services are available, stigma, violence and discrimination from health care providers, family members, police, and partners hinder access to services. In many of the countries where LINKAGES works, including Botswana, Cameroon, the Dominican Republic, Kenya, Malawi and Suriname, we are systematically integrating violence prevention and response into HIV programming for key populations. We are working to mitigate stigma in health care facilities through the introduction of a text-message-based quality assurance tool that gathers information about key populations’ experiences of stigma and discrimination at health facilities and assesses overall client satisfaction with the care they received.

But, work to dismantle stigma and address violence against key populations, including through policy and legal reforms, always needs more attention. We will miss opportunities for the science to have maximum impact if the environment in which the science needs to be applied is not also progressing.

We need to accompany these efforts with the generation of more evidence through implementation science. Such investments will build collective knowledge about how to introduce proven interventions in real-world contexts, thereby speeding up the pace of replication and implementation at scale.

At the IAS conference, LINKAGES and colleagues from USAID, the U.S. Centers for Disease Control and Prevention (CDC) and amfAR will convene a satellite session that will present findings from implementation science studies focused on key populations that were conducted in Brazil, Peru, Senegal, South Africa and Thailand. Taken together, these studies contribute important new evidence about how to enhance uptake of and retention in services for key populations, across the HIV prevention, care and treatment cascade. They also illustrate how valuable implementation science is to ensuring that proven interventions achieve results through widespread implementation.

The evidence base on HIV and key populations has grown tremendously in the past several years, and more will come to the fore at the IAS conference. We will be participating with an eye toward how we can move the science into practice so that it benefits as many people as possible, as quickly as possible. The science holds much promise; we cannot let implementation lag.

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.

 

 

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.

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: http://www.jiasociety.org/index.php/jias/announcement/view/220

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: http://jiasociety.org/index.php/jias/issue/view/1480

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.