The Denver Principles 1983, a bill of rights for people living with HIV, called for people living with HIV to be meaningful participants in their care and to be listened to in decisions about their lives.
The voluntary and community sector brings this voice to governments, funders, commissioners, decision-makers, pharmaceuticals and Fast Track City initiatives across the globe. Voluntary organisations recognise the importance of co-production, co-design and are often the conduits for providers to their service users.
If we are to make the goal of ending new HIV cases by 2030 a reality – domestically and globally – voluntary, community and charity organisations need to be valued for what they bring and the impact only they can create.
At AIDS 2024 in Munich, I argued that if we didn’t exist, society would have to recreate us. The HIV voluntary and community sector has five unique contributions to ending new HIV cases by 2030.
Those five special attributes are:
• Centring service users in the HIV response;
• Focusing on the social determinants of health;
• Leading on innovation;
• Challenging the system and wider society;
• Relentlessly focusing on health inequalities and intersectionalities.
While no one group can bring about zero HIV transmissions, I am sure it cannot be done without the voluntary and community sector. However, the network of HIV charities in the UK, and abroad, are under-valued, under-appreciated and under-funded. This. Must. Stop.
National HIV Action Plans need to be worthy of their name. They also must support voluntary and community capacity, and recognising their workforce – paid and volunteer – is integral. It should not be an afterthought.
My recommendations were clear. If we are to end the HIV epidemic at all, let alone by 2030, the VCS needs support. This includes:
• Funding to involve service users in statutory services. If you value it, pay for it.
• Acknowledging that the social determinants of health have a greater role as we near transmission elimination. This is what “leaving no one behind” really looks like.
• Supporting scaling, not stealing, of successful innovation. Too often others swoon in when the VCS perfect the model, often making money out of it.
• Championing our activists and credit their success (including while implementing).
• Mean what you say on health inequalities and intersectionalities – enable the VCS to be partners in your service change.
• Paying overheads and funding full cost recovery – we are cheaper than other providers but not free. If you want to partner, we should not have to go elsewhere for the core costs of the project.
Individually, these are key to ending the onward transmission of HIV; together they are a strategy. Let’s make it happen.
Richard Angell OBE is Chief Executive, Terrence Higgins Trust
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Thank you to the work of Positively UK, Food Chain, George House Trust, Lunch Positive, the Elton John AIDS Foundation, Positive East, National AIDS Trust, Waverley Care, Sophia Forum, CliniQ, Metro, Black Beetle Health, sector colleagues and all my colleagues at Terrence Higgins Trust – past and present – for all the work that made this presentation come alive while being rooted in the UK sector’s successes.
