Pathways to end HIV: Let communities lead

Globally, HIV still remains a major public health problem. According to a recent UNAIDS report, 29.8m of the 39m people living with HIV globally are receiving life-saving treatment. Access to antiretroviral therapy has expanded massively in sub-Saharan Africa and Asia and the Pacific, which together are home to about 82 per cent of all people living with HIV. 

The evidence suggests that social inequalities and diverse epidemic trends affect progress in the HIV response in Asia and the Pacific. The HIV epidemic in the region disproportionately affects people from key populations, especially young people (aged 15–24 years), and their sexual partners. Young people accounted for around a quarter of new HIV infections in the region in 2022. There are ongoing efforts to expand access to combination HIV prevention services, including harm reduction services, self-testing and provision of pre-exposure prophylaxis (PrEP). However, the coverage of HIV prevention is still low across key populations. 

In the fight against HIV, the communities living with, at risk of, or affected by HIV are leading the way. They are at the frontline of progress in the HIV response. This year’s World AIDS Day is more than a celebration of achievements in the global response. This is an urgent call to action to enable and support communities in their leadership roles. This is largely because communities connect people with people-centered public health services, build trust, innovate, monitor implementation of local policies and services, and hold service providers accountable. However, there are still limited efforts to unleash the full potential of community leadership to enable the end of AIDS. 

However, some critical challenges such as policy and regulatory hurdles, funding strategies, limited technical capacity, and poor recognition of communities’ role can constrain the progress of HIV prevention and treatment services at large. If these obstacles and challenges are removed, it is more likely that the progress toward global HIV response can be significantly advanced. 

Therefore, the communities’ leadership roles need to be made core in national HIV response. More importantly, an enabling policy and regulatory environment is needed to facilitate communities’ role in sustained provision of comprehensive HIV services, ensures civil society space, and protect the human rights of all.  

Undoubtedly, community-led organizations have long been the backbone of the HIV response. They raise the genuine voices and concerns of the people living with HIV and affected communities, alarm the human rights violations and advocate the critical needs of timely prevention, treatment and care services to the most underserved and marginalized populations. Their roles should not be undermined as they can add even greater impetus to the national HIV response. 

Nepal’s HIV Policy and Strategic Plan (2021-2026) importantly highlights the significance of community-led HIV response and aims to promote meaningful representation, participation and engagement of the people living with HIV and affected communities in planning, implementation, monitoring and evaluation of the national response. The strategy also provides a useful framework for engaging community-led organizations in effectively reaching out to the unreached populations, who are at high risk of HIV and other infectious diseases.

In our context, the national HIV response still faces critical challenges of limited human resources, inequitable coverage of services, inadequate monitoring and evaluation system and the sustainability of HIV services at local level. During the disasters or health emergencies such as Covid-19 pandemic, it is very challenging to ensure the continuity of HIV prevention, treatment and care services in the communities.  

Therefore, the capacity enhancement of the community-led organizations and their networks is critical in ensuring sustained prevention, treatment and care to the affected communities, which are poor and most marginalized. In the federal context, the role of local governments is important to support community-led organizations for their engagement and leadership in evidence-informed policy making and ensure domestic resource mobilization for community-led response. Additionally, local governments can invest in robust, resilient, equitable and publicly-funded systems for health and social protection for people living with HIV and their affected families, and promote people-centered and context-specific integrated services for HIV.

Like many other countries, Nepal has implemented community-led monitoring initiatives as an integral part of national HIV response. This is simply an accountability mechanism for HIV responses led and implemented by local community-led organizations of people living with HIV, networks of key populations, other affected groups or communities. Therefore, through the CLM process, community-led organizations increase their technical capacity to gather, analyze, use and own data. This evidence can significantly help ensure evidence-informed action to improve HIV services in the communities. Therefore, strengthening community-led monitoring mechanisms at all levels should be a priority agenda for accelerating national HIV response. 

There needs a strong political commitment and accountability to put people first and invest in evidence-based HIV prevention and treatment services. In many countries, national HIV policies have prioritized inclusive approaches that respect people’s human rights. They have made significant attempts in engaging people living with HIV and affected communities across the HIV response. More concerted efforts are needed to address the societal and structural factors to protect and promote their health and well-being. These mainly include gender and other socio-cultural inequalities, stigma and discrimination, and human rights violations. Therefore, promoting gender equality and confronting gender-based violence can make a lasting impact on HIV response. 

The author is a health policy analyst and former consultant at UNAIDS