The IDUIT offers practical guidance on implementing HIV programs for people who inject drugs

Written by Brun Gonzalez, Chair of Board of Directors of the International Network of People who Use Drugs (INPUD) and Judy Chang, INPUD Executive Director

Photos provided by: Brun Gonzalez

The Injecting Drug User Implementation Tool (IDUIT), jointly developed by INPUD and the United Nations Office on Drugs and Crime (UNODC), was released this April and is the fourth publication in a series of tools on implementing HIV programs with key populations. It offers practical guidance on implementing HIV programs for and with people who inject drugs (PWID) across the HIV care continuum and contains examples of best practices from around the world that can be used to support efforts to plan programs specific to the PWID community. The tool covers prevention, care, treatment, and support interventions and focuses on partnerships with or by PWID organizations.

The IDUIT is the product of a collaborative process between PWID, advocates, service providers, researchers, government officials, UN agencies, development partners, and nongovernmental organizations. The tool provides a strong platform for emphasizing the importance of community empowerment in reaching PWID with HIV services.

 

“The IDUIT is the result of a very positive and important collaboration between the United Nations and the international community of people who use drugs that reflects… high-level participation and engagement that answers the affirmation ‘nothing about us without us’ in a meaningful and constructive way,” said Brun Gonzalez.

A multidisciplinary group of people came together for a consultation meeting in Bangkok to elucidate optimal approaches for designing, developing, and implementing comprehensive services that meet the real needs of the PWID community. When developing the tool, it was also important to maintain a broad focus on issues that other key populations most at risk for HIV often face.

The sessions were attended by representatives from the UNODC, the Joint United Nations Programme on HIV/AIDS, the World Health Organization, civil society specialists, and members of the PWID community. Individuals working on health and harm reduction service provision, community organizing, and advocacy campaigns brought their unique experiences to the table to discuss best practices and efficient models based on community involvement and strengthening.

The convergence of “top-down” and “bottom-up” perspectives allowed for a rich, comprehensive process that brought together the best of both worlds to develop the IDUIT: the evidence-based, biomedical model and the pragmatic, rights-based model derived from what was referred to as “community wisdom” during the consultation.

It is essential to seek representation of and participation from the people who are immediately affected by the decisions being made when looking to improve harm reduction services and implementation tools. The IDUIT is one step in a long process of fine-tuning and updating the mechanisms set in place at an international level.

“I’ve been where they are”: a LINKAGES Malawi Photo Story

Click the image below to open the photo story of Caroline, a peer outreach worker reaching sex workers in Malawi.

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.’”

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

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

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

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

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

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

Clarence looks out the window.   Photo credit: Christio Wijnhard

 

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

 

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

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

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

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

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

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

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

 

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

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

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

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

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

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

Photo Credit: MTV Shuga

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

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

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

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

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

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

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

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

 

Commission on the Status of Women & Transgender Women

Written by Beyonce Karungi, Executive Director, Transgender Equality Uganda

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

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

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.

Mutual learning, mutual success: the benefits of building the collective capacity of members of key populations

Written by Alice Olawo,  Senior Program Officer, LINKAGES Kenya 

Harmful gender norms and inequalities increase violence and HIV risk while limiting the use of HIV services by members of key populations (men who have sex with men [MSM], transgender people, people who inject drugs [PWID], and sex workers [SWs]). Identifying and working to transform the gender norms most harmful to KPs can strengthen HIV-focused programs. LINKAGES conducted a gender analysis in Kenya to examine how gender norms and inequalities affect key populations’ (KPs’) HIV risk and use of services across the HIV prevention, care, and treatment cascade. One of our explicit study goals was to build capacity in conducting a gender analysis among members of KPs. This blog describes our process, outcomes, and the importance of collective capacity building to both the study results and the KPs with whom we partnered.

Application of Gender Analysis Recommendations to HIV Prevention, Care, and Treatment Cascade

From the beginning, KP members informed the gender analysis through their participation in a technical working group that participated in study design. The same technical working group recruit and select 10 research assistants (RAs)—representing each of the four KPs. RAs went through a week-long training that covered basic information about all four KPs (which provided opportunities for RAs to teach one another), gender norms and inequalities as barriers to HIV prevention and treatment, and qualitative research. As the study was implemented, RAs worked in KP-specific teams where they received continuous support from one another and from me, the study coordinator, and the principle investigator. By the end of the gender analysis, the RAs had helped design interview guides; recruit gender analysis participants; conduct key informant interviews with representatives from KP-led organizations, government officials, program managers and funders, and health care workers in Nairobi; and package and present the findings from the gender analysis.

Because the study had a specific capacity-building goal, we charted each RA’s progress. I personally observed the gains that each made in qualitative research, including increased confidence in conducting interviews and improved ability to ask probing questions. In interviews and surveys after the gender analysis was completed, RAs reported that their participation in the project enhanced their skills in writing proposals, conducting research, data analysis, and public speaking. I also saw them learn an incredible amount from one another— valuable skills and lessons beyond those learned specifically for the gender analysis. During the gender analysis, SW RAs, who were particularly empowered to stand up for their rights, supported members of other KP groups on effectively advocating for human rights, equality, access to services, and an end to violence. RAs representing SWs, MSM, and PWID also provided important information to the transgender RAs on how to collaborate effectively with the Ministry of Health and their KP programming, a new set of stakeholders for the local transgender-led organization. Since the conclusion of the gender analysis, I have also seen some RAs leverage their new skills, including working as RAs on other studies, leading trainings on research, speaking internationally at conferences, obtaining fellowships, and writing proposals. Read more about the efforts of some of our RAs in the LINKAGES KP heroes blog series.

The capacity-building process, simply by bringing together members of each KP and providing space for mutual teaching and learning, was also able to help build a shared understanding and to strengthen networks. The transgender RA team expressed that they greatly appreciated the opportunity to teach other KP members what it means to be transgender. All the RA teams noted a better understanding of other KPs and a desire to collaborate more closely. And I was impressed by how the RAs across KP groups connected with each other as the study was implemented. They both supported one another professionally—for example, by forming a WhatsApp group to exchange experiences and challenges from their interviews—and personally.

Finally, the benefits of engaging in capacity building by no mean ended with the RAs themselves. As is rightly illustrated in the slogan “nothing about us without us,” it is not possible to conduct research related to KPs without members of KPs leading the way. In our case, the technical working group was an incredible asset but it was the enthusiasm and expertise of the RAs that helped us to go the last mile. The RAs made it possible for the gender analysis to ask the right questions, to successfully seek out a wide variety of key informants, and to hear candid responses from many that would not have been eager to speak to a data collector to whom they could not relate. And the ability to get accurate information from a wide variety of sources meant that the results of the gender analysis could lead to real change. For example, NASCOP has begun to implement a training for health care workers on addressing violence against KPs and is in conversations with transgender-led organizations on expanding KP programming to include transgender individuals. And all of these efforts will continue to be supported by the same RAs who were so instrumental in collecting the original findings.

If you are interested in conducting a gender analysis with KPs that includes a capacity-building element, check out our new KP Gender Analysis Toolkit. If you would like to read more on the results of the gender analysis, check out the four-part Nexus of Gender and HIV brief series. The briefs can be used by individuals and organizations that deliver services to members of key populations; those participating in program design and monitoring and evaluation; and decision makers and funders supporting the programs.

Bio

Alice Olawo works for the LINKAGES Kenya Project as a senior program officer. Prior to this, she worked as the study coordinator during the implementation of the LINKAGES Gender Analysis Study in Nairobi, where she learned the importance of involving KPs in the process of conducting research and the benefits of building their capacity in this way.