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Positive Lives – a support group for PLWHIV

Did you know that 35% of LGBTQ+ people in the UK never come out to their work colleagues and 18% have been targeted with negative comments in the workplace? 

People living with HIV (PLWHIV) are even less likely to be open about their status.

That’s why Worcester-based team support Russell Cutler founded Positive Lives – a support group for PLWHIV. It’s a private group on Facebook, which had just started enabling members to meet up when coronavirus struck.

“It gives them a safe space where they don’t have the burden of keeping the fact they’re living with HIV a secret,” he said.

“Many people can’t come out to their families because of cultural or religious reasons and that burden of secrecy creates additional mental health issues. Having a safe online space is good but having someone you could meet up with for a drink who understood was even better. 

“I’ve been out and proud since 1989 but telling people about my HIV status in 2014 was hard. I was based at Birmingham at the time and initially I only told my distribution manager. Just hearing the words ‘I’m HIV positive’ come out of my mouth was very difficult. Kester could see I was distressed but he spoke to me very calmly and reassuringly, assured me of confidentiality and gave me some good advice.

“I was worried about telling my colleagues because I thought it would affect our working relationships but I eventually told everyone because I kept slipping up and referring to the HV network as the HIV network. There are only so many times you can nearly die on the spot. 

“But I needn’t have worried. Everyone was brilliant. They were kind and accepting and I got so many gestures of support. The company has also given me all the support I needed. I’ve since transferred to the Worcester depot and have received the same levels of support. There’s a little bit of banter but I think that’s a positive thing because it opens the door to good conversations.”

Conversations like the difference between a positive HIV diagnosis today compared to one in the 1980s and the parallels between HIV and Covid-19.

For many people over the age of 45, the overriding image connected with AIDS was the giant tombstone with the words ‘don’t die of ignorance’ etched onto it. The problem, Russell points out, is that in a society that was more homophobic than today’s the image created unnecessary fear.

“Unlike the coronavirus, the Human Immunodeficiency Virus – to give HIV its full name – is very fragile and dies within seconds of being outside the body,” he explained. “You cannot catch it from kissing, sweat, tears, sneezes, coughs, spit, food, utensils, toilets, towels or water. You also can’t catch it from someone with an undetectable viral load.”

Despite the decades of research, scientists have not yet found a cure for HIV/AIDS. What they have done is found combinations of drugs – Antiretroviral Therapy – that supress the virus so it is undetectable and therefore also un-transmittable, generally known as U=U. There are 27 combinations that PLWHIV can try and Russell is on his third.

“The first gave me terrible side effects,” he recalled, “the second didn’t work but I’m doing well on the third…touch wood. I was undetectable within three months of starting meds.
“Looking back I wouldn’t change a thing. Living with HIV has brought some life changes – I bought a house! But I think it’s also made me a better person.”
Fast facts

HIV – is Human Immunodeficiency Virus, it damages the cells in your immune system, meaning your body can no longer fight infections. Left untreated HIV can become… 
AIDS – Acquired Immunodeficiency Syndrome, which is where the immune system is so badly damaged people get increasing numbers of severe illnesses. People don’t die of AIDS – they die of AIDS-related conditions because infections break down major organs.
Worldwide, since 1981, more than 32 million people have died of HIV/AIDS-related conditions. 
In 2019 there were 38 million PLWHIV globally; 53% were women and 1.8 million were children.
Early diagnosis and adherence to Antiretroviral Therapy means PLWHIV can expect to live a long and healthy life.
Research by the disability development consultancy Luminate found that 21% of people, mostly in the 25-34 age bracket, would no longer be friends with someone diagnosed with HIV/AIDS.