It’s difficult to write about HIV. Sympathy can come across as patronising. New treatments mean that many people with HIV are now fit and working with healthy children and long lives. If you want to reduce stigma, they must not be reduced to victims. You have to acknowledge the darkness without letting it dominate.
This challenge becomes harder when you’re faced with the brutality of the government’s welfare changes. The aim, to get people with HIV back to work, is laudable, but the means are devastating. Government figures show that a shocking 44 per cent of people with HIV who have completed a “Work Capability Assessment” have had their support cut off, and charities warn that it is causing destitution.
It starts with an appointment. HIV patients are seen by a company to examine whether they should be moved from the old system of incapacity benefit to the new Employment Support Allowance. Assessors have no HIV training and fill out the same tick box forms used for assessing all long-term unemployed people. Appointments are squeezed into tiny slots. People are treated with suspicion or boredom. The fact that the claimant got to the appointment is sometimes used as proof they can work. Power has no idea how humiliating it can be.
“We’ve had some alarming feedback about the lack of knowledge on HIV,” says Sarah Radcliffe from NAT, “ATOS [the company that carries out most work capability assessments] are healthcare professionals but by their nature are generic. You can’t expect people to understand. There are cases when someone’s CD4 count has been really low. Doctors say they are lucky to be alive, but assessors find them fit to work.”
The problem is that HIV cannot be boxed in this way. Exhaustion and incontinence are fluctuating symptoms that might not show up on assessment day but make regular working hours impossible. Anxiety and depression are notoriously invisible to private companies who are paid to cut the government’s benefits bill. Peripheral neuropathy – a painful condition that affects nerve endings – affects many HIV patients but can’t be picked up by the simple visual tests of assessors.
Richard has had first hand experience of this. He was diagnosed when he was twenty-three, but he is not a sob story. He is sharp, eloquent and quietly ambitious, working on a placement at the Terrence Higgins Trust. He wants to work full time, not just because it would be nice for his self esteem, but for his material condition.
But turning things around is not easy. Fluctuating arthritis means he sleeps with snack bars and pills by his bed in case he can’t get down the stairs, and there are still days when work seems impossible. Combine that with changes to Disability Living Allowance and Universal Credit, and he feels crushed.
“They are hitting people who are least able to protest,” he says, “I was seen by someone who was not a healthcare professional. The meeting was supposed to be half an hour but it was squeezed into twenty minutes. I had to appeal and there is evidence that items were deliberately lost.”
In a shocking statistic, some 90 per cent of all appeals from HIV claimants at the charity Positive East are successful in overturning these assessment decisions. We all knew appeals against ESA were high, but they seem to be going through the roof for people with HIV. Something is going seriously wrong. Politicians might pay lip service to World AIDS Day, but let’s not forget what happens after that.