Community mobilization

Community leadership driving progress to eliminate mother-to-child HIV transmission in Indonesia

07 March 2024

Ibu Mawar (not her real name) learned she was living with HIV after receiving a test during an antenatal care visit.

 “I was surprised, of course, when they told me. But I didn’t really doubt or deny the result,” she remembered from the Sorong City Health Office in West Papua. She immediately started treatment to prevent transmission to her son. “Even though I’m positive,” she said, “our child is not.”

In principle, since 2009 every pregnant woman receiving antenatal care in Indonesia should receive an HIV test. And every woman found to be living with HIV should receive medicines to prevent transmission to their babies just as Ms Mawar did.

But this isn’t yet the reality.

In 2022 more than one-third (37%) of all pregnant women in Indonesia did not get screened for HIV and just 18% of mothers living with HIV had access to antiretroviral therapy. There were an estimated 2800 new HIV infections among children that year.

But now stakeholders in Indonesia are mobilising. Not only will they scale-up prevention of mother-to-child HIV transmission services, but they will work toward eliminating vertical HIV transmission while assuring the health and wellbeing of women and children living with HIV. At the centre of this approach is the engagement of women, who comprise roughly one-third of the adult population living with HIV.

In June 2023 Indonesia established the National Alliance to End AIDS in Children. This partnership between government, civil society and international organizations seeks to provide access to health services and support for women and children living with HIV. It has committed to three main priorities. The first is advocacy for the needs of adolescent girls and children living with HIV. Second is promotion and dissemination of information on Prevention of Mother-to-Child Transmission (PMTCT), Early Infant Diagnosis, treatment literacy and comprehensive sexual education. And third is the empowerment of communities regarding issues pertaining to children living with HIV.

The Alliance’s first major initiative was an Elimination of Mother-to-child Transmission symposium—the first ever in Indonesia. Partners have embraced the World Health Organization (WHO) triple target of eliminating mother-to-child transmission of HIV, syphilis and hepatitis B by 2030. A series of sessions were delivered in-person and online. A total of 115 participants from the government, communities, academia, healthcare and media joined the EMTCT Symposium in Jakarta.

Dr. Laila Mahmudah, Head of the Neo Maternal Division at the Ministry of Health, underlined the importance of accelerating EMTCT efforts across the range of issues. She noted that currently 66% of pregnant women received hepatitis B early detection services while just 25% of pregnant women are tested for syphilis.

Multisectoral stakeholders and participants discussed strategies with participants from Malaysia and Thailand, which have both received EMTCT validation for HIV. Dr Anita Suleiman, Director of Disease Control of the Ministry of Health of Malaysia, pointed to the importance of effective leadership and health system governance for country-wide implementation.

“One of the lessons from countries that achieved EMTCT is that it is possible to end AIDS and vertical transmissions, especially in low-prevalence regions like Indonesia, through robust governance and good-quality performance. Indonesia can also achieve EMTCT by 2030, and I hope this symposium leverages the coordination efforts towards the elimination of HIV, syphilis and hepatitis B,” said Dr Shafflq Essajee, Senior Advisor, HIV, UNICEF New York.

However, it was emphasised that political commitment must be bolstered by community-led strategies to reach and retain mothers living with HIV. Community mobilization and community health workers are critical approaches. Ikatan Perempuan Positif Indonesia (IPPI), the national network of women living with HIV, also endorsed the Thai approach of providing free formula for mothers living with HIV in low-resource districts.

Ayu Oktariani, IPPI National Coordinator and a member of the National Alliance to End AIDS in Children reiterated her organization’s commitment to implementing the community-led strategies in support of EMTCT in the coming years.

“This Symposium means more than words I can explain,” said Ayu Raka from the Akar Cinta Kasih Foundation, a community organisation in Bali. “When I return to Bali, I will advocate for EMTCT with local multisectoral stakeholders and communities in my region. I am confident we can make a healthier society and improve health for all mothers and babies.”

UNAIDS Country Director for Indonesia, Krittayawan Boonto, promised the continuous backing of UNAIDS.

“We will continue to support not only mothers, but also fathers, in protecting babies from new HIV infections. I wish for Indonesia to become the fifth country in Asia Pacific to achieve EMTCT. But we can only do it with the leadership of communities,” she ended.

Responding to gender-based violence through sorority and information

15 December 2023

In the quiet corner of a community center in Guatemala City, 29-year-old Emma - fictitious name - sits among other women she does not know. In the faces and gestures of each of them, you can see that they all carry the weight of violence and injustice on their shoulders.

The first subtle rays of sunlight gradually fill the room; calm and comfort invite Emma and the others to feel more relaxed in their hearts and souls. With tired eyes, small hands, and a heart scarred by violence, she looks around, absorbs the energy of the place, and takes a deep breath as she awaits the start of a therapy session and an informative talk about HIV.

As the therapy session began, Emma shyly and cautiously shared her experiences with Wendi Polanco, who, since 2019, has become a helping hand for many women battered by gender-based violence. Through Latiendo Juntas, the organization she leads in Guatemala, Wendi clearly proves that sisterhood works and is transformative.  

With support from UNAIDS, Latiendo Juntas coordinates a project to improve access to comprehensive health services, including sexually transmitted infections (STI) and HIV testing and care for women survivors of violence. They also contribute to their resilience and empowerment by raising awareness of human rights, including their sexual and reproductive rights, through group therapy and HIV information talks, which provide facts and a platform for open dialogue, fostering a non-judgmental environment.

"The room becomes a sanctuary where the pain of women like Emma and so many others is recognized," says Wendi. "The community center is a refuge for them, and a network of support among the women is woven with the sun's warmth. I feel relieved when I see how the weight on their shoulders begins to lessen."

Throughout these therapy sessions, Emma and other women discover comfort and empowerment. The therapeutic journeys offered at Latiendo Juntas become a catalyst for their resilience, liberation, and self-care.

The link between HIV and violence against women is a widespread problem, as gender-based violence increases women's vulnerability to HIV infection. Women who experience violence may have difficulty negotiating safe sexual practices, including the use of condoms, which increases their risk of contracting HIV. In addition, fear of violence may deter women from seeking HIV testing, treatment, and support, perpetuating the cycle of violence and silence and limiting their access to critical and essential healthcare resources.

Violence against women in Guatemala is endemic and can be described as a shadow pandemic. The country has one of the world's highest rates of femicide: the intentional murder of women because they are women.

"Addressing the intersection of HIV and violence against women requires comprehensive efforts that include education, empowerment, and dismantling gender-based power imbalances," says Irene Izquieta, UNAIDS Advisor on Rights and Gender for Guatemala, Honduras, and Nicaragua. 

Ahead of World AIDS Day UNAIDS is calling for urgent support to Let Communities Lead in the fight to end AIDS

30 November 2023

A new report by UNAIDS demonstrates the critical role communities play, and how underfunding and harmful barriers are holding back their lifesaving work and obstructing the end of AIDS.

LONDON/GENEVA, 28 November 2023—As World AIDS Day (1 December) approaches, UNAIDS is urging governments across the world to unleash the power of grassroots communities across the world to lead the fight to end AIDS. A new report launched today by UNAIDS, Let Communities Lead, shows that AIDS can be ended as a public health threat by 2030, but only if communities on the frontlines get the full support they need from governments and donors.

“Communities across the world have shown that they are ready, willing and able to lead the way. But they need the barriers obstructing their work to be pulled down, and they need to be properly resourced,” said Winnie Byanyima, Executive Director of UNAIDS. “Too often, communities are treated by decision-makers as problems to be managed, instead of being recognised and supported as leaders. Communities are not in the way, they light the way to the end of AIDS.”

The report, launched in London during a World AIDS Day event organized by the civil society organization STOPAIDS, shows how communities have been the driving force for progress.

Community advocacy from the streets to the courtrooms to parliaments has secured groundbreaking changes in policy. Communities’ campaigning helped open up access to generic HIV medicines, leading to sharp, sustained reductions in the cost of treatment from US$ 25 000 per person per year in 1995 to less than US$ 70 in many countries most affected by HIV today.

Let Communities Lead shows that investing in community-led HIV programmes delivers transformational benefits. It sets out how programmes delivered by community-based organizations in Nigeria were associated with a 64% increase in access to HIV treatment, a doubling of the likelihood of HIV prevention service utilization, and a four-fold increase in consistent condom use among people at risk of HIV. It also notes how, among sex workers reached by a package of peer-based services in the United Republic of Tanzania, the HIV incidence rate was reduced to below half (5% vs 10.4%).

“We are the vehicle for change that can end systematic injustices that continue to fuel HIV transmission. We have seen groundbreaking developments with U=U, improved access to medicines, and have made great strides in decriminalisation," said Robbie Lawlor, Co-Founder of Access to Medicines Ireland. “Yet, we are expected to move mountains without being financially supported. We are supposed to fight for a more equitable world and are tasked with dismantling stigma yet are side-lined in crucial discussions. We are at a tipping point. Communities can no longer be relegated to the periphery. The time for leadership is now.”

The report highlights how communities are at the forefront of innovation. In Windhoek, Namibia, a self-funded project by the youth Empowerment Group is using e-bikes to deliver HIV medicines, food and adherence support to young people who often cannot attend clinics due to their schooling hours. In China, community organizations developed smartphone apps that link people to self-testing which contributed to a more than four-fold increase in HIV tests across the country from 2009 to 2020.

The report reveals how communities are also holding service providers to account. In South Africa five community networks of people living with HIV inspected 400 sites across 29 districts and conducted more than 33 000 interviews with people living with HIV. In the Free State province, these findings led provincial health officials to implement new appointment protocols to reduce clinic wait times and three- and six-month dispensing of antiretroviral medicines.

“I am extremely concerned about the exclusion from health services of key populations like the LGBT+ community,” said Andrew Mitchell, Minister of State for Development and Africa. “The UK champions the rights of such communities, and we will continue to protect them, working closely with our partners in civil society. I thank UNAIDS for keeping us focused on the inequities driving the pandemic and I look forward to working with our partners to champion the voice of people living with HIV and end AIDS as a public health threat by 2030.”

Despite the clear evidence of community-led impact, community-led responses are unrecognized, under-resourced and in some places even under attack. Crackdowns on civil society and on the human rights of marginalized communities are obstructing communities from providing HIV prevention and treatment services. Underfunding of community-led initiatives is leaving them struggling to continue operating and holding them back from expansion. If these obstacles are removed, community-led organizations can add even greater impetus to end AIDS.

In the 2021 Political Declaration on ending AIDS, United Nations member states recognized the critical role communities play in HIV service delivery, particularly to people most at risk of HIV. However, whereas in 2012, when over 31% of HIV funding was channelled through civil society organizations, ten years later, in 2021, only 20% of funding for HIV was available—an unprecedented backsliding in commitments which has cost and is continuing to cost lives.

“At this time, community-led action is the most important countermeasure in the AIDS response,” said Solange Baptiste, Executive Director of the International Treatment Preparedness Coalition. “Yet, shockingly, it isn’t a cornerstone of global plans, agendas, strategies, or financing mechanisms for improving pandemic preparedness and health for all. It is time to change that.”

Every minute, a life is lost to AIDS. Every week, 4000 girls and young women become infected with HIV, and out of the 39 million people living with HIV, 9.2 million do not have access to lifesaving treatment. There is a Path that Ends AIDS and AIDS can be ended by 2030, but only if communities lead.

UNAIDS is calling for: Communities’ leadership roles to be made core in all HIV plans and programmes; Communities’ leadership roles to be fully and reliably funded; And for barriers to communities’ leadership roles to be removed.

The report features nine guest essays from community leaders, in which they share their experience on the achievements they have secured, the barriers they face, and what the world needs to end AIDS as a public health threat.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

Contact

UNAIDS Geneva
Sophie Barton Knott
tel. +41 79 514 6896
bartonknotts@unaids.org

Contact

UNAIDS Media
communications@unaids.org

Contact

UNAIDS Geneva
Michael Hollingdale
tel. +41 79 500 2119
hollingdalem@unaids.org

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Visit this special web site to read the personal stories of nine community leaders

Holy Disrupters: Interview with Reverend Godson, Presiding Bishop of the Methodist Church of Togo

17 November 2023

Holy Disrupters: Interviews with Religious Leaders and advocates on HIV and Compassion

Reverend Godson Dogbéda Téyi LAWSON KPAVUVU, Presiding Bishop of the Methodist Church of Togo

UNAIDS speaks to Reverend Godson about his work on HIV and about some of the challenges he is facing

What was your experience working on HIV in the early days?

I had been studying abroad and when I came back in 1992I found that members of my community were dying. But people weren’t talking about what was causing it, they were giving it nick names. It was of course AIDS. During a pastoral meeting I spoke with the Bishop who told me, ‘young man, this thing is a sin, you can’t talk about it openly here, the community won’t accept it’.  

This was until two or three years later when some of our colleagues from the church became sick and were dying of AIDS. I went back to the bishop and said now we have to talk about HIV. So, I created a small group and I joined up with the association of people living with HIV in Lomé – it was a safe space where people living with HIV could speak openly.

“Young man this thing is a sin, you can’t talk about it openly here, the community won’t accept it.”

We began to advocate with the government, working with the association and with churches and religious leaders in the country. But theologically, HIV was still spoken about as a sin, so if theologically the narrative isn’t correct, it will damage the whole process. So we corrected the narrative to make it clear that HIV is a virus, not a sin. This was the starting point.

“HIV is a virus, not a sin - this was the starting point.”

From then we created small teams within the communities to support people living with HIV and especially to support the families. To break down the stigma we had to start with the families and then the communities. We published books for academics so they could use them to teach, and we trained the young pastors.

Your work with key populations is well known – how did this come about?

I realized the importance of working with key populations when my uncle died in 2000. He was a gay man who contracted and died of AIDS.  I drew on my personal experience with my own family to start working with key populations.

“My uncle died in 2000. He was a gay man who contracted and died of AIDS.”

Today the government has put in place a framework to ensure that everyone living with HIV has access to treatment, but there is still a lot of stigma and discrimination. The loudest voices who have been speaking out are women, the mothers who are saying these are our children, how can we discriminate against our own children. So, we have engaged them in our efforts to break down the stigma around HIV and around key populations.

How has your work changed today?

Treatment is there, Togo has a plan for treatment and treatment is free of charge. But a real issue is adherence and how people can maintain their treatment within the communities amidst the ongoing stigma. We are training mentors and supporting volunteers to encourage people to stay on treatment.  It’s how best to support people in their families and within their communities.

“Togo has a plan for treatment and treatment is free of charge. But a real issue is adherence”

The human and social dynamics around HIV in Africa are complex. We have three generations now of children who are living with HIV, many who have been orphaned because of epidemic and having to explain to them that their parents loved them and didn’t want to pass on the virus, this can be hard. I have had experience with young people who have attempted to take their own lives because it’s too much for them, and we are there, the church is there to support them.

“I have had experience with young people who have attempted to take their own lives because it’s too much for them”

We are due to end AIDS among children in Africa by 2025 but to do this we are facing many challenges, not just access to testing and treatment, it’s about poverty, local contexts, social conflicts, military coups and migration. But if you put paediatric HIV at the top and give faith leaders the opportunity to organize women’s desks and children’s activities around that we can start educating children and young people about HIV, how to prevent it and they can have their own language to communicate among themselves.

I’m asking my colleagues from the religious communities to come to the forefront of the fight against AIDS and to integrate HIV into their messages especially around ending AIDS among children in Africa. 

Related: Interview with Professor Mohamed Karama, working with Islamic Relief on the HIV programme, Kenya

Related: Interview with Thabo Makgoba, Archbishop of Cape Town

Related: Interview with Thabo Makgoba, Archbishop of Cape Town

Related: Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV

Related: Communities of Faith Breakfast: Building Partnerships for a One-Community Response to HIV. Prioritizing Children in the HIV Response

Holy Disrupters: Interview with Professor Mohamed Karama, working with Islamic Relief on the HIV programme, Kenya

15 November 2023

Holy Disrupters: Interviews with Religious Leaders and advocates on HIV and Compassion

Professor Mohamed Karama, working with Islamic Relief on the HIV programme, Kenya

UNAIDS speaks to Professor Mohamed Karama about confronting stigma and his concerns for the future

How has the faith community engaged in the response to HIV?

I am a researcher with the Kenya Medical Research Institute and my background is from the Muslim community. Faith communities have become increasingly engaged, first with HIV then with COVID, and now the faith community are part and parcel of not only health but many other government programmes.

How big of a problem is HIV-related stigma among the Muslim community and how do you deal with that?

Stigma has been very high amongst Muslims because for many years there has been a misconception that HIV is one of the punishments for wrongdoing.  

To address the challenges of stigma we have had to address it from the Islamic scriptures and from the teachings of faith. This is what we have been doing for the last few years, and although stigma still remains, we have been able to break down some of the barriers this way.

“For many years there has been a misconception that HIV is one of the punishments for wrongdoing”

We have been teaching how God prohibits judgement of others, we should never see ourselves as holier than others and we should support the sick. From the Islamic scriptures God says, “I was sick, you didn’t visit me, I was hungry, you didn’t feed me, I was undressed, you didn’t clothe me.” And the people reply, “but you are God how can we do that?”

God says “Your brother was sick, you never visited him, if you had visited him you would have found me there. Your brother was naked, if you had clothed him you would have found me there, your brother was hungry, if you had fed him you would have found me there.” Allah says have mercy on those who live with you on earth so that he the great can have mercy on you as well.

These teachings are very strong, they discourage stigmatization, they discourage looking negatively at the sick, any sickness, HIV included.

What’s the biggest challenge you are facing in Kenya at the moment?

Young people 15 to 24 are sexually very active and increasingly liberalized, unlike before where social containment was very heavy, now it’s no longer the case. So we have to reactivate our HIV prevention programmes and re-strategize how to deal with these new dynamics.

What concerns you about the future?

I want to start with PEPFAR (the United States President's Emergency Plan for AIDS Relief), I’m an epidemiologist and I think that if we slack a little we are likely to lose the momentum, and losing the momentum might be too expensive to rebuild—too expensive to rebuild the motion and to sustain the momentum. The progress we have made in the last 40 years cannot be lost, so much has been achieved to date we mustn’t lose it.

“Losing the momentum might be too expensive to rebuild”

(concerning the reauthorization of PEPFAR)

 

What can the United Nations do better?

The United Nations also needs to work more closely together as partners with the faith-based community, the technical experts and the researchers. That way not only can we address HIV, but we can also address other pandemics that are likely to come in the future.

Related: Interview with Thabo Makgoba, Archbishop of Cape Town

Related: Interview with Thabo Makgoba, Archbishop of Cape Town

Related: Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV

Related: Communities of Faith Breakfast: Building Partnerships for a One-Community Response to HIV. Prioritizing Children in the HIV Response

Holy Disrupters: Interview with Thabo Makgoba, Archbishop of Cape Town

13 November 2023

Holy Disrupters: Interviews with religious leaders and advocates on HIV and compassion

Thabo Makgoba, Archbishop of Cape Town

UNAIDS speaks to the Archbishop of Cape Town, Thabo Makgoba about his work on HIV and his hopes for the future

What was your experience working on HIV in the early days?

I first started working on HIV in around 1998 when I was a rector in Johannesburg and it was a scary time, I remember the South African television adverts saying ‘AIDS kills’ with a coffin that banged—we were all terrified. Everyone was scared, there was a lot of stigma, parishioners were also dying from fear and lack of knowledge.

"There was an immense fear that life had come to an end…."

Through Archbishop Desmond Tutu and others we knocked on every door and established the Anglican Church of Southern Africa’s AIDS programme called ACSA. We hit the ground running but there was an immense fear that life had come to an end….

How has your work changed today?

Today our work has evolved—from fundraising, to incorporating HIV messages in the liturgy, in the prayers and in the readings. Today we make sure we don’t work in silos, we work with the mining companies, with the other churches and we work from an interfaith context—challenging our governments to do the right thing.

Much has happened in recent years and things have changed. There’s a sense of trust that has developed and partnerships now are much easier. As leaders, we have learned to work together, we’ve learned to work together on the ground, but we’ve also learned to work with our international partners. I’m hugely grateful to PEPFAR. Initially there was a degree of suspicion but once we realized, through UNAIDS, that PEPFAR is there to help us check our own resources and to strengthen our resolve to help people – a great deal of trust has been developed.

“There is nothing more pro-life than PEPFAR.”

I pray that PEPFAR will be reauthorized to ensure that the commitments that we have made are realized. There is nothing more pro-life than PEPFAR. Millions of mothers and children have been saved from dying because of PEPFAR.

UNAIDS has also been essential. UNAIDS has showed us how important numbers and record keeping are, how important data is. We have to be systematic, we have to be thorough in our interventions, understanding that evidence-based interventions are critical.

“UNAIDS has showed us how important numbers and record keeping are, how important data is.”

In faith communities you can drown in the tsunami of problems, you throw yourself into your work without really knowing whether the intervention is working. But through praying, partnering with others, looking at the numbers and seeing the impact on people whose viral load has been reduced has been a great experience—we have learned a lot through working with UNAIDS and PEPFAR.

What does the faith community bring to the response to HIV?

It’s the fact that we are there. We are in every corner, even where governments can’t reach with their 4x4’s we have a little church there, we have a mosque there, we see God’s people every Sunday at the very minimum. We marry we bury we baptize, and we do this work not because we want to be paid or we want constituencies, it is our vocation and our calling.

“We marry we bury we baptize….We are in every corner, even where governments can’t reach with their 4x4’s”

Whether you are a Christian, Muslim, a Jew or a non-believer, you are a child of God and you need healing. We don’t exist for ourselves, we exist in order to show the love and care of God in the communities.

“We smile at you so please smile at us, because together we have made this possible.”

We must ensure that no more children are born with HIV, we must work together to ensure that every child living with HIV has immediate access to treatment and we must ensure that those children will be alive and thrive. That way in 2025 they will come here saying “you have allowed us to live, and we smile at you so please smile at us, because together we have made this possible.”

Related: Interview with Professor Mohamed Karama, working with Islamic Relief on the HIV programme, Kenya

Related: Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV

Related: Communities of Faith Breakfast: Building Partnerships for a One-Community Response to HIV. Prioritizing Children in the HIV Response

Cities leading the way to achieving key targets in the HIV response

27 September 2023

Gathered in Amsterdam for the annual Fast-Track Cities conference between 25 ─ 27 September 2023, cities shared their various initiatives toward achieving key HIV targets.

In Nairobi, Kenya a situation analysis conducted at a granular level helped the county to better understand the gaps in the HIV response and to identify priority actions. The data showed that there was a lack of health service points, especially for key populations and young people living in informal settlements. In addition, stigma and discrimination also keeps people away. Zipporah Achieng, a young person living with HIV navigating the dusty streets of Kibera, one of several informal settlements, can attest to this. “Before, life was not easy, the healthcare workers were not well trained, and when they saw youth coming to the hospital, they would start judging them, discriminating them.”

The Nairobi City County, with the support of the USAID-funded joint UNAIDS-IAPAC Fast-Track Cities project, developed activities to create awareness, address vulnerabilities, and reduce discrimination with a focus on young people. Informal settlements house up to 60% of Nairobi’s population despite covering less than 10% of the city. Over a period of five years, community members worked hand in hand with healthcare providers in the establishment of 30 friendly health centres for young people and men who have sex with men and sex workers. As a result, stigma against people living with HIV has been reduced while the uptake of HIV and other health services increased significantly during this time.  

Ms Achieng is now a peer educator. She goes out in the community sharing her experience and getting people to come to the clinic. “Now I know what is right and what is wrong, I’m happy because life has changed, life is sweet, there is medicine, there is support, and I’m just happy,” said Ms Achieng.

Nairobi's commitment to fast-tracking HIV services for young people and key populations not only contributed to the city's own public health goals but also set an inspiring example for other urban centres in the country.

Discussions about sex and HIV in Indonesia remain taboo and information limited. As a result, HIV-related knowledge is low, especially among young people. In 2018, UNAIDS created an online chatbot named Tanya Marlo and integrated it in the popular messaging application LINE. “Before Marlo, finding reliable information about HIV and sexual health was really hard. It was difficult to get the right information”, says Arisdo Gonzalez, a user of the online application.

Support provided by the Fast-Track Cities project allowed this pilot to grow into a key tool to reach young people and increase HIV prevention and testing.

Last year alone, 200 000 engagements were recorded on social media and on average 100 users are directed to counselling every month. “Tanya Marlo has been an absolute hit among young people in Indonesia,” said Tina Boonto, UNAIDS Country Director in Indonesia. “Young people feel that they can chat with Marlo anytime, anywhere, and in secret, nobody has to know about it.” To ensure its sustainability and further development, a community group, YKS, has taken over the management of the application.

Kyiv joined the Fast-Track Cities initiative in 2016 and had made remarkable progress towards key HIV targets until Russia declared war in Ukraine. Many feared that treatment, HIV services and outreach would disintegrate.  Thanks to emergency funds and the support of the Fast-Track Cities project, a number of interventions were put in place to help those in need, in particular members of key and vulnerable populations like people who inject drugs and LGBTIQ+ members. “Since the invasion, we have managed to maintain our test numbers, didn’t lose a single patient, and ensured continued access to antiretroviral therapy” said Dr. Vitali Kazeka, Director of the Kyiv AIDS center.

One of Kyiv's notable achievements is the establishment of shelters designed to cater to the unique needs of key populations affected by HIV. These shelters provide a safe and supportive environment while also ensuring access to essential healthcare services, counseling, harm reduction programmes, and education about HIV prevention. “The Fast-Track Cities project makes people living with HIV, and those from key population groups, feel like equal citizens of the city… They see that there are special initiatives that care about them and their future,” said Nataliia Salabai, UNAIDS Fast-Track Cities focal person in Kyiv.

Launched in December 2014, the Fast-Track Cities partnership has grown to more than 500 cities and municipalities that have committed to accelerate their local HIV, tuberculosis (TB), and viral hepatitis responses to achieve Sustainable Development Goal (SDG) 3.3 by 2030.

More than half of the world’s population currently live in cities and cities account for a large and growing proportion of people living with HIV, tuberculosis (TB) and other diseases. The risk of contracting, and vulnerability to, HIV and TB infection is often higher in urban areas compared to rural areas, because of urban dynamics such as social networking, migration, unemployment and social and economic inequalities.

In five years, 30 friendly health centres opened in informal settlements in Nairobi

Jakarta, Indonesia: Meet Chatbot Marlo

Despite war, Kyiv HIV outreach remains solid

Fast-Track Cities' initiatives to end AIDS

The power of visibility — My story as the first person who came out as a person living with HIV in Fiji

18 April 2023

Jokapeci Cati is the Program Manager and founder of the Fiji Network for Positive People (FNP+). This is her self-told story of how she became the first person living openly with HIV in Fiji.

I grew up in the harbour town of Suva. I was brought up in the Seventh Day Adventist Church. During youth camps we had two sessions on HIV. To me it was just a session. I had this perception that I am not promiscuous so I can’t become HIV positive.

I got married at 21 and got infected in my marriage. I was diagnosed in 2000 but I suspect I was living with HIV since 1999. My husband was sickly and became bed ridden. I did not blame him. I felt like he got infected before we were married and did not know he was living with HIV. In 2003 he died due to AIDS-related causes. He was 31.

We did not have treatment in Fiji at that time. People living with HIV were just monitored. When I was diagnosed they told me “you have to look after yourself because you can die”. In the initial stages there was depression, denial and stress. But as soon as I got diagnosed one of my dreams was to meet another person living with HIV.

With my family there was no change in the way they treated me. It was support from the word go. I did not see any element of discrimination from my parents and siblings.

Going public

Coming out was not an overnight decision for me. It took me six months to juggle the pros and cons. Somehow my mind was not dwelling on the negative. Because there was no support system in place at the time, I felt the need to speak out.

So I started with the church. I went to the pastor and told him of my diagnosis. Then I had to disclose to my church community. The hardest bit was opening up to your very own people. Once I gained the support of the church I spoke to the Council of Chiefs, Fiji’s traditional leaders forum. Because those platforms gave me a positive reception I then went to the media because I felt I was ready to speak to the nation.

Organising and advocating

In 2003 I was privileged to meet the right people at the Ministry of Health and we coordinated the first meeting of FNP+. By 2004 I got the organisation registered, up and running.

From the start I was advocating for treatment because I could see my first husband dying. The Ministry of Health’s HIV coordinator at the time, Maire Bopp Dupont, connected us to the Asia Pacific Network of People Living with HIV. That is how I got to know that other countries in the region were offering treatment. We went to the Council of Chiefs and Parliamentarians to advocate. The Health Ministry at the time was saying “we are not ready… we need to put the systems and structures in place”. I think because we came out publicly it put some pressure on them. The very next year, in June, treatment was available.

It was exciting. For the first time we felt the advocacy was worth the sacrifice. Our work involved talking to nurses, doctors and civil society organisations that were part of the care team. I started antiretroviral therapy five years ago when we adopted the “treat all” policy. It is so exciting that we are able to take treatment with the assurance that we would live! And it is for free!

Living life fully

I did not let HIV decide my future. Because of being part of the FNP+ management team I found the need to venture into education. I got a degree in psychology and social work from the University of South Pacific.

When I lost my first husband I was in this dilemma about whether to have children. I met my current husband in the HIV organisation. When we decided to have children, it was a public affair in Fiji. I was an HIV positive, pregnant woman. It was a learning curve for me and the entire nation.

The UNAIDS Goodwill Ambassador for the Pacific, Ratu Epeli Nailatikau, was Fiji’s President at the time. He made it his business to come to the hospital during my delivery and my first son’s HIV test. He wanted a copy of my son’s HIV negative test result. This became his advocacy document. He has been spreading the message since then that there is no need to discriminate against women living with HIV who want to have children. It’s time we support them through prevention of mother-to-child transmission (PMTCT) treatment. I am now the mother of three HIV negative children.

The way forward

We are working to get FNP+ funding from the Global Fund to continue our national activities and regional support. I’m glad the focus is now on community-led monitoring and services and that it’s coming from the donor’s mouth.

Other Pacific countries don’t have networks of people living with HIV. Fiji is the only one. People throughout the region are living in isolation. Our second piriority is to organise at the regional level.

Our third challenge is that although everyone who is living with HIV is encouraged to take treatment, we have stockouts. At one point we weren’t getting Dolutegravir so people had to change to a combination of drugs until it became available. Labs are also a challenge, especially the turnaround time for viral load tests. If FNP+ does not continue to apply pressure to address these issues people would suffer silently.

HIV in a small island developing state

For sure people living with HIV from key population communities have had a more difficult time. They were ostracised, they were discriminated against. I did not face that. There was a time, around 2004 and 2005, when people who died due to AIDS had to be burned at night before the sun rose!  The stigma and discrimination are not as bad as that now, but they still exist.

I think in the Pacific it is really hard to come out with your HIV status because of our small size. We have these connected communities and if someone comes out it is easy to trace who else could be HIV positive. We have this communal upbringing so people don’t want any negative repercussions for their families.

When other people living with HIV meet me, they are happy. They want to come out and speak, but they don’t know how. Now there is funding for this community engagement in more Pacific countries. We just need to give them support and a bit of time. 

Fiji recently received technical support for the seventh cycle of Global Fund applications and the Indo Pacific HIV Prevention Program supported by the Australian Department of Foreign Affairs and Trade (DFAT). UNAIDS Pacific supports peer network meetings to encourage sharing among PLHIV. UNAIDS also recently collaborated with Rainbow Pride Fiji Foundation, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) and the National Association of People with HIV Australia (NAPWHA) to develop a PLHIV booklet in the local languages. This booklet provides information on living with HIV and helps empower PLHIV to take control of their health and wellbeing. This project is supported by the New Zealand Ministry of Foreign Affairs and Trade and DFAT.

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