Leeds man opens up about HIV diagnoses as hospitals reveals plan to test people in A&E
It can be as painless as a pinprick on the end of a finger that could save patients from serious complications in later life.
But while two out of every 1,000 people in Leeds have HIV, an eighth of those infected are unaware, the YEP can reveal.
Today, ahead of national HIV Testing Week, health bosses have announced that the city’s A&E departments will now be taking part in a new pilot to boost diagnoses numbers.
Patients who undergo routine blood tests at emergency departments in Leeds will now also be tested for HIV, Hepatitis B and Hepatitis C as part of the groundbreaking six-month pilot programme.
“If the 13 per cent of people in Leeds who don’t know they have the virus were diagnosed, it would be the end of HIV here,” says James Ward, from Chapel Allerton, who was diagnosed himself aged 22.
Now 47, he lives a healthy life, supports others with HIV and now has “undetectable” levels of the virus, after starting treatment two years ago when doctors finally recommended it following a change in guidelines.
James, who is gay, recalls his diagnoses in 1996, following a routine check-up.
“I was numb really,” he says.
“It was the mid 1990s, before treatment was effective or it was tolerated. At the time people were still getting sick and dying.
“[Princess] Diana was doing her visits to hospitals. It was a very different era.”
Human immunodeficiency virus - or HIV - damages cells in the immune system and weakens the person’s ability to fight everyday infections and disease.
Breakthroughs over the last decade mean that those diagnosed, even in later stages, can now continue their lives with a relatively normal life expectancy, in contrast to public opinion.
When James was first told he had HIV, he says, doctors would only start treatment when the patient’s immune system had suffered enough damage that they were at risk of not being able to fight off the everyday diseases or infections.
But new guidance, adopted by the NHS in 2016 following a major study, now means patients begin immediately.
‘Effective treatment’, as it is known, typically involves patients taking daily tablets that keep the virus at bay, reducing it to levels described as “undetectable” that mean it can no longer be transmitted to others.
“It stops HIV replicating,” James says.
“Because it can’t reproduce, it drops down to undetectable levels and you can’t pass it on.”
He is one of thousands of patients across the country whose treatment consists of two tablets a day and a twice-yearly blood test.
“I’ve had no side effects,” he says. “Now I’m on treatment, the virus is suppressed. I’m completely well, I have got much more energy now.”
James also opened up about his own struggles with mental health after being diagnosed.
“For a lot of people, there is still a lot of stigma, a shame, and feeling ‘dirty’,” he says.
“That’s something that I have experienced. The key to changing that stigma [for me] was starting treatment and becoming undetectable. That was a turning point in my life and it’s why I’m so open now.”
However, he warns that outdated opinions still contribute to stigma.
“It’s a virus that is still very much loaded with stigma and judgement and that’s certainly something that a lot of people experience,” James says.
“But so much of that comes from people’s outdated ideas about HIV: that it’s a death sentence, that you should never have sex with anybody else ever again.” He is urging people to get tested and backed Leeds Teaching Hospitals NHS Trust’s pilot.
“If everyone who had it was on treatment then HIV would be over,” he says.
“The only people who are passing on HIV are people who don’t know they have it.
“If you don’t think you have it and you potentially do, you are transmitting it to other people.”
HIV, and other blood-borne virus’ as they are known, can be passed on in blood or bodily fluids like saliva that can become mixed with blood. For many patients, diagnoses come when they are ill in hospital.
“We can all bury our heads in the sand, but there is no benefit to not knowing,” James says.
“If it’s negative [the test], you can sleep easy.
“If it’s positive, you can start treatment and live a normal life expectancy.
An estimated 89,000 number are living with HIV in the UK, according to Public Health England analysis.
“No-one chooses to expose themselves to a virus like this,” James says.
“It doesn’t matter about your background with HIV.
“HIV doesn’t respect religious beliefs, race or colour, it’s just a virus and it’s worth it for anybody to get a test.”
James also stresses that outcomes are now completely different for modern HIV patients.
“The way it’s looking now is that everyone with effective treatment is going to live a normal life with full health,” he says.
“It’s absolutely not a death sentence anymore.
“Even at late-stage diagnosis you will recover. But the sooner you start the better.”
“It’s a virus that is related to sex and for many people that can make them feel uncomfortable.
“That’s why this message is so important just to normalise testing. It makes sense to get yourself checked every now and again.”
Leeds pilot ‘to give patients better outcomes’
Leeds teaching Hospitals NHS Trust, which runs the city’s St James’ and Leeds General Infirmary hospitals, has now started the pilot testing programme.
Patients aged between 16 and 65 attending emergency departments in Leeds, who undergo routine blood tests, will be provided with testing for Hepatitis B, Hepatitis C and HIV as part of the ‘Get Tested LeEDs’ six-month pilot.
NHS bosses say it will allow quicker access to treatment for patients which often results in better, and even lifesaving, outcomes.
The programme is a collaboration between the trust and US-based research company Gilead Sciences. It is being launched following the National Institute for Health and Care Excellence (NICE) recommendation for routine testing for HIV in emergency departments, in regions of high prevalence.
To get tested for the virus, or for support, visit www.nhs.uk