Listening carefully to communities should inform our response to covid-19

HIV spread rapidly among people who injected drugs in New York, USA, in the late 1970s and early 1980s; a period long before the authorities had understood and were responding to this new challenge. The people directly involved in this epidemic were the first to recognise the emerging challenge, even if this did not yet have official labels and diagnoses. It was people who were using drugs who themselves initiated a supply in unused needles and syringes; a core step in managing the epidemic. Widescale official needle and syringe programmes for HIV prevention were not introduced until 1987. This community organisation is estimated to have kept HIV prevalence among people who inject drugs in New York at 50-60%, rather than reaching over 70%. [1]

History is an imperfect, if useful, guide to how we respond to covid-19. Covid-19 is fast emerging and impacts are still unknown. And yet the HIV epidemic offers parallels, even if the timescales and characteristics of these epidemics differ enormously. A crucial lesson from the HIV epidemic: the need to involve communities and build on community action in an official response, is relevant in our response to covid. [2] This is true across society, but especially in contexts of extreme marginalisation and inequality. Such examples of community action and impact are widespread, even if they less often break into the dominant narratives of how epidemics are tackled. [3]

In the UK there is particular concern about how people who are homeless and those using drugs will be severely impacted by covid-19. [4] Official advice to wash hands, ensure social distance, and seek healthcare with certain symptoms can be all but impossible for people who are already excluded from society and healthcare. Necessarily radical measures are being developed and implemented: hotel rooms booked, cohorting, shifts to unsupervised drug treatment. Much is being done and developed with incredible speed and compassion amidst huge uncertainty. [5]

A core dimension of this response is listening to communities. This is about the co-design of services to explore how responses to the epidemic are emerging organically within communities. [6] Epidemics are beaten by government action and biomedical advance, along with how social relations and practices change. [7] For example, social distancing and effective messaging is evolving and adapting through the millions of conversations and mutual aid groups springing up across streets, towns, cities across the UK. This is highly visible across our news and social media. 

What is less visible, reflecting the many inequities in our society, is how people who are homeless or using drugs are themselves managing and adapting—as in New York in the 1970s and 80s. Emerging evidence points to how people with experience of homelessness and exclusion are central to healthcare access for many in “normal times” before covid-19. [8] Such community action by people who are homeless and with experience of it in the context of covid-19 is also surely happening. Core questions are being deal with: how are messages of hand washing being shaped to be feasible and effective? What is useful when water and soap is scarce? How to manage social isolation amidst existing isolation? How are phones and the internet being used? People who are homeless are working this out and sharing knowledge. A challenge amidst the emergency and uncertainty is to listen and to respond to this as well. 

Andy Guise is a lecturer and researcher in social science and health at King’s College London. His research focuses on experiences of homelessness, drug use and urban exclusion. Twitter handle: @andyguisekcl 

Competing interests: none declared.


1]  Friedman, S. R., et al. (2007). “Harm reduction theory: Users’ culture, micro-social indigenous harm reduction, and the self-organization and outside-organizing of users’ groups.” International Journal of Drug Policy 18(2): 107-117.

2] Bekker, L.-G., et al. (2018). “Advancing global health and strengthening the HIV response in the era of the Sustainable Development Goals: the International AIDS Society—<em>Lancet</em> Commission.” The Lancet 392(10144): 312-358.

3] Kippax, S. and N. Stephenson (2012). “Beyond the Distinction Between Biomedical and Social Dimensions of HIV Prevention Through the Lens of a Social Public Health.” American journal of public health 102(5): 789-799.

4] Hamilton, I. (2020). “Covid-19—are we rationing who we care about?” [accessed 24th March 2020].

5]  Story A & Hayward A, COVID-19 Homeless Sector Plan. Test-Triage-Cohort-Care. Summary Protocol modified in response to limited testing capacity. V4 March 17th 2020. 

6] Dr Al Story presentation of above strategy at Pathways conference, 12th March, London. See

7] Kippax et al 2012

8] Finlayson, S., et al. (2016). Saving lives, saving money. How homeless health peer advocacy reduces health inequalities. London, Young Foundation