One virus, four lives: the reality of being HIV positive

What does it mean to be HIV positive in the UK today? Patrick Strudwick meets four people living with the virus to find out.

We agree to meet outside Pret A Manger on Southampton Row, central London. Waiting in the distance, through the grimy sunlight and the clatter of lawyers, City workers and literary types – all macchiatos and adrenaline – stands a frail-looking figure, bent over and clutching a walking stick. As I approach he smiles. His name is Hugh, he is HIV positive and he is 35 years old.

What follows is a story we never hear. It is a tale of seizures and brain cancers, of mental illness short-circuiting anti-HIV medication. It is a story, far from unique, that has been sunk, weights tied to the ankles. Meanwhile, on the surface ripples just one notion: that today in the UK – perhaps the best place in the world to be living with human immunodeficiency virus – HIV is nothing more than a chronic, entirely manageable condition.

“It’s all fine now – you just take a pill!” says Chris Sandford, mocking the chorus of voices desperate to convey only the positive about being positive. “I’ve had an MP, a Lord and a GP say this to me in the last month,” adds Chris, who is a patient representative at a London HIV clinic.

In April 2014 the HIV-is-fine-now rhetoric reached its mainstream zenith when Dr Max Pemberton, a psychiatrist and columnist, wrote an article in the Spectator entitled ‘As a doctor, I’d rather have HIV than diabetes’ – his rationale being that “for those with HIV, providing they take their medication, there are very few problems”. The story was quoted in Parliament the following month and picked up by media outlets internationally. It topped off several years of headlines in which ‘cures’ were mooted – even predicted to arrive “within months” – and in which “normal life expectancy” was the resounding message.

Reference:

• Max Pemberton’s article in the Spectator on why he’d rather have HIV than diabetes.
• Information, news and resources on HIV from the UK’s National AIDS Manual.
• Terrence Higgins Trust: online community and information for people with HIV.
• The World Health Organization’s articles, reports and publications about HIV.
• HIV Aware: information about HIV from the UK’s National AIDS Trust.
• A study into the impact of austerity measures on people with HIV [PDF].
• A study of people over 50 living with HIV in the UK.
• Aids at 30 by Victoria A Harden (Potomac Books).