Anne (not her real name), from London, is in her 50s. She tested HIV positive at her local emergency department in April 2021 following an opt out test. She shares her story.
“If I became sick or ill, I’d take paracetamol, ride it out, I was always fine. However, this one night my approach wasn’t working and I didn’t really know what was going on.
“You could say I was delirious, sweating, I thought it was menopause related. It became so bad my boys took me to A&E, which I don’t remember. When I came round, I was dazed, confused and in agony. I had all manner of blood tests, a lumber puncture, I was then told I had HIV.
“Had my son not told me this news, I wouldn’t have believed it. I was shocked, how did this happen to me? I was in a loving monogamous 10 year relationship; how could this have happened? Was I going to die, what was going to happen?”
Like many people, Anne’s HIV diagnosis was like an earthquake which shook her to the core. Her first instinct was to run to the safety of home and shut the door, but she had to stay in hospital.
“The staff were brilliant. I started treatment immediately it was amazing and hard at the same time. I kept thinking what could have happened if I’d not been tested for HIV at A&E, who knows what would have happened if it hadn’t been picked up there. I was lucky, I didn’t feel it but I knew I was.”
Anne is one of thousands of people who have been tested as part of a routine blood borne virus (BBV) test, which discretely screens and identifies people living with undiagnosed HIV, Hepatitis B and C. This is particularly important in population groups less likely to access HIV tests or screening via traditional sexual health services for fear of stigma. If diagnosed in a hospital setting, a care plan is put in place almost immediately.
“Routine testing at A&E was a blessing,” says Anne, “I’m alive and well, I have medication which keeps me healthy and stops me from passing the virus on.”
The stigma attached to getting tested
“I know you can get tested in a sexual health clinic, but I don’t want to go there. The clinic is right off the main road, everyone can see you going in there and I know people would talk. The thing is you wouldn’t ever think you could have it. I’m not promiscuous, I was with one person for the last 10 years, why would I think I’d have it? It isn’t the only way you could get it either, the doctor asked if I had tattoos, I have 4, I don’t know if the needle was clean.”
Whilst sexual health clinics provide vital services, Anne’s reluctance to go is shared with many. That’s why testing in emergency departments is so important, it means that anyone who attends A&E and has blood drawn will also get a potentially lifesaving HIV test.
Feeling unwell and missed opportunities for testing
“I never knew I was sick, but it all makes sense now and I can now see what was making me so unwell. The worst thing was the skin. I had shingles 4 times, once in my right eye, I nearly lost my sight. Now I’m on treatment, it’s nearly gone.
Anne thinks it’s easy to be tested as part of the routine opt-out testing for blood borne viruses at A&E.
“HIV is common, many people have it and so many people, just like me don’t know they have it. I would always urge people to be tested especially at A&E, it’s discreet no one knows, what have you got to lose? Nothing! But you have everything to live for.”
NHS England’s emergency department (ED) opt out testing project aims to deliver a significant increase in testing for HIV, hepatitis B and hepatitis C. It will play a crucial part in the government’s ambition to end HIV transmission by 2030. Since April 2022, the programme has already linked hundreds of people to the vital care and treatment needed to help them live happier and healthier lives.
Ian Green, Chief Executive at Terrence Higgins Trust, said: “Opt out HIV testing is already having a big impact in finding people living with undiagnosed HIV, as well as returning many others to HIV care. This innovative and cost-effective approach is so impactful as it reaches people who are very unlikely to test via any other route. That means it is proactively tackling inequalities and benefitting groups who would otherwise only be diagnosed once their health is already significantly impacted. While returning people to HIV care is crucial for ensuring best outcomes for them and preventing onward transmission of HIV. These early results show that opt-out testing for HIV is a crucial part of work to end new HIV cases by 2030.”