World AIDS Day 2022 – Putting people first and why it matters
In a world plagued by inequality, putting people first across all aspects of the HIV response is a moral imperative and the only viable route to progress. Whether in the design of clinical trials, the formulation of policies or any other aspect of our efforts, people living with and affected by HIV must be not just beneficiaries but the actors driving our efforts.
Sharon Lewin, IAS President
Inequalities in action: an example
"Trans and gender-diverse people experience significant levels of stigma, discrimination and violence. These may be structural (manifested in laws, policies and institutionalized practices) or societal (due to rejection, mistreatment and social exclusion and lack of gender recognition by others). Both hinder the availability, access and uptake of HIV prevention, testing, treatment, care and support services and other sexual and reproductive health services, including gender-affirming care."
The risk of acquiring HIV is 13 times higher for trans people than other adults aged 15-49 years. The prevalence of HIV is 19 times higher for trans women than other women aged 15-49 years.
And yet, pervasive stigma and discrimination cause trans and gender-diverse people to avoid seeking healthcare. Stigma and discrimination are not only deterrents to care; they have a profound negative impact on mental health, which increases vulnerability to HIV. Access to treatment and staying in care are critical for ensuring positive health outcomes.
Stigma and discrimination also render trans and gender-diverse people largely unseen. This means that no data is gathered to inform evidence-based services and healthcare interventions are not adequately tailored to meet the needs of the people they are meant to serve.
We have a moral obligation to ensure that HIV services are accessible, suitable and non-stigmatizing for trans and gender-diverse people.
Rather than perceiving communities as beneficiaries only, we would like to see them included in the very design of any strategy and its implementation. Communities strengthen the HIV response, offering expertise and leadership in programming. Community organizations are able to respond to diverse and dynamic contexts in ways that many healthcare systems and networks cannot. Community responses extend the reach and uptake of services by connecting with, identifying and responding to the needs of, and mobilizing the most vulnerable populations.
Despite their vital contribution, many community organizations face challenges in improving quality outcomes in treatment, care and support services because they are not adequately funded to sustain the resources needed.
Putting people first means that community organizations are sufficiently funded. They are best placed to improve equitable access to quality services and maximize the impact of their programmes.
This World AIDS Day, take the time to examine how effectively your organization provides ample financial support to community organizations.
We must put people first nationally and locally, as well as culturally.
National aid strategies with limited protection of rights impede progress in the HIV response. Countries with legal frameworks that criminalize same-sex sexual acts, sex work or drug use across the board show worse health outcomes for key populations.
Policies that stigmatize, discriminate and criminalize people living with HIV undermine effective HIV treatment, care and support. Stigma and shame, as well as fear of prosecution, affect prevention by keeping people from getting tested for HIV or accessing treatment.
Stigma and discrimination, however, are not just legal or governmental issues. They persist across community and cultural norms and affect prevention. The stress that stigma causes can increase susceptibility to illness and disease. Stigma may also make people less likely to disclose their status and deter them from engaging in behaviours that protect them from acquiring HIV. Operating in a person-centred context means that the policies or systems adopted by you, your organizations, your communities or your cultures welcome and include people living with HIV.
We must not only advocate to decriminalize and destigmatize HIV; we must also look at ourselves, our schools, our organizations and our communities to see how open and inclusive they truly are.
The language you use matters. Language shapes your perception, understanding of and connection with the world around you.
All of us have had moments where a word or a sentence has changed how we see ourselves or others. We have all personally experienced the power of language.
Throughout our lives, people living with HIV often experience multiple forms of stigma and discrimination.
Repeatedly hearing dehumanizing language that reinforces stigma, oppression and discrimination ultimately affects the health and well-being of people living with HIV.
Do the words you and your organization choose show respect and compassion for people living with HIV? How well does your language – both spoken and written – reflect people living with HIV as valuable and separate from any diagnosis they receive?
Putting people first means intentionally using terminology that reduces stigma in everything you say, every way you say it. The People First Charter offers a helpful guide on which you and your organization can model your own editorial guidelines.
The HIV response has a comprehensive set of evidence-based tools with which to address the pandemic, from antiretroviral therapy (ART) to pre-exposure prophylaxis (PrEP). And yet, implementation often fails due to a poor fit between available innovations and the people they are designed to serve, the processes they are designed to enhance, and the context in which they are delivered. In this way, the tools often don’t have their optimal impact. There is a gap between the trials and the real-world health systems.
In addition, often the methodologies and processes used in clinical trials are not empathic, treating people as data sets, rather than as valuable individuals.
Putting people first in product design and clinical trials means engaging the communities living with and affected by HIV to identify, design and co-create desirable and accessible tools.
How well do you or your organization co-create with communities living with and affected by HIV when designing trials, products or other tools?
The IAS advocates for multidisciplinary, integrated and long-term focused approaches to care for people living with and affected by HIV. These approaches are responsive to their needs, priorities and preferences and are supported by healthcare providers.
An increasing number of global health actors acknowledge how important it is to put people first in the HIV response. To do this, we must prioritize community- and key population-led approaches to addressing co-infections and co-morbidities. It means that we must integrate a range of healthcare services into HIV services without losing sight of the diverse needs of people and communities living with and affected by HIV. People living with and affected by HIV must also be included in the governance structures of organizations making decisions that affect them.
The World Health Organization has established evidence-driven frameworks to support the full integration and care for all people with chronic conditions, including HIV, at primary and community care levels. These are part of the move away from siloed vertical programmes towards integrating care for other health needs into HIV services, platforms and strategies. PEPFAR’s latest strategic direction1 highlights the priority to better integrate vertical HIV and AIDS programming into local health service delivery infrastructure. The new Global Fund strategy2 calls for resilient and sustainable systems for health that place people and communities, not diseases, at the centre of the health system and work towards achieving universal health coverage.
Reimagining PEPFAR's Strategic Direction - September 2022, Fulfilling America’s Promise to End the HIV/AIDS Pandemic by 2030 https://www.state.gov/wp-content/uploads/2022/09/PEPFAR-Strategic-Direction_FINAL.pdf
Fighting Pandemics and Building a Healthier and More Equitable World Global Fund Strategy (2023-2028) https://www.theglobalfund.org/en/strategy/
Call to action
This World AIDS Day, the IAS will issue a call to action to all organizations involved in the HIV response to closely examine how well their strategies and programmes put people living with and affected by HIV first at all stages of their work.