A BALA man with HIV says he will stop taking his medication and protest outside the Senedd to raise awareness of what he claims is inferior treatment in Wales.
Gary Tudor-Jones, a 49-year-old hairdresser, wants to use his own experience to highlight the standard of care in Wales - particularly in rural areas - compared to patients across the border in England.
He says he will stop taking his life-saving medication and lie down in front of the Senedd in protest if that is what it takes to make the Welsh Government improve healthcare for people with HIV.
“If you live in England you get loads more support," said Gary. "It’s inhumane, I just want my voice to be heard.”
Gary has faced significant challenges accessing care and treatment - a daily medication called Delstrigo - since his HIV diagnosis in May 2023. He claims the Welsh Government is doing little to stand by their pledge of zero new HIV transmissions in the country by 2030.
"They’ve pulled out all the funding, there's no support here," he said. "If you live in England you’re entitled to social work support and everything, here we just get our medication and that’s it.
"I go to an HIV clinic here – it's in a temporary building."
Like all HIV patients who take the correct antiviral therapy, Gary cannot pass HIV on to other people, however in his case the medication has caused severe side-effects.
"I get chest infections every few weeks,"he said. "I’m exhausted and I struggle so much with remembering things now.
"Each person is impacted by their medication in a different way. For some it’s fine, but for many people it can ruin their lives."
Gary recently had to take a break from hairdressing as he became so run down. For him the problem lies in access to treatment and support.
He has to travel for four hours every three months just to collect his medication. Meanwhile he says his nearest support group for people living with HIV is two hours away. Coupled with the side effects it has left him struggling, which is why he is calling on the Welsh Government to do more.
"I've been sending messages to the Welsh parliament, but the responses have been disheartening," said Gary. "I was told that if I lived in a major city I’d have all the support I wanted. It’s not good enough.".
Living in a rural area has added to Gary's sense of isolation.
"There's only a handful of us around these parts, but it’s like we’re totally forgotten," he said.
Gary was diagnosed after he began feeling unwell.
"I felt really ill, I was going to work but was constantly tired and had mouth ulcers."
He proceeded to lose four stone in three months, leading those around him to suspect he was taking drugs.
But it was a home test HIV kit that confirmed his worst fears - he was HIV positive.
"It was terrifying," he said. "I was like, oh my gosh, maybe it’s wrong."
He made an urgent doctor's appointment and had another test that confirmed his result.
“I basically went onto autopilot, you're just trying to appear that everything is fine but on the inside I was literally dying.”
If he continues to take his medication Gary can expect to live a full life and will not be able to pass HIV on to anyone else. Nevertheless, there remains strong social stigma around the illness.
"If I take a swig of somebody’s drink, people won’t touch that drink, it’s like having leprosy in the 1950s - everyone wants to avoid you," he said.
Gary has not told his parents of his diagnosis as he doesn't want them to worry, but he feels that he and others with HIV in rural Wales are being neglected.
"I am honestly considering lying outside the Senedd in Cardiff while stopping my medication to raise awareness because nothing is being done and something has to change," he said.
A Welsh Government spokesperson said: "Each health board is responsible for providing patient care and sexual health services within its area.
"Our HIV Action Plan sets out how we will support those living with HIV and how we aim to eliminate new cases by 2030."
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