"Stop talking about the stigma and start talking about the empowerment": a World AIDS Day call to action

Activist Robbie Lawlor wants a cultural shift in how we discuss the disease...

A massive 40% of all people with HIV remain unaware of their status, according to the World Health Organisation (WHO).

To mark World AIDS Day, the WHO have released new guidelines on HIV self-testing to improve access to and uptake of HIV diagnosis.

Diagnosis rates of HIV increased by 30% from 2014 to 2015, according to last month’s HIV in Ireland report from the Health Protection Surveillance Centre.

Former Mr Gay Ireland and HIV activist Robbie Lawlor sees the pluses and minuses of self-testing, stressing that there are two different types available to people.

"It's been found that people are more likely to seek a diagnosis from community-based rapid testing centres rather than those in a clinical setting," Lawlor told Newstalk. "We don't have clinics for nothing. But, in the event that a positive diagnosis is made, people need access to primary acre immediately. You have to recognise the ethical side when it comes to self-testing."

Know Now offer free rapid testing in Dublin, Limerick and Cork. Set up by the Gay Lesbian Equality Network, the Sexual Health Centre in Cork and GOSHH in Limerick, the pilot project is being funded by the National Lottery.

Robbie is currently completing an internship with GLEN and says of the project:

"Our whole goal is for people to get tested, and establish their status as quickly as possible. It's a great initiative." 

'If people can't show their faces, it's perpetuating the stigma'

Living with HIV is a daily reality for many, including Lawlor. He is determined to highlight, however, that a HIV diagnosis is not a life sentence. 

"Once you're on medication, you're undetectable", Lawlor, who's partner is HIV negative, said. "It's one medication a day, that's it."

He identifies the lack of empowerment and dignity granted to those diagnosed with HIV and AIDS as the main stumbling block preventing people from seeking a diagnosis.

"We need to change the perception of living with HIV in a social sense. We need to stop talking about the stigma and start talking about the empowerment. 

"Since the '80s, the HSE campaigns concerning HIV haven't show the people's faces – they've either shown hands or people with their face sin their hands. I find it baffling – if people can't show their faces, it's perpetuating the stigma.

"Undetectable is noninfectious. Those with the disease can live life to the fullest. The Government need to get on top of that message."

Ryan's story

Mr Lawlor was diagnosed in 2012 at the age of 21 during his first successful sexual health check. He'd previously attended St. James's Hospital for a test on two separate occasions, but due to the hospital's ticketing system he did not get an appointment.

"They only allocate 30 tickets a day. One day I was ticket number 31. The other time I was ticket number 32. I could have been diagnosed so much earlier," he said.

Having just completed a degree in Zoology in UCD, Mr Lawlor had planned to travel to Australia with his friends.

His diagnosis, however, meant he could not be granted residency.

"Four years in college meant nothing to me after that," he said.

This restriction has since been lifted in Australia, with Barack Obama removing similar restrictions in the US in 2009, branding them as "discriminatory". 

However, he said that if he were to move to Australia now, he would need to be earning upwards of €100,000 because of the health insurance premiums.

He is on his fourth option of medication, likening it to contraceptive pill for women: "You have to find what works for you". He experienced severe side-effects on his initial round of medication, comparing it to "the worst hangover you've ever had".

Activism

He got involved in activism after his friend received a "stigmatising, horrible" message concerning HIV and AIDS. Working for Youth Stop in the UK, he spoke in schools across the country.

"I realised that I have a story here to tell. That message was motivated by fear of HIV and ignorance, and I can do something to combat that." 

Along the way, he met a HIV-suffered from Uganda, where only two options of medication are available.

"If I had lived in Uganda, I would have had to choose medication which risks failing kidneys and another which lists adverse mental health symptoms as side effects," he said. "I really understood my privilege then." 

To quote Whitney Houston, Robbie Lawlor believes the children are the future. 

"We don't harness them [young people] in sexual health campaign. They have the knowledge, we just need to give them the platform.

"They're the best when it comes to creative action and lobbying TDs."

While he acknowledges the HSE has started drawing up guidelines for making pre exposure prophylaxis, more commonly referred to as PrEP, Lawlor has called this a stalling tactic.

"These kinds of policies can take years to be implemented. We think the HSE might be waiting until the drug comes off patent. That will either be in 2018 or 2020 - we don't know.

"This is massive issue for MSM – we can't leave it until the year after this one, or the year after that. We need to put pressure on the Department of Health.

"If we keep stamping our feet, they will listen."