With more than 100,000 people living with HIV in the UK, HIV support services are needed now more than ever. But funding cuts risk jeopardising their viability, write HIV campaigners Alex Sparrowhawk and Susan Cole, and could have a devastating impact on individuals, the NHS and social care.
Almost 20 years ago we reached a turning point in the fight against the HIV epidemic, with the discovery of effective antiretroviral drugs. For the first time, people could begin to live well with HIV, but not without the vital support of HIV charities and organisations.
Cuts to HIV support services present a new and foreboding challenge. We need to find our collective voice once more and speak out against them, just as we did when our community came together to demand better treatment.
Being told you have HIV can be one of the most traumatic things someone can hear. Fortunately, HIV support services – usually provided by voluntary organisations – are there to provide much-needed care to cope with such a diagnosis. Well, they are for now. Many are facing potential closure because of catastrophic cuts by local government.
Despite advances in treatment, HIV continues to be a serious, life-long condition, still stigmatised in society. HIV support services are a crucial lifeline, providing essential care and support to people living with the condition, who often come from communities disproportionately affected by poverty.
The range of services offered is vast – from dealing with stigma and discrimination, to advice on safer sex and relationships. They help thousands of people each month, often with invaluable peer support. Public Health England’s Positive Voices survey found over a third of people with HIV accessed HIV support over a 12-month period.
With more than 100,000 people living with the virus in the UK, support services are needed now more than ever. But there’s been a disturbing trend recently, by a number of local councils, to completely cut funding to HIV support services. Without this vital funding, many services will no longer be viable – and the impact will be disastrous.
These support services help people to stay healthy. They prevent ill health, HIV transmission and psychological distress. To cut them is short-sighted and dangerous. Ultimately, it will lead to extra pressure on the NHS and social care, as people become ill and fall into crisis. And the impact from an increase in HIV transmission too.
Sexual health and HIV specialist teams in clinics and hospitals are essential in the care for people with HIV, but they cannot provide first-hand experience of understanding what life with the virus is like. When people receive a diagnosis, the first place they turn to is their local HIV support service. Some people dip in and out when they need support; others engage with organisations, becoming peer mentors or volunteers, even trustees. The most vulnerable in our community might access a range of services provided by these organisations.
Anyone under the illusion that support services are merely there to offer tea and sympathy needs to speak with the people in the HIV community who access them. Service users are likely to be offered a hot drink, but what they take away is a better understanding of how the virus does (and indeed doesn’t) impact their lives. And they witness first-hand people living well with HIV, which is more than just empowering and reassuring – it’s life affirming.
People with HIV have been involved in their own care and services since the virus’s outbreak; it’s embedded in the community’s DNA.
It was innovative actions from people with HIV in the 1990s that turned the tide on the epidemic. We need to resurrect our passion and raise our voices again, before it’s too late. But we can’t do this alone.
We’re a small community and too often this means we are ignored. Stand with us in solidarity against these cuts to services, against the scrapping of HIV support; join us and organisations across the UK, community groups, activists and advocates within the HIV community. Support people with HIV and stop the cuts
Alex Sparrowhawk is a membership and involvement officer at the Terrence Higgins Trust. Susan Cole is a community and engagement officer at the National AIDS Trust.
Follow them, and their organisations, on Twitter: @birdy_tweet @THTorguk @susancolehaley @NAT_AIDS_Trust
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