Diagnosed with HIV at a late stage, a sufferer talks about the stigma still surrounding the condition and the vital importance of getting tested.

BY the time Pete Smith* was diagnosed as being HIV positive, he may have lived with the condition for many years.

Suffering from chronic illness and infection, doctors had considered every possibility for what was causing the middle-aged North Yorkshire man’s ill health when it was finally suggested he should be tested for HIV.

The results confirmed he had the virus and that it was at an advanced stage, with a remarkably low CD4 cell count of 21 – also referred to as AIDs.

“I had every blood test going,” Pete remembers, “My doctor said there’s only one we have not done which is HIV. That came back positive.

“I have had friends that died of AIDs, and at the time I was diagnosed, to be honest, it didn’t bother me. I said to my friend, ‘I have had a fast and furious life, I’m okay.’.

“It didn’t hit me for months, and then I went to pieces, which I’m having counselling for.”

As Pete had been so cautious about protecting himself against HIV, he believes he contracted the virus 15 years ago when he had a piercing.

He is among increasing numbers of people with HIV who are contacting North Yorkshire Aids Action in St Saviourgate, York, for practical and emotional support.

In York and North Yorkshire, there are 165 people registered with HIV who have contacted the charity which is seeing more referrals than ever and had 38 new referrals last year.

Speaking in the bright offices of North Yorkshire Aids Action in York, Pete now appears to be the picture of health as medication has meant his immune system has been significantly bolstered, with his CD4 count in the hundreds.

“The meds are improving me slowly,” he said. It’s made a 99 per cent difference to me healthwise. I have put weight on – I’d got really thin. Without the meds I will die. Without them, my viral load will go haywire and it will kill me.

“If I had been diagnosed ten years ago, I don’t know how the medication would have been. I have been improving week by week.”

But since his late diagnosis, nearly two years ago, Pete has suffered potentially fatal pneumonia and he is keen others avoid complications by being tested early.

“Don’t be frightened and get a test. If they catch it early enough you are better off than catching it when I did. If you don’t get tested it won’t go away – it will get worse,” he said.

Pete – who is bisexual and did not want to be identified for this article for fear of potentially negative reactions to his condition – said he also wants to raise awareness of HIV, which he said in his experience is stilll stigmatised.

“You can tell people you have cancer but you can’t tell people you have HIV. It’s one of those things. You have to be careful who you tell.

“It’s the stigma since the Government did the tombstone campaign in the 80s,” said Pete, who said there is a lack of current publicity campaigns.

“It’s about time people moved into the 21st century. We’re not in the 80s now.

“You are stuck with who you can tell. That’s the problem with HIV – you don’t know how someone is going to react.”

Pete became depressed when he went to a doctor with a chest infection and was treated “like a leper”.

“It freaked me out, the way I was treated and it all clicked in my head. It brought everything to a head,” said Pete.

On his behalf, North Yorkshire AIDs Action made a formal complaint about the doctor and have helped him secure counselling.

At North Yorkshire Aids Action, of the 38 new referrals to them in the last year, 18 were people in their 20s, eight in their 30s, seven in their 40s, four in their 50s and one person in their 60s.

Manager Kathryn Gallon urged people to be tested in order for them to stay healthy. “We support children and families and men and women of all ages and sexualities,” Kathryn said, “If you get tested early it’s not the death sentence it used to be. That’s what scared people off getting tested, but that’s just not the case anymore.”

*Name changed to protect identity


Facts about HIV

• HIV is a virus most commonly caught by having sex without a condom.

• It can also be passed on by sharing infected needles and other injecting equipment, and from an HIV-positive mother to her child during pregnancy, birth and breastfeeding.

• HIV stands for human immunodeficiency virus. The virus attacks the immune system, and weakens your ability to fight infections and disease.

• There is no cure for HIV. Medication, known as antiretrovirals, works by slowing down the damage the virus does to the immune system.

• At the end of 2012, there were an estimated 98,400 people in the UK living with HIV. The majority were infected through sex (41,000 gay and bisexual men and 53,000 heterosexuals).

• More than one in five people with HIV (over 20,000) do not know they are infected.

• About one in every 650 people in the UK has HIV, but the two groups with highest rates of HIV are gay and bisexual men and African men and women, where the rates are approximately one in 20 and one in 25 respectively.

• The World Health Organisation estimates that about 34 million people in the world are living with HIV.

• Patients can now have a rapid test in which results come back in 20 minutes, avoiding a nerve-wracking wait.

A drop-in service will be available every Tuesday from February 3 at North Yorkshire Aids Action at 20 St Saviourgate. You can also phone 01904 640024 for an appointment.

For more information visit nyaa.org.uk