Key populations provide valued contribution to development of new WHO guidelines
In 2020 the global key population networks – including the International Network of People Who Use Drugs (INPUD), the Global Action for Trans Equality (GATE), the Network of Sex Worker Projects (NSWP) and the Global Action for Gay Men’s Health Rights (MPACT) – were commissioned by WHO to conduct values and preferences research within their communities in relation to HIV, viral hepatitis and STI services. This research has been used to inform the development of the new WHO Consolidated guidelines on HIV, viral hepatitis and STI prevention, diagnosis, treatment and care for key populations, launched on 29 July 2022 at AIDS2022 in Montreal, Canada.
To celebrate the launch of these important guidelines for improving the health and rights of the key populations in relation to HIV, viral hepatitis and STIs, INPUD reached out to several study participants from the community of people who use drugs and asked them to briefly reflect on why the key populations values and preferences research is important and what the new guidelines mean in the context of their lives. Here are extracts of their responses:
Why is it important to include the values and preferences of key populations living with and affected by HIV, viral hepatitis and STIs in the development of the WHO Key Populations Guidelines?
“For people from marginalized and criminalized communities it often feels like no one’s really listening to the knowledge we have to offer. Involving key populations in the development of the guidelines was critical to ensuring that lived and living experience was embedded within the guidelines – not just being asked to make some comments after the guidelines are already developed. That happens way too often and it is tokenistic.”
“Involving the community is important for lots of reasons, including that peers are best placed to detect and identify stigma and discrimination. By making sure that the language of the guidelines is stigma-free and non-discriminatory, it establishes the standard we expect from health professionals using the guidelines and providing services. It is a practical way to show why our community must be at the heart of these kinds of processes.”
“Peers are clued into the real world settings of living with or being at risk of HIV, viral hep and STIs, where the clinical meets the real world. We will not achieve the elimination of HIV and viral hepatitis without the valuable perspective, insights, and expertise of peers.”
Do WHO Key Population Guidelines such as these make a tangible difference in the lives of people living with and affected by HIV, viral hepatitis and STIs, including people who inject drugs?
“As a trans person who injects drugs and is living with HIV, I feel empowered through the consultation process to inform the guidelines. I was able to contribute to the global response to HIV, viral hep, and STIs with something much bigger than myself and my work at the community level.”
“We are always talking about ways we can use policies and guidelines like these for our advocacy on behalf of people who use drugs. For example, we can use them to demand better services or human rights, but we can also use them to check against current guidelines, services and programmes and advocate for improvements.”
“Sometimes documents like these can seem far from our everyday lives as people who inject drugs, but if those providing harm reduction and other health services to people who inject drugs are aware of the guidelines and use them, it can really change the way we experience those services by removing some of the barriers.”
The 2016 WHO Consolidated Guidelines focused on HIV, the revised Guidelines will focus on HIV, viral hepatitis and STIs among key populations. Was this shift important in your view?
“The shift beyond HIV to include viral hepatitis and STIs brings a more holistic perspective of the interactions between belonging to priority populations and various risk factors – HIV doesn't operate in a vacuum.”
“A lot can be shared and learnt by collaborating across infectious diseases – at government, community, research, and clinical levels. Issues of human rights, criminalization, stigma, and discrimination all impact HIV, viral hepatitis and STIs. The experience of stigma is a shared experience across the priority communities.”
“Many of us are affected by multiple conditions and experiences and there are so many intersectionalities, as a queer woman of colour who injects drugs, it just makes sense to bring a wider lens to these issues rather than trying to put people into narrow boxes.”
What can be done to make people who inject drugs globally more aware of the new Key Population Guidelines?
“Well, community conversations are always a good place to start.”
“People who inject drugs are highly networked. It's important to consistently and constantly remind people who inject drugs about their inherent worth; we are beautiful human beings that deserve to be loved, have our human rights upheld, and be treated with respect, understanding, and compassion. The guidelines support these key messages.”
Acknowledgement: we thank INPUD for conducting the interviews and writing this article and to the INPUD study participants who generously gave their time and offered their views.