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Social Innovation: Case Study 3 – Community HIV Health Services

Mark Walton

We are conducting a research project looking at social innovation, how it scales and how it retains or grows its social impact. Here we look in more detail at the history of the community led response to HIV/AIDS. We’re keen to get feedback on this work as it develops. Please take a look and leave a comment.

As part of our research into how different social innovations have scaled, and how this has affected their social value and impact, we are using five social innovations as case studies. They are: development trusts, community food enterprises, community HIV health services, community energy enterprises and community recycling programmes.

We have undertaken desktop research into each of these innovations, and are now conducting semi-structured interviews with key people working in each field. We are keen to hear from other people working in our case study fields, and with people engaged in social innovation in general. To facilitate this debate, we will be sharing our summaries of each innovation based on our desktop research.

This third case study tackles the history of the community led response to HIV/AIDS. Please take a look at our summary, and let us know what you think in the comments section.

In the early years of the HIV pandemic, misinformation, stigma, and fear of the disease were rampant throughout politics, health services, and the general public. A survey of GPs in the UK in 1987 found 60% were unwilling to treat patients living with HIV.[1] Terry Higgins was one of the first people to die in the UK as a result of HIV/AIDS (1982).[2] A group of his friends, appalled by his treatment before his death, founded the Terrence Higgins Trust (THT), to raise research funds, create awareness of HIV/AIDS and provide direct services such as home help for people living with HIV.[3] Other similar community groups, many rooted in LGBT activism, grew up around the UK to provide services the NHS did not provide. [4]

Since the 1980s, these community groups have led activism around HIV-related issues ranging from palliative care to medical research, and revolutionised sexual health treatment both within and outside the NHS.[5] The Terrence Higgins Trust has become the largest voluntary sector provider of sexual health services in the UK,[6] with an annual turnover of over £13 million.[7] Activism played a crucial part in getting the investment in medical research necessary to produce drugs that mean, with prompt treatment, HIV is now a chronic disease rather than a death sentence.[8]

HIV health services scaling involved both ‘takeover’ [9] (NHS services integrating HIV health services) and ‘organisational growth’ [10] (the growth of THT and its merger with other, smaller community HIV health organisations).  But some have argued the ‘organisational growth’ of HIV health services providers like THT has come at the expense of community activism and involvement,[11] which had been instrumental in bringing down new infection rates in the 1980s.[12]

With new infection rates remaining stubbornly constant amongst gay men[13], and rising in some other demographics,[14] do professionalised services need to re-engage community activism?

This research is funded and supported by the Calouste Gulbenkian Foundation.



[1] The Times, 27/2/87 ‘Doctors Ignorant About Aids Says Trust’ by Martin Fletcher.

[2]  Terrence Higgins Trust ‘How It All Began’

[3] Ibid.

[4] Timmins, Kevin (2005) ‘The Beginning of the Pandemic’

[5] Guarinieri, Mauro and Hollander, Lital (2006) ‘From Denver to Dublin: the Role of Civil Society in HIV Treatment and Control’ in Srdan Matic, Jeffery Lazarus and Martin Donoghoe eds. HIV/AIDS in Europe: Moving from Death Sentence to Chronic Disease Management. Copenhagen: World Health Organisation.

[6]  Terrence Higgins Trust ‘Our Work’

[7]  Terrence Higgins Trust Charity Commission page

[8] Matic, Srdan (2006) ‘Twenty-five Years of HIV/AIDS in Europe’ in Srdan Matic, Jeffery Lazarus and Martin Donoghoe eds. HIV/AIDS in Europe: Moving from Death Sentence to Chronic Disease Management.  Copenhagen: World Health Organisation.

[9] Mulgan et al. define ‘takeover’ or ‘emulation by a more powerful organisation’ as a type of controlled diffusion: ‘Innovators can adopt a deliberate strategy of being taken over by larger organisations’.

Mulgan, Geoff et al (2007). ‘In and Out of Sync: The Challenge of Growing Social Innovations’ NESTA.

[10] Mulgan et al. define ‘organisational growth’ as the most controlled diffusion: ‘where both the nature of the idea, and its application are controlled (i.e. what it is, how it is done and who does it). The medium may be an NGO or social enterprise, community Interest Companies, for-profit companies or the public sector- e.g. the proliferation of new kinds of school. Organisational growth can either be organic or achieved by acquisition of mergers with other organisations.’

Mulgan, Geoff et al (2007). ‘In and Out of Sync: The Challenge of Growing Social Innovations’ NESTA.

[11] Watney, Simon (2000). Imagine Hope: AIDS and Gay Identity. London: Routledge.

[12] D Wohlfeiler (2002) ‘From Community to Clients: the Professionalisation of HIV Prevention Among Gay Men and its Implications for Intervention Selection’ Sexually Transmitted Infections, 78: 176-182.

[14] National AIDS Trust ‘Black Africans’

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