Faith based organizations FBO

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. 

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.

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.”

Faith communities and faith-based organizations have a long history of caring for children and adolescents living with and affected by HIV. However, these efforts have not been well documented and hence their contributions have not been well understood nor resourced. Until now.

UNAIDS and PEPFAR have co-published the Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV which goes a long way to addressing this dearth of information. The Compendium documents 41 promising practices that provide evidence of the core roles that faith communities have played in identifying undiagnosed children living with HIV, improving continuity of treatment, supporting adolescents to access psychosocial support, care and treatment, and enabling peer support groups to empower children and adolescents living with HIV. It also documents how faith leaders have driven advocacy to tackle stigma and discrimination and pushed governments for targets to be achieved. Some specific promising practices include:

• In Zambia, by expanding integrated health service delivery through Health Posts within places of worship, more children were identified when tested for HIV in faith community sites compared with those tested in non-faith community sites, averaging 15% and 7%, respectively, for the semi-annual period in the 2021 Financial Year.
• In Nigeria, a congregation-based approach to HIV testing in pregnant women, using Baby Showers, found the intervention improved HIV testing among pregnant women (with 93% linkage) and their male partners, who were 12 times more likely to know their status, compared with partners of women giving birth who had not participated in the intervention.
• Religious leaders and faith-based organizations in several countries have enrolled as Faith Paediatric Champions and have strengthened community engagement through teams sometimes - Christian and Muslim - including religious leaders, youth leaders, as well as men’s and women’s group leaders. Faith Paediatric Champions have advocated to governments and community members for all children and adolescents to be supported to access HIV care and treatment.

The Compendium showcases the transformative impact of faith-based approaches, highlighting innovative strategies, programmes, and interventions that have saved lives and nurtured the well-being of young individuals. By combining the power of faith with evidence-based interventions, these organizations have created a synergy that reaches far beyond medical treatment. They have fostered a sense of belonging, love, and support, creating safe spaces where children and adolescents affected by HIV can find solace, guidance, and empowerment.

The global response to end AIDS in children continues to be inadequate. Every hour eleven children die of AIDS. 1.7 million children are living with HIV and while three quarters (76%) of adults living with HIV are on treatment, only half (52%) of children are. Children living with HIV are even more vulnerable than adults: while children constitute 4% of people living with HIV, they represent 15% of AIDS-related deaths. In their Foreword to the Compendium Winnie Byanyima, the Executive of UNAIDS and John Nkengasong, US Global AIDS Coordinator and Special Representative for Global Health Diplomacy say: “It is a disgrace that the world is not on track to end AIDS in children” and they describe the inequality between adults and children as “heartbreaking.”

However, they also issue a rallying call: “We can end AIDS in children. We must end AIDS in children. Together, we will end AIDS in children. This informative, inspiring, Compendium will be used to save and change children’s lives.”

The 11^th Assembly of the World Council of Churches (WCC) is meeting in Karlsruhe, Germany, from August 31 to September 8, 2022. The WCC brings together delegates and participants from 345 denominations from around the world, representing more than 500 million Christians.

Faith leaders and activists living with HIV expressed huge concerns for the future of the HIV response. Young people continue to be exposed to HIV; women are experiencing violence in all forms. Governments are moving away from HIV and many ecumenical organizations too.

What we need is a continued engagement with people with HIV and those at risk.

My country depends on international aid, what if we stop having that support?”, said one faith leader.

Another said, “Adolescents and children are not staying on medication, they are getting sick and some of them are dying”. Time is running out for the HIV response, we have to help people to live and stay safe and healthy.

People with HIV in the WCC Assembly are speakers and are leading plenaries, workshops and ecumenical conversations. They are bringing attention to the role of the church and the ecumenical movement to continue responding to the HIV epidemic; not only in relation to HIV stigma, but also in advocacy for a sustainable response to HIV, gender justice, human sexuality and the work on HIV related intersectionality and inequalities. This is a matter of justice, love and reconciliation.

The third thematic plenary Affirming the wholeness of life, included input from Canon Gideon Byamugisha from Uganda. He spoke about the realities of young people exposed to HIV and the consequences of unequal access to COVID-19 vaccines, because of unfair patent systems. He shared his experience of receiving support from Bishop Samuel Ssekkadde in 1998 who was leading the Anglican Church in Uganda and how that support saved his life when he was about to die without access to HIV medications. For many people with HIV, that continues to be a reality today.

Canon Gideon Byamugisha is one of the founders of INERELA+ (International Network of Religious Leaders Openly Living or Affected by HIV). He asked the Assembly participants to adopt the targets of the Global AIDS Strategy: the 95-95-95 strategy, which means that 95% of people living with HIV should be tested, 95% of those, should be on treatment and 95% of those, should have undetectable viral load, meaning that they can no longer transmit HIV and can stay healthy.

On September 2, five faith leaders openly living with HIV shared local experiences of churches responding to HIV stigma. In Argentina, some churches are taking care of transgender, indigenous women living with HIV; in Ghana, other churches are promoting the message of undetectable HIV = untransmitable HIV. In the United States, faith based organizations are providing affordable housing for people living with HIV who are transitioning out from rehabilitation or from the penitentiary system. Churches in Kenya are caring for children orphaned by HIV and they provide care and accompaniment for women who experienced sexual violence.

The workshop presented the results of a six-month case study recently completed by the WCC and Emory University. “We emphasize stigma because we know that it is a major driver of the HIV epidemic,” said Dr. David Barstow, one of the workshop organizers.  “And we emphasize the role of local churches because of the influence they have on their members and on the rest of society.  Local churches, indeed local communities of all faith traditions, are key to eliminating stigma and are therefore key to ending the epidemic.”

Some of the preliminary findings of the study refer to the role of people living with HIV who have a deeper understanding of stigma because of their lived experience.  According to Professor John Blevins, who led the case study team, “…in the case study, when people living with HIV talk about stigma, they describe complexities that are often not apparent to people who do not live with HIV”

One faith leader said that “…despite my congregation’s commitment to stigma reduction, many people with HIV still feel uncomfortable disclosing our status.” The stigma was perceived as something that comes from those “on top” in the church. Another faith leader said, “Every time one of them dies, I die a little bit myself.”

The church and faith communities have much work to do in relation to HIV stigma. “We should be part of the healing hands of God to the world,” said Gracia Violeta Ross, a woman openly living with HIV, who is now leading the Ecumenical HIV & AIDS Initiatives and Advocacy in WCC. Canon Gideon Byamugisha said “…zero percent of our members should feel stigmatized. Surely, we want that going to church should be good for your health!”

A message of support for the ESA Commitment from Professor Mbulelo Dyasi, Vice Chair, Board of Directors, INERELA+, delivered at ICASA 2021

As religious leaders, we have a trusting relationship between us and our congregations. As beholders of God’s truth and a belief system based on faith, our relationships with our congregants and communities are based on a strong basis of belief and as custodians of good values. This provides us with a platform to advocate and motivate for the betterment of our people from a faith perspective while we can also work together with our congregations in finding solutions to the challenges they face in their environments.

Today, we are in a situation where our nation and our continent are at the right place to advance in areas of economics, infrastructure and human resources. This is because we have young populations who are fast growing up to be productive citizens. These young people need direction and guidance to be able to make good decision, have positive family lives and be good citizens. And as religious leaders we play an important role in providing this guidance. Parents in our congregations know their role in providing this guidance. And we live in a modern society with modern education and health systems, so we need teachers, social workers and health workers to also provide this guidance. Each has a role to play in improving society.

We trust a government that acts in our best interests. Since 2000, the South African Government has been providing our children with the education and guidance they need. This education, called Life Orientation/Life Skills, where sexuality education is embedded, complements the values and direction that we provide as religious leaders through our sermons and that parents provide at home. We have to make sure that our children can negotiate issues of sexuality and relationships from a position of knowledge and power, rather than a position of ignorance and fear. From a position of truth and science, rather than a position of misinformation and helplessness.

There are those who try to spread fear and disinformation, creating panic and claiming to be the guardians of family values. The truth is that many of us who are believers, who are parents, who are teachers, are united on human dignity. And sexuality education promotes human dignity. Because sexuality education ensures that our children learn to treat each other with respect and dignity from an early age. It ensures that our children learn to think about what is right and safe for them, and how to avoid coercion, sexually transmitted infections, including HIV, and early and unintended pregnancies. It helps to keep our children safe from abuse by teaching them about their bodies.

Young Africans must have the facts and confidence to stay safe and healthy, live a dignified life and contribute positively to their community and countries. They must trust us, their elders, to tell them the truth. Therefore, as religious leaders we pledge our support today to the ESA Commitment, which seeks to enhance efforts in ensuring the health and well-being of our children and young people. We commit to work with our governments to accelerate action towards realizing the agreed upon targets so that in 2030 we can all see the vision of an AIDS-free generation.

As religious leaders we hereby endorse the ESA Commitment towards 2030 aiming to ensure that we close the gap of comprehensive knowledge of our young people to protect themselves from new HIV infections, early and unintended pregnancies and gender-based violence and early child marriages. We promise to engage with our constituencies to create an enabling environment for adolescents and young people to access sexual and reproductive health services and use our platforms to empower parents to be able to talk with their children on issues affecting their health and well-being. With the challenge of COVID-19, we also commit ourselves to work together with our communities in finding innovative ways to ensure access to information and essential services during times of crisis. Working together we will surely win the fight against HIV and other pandemics.

Thank you!

Professor Mbulelo Dyasi, Vice Chair, Board of Directors, INERELA+

Around 300 faith leaders and representatives of faith-based organizations met on 7 June in an online event, Faith2EndAIDS, Faith2EndInequality, on the sidelines of the United Nations High-Level Meeting on Ending AIDS.

Sharing lessons learned by faith-based organizations and faith communities in addressing stigma and discrimination, promoting human rights and increasing access to HIV services, the participants also explored the main areas of action in the political declaration on AIDS and the particular role of faith responses in implementing the commitments.

Practical examples were shared of faith-motivated programmes that increase access for people affected by inequalities, such as programmes for migrants and children. The participants emphasized the critical role that faith responses can play in mitigating stigma.

A key focus going forward is the 12 Million Campaign, where faith leaders, individuals and communities of faith commit to key actions that could promote access to HIV services by the 12 million people who are living with HIV who still do not have quality and consistent HIV treatment, care and support.

The active discussions in the chat box reflected the enthusiasm and commitment of faith communities and people of faith to play a meaningful role in ending AIDS and ending the inequalities that drive the pandemic.

Faith-based organizations play a key role in all areas of the HIV response and provide a significant part of HIV-related health care through their networks of hospitals, clinics and community systems, particularly in high-burden countries. For this reason, UNAIDS and the United States President’s Emergency Plan for AIDS Relief (PEPFAR) launched a joint initiative to capitalize on the global and national leadership of faith-based organizations and to harness the power that a network of faith-based organizations could offer in some countries, including Côte d’Ivoire.

The UNAIDS–PEPFAR faith-based initiative was launched in Côte d’Ivoire on 14 October 2020 under the leadership of the Ministry of Health and Public Hygiene through the national AIDS control programme.

Following the national launch, several activities were initiated in the country as part of the initiative. These include the ongoing development of the Faith-Based Action Plan, under the leadership of the national AIDS control programme, which aims to ensure effective coordination and close monitoring of programmes, as well as synergy and complementarity in their implementation.

Caritas Côte d’Ivoire, which is a member of Caritas Internationalis, the organization in charge of implementing the social doctrine of the Catholic Church at the global and country levels, launched the GRAIL (Galvanizing Religious Actors for Better Identification and Linkage to Paediatric HIV) project on 9 February. This project will strengthen the involvement of faith-based organizations in accelerating the early diagnosis and treatment of children living with HIV in Côte d’Ivoire.

During the launch of the GRAIL project, a representative of the Ministry of Health and Public Hygiene welcomed the commitment of the Catholic Church in the national response to HIV and recalled the place of paediatric AIDS in national priorities.

“The COVID-19 pandemic that we are facing is a very worrying health and social emergency that requires a strong response. Many of the people affected are children living with HIV,” said Bruno Yedoh Essoh, the President of Caritas Côte d’Ivoire.

“Gaps in the diagnosis and care of children living with HIV are notable and an effective national partnership with faith-based organizations in Côte d’Ivoire can help fill these gaps,” said Jean-François Somé, a UNAIDS PEPFAR/Global Fund to Fight AIDS, Tuberculosis and Malaria Implementation Adviser who represented UNAIDS at the launch.

The GRAIL project will focus on training religious leaders and faith-based health service providers on paediatric HIV and on actions to reduce stigma and discrimination against people living with HIV, including children. The first session of a training workshop for religious leaders and faith-based health service providers on paediatric AIDS started immediately after the launch of the GRAIL project. Other training sessions are planned around the country.