Views from the Frontline – Experiences of supporting key populations affected by HIV

Dr. Patrick Oyaro specializes in Epidemiology. He is also Chief of Party for USAID Stawisha Pwani. The Coalition for Children Affected by AIDS recently spoke with Dr Oyaro to understand his experiences as a Frontline Health worker supporting people affected by HIV, including children and adolescents.

As part of his commitment, Dr Patrick Oyaro has been a long-time serving director on the Board of Directors, and a strong advocate within the Paediatric-Adolescent Treatment Africa (PATA) network of frontline health providers. Please see PATA’s call to action highlighting the need for greater investments to support a health workforce that is well-trained, where they have access to the tools, resources and confidence to do their work well. Importantly, that health providers delivering services on the frontline are provided safe working conditions and fair remuneration with access to support and development opportunities.

Dr Oyaro’s work spans over 18 years in HIV clinical services provision, technical support and program management and he currently supports HIV, TB and COVID-19 prevention and management. The cohort on treatment is around 65,000 with 3,600 below 15 years of age. Most of the funding received is facility based with little spent on community aspects. The Government is expected to support the community component through community strategy, but this varies per county, with some able to provide stipends of around $20 per month which is very little.

The HIV services are still heavily donor funded with varying levels of county government ownership and the CALHIV are eligible to be supported by the OVC projects collaboratively as some children and adolescents are orphaned and all are considered vulnerable. The OVC projects need to ensure that they (their households) are Healthy, Safe, Schooled and Stable.

On matters of prevention, Dr Oyaro believes that for his team and all those working to eliminate pediatric AIDS by 2030 as per the Global Alliance Goals, that “We must ensure that all the four prongs of PMTCT work. We need to ensure PrEP, FP services uptake and community support is there to ensure coverage and that we can prevent violence against children (VAC) to stop any transmissions and optimize repeat HIV testing amongst others.”

For Dr Oyaro, the past 2 years have been severely impacted due to COVID-19 and other issues such as an erratic supply of commodities that have prevented early infant diagnosis and thus affected the eMTCT/PMTCT agenda negatively.

Doctors on the frontline like Dr Oyaro have seen that the uptake of pediatric DTG has been impressive and we need to ensure that we do not lose it to resistance. Resistance testing is available but the process is long. He says, “There is a need for more involvement of caregivers, ensuring caregiver education and that there is mental health support for the health workers and caregivers.” He also considers facilitation and support for the transition of adolescents into adult clinics as important, along with linking the recipients of HIV care to psycho-social support and nutrition as this all affects viral suppression outcomes. Dr Oyaro continues, “We need to involve the department of education and also ensure children of key populations (KP).”

Dr Oyaro’s comments come at a crucial time as we work towards ending AIDS in children and adolescents.

The Coalition for Children Affected by AIDS (CCABA) has launched a new report that identifies how much funding is going to children and adolescents, where, on what and where the gaps are.  This new analysis provides a vital piece of the puzzle to achieve our goals and provides some clear investment opportunities. In particular, testing and treatment, and support to adolescent girls and young women, orphans and vulnerable children, and children and adolescents from populations that are at increased risk of HIV infection.

To learn more about these important research findings on closing the funding gap for children and adolescents, download the report here.

Harnessing the Power of Faith Communities to End AIDS in Children and Adolescents

By Dr Stuart Kean

The need is great. Every hour eleven children die of AIDS-related diseases. 1.7 million children are living with HIV. Access to life-saving treatment for children living with HIV is behind that for adults. While three-quarters (76%) of adults living with HIV are on treatment, only half (52%) of children are. The gap in access to treatment between children and adults has been widening.

But new commitments have been made, and opportunities for action have been created. On 1 February, representatives of 12 African nations signed the Dar es Salaam Declaration for Action to End AIDS in Children by 2030. They declared: “We have the tools, the guidance, the policies, and the knowledge we need. Now we must make good on this commitment and move to action[1].” The 12 nations called on all stakeholders – including civil society organizations, faith-based organizations, religious and community leaders, local implementers, and international partners – to work with them and embrace this opportunity to save and change lives.

This rallying call, including faith communities, faith-based organisations and religious leaders, is both timely and not surprising because it builds on a long history of incredible work already accomplished by faith communities for children living with and affected by HIV. However, these efforts and their related interventions have often not been well documented and hence their contributions are not well understood nor well resourced.

The timely publication of the Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV goes a long way to addressing this dearth of information. It 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, and supporting adherence to care and treatment. It also documents lessons of how faith leaders have driven advocacy to tackle stigma and discrimination and push for targets to be achieved. These areas align closely with Pillars 1 and 4 of the Global Alliance to End AIDS in Children by 2030[2].

The Compendium highlights the four distinct assets faith communities, faith-based organisations and religious leaders have: (1) faith-inspired health service providers; (2) community outreach through faith community groups; (3) demand-creation in places of worship; and (4) advocacy by religious leaders and FBOs speaking out on obstacles preventing children from accessing treatment and holding government accountable for their commitments. The following promising practices from the Compendium illustrate some of the results from across the four assets:

• FAITH-INSPIRED HEALTH SERVICE PROVIDERS: Mildmay’s Integrated Family-Centred Approach in Ugandaresulted in a 50-fold increase of families registered in HIV care at Mildmay and supported facilities; from 2003 to 2010, Mildmay experienced a 43 fold increase in the number of children actively enrolled in care and a 23-fold increase of children on ART.

• COMMUNITY OUTREACH BY FAITH COMMUNITY GROUPS: Circle of Hope’s Faith-engaged Community Outreach Posts results in Zambia have been impressive: comparing the 17 months before theproject with the 37 months following the introduction of Community Posts, the median number of new HIV cases identified per month increased by 1889% for men and by 1990% for children. Equally impressive retention rates were achieved: of the 11 457 clients identified as new HIV cases at CPs, more than 96% were linked and more than 92% were retained on ART.

• USING PLACES OF WORSHIP TO CREATE DEMAND FOR HIV SERVICES: Congregation-based approach to HIV testing in pregnant women in Nigeria (Baby Shower) found that 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 congregation-based events.

• ADVOCACY: Faith Paediatric Champions in Kenya comprised a team of both Christian and Muslim religious leaders, youth leaders, and Community Health Workers. Out of a total of 2,998 referrals between August 2016 and May 2017, 47% were made by religious leaders, 23% by CHWs and 30% by youth leaders. Over the same period, the faith paediatric champions provided adherence support, psychosocial support, and nutritional support to 4517 children and young people between the ages of 0 and 24 years.

These are just a few of the many examples that can act as inspiration and motivation to faith communities wanting to make a difference but not always knowing where and how to have an impact.

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 mere 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.

Faith communities, faith-based organisations, and religious leaders have demonstrated they are playing an active role in ending AIDS in children, but this potential must be recognised and supported more widely if they are to play a full role in achieving the goal of ending AIDS in children by 2030. The Compendium will help Ministry of Health officials and other partners to have a better understanding of the contribution already made by faith communities to end AIDS in children. By working more closely together, they would be able to make a step change towards achieving the goal of ending AIDS in children by 2030.

June 2023

The Compendium, compiled by Dr Stuart Kean, is a product of the UNAIDS – PEPFAR Faith Initiative, supported by USAID. The Compendium showcases the work of 41 FBOs in paediatric and adolescents HIV.

Dr. Stuart Kean is an independent consultant who has worked for over 20 years on policy and advocacy issues related improving access to prevention, testing, treatment care and support for children and adolescents living with and affected by HIV. He was recently working on an assignment for the UNAIDS-PEPFAR Faith Initiative documenting promising practices undertaken by faith communities in Africa that support children living with HIV. This study has been published as the Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV and Stuart is currently working with the Faith Initiative to disseminate and promote the findings in the Compendium. Stuart is a member of the Interfaith Health Platform, a member of the Advocacy Working Group of the Regional Inter Agency Task Team on Children and AIDS in Eastern and Southern Africa, a member of the Coalition for Children Affected by AIDS and the Child Survival Working Group.

[1] https://www.unaids.org/en/topic/alliance-children/dar-es-salaam-declaration [2] https://www.childrenandaids.org/global-alliance

Photos: WCC/EAA - Albin Hillert

Safety and activity of immune checkpoint inhibitors in people living with HIV and cancer

People living with HIV remain at higher risk than people living without HIV for developing various cancers that can be treated with immune checkpoint inhibitors (ICIs). Since people living with HIV may have dysfunctional immune systems, there have been safety and efficacy concerns for including them in clinical trials of ICIs. Consequently, these studies have either entirely excluded people living with HIV or have limited their participation to specific inclusion criteria.

To evaluate the use of ICIs among people living with HIV, physicians at Dana-Farber Cancer Institute built the international and multi-institutional consortium Cancer Therapy using checkpoint inhibitors in PWH-International (CATCH-IT). They found that ICIs were safe and had differential activity across tumor types.

Additionally, among people living with HIV who have non-small cell lung cancer (NSCLC), clinical outcomes were not influenced by CD4+ T-cell counts or anti-retroviral therapies and the safety and activity of ICIs were comparable to a matched cohort of people living with and without HIV who had metastatic NSCLC. The study is published in the Journal of Clinical Oncology.

This study should reassure physicians that the use of ICIs is safe and effective in people living with HIV, especially those on anti-retroviral therapy, and supports the findings of published clinical trials and retrospective studies of people living with HIV receiving ICIs.

This analysis represents the largest comprehensive analysis to date to include people living with HIV receiving ICIs and the first to formally compare their outcomes and safety profiles to people living without HIV in a subset of patients with metastatic NSCLC.

Overall, the authors believe that this effort represents a stepping-stone that will motivate further studies involving patients living with HIV and cancer and better inform treatment decisions for this unique population.

Journal information: Journal of Clinical Oncology