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.

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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.”

 

Commission on the Status of Women & Transgender Women

Written by Beyonce Karungi, Executive Director, Transgender Equality Uganda

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

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

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Beyonce Karungi presenting at a sex worker panel during CSW

I was one of the few transgender women present at the latest CSW. While there, I participated in many forums including development of the UN Women’s Strategic Plan development (2018-2021) at the UN headquarters. We lobbied UN women to include the transgender community in the strategic plan by connecting us with country offices and registering us to participate not only in trans-specific events but also in the main CSW discussions that typically include all women and girls.

At CSW, I also participated in a sex worker session focused on the conditions faced by this key population. Internationally, policy discourse has shifted in many ways to defend sex work as real work. Still, efforts to criminalize clients are unaligned with what sex workers need in order to be able to thrive as workers.

I was also involved in the Lesbian Bisexual Transgender Intersex (LBTI) women’s session. LBTI women are not explicitly mentioned as a vulnerable group in many spaces. This cultural stance and attitude is in large part internalized by LBTI people, which creates a strong obstacle to self-identification. The stigma surrounding LBTI women makes them a socially invisible community within general society. The result is that, with a few exceptions, the most vocal leadership of LBTI women’s rights has traditionally been men.

CSW participants discussed many issues, including peace and security for women and human rights defenders, sexual and reproductive health and rights, maternal health, gender-based violence, and family planning. Transgender women and girls continue to be excluded from the economic, political, and social sectors, which limits their access to education, health services, and employment.

While one of the main goals of the CSW is to empower all women and girls, transgender women remain unfairly marginalized.

The CSW needs to ensure that transgender people are represented and that data collection is supported so we can begin to advance the livelihood and well-being of transgender women everywhere. It is within the power of the CSW to include all women in discussions on women’s status in the world, and doing so will increase the awareness and importance of transgender inclusion, health, and rights.

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

 

 

Key Population Hero: I support TRANS rights, do you?

Written by Amitava Sarkar (preferred name – Amrita), Co-chair, IRGT

“Please help, somebody please help!” Despite my shouting, my two friends and I drew no attention from passersby. We were surrounded by at least 10 men who were beginning to get violent. This happened in Kolkata, a metropolitan city of India, also known as “City of Joy,” though sometimes it becomes “City of Horror” for trans people like us.

fullsizerenderGoddess Durga is the Goddess of Power, and she is worshiped in India and other places of the world, but in Kolkata she is celebrated with special zeal. Temporary temple-like structures (called Pandals) are created in and around the city, where she is worshipped by visitors from different parts of the state and country, and sometimes from outside the country as well. This incident took place in front of a huge crowd visiting one of these Pandals in South Kolkata. It was very difficult to rescue myself from that situation, but ultimately I was able to run away while the men were busy clearing space to torture the three of us. I remember that as I was trying get free, no one from the large crowd that had gathered came to our aid despite our pleas for help.

This is just one example of violence that took place in a public space, in a metropolitan city, and in front of huge crowd. One can easily imagine how frequent these experiences are for trans people, and how difficult it often is for transgender woman to escape from these acts of violence. Other kinds of violence (mainly gender-based) against transgender women take place everywhere—within families and by intimate partners, at educational institutes and work places, and when trying to access health services. Data[1] show that in 2016, 21 transgender people died from violence-related causes; however, I believe the number is much higher, because I can recall what is happening just in my own country. There was an “honor killing” of a trans women a couple of months ago, and one can imagine that many similar incidents are taking place around the world but are not documented.

The way out is to work at two different levels—building the capacity of the community to advocate for themselves and continuing effective advocacy initiatives for stakeholders and policymakers. My journey toward this goal started when I met JoAnne Keatley (co-chair, IRGT) for the first time in Mexico during the 2008 AIDS conference. After observing the handful of trans women represented and the limited coverage of trans issues in such an important and international conference, we discussed the need to build a global-level platform for trans advocacy. Finally, we are here today with IRGT, a global network of trans women and HIV, comprising 18 very active members from different parts of the globe who are leading trans activists and doing commendable jobs for our community.

IRGT seeks to safeguard the health and human rights of transgender people and is able to conduct this work through a variety of important partnerships. With LINKAGES we are working to:

  • Mobilize and sustain advocacy by trans communities for service improvements in the response to HIV and AIDS
  • Foster trans leadership skills to create a new generation of articulate, tech-savvy advocates who can present their constituencies’ needs to government, health care workers, and police
  • Provide technical support and tools to inform national policy, program design, and management for trans populations

Apart from this, IRGT is one of the 10 member organizations supported by Robert Carr Civil Society Networks Fund, to form the Consortium of Men who have Sex with Men (MSM) & Transgender Networks. This consortium is a coordinated effort to address the factors that affect MSM and transgender health and human rights, leverage our respective complementary strengths as advocacy and technical support providers, strengthen community responses via consolidated mechanisms for information exchange, and raise awareness through media outreach.

IRGT has received another important award from ViiV Healthcare for implementing training workshops for trans women and organizations spread across various parts of the globe. The project will conduct training of trainers with eminent trans leaders to help build the capacity of trans-led organizations.

Several other recent developments have raised the visibility of trans rights, many with the support of LINKAGES. This past summer, IRGT organized the first-ever trans pre-conference event in Durban, South Africa during AIDS 2016. IRGT also helped lead the development of the TRANSIT, global guideline on implementing HIV and STI programs for trans people, and has published studies about issues faced by trans women, the most recent of which is entitled, “Most Impacted Least Served: Ensuring the Meaningful Engagement of Transgender People in Global Fund Processes.”

My message to my community is this: identify your strong, positive qualities and begin using them for the development of yourself and our community. Believing in an alternative gender or sexual identity is not a crime. Don’t hide your talents and your identities; instead try to come out in true spirit to better serve yourself and your community. From my own experience I have realized that we have to make our own space and we have to support each other. Let’s stand together to take our movement forward for a better and more trans-friendly world, free from violence.

To learn more about IRGT please visit – http://transglobalactivism.org/


 

[1] http://www.hrc.org/resources/violence-against-the-transgender-community-in-2016

Key Population Hero: Human rights for drug users in Nepal

Written by Anjay Kumar, drug user activist in Nepal 

There were an estimated 52,174 people who inject drugs (PWID) in Nepal in 2013 with an annual growth rate of 11.36% (Government of Nepal Ministry of Home Affairs).1 Drug use in Nepal is paired with domestic social, economic, and political issues. Nepal is one of the poorest countries in the world and, as a result, it is ill-prepared to deal with many of the health issues that drug users face, including multi-drug-resistant tuberculosis, HIV and AIDS, and the new threat of hepatitis C.

Drug users in Nepal are often from lower-income and marginalized communities. They are too often stopped, searched, arrested, prosecuted, convicted, and incarcerated with inequitable treatment by the criminal justice system. Some drug users have been detained in prison-like conditions and forced to do unpaid labor. Others have been subjected to physical and psychological abuse in the name of “drug treatment.” Most of the drug users I’ve known have never been out to hurt anybody, but they have their rights taken away, face violence, and are ostracized.  Negative social perceptions, stigma, and discrimination all help to fuel this inhumane treatment toward drug users. Drug use is not recognized as a health issue but instead is seen as a moral depravity, marginalizing a substantial proportion of drug users and depriving them of access to treatment and care.

anjay-speech-rbbIn my opinion, the focus should be on whether a drug user is stable and capable of carrying out their social duties and responsibilities. As a drug user living with HIV, a family man, and a working man, I have been forced to discipline myself after stumbling many times in the past. For me this has been the key to holding my own life together.

The Coalition of Drug Users in Nepal (CDUN) advocates for the attainment of the highest standard of quality health care in a nondiscriminatory and dignified manner for all drug users. We advocate for a human-rights-based approach, substantiated by evidence, to inform policies related to drug use.

We want to change society’s perception of drug users by empowering them to lead noble and productive lives and to contribute to society.

We are also in the process of consolidating lessons learned from former drug users who later became care providers for their peers. These individuals provide care to drug users when others will not, due to discrimination. CDUN endeavors to promote these best practices and other emerging evidence to create a larger social impact for drug users. We envision a world where every person with a history of drug use is equipped to make informed, personal choices without fear of being denied their health, human rights, or prospect for a fulfilling social existence.


Anjay Kumar KC, aka ‘The Impactivist’ (for impact + activist), is a drug user activist and advocate for health, human rights, and harm reduction for drug users and HIV related policy in Nepal and globally. Anjay is also a person living with HIV and Hep C co-infection and a proud family man supporting a wife and child who are also living with HIV. He has been fighting against social injustice and working with most at risk, vulnerable and key affected populations such as PWID, LGBT, FSWs, migrants and AIDS orphans since 2002.

Trans lives matter: Advocating for the rights of young trans women in Kenya

Written by Alesandra Ogeta, Research and Advocacy Officer, Jinsiangu Organization

I am living in a country that is quickly transforming into an open, democratic, and economically vibrant society. Despite the increasing freedoms in socio-economic and political spaces, the same cannot be said for minority and vulnerable groups such as the transgender community. Basic freedoms for transgender people remain limited, resulting in exploitation and gross humaLexy Ogetan rights violations against them.

A number of factors combine to make the environment ripe for widespread human rights violations against transgender people. Limited resources to adequately address human rights violations is one of these factors, perhaps the most significant one. Also, because trans people cannot have their identified gender on legal identification documents in Kenya, they are limited in education and job opportunities and often feel they have no choice but to engage in sex work, which leads to other high risk behaviors.

Transgender people often are not prioritized in the HIV response in comparison to other key populations, even though HIV prevalence is high among trans people. Programs designed for MSM populations are conflated to include transgender people; the soup is spoiled in this design! Creation of transgender specific programs is key. Programmers should not assume that if something works for the MSM community, it will work for the transgender population. Limited education on risk factors leads to high prevalence. Most trans people are not aware of risk factors for acquiring HIV. Education is also key, especially for young trans people.

The challenges facing young transgender people are wide-ranging. They include depression; low self-esteem; suicidal ideations; HIV and AIDS; drug abuse; discrimination in accessing public health services and employment opportunities; physical, sexual, and verbal abuse; parental neglect; and stigmatization and vilification from the public, the media, and religious fundamentalists.  Essential for any young trans woman is to personally affirm her identity as a woman, and she might participate in risky sexual behavior in order to achieve this. These behaviors could include being submissive when it comes to negotiation of condom use (therefore agreeing not to use a condom), accepting violence in relationships, and a general inability to defend herself against patriarchal males. Coercion to engage in unprotected sex, blackmail, and physical violence usually occur because a young trans woman is afraid of being exposed as trans to the general public; she will do anything to avoid this exposure.

Advocacy for rights and legal identification are two areas where the transgender community in Kenya is focusing its efforts. The fact that Kenyans do not accept transgender people’s rights to change their sex and name on legal identification and academic documents, and that trans people face psychological and physical violence, calls for more effective outreach to the general public to help them understand transgender people. Trans lives matter, and we must work hand-in-hand to combat these challenges.

Alesandra Ogeta a transgender activist working in Kenya with the Jinsiangu Organization as a Research and Advocacy Officer. Her initiatives have resulted in gains for the transgender community including the ability to change particulars in national IDs and passports. She currently sits on the board of the Transgender Education and Advocacy Organization in Kenya.

Key Population Hero: Meeting the unique needs of transgender people in Kenya

Written by Dalziel Leone, social justice advocate in Kenya

The following is a fictional example of what trans people in Kenya often face when presenting at a clinic for HIV testing:

“Are you a man or a woman?” the nurse asked him as she scanned him from head to toe.

Kaya is a transman who was recently a victim of violence and presents at a clinic for HIV testing.

“I am here for HIV testing,” Kaya replied with no regards to the question. The nurse kept talking to other nurses about how Kaya is a woman pretending to be a man and pointing out to him that he attracted the violence he experienced. This is a common experience for trans people when they seek health care services.

Although transgender individuals are recognized as key populations in other parts of the world, this is not the case in Kenya. As a researcher who studies trans issues and a member of the transgender community in Kenya, I add my voice to those advocating for greater recognition of transgender people in Kenya, especially for services designed to meet their unique needs.

Compared to other key populations (sex workers, people who inject drugs, and gay men and other men who have sex with men), I feel the transgender community is a forgotten population in HIV programming. In Kenya, other key populations have exclusive spaces where their holistic needs are integrated into HIV programming. Transgender people are sometimes asked to use these spaces, (i.e., clinics that offer HIV services to other key populations), but the damage this might cause to a transgender individual is not taken into consideration. Despite being at high risk of HIV infection, trans people tend to shy away from these exclusive spaces because their gender is not affirmed, and their needs are often left unmet.

Trans people have unique health service needs, including gender-affirming services, psychosocial support, and hormone replacement therapy. Also, many trans people consider transitioning to be more important than all other needs and most will do anything to get this need met.

Creating exclusive spaces where HIV services are offered in conjunction with gender-affirming services will likely increase the uptake of HIV testing and treatment among trans people.

Hormone replacement therapy is often taken for a lifetime, which makes it costly over time. Offering (free or low-cost) hormone replacement therapy in exclusive spaces will attract trans people because their holistic needs will be met in addition to HIV testing and treatment. Hormone replacement therapy also requires frequent visits to a medical center to monitor how the hormones interact with their body. If these medical check-ups were offered at trans-exclusive centers, trans people could also receive HIV services during their regular visits; this is especially important considering that medical transitioning requires one to be healthy and aware of one’s HIV status, and closely monitored if they are HIV positive. An exclusive space would also feel much safer for trans people because they won’t face discrimination and stigma or need to educate medical providers about what it means to be transgender. It is important for health care providers who work with trans people to create spaces that offer services to meet the holistic needs of trans individuals instead of trying to blend them into existing, unfit spaces that don’t meet their needs.

About this key population hero: Dalziel Leone is a young, avid, and exploratory social justice activist and blogger from Kenya who happens to be a trans man. He is committed to improving transgender lives in Africa. He is a former Open Society Foundation Fellow where he worked with Iranti-Org and Fahamu Network for Social Justice focusing on trans and gender nonconforming individuals across Africa. He has worked with FHI 360 under the LINKAGES project as a research assistant, focusing on transgender health research and with Pathfinder International, focusing on sexual reproductive health among students.