Sandra Smith, 65, has spoken out ahead of World AIDS Day in the hope her experience could prevent others going through what she did after she went undiagnosed for a decade and nearly died
Image: Andy Commins / Daily Mirror)
When Sandra Smith was told she was HIV positive, it was a relief to finally have some answers.
In the months before her diagnosis in 2019, the 65-year-old had lost three stone and was so ill that she collapsed in the hospital where she was sent for clinical assessment.
It followed years of unexplained symptoms, during which time her blood was taken numerous times – but she was never tested for HIV.
Ahead of World AIDS Day on December 1, Sandra is sharing her story in the hope it can raise awareness around testing and ensure people get the vital treatment they need sooner.
Despite experiencing a number of chest infections and symptoms linked with HIV – such as unexplained night sweats, weight loss, coldsores and thrush for 10 years – she said medics never even considered the virus.
She believes that because of her age, location and not falling into a group with a high prevalence of HIV, medics overlooked the possibility that she could have the illness.
Andy Commins / Daily Mirror)
It wasn’t until July 2019, after being sent to hospital in Harrogate that Sandra, from North Yorkshire, was finally given the answer she needed.
“The doctor told me that I was HIV positive,” she recalled. “I thought he was going to say stage four cancer. It was a relief to know what it was.”
By that stage her condition was so advanced that medics said she needed immediate urgent treatment at St James’ University in Leeds to save her life.
“I was pretty far gone, I was at the stage where it was goodbye,” Sandra said. “They said that within 48 hours it would be critical.
“I was in hospital for the whole of August 2019, they saved my life.”
Sandra said: “I don’t know whether they discarded the idea that I had it, or just didn’t think of it at all.
“I just hope one or two of them went home and had a couple of nightmares.
“If anyone had said to let’s do an HIV test I’d have said yes, by all means. An earlier diagnosis would have made a huge difference.
“If I had stayed at home, I live on my own, trying to live with this illness I could have died. I just don’t know why I wasn’t tested.
“Because of the weight loss I wondered if it was cancer that was being missed.”
She said she hopes her experience encourages medics to ensure patients are checked for HIV.
Sandra said: “I’ve lived in fear that I was going to slip through the net. I’m an example of what can happen, but I don’t want this to be a sob story about me.
“I want to show that GPs should test for everything, it’s only a simple blood test.”
Andy Commins / Daily Mirror)
Sandra, who believes she had been HIV positive for 10 years before it was diagnosed, is now able to manage her condition through medication – although she said the amount of tablets she takes is higher than it would be if she had been diagnosed early.
“I don’t feel like I’m fading away, which is how I felt before,” she said.
Recent highly acclaimed TV drama It’s A Sin, which tackled the emergence of the AIDS epidemic in the 1980s, was a hard watch, Sandra said.
“It shows people dying from AIDS, it was like a blow to the head because to me that’s how I was when I went into St James’.
“It was only then that I realised I’d been living with it all through 2019 and years and years prior to it.”
Sandra now volunteers with HiVitality, a charity which provides retreats for people with the condition to spent time with others in the same position.
“There are people out there that need reaching and need help, this is something that they need,” she said.
Charity the Terrence Higgins Trust, which provides support for people with HIV, said that the delay in identifying Sandra’s condition shouldn’t have happened, and said she was not tested until it was “nearly too late”.
It is campaigning for opt-out testing at A&E departments – meaning blood taken from patients is tested for HIV unless they say no – a move Sandra said she agrees with.
Liz Porter, clinical director at the Terrence Higgins Trust, said: “Sandra’s story is such a sad one and it absolutely shouldn’t have happened. Sandra was presenting with a lot of the indicators of undiagnosed HIV, including unexplained weight loss, coldsores and thrush, and yet no one thought to test her until it was almost too late.
“Sandra’s is an extreme and rare example of incredibly late diagnosis, but the latest data shows that 42% of people diagnosed with HIV are still being diagnosed late.
“Which means the diagnosis comes after damage to the immune system has already begun. This is worst in those aged 65 and over where a shocking 59% of people are diagnosed late. Too often both individuals and health professionals don’t think of HIV affecting certain groups, for example a white woman in her 60s like Sandra.”
Ms Porter said that routine testing in Sandra’s area could have made. a big difference and avoided the health problems she is now experiencing.
She stated: “Routine testing across healthcare is a clear way to avoid this happening to others, alongside educating professionals about HIV and what indicator conditions to look out for.
“If routine testing had been in place where Sandra lives, she would have been diagnosed years earlier with a simple test at her GP and avoided the health problems she is now experiencing. It would also have saved the NHS money and avoided Sandra’s weeks in hospital.
“You can live a long, healthy life with HIV thanks to treatment – but the earlier you’re diagnosed, the better.”
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.